What follows is a day-by-day account of my experiences after being diagnosed with a DVT behind my left knee. For background information and a summary of the first three weeks of my treatment please click here.

Apr 29, 2009

I just returned to South Africa after a lovely ten day vacation in California and appear to be clot-free despite the impossibly long flight.

I had an appointment yesterday with Dr. Barry Jacboson, the director of the hematology department at Wits University and one of the leading DVT researchers, for another opinion on my condition and to see if there had been any recent developments in the field. He said that my current treatment (blood thinners, stockings, diet monitoring, etc.) was adequate and that no additional blood tests were necessary. However, he suggested that I have a upper-body CAT scan to check for potential blockage, which might explain the clotting and then varicose veins in my clot-free leg.

Feb 24, 2009

After the scare in early January, life has improved significantly. I swam in two mile-long "races" and ran 10K as part of a team triathlon with colleagues. Better still, last weekend I participated in a three day, off-road motorcycle riding academy in KwaZulu-Natal province. Needless to say, the instructors were not pleased to hear I had a bleeding disorder (because of the bloodthinners), but I made it through the course with nothing more than a bruised leg and renewed hope of riding back to Munich.

Jan 16, 2009

By now I guess it is safe to assume that I survived the flight back to Johannesburg. Despite some well-deserved criticism for self-adjusting my medication, the increased dosage appears to have dissolved the clot and I'm back in good health.

Jan 01, 2009

I think I had another clot this week. I had the unmistakable pain of a DVT in my left calf for several days. I increased my Sintrom dosage from 4mg to 6mg in hopes of breaking up the clot and was planning to go to the emergency room, if the feeling did not subside. The morning I was planning to go to the ER, the pain was gone and I decided to simply remain on the increased dosage through my flight back to Johannesburg.

Perhaps I should have gone to the hospital, but unless the sonogram showed a massive clot about to break off there is not much for them to do besides put me on more blood thinners. Needless to say, the thought that I developed a clot while I was on the Sintrom nearly put me into a panic for the first time in years.

Dec 06, 2008

I have flown 146,000 clot-free miles this year--thank goodness for blood thinners. I am still living in Johannesburg and have had zero problems since the last clot in July 2007. I have also recently been referred by an MD-colleague to a Johannesburg-based hematologist so he can have a chance at unraveling the mystery of my clotting pre-disposition.

Jul 16, 2008

This is the one-year anniversary of my second DVT/PE episode and I'm doing very well. I have relocated to Johannesburg, South Africa for "a while" and had no problems from the 10+ hour flight. It is lovely here and petting the lions was one of the neatest experiences in my life (I was a little ashamed, though).

The only problem I am having is buying Sintrom. In fact, I have difficulty buying it anywhere outside Switzerland. It looks like I will need to get a local prescription and have it imported. I tried to have a friend in Switzerland ship the medicine to Frankfurt and to eventually have a colleague courier it here, but the package was stopped by German customs officials and destroyed. I am considering switching back to Warfarin, since it is available everywhere, but I am worried about problems during the switchover and possible side-effects.

Jun 16, 2008

I just survived climbing Kilimanjaro (again) and twenty hours of flight; I'm not sure which is more impressive. I had zero problems with my leg and felt significantly stronger than last time.

May 30, 2008

I am about to run out of my blood thinning medication and made an appointment in Germany to get a new prescription, since the last script was only valid in Switzerland. My new doctor said that Sintrom was not legal for sale in Germany, due to its short half-life. He said that for the time being I could import the medicine from Switzerland, since it didn't make sense to change the medication in light of my upcoming trip to Tanzania and the lack of side effects with the Sintrom.

Mar 02, 2008

Except for a snowboarding wipeout that left me fearing massive internal bleeding and my friends giggling, I have had little trouble or worry about my clot over the past few months.

I have also stepped up my trans-Atlantic travel recently with numerous trips back to the US, but have been vigilant--as always--with my in-flight movement and haven't suffered any ill-effects.

Dec 07, 2007

My foot numbness has subsided proving everyone correct that told me I had a pinched nerve and that I should stopy worrying. Bravo.

I continue to have on-again, off-again soreness in my left leg from the clot, but do not think of it often--almost exclusively when I fly.

Nov 09, 2007

I saw Dr. Dussoix at the Geneva La Tour to discuss the numbness in my foot and have an INR reading. He said that the numbness wasn't related to my clot(s), but that he didn't know the cause. Nevertheless, he said that it didn't seem serious and that I should come back "in a few weeks, if it doesn't get better." Not exactly reassuring, but I will try to put it out of my mind.

My INR was 2.74, a little higher than normal, since I added an extra milligram every four days due to my upcoming trans-Atlantic flights. As always, I'm nervous.

11/05/2007

A portion of my left foot, in the same leg as both DVTs, has started alternating between numb and tingling. I am not sure if this is related to the DVT, but it is nevertheless worrisome. I took a "Wisdom of Crowds" approach and asked all my friends what they think it is and the consensus is a pinched nerve. I'll be putting the theory to the test later this week at the hospital in Geneva.

09/09/2007

Tim 1, DVT 1

Less than two months after my second DVT and pulmonary embolism I am nearly back to normal, thin blood not withstanding. Yesterday I ran for an hour and swam with no ill-effects other than an achy leg. I can live with this.

08/17/2007

I flew to and from San Francisco from Geneva last week without any health problems, but I was a wreck the entire flight. I am quite happy that I was able to bring myself to fly again so soon after the diagnosis.

I saw Dr. Hufford, my hematologist, while I was back in SF and he confirmed that my treatment in Geneva was sufficient and that I should continue taking Sintrom until I return to the US at which point I will switch to Warfarin. My INR was a 1.4, well below the therapeutic zone, and Dr. Hufford said to increase from 3mg to 3.5mg per day and to be retested when I return to Switzerland. Dr. Dussoix at La Tour hospital retested my INR yesterday at 2.04 and said to continue with the 3.5mg dose and to be retested in a month. Given the fluctuation, I would like to have my INR tested more regularly and will probably go back in a couple of weeks. I am also working with my health insurer to pay for a Coaguchek machine so I can monitor it myself, not much progress so far, though.

07/24/2007

Despite reduced lung capacity, being 6000 miles from home and a lifetime of anti-coagulation therapy ahead of me, I am doing quite well. I decided that I won't succumb to the depression and anxiety I suffered in 2002 and am pushing on with my life.

I went back to work (self-portrait on my first day back--this is the same number of days out as this one from 2001) at the end of last week and started riding the exercise bike slowly today. I am also planning a week-long trip back to San Francisco in early August--a significant improvement from the two years it took me to fly after the first clot. I'm not sure this is the best move for my physical health, but I know it is the right decision for me.

I was seen at the University Hospital in Geneva for the first week and recently transferred to Le Tour hospital for my INR checks, since it is much closer to where I work. Le Tour also has the Coaguchek machine which can do instantaneous INR checks. Also, the Warfarin-equivalent I'm taking is named Sintrom (pronounced san-trome) and the Lovenox equivalent, which I'm no longer injecting was Fraxiforte.

07/15/2007

I have another clot in my left leg, roughly the same spot as before. I began have leg pain two days ago and went to the ER this morning. After a D-Dimer score of 6000+ they performed a doppler scan of both my legs and found the new clot. Fortunately, the doctors here (I am living in Geneva, Switzerland) spoke enough English to more than make up for my abysmal French and I received excellent care.

I was given a Lovenox-equivalent to self-inject and Warfarin. I think I caught this clot earlier than the last one so they sent me home with instructions to call if there is any evidence of a pulmonary embolism.

Needless to say, I'm very worried, but I'm doing much better than the first time.

06/23/2007

Today was a lovely thirty-second birthday. I was able to escape work for a weekend in Rome with a friend who is living in Paris. I have been traveling a lot for work, but mostly short flights within Europe. Still absolutely no problems with my legs, but every morning I am thankful that everything has worked out so well for me.

05/20/2007

I have temporarily relocated to Geneva, Switzerland, which has brought a marked increase in trans-Atlantic flights. I now nap for brief intervals on the flights despite the fact it scares the hell out of me, but so far I am none the worse for it. I fear that due to my hectic work schedule and general exhaustion I won't feel the phone (my alarm) vibrate and sleep straight through. Nevertheless, I continue to love the travel and my decision "get on with living."

02/03/2007

I am currently sitting in the Washington, D.C. airport, after a red-eye flight from San Francisco. I slept--at the most--ten minutes during the flight and had the all-too-familiar feeling that something wasn't right with my leg. In retrospect, I'm certain nothing is/was wrong, but after five years, twenty pairs of stockings and a lifetime of worry, I'm still haunted by this condition.

06/23/2006

Thirty-one years old today and still going strong. Thank you for all the support.

06/15/2006

First, I apologize to those who have written to which I have not responded. My schedule over the past few months has been incredibly hectic.

In March, I spent ten days touring Egypt and Lebanon and did not have any problems with my legs. This may stem in part from the fact that I so worried one of my travel companions that she rubbed my calves for 90% of the flight.

At the end of May, I flew to Tanzania for a safari in the Sergenti and to climb Mount Kilimanjaro. Shortly after landing, I felt there was something wrong with my leg, but--for better or worse--I was able to convince myself it was nothing. I was also worried that the strain of hiking 100km at altitude would cause problems, but I successfully summitted the mountain (wearing compression stockings, of course) and may have finally convinced myself that I beat DVT.

12/18/2005

Unbelievably, it has been four years since I was diagnosed with a DVT. I have had absolutely no problems in the past several years and have even regained my premiere status on United Airlines. The only lingering effects are an unsightly pair of compression stockings and a much improved perspective on life. Shortly after my diagnosis in December 2001 the thought that my health and life would turn out so well did not even seem possible. If you are suffering similarly, don't give up hope.

07/20/2005

All in all, my legs are in great shape. I competed in a 10K run last weekend sans stockings and swam in the Iowa Games without issue. My only concern is that my varicose veins have worsened slightly in both legs. At this point, I'm inclined to believe that my varicose vein problem stems more from excessive weightlifting in high school and college than a vein disorder.

03/29/2005

Once again, no news is good news. My legs have given me virtually zero trouble over the past eighteen months, but I am still wearing the compression stockings on a daily basis. I have also been on numerous international flights, including a sixteen-hour flight to India. My varicose veins have not worsened and I have been able to participate in all manner of sports without incident.

09/14/2003

My legs have shown steady improvement over the past eight months. I began playing both basketball and racquetball again this summer and have had few, if any, ill affects from doing so. When I started playing I wore the compression stockings, but after a few weeks I tried playing without and couldn't tell the difference.

I am still having serious varicose vein problems in both legs and I'm not sure if this was caused, or merely exacerbated by the DVT. The veins are getting larger on a weekly basis despite the fact that I wear the compression stockings whenever I'm not exercising. Some days I wonder if they are actually doing harm since I had no problem whatsoever before the DVT.

My Mom's DVT has more or less been dissolved, but she is still taking Warfarin. It appears that she will be on the medication for the rest of her life.

02/25/2003

In this case, no news is good news.

My Mom's is still recovering from her DVT in September 2002; progress has been steady with few complications. Her doctors are still unable to pinpoint a genetic or environmental cause.

My health has also seen constant improvement over the past several months. I am now able to exercise without the compression stockings, including biking and running. I do, however, still wear the stockings during the rest of the day. At work I ambulate once per hour and the only time I experience any discomfort is during lengthy meetings. In fact, most people at work now take my rising to stretch as a signal that a meeting has run long.

After fourteen months I still worry about developing another clot, but much less. Since I was able to take off the stockings when I exercise I have felt that my life was truly back to normal and I'm incredibly thankful.

09/09/2002

Bad news.

My Mom was admitted to the hospital today with a small DVT in her right calf (the 1999 DVT was in her left calf); there is no indication of pulmonary embolism. Hopefully this time they will do all the bloodwork necessary to test for genetic conditions.

Needless to say, I'm worried sick for her and again convinced that there is a genetic link.

09/04/2002

At the repeated suggestion of family and friends I have been making an effort to focus on other areas of my life, and part of the program has been to keep my online whining to a minimum.

My left leg still continues to ache, but I have had two or three days where the pain was hardly noticeable. It still turns red when I have my stockings off to shower, but there is virtually no swelling.

The varicose veins in my right leg continue to be problematic. My right thigh, where they are worst, aches much of the day and at night when I'm not wearing the stockings much of my right calf aches.

Today was also my follow up appointment with the vascular surgeon, Dr. Lampert. In particular I wanted to talk to him about how much and how long I should be wearing the stockings, what the prognosis was for my DVT, surgical options for the varicose veins and his opinion on when I might be able to fly again.

He said that it wouldn't do any harm to continue wearing the stockings all day (I don't wear them at night), but if I wanted, I could try removing them for half a day at a time to see how my legs reacted, both in terms of pain and discoloration. When I told him that my left ankle felt like it filled with blood when I didn't have the stockings he said that was common and probably a good reason to keep wearing them. He did reiterate that I should wear them anytime I'm sitting with my legs bent for an extended period of time (work, car, train, etc.). Apparently, there aren't very many options for the varicose veins. He said the only standard procedure currently is vein stripping. He also said that my condition was serious enough that it would be certainly be covered by insurance and that I could have it performed anytime in the next couple of years -- when I can't tolerate the pain any longer. He said the surgery wouldn't be complicated by waiting and that there was a low risk of developing DVT from the procedure.

The big question -- flying. He said that within the next couple of months a short flight would be acceptable, but not without risk. When pressed, he laughed and said that a four hour flight would probably be preferable to a forty-hour train ride. I asked if I would need to anti-coagulate with Lovenox or Warfarin before flying and he responded that I should take one 81mg aspirin a day for seven days before flying in addition to frequent ambulation and compression stockings. I'm still having nightmares so I don't know if this is going to happen anytime soon.

When I was leaving he said "I don't want to see you again."

During the examination he had me stand without the stockings on and he said that my leg "as good as can be expected" and that he was pleased that I was back to an almost-normal workout regimen.

I was nothing but smiles the rest of the day.

08/09/2002

Feeling really good. I hope it lasts.

08/08/2002

I felt a small flutter in my chest at the gym this morning and didn't care!

I received hard copies of my blood test results from Dr. Hufford. The most interesting were my Protein C and Protein S readings which where 94 (acceptable range 60-180) and 91 (acceptable range 70-150) percent of normal respectively. Also, the Antithrombin activity test showed 116 (85-121 normal). Cardiolipin Ab IgG was <12 (normal) and Cardiolipin Ab IgM was <10 (normal). Factor V Leiden was negative. Factor II Mutation was negative. Homocysteine was 6.3. Lupus Anticoagulant was not detected.

08/07/2002

I apologize for the slow updates. Pacific Bell is still horsing around with DSL at our new apartment so all Internet traffic (five computers) is being routed over one 56K modem making it cumbersome to upload this 120K (yikes) document. Hopefully we will be connected by this weekend.

I have begun to consider the fact that my DVT was caused solely by the plane flight and that in all other aspects I'm a healthy twenty-seven year old. I doubt this will stick.

08/06/2002

I received a message at 4:30pm today from Dr. Hufford that all my blood tests came back normal!

I, as usual, was unable to accept the good news at face value and immediately began to wonder what strange clotting disorder will soon by known has the "Hentzel Deficiency" or somesuch.

08/05/2002

I took the 5:25am Amtrak from Sacramento to the city of San Francisco this morning. I was exhausted after only four hours of sleep and was unsuccessful fighting off sleep during the trip. Luckily, I had my own seat and was able to stretch out moderately well.

I walked from the CalTrain station to the gym and worked out. After that, I walked over !@#$%^& Potrero Hill to our new apartment. My left ankle felt like it was swollen to the size of a football when I got home.

08/04/2002

I went kayaking this morning on Lake Natomas. I ended up going with just my stockings and they got soaked (this ended up a bit slimy the rest of the day). After an hour I realized that I had hardly moved my legs and that my left was completely asleep. I ended up sprawling (as much as one can in a kayak) out and jerking my leg around until it came back to life. Surprisingly, my back hurt much worse than my legs.

I made dinner this evening with *gasp* no stockings on. This was the first time other than showering that I have been upright and not wearing my stockings. My left leg was good and red after ten minutes. I don't think I'll be trying that again soon.

08/03/2002

I hiked several miles this morning around Lake Natomas in Sacramento, including some moderately steep inclines. My legs didn't cross my mind at all except for the sweat gushing into my stockings.

I also took advantage of the lounger built into Shannon's couch -- it was absolutely fantastic. I recommend it highly to anyone who needs to keep their legs elevated. I did feel a bit lazy after collapsing on it for hours, though.

I worked out the World Gym in Citrus Heights this evening for the first time and nobody mentioned by stockings, but I did catch a few gawkers.

08/02/2002

I went to Shannon's family reunion today in San Jose and was able to drive the sixty miles without stopping (probably should have...). It didn't ache at all until the last fifteen minutes of the drive. Later that evening, on the way from San Jose to Sacramento, I had to sit lengthwise on the back seat to keep my leg in working order. I was worried that I had overdone it in the car, but nothing like the panic attacks from this Spring.

08/01/2002

Uneventful day working and recovering from the move. Some "ankle-swelling" pain in my left leg much of the late afternoon and evening. Earlier today I thought that my left leg was looking more swollen than usual and I can see what appears to be the start of varicose veins on my left (DVT) leg.

Except for occasional varicose vein problems my right leg has been feeling great.

07/31/2002

Completely finished with the moving, cleaning and patching gouges in the hardwood floor.

Both legs have been feeling good save for some varicose-vein aching. Fortunately, the move-related commotion has kept me from stewing about the results from the blood test.

07/30/2002

I moved Rob's spine-bending boxes of books (you're supposed to use the small boxes!) to the new place for the better part of the afternoon. My leg only bothered me when I was riding in Doug's Cooper-ish cab of Doug's truck.

The power was turned on in the new apartment today. Yay!

Still no results from the parasite testing.

07/29/2002

I met with Dr. Hufford, my hematologist, this morning to discuss the second round of blood work. Initially he said that I should only be retested for the conditions affected by the Warfarin (Protein C and Protein S deficiency), but he relented after I explained my anxiety from the earlier test and he wrote and order for the full panel.

Due to the complexity of the draws I had to go to the main facility (in the same building) instead of Hufford's private lab. The blood draw required seventeen tubes and the technician kept asking me if I was "okay" as did another technician who walked by. That said, I have been waiting eight months for these tests and a bit of squirming didn't seem out of place to me. I do think the technicians at CPMC have slightly better bed-side (plastic-chair-side?) manner than those at St. Luke's. Not once did she say "Wow, seventeen tubes, you must be in really bad shape."

I should have the results in two weeks.

07/28/2002

In anticipation of my blood work tomorrow my mind kept flicking back to the earlier results and the false positive for Lupus Anti-coagulant (which seems like one of the more severe conditions) and I felt panicky on and off during the day. Luckily, Shannon was down for the weekend and helped divert my attention.

07/27/2002

More packing, cleaning and moving. No problems whatsoever; and no, I'm not just suppressing them.

I moved into the new apartment today.

07/26/2002

I spent the day packing and cleaning to prepare for our move from Utah Street. I felt as though I tired quickly; something I hoped would pass now that I'm no longer on Warfarin. On the other hand, moving stinks and it's quite possible I would have been tired and frustrated by the ordeal without the DVT.

I cut myself shaving this morning and was thrilled that no one cared!

07/25/2002

I saw Dr. Moskovitz for a follow-up this morning for both the DVT and my parasitic infection. The latest results from the parasite testing weren't available yet, but he did say that either way I would need to be tested again in a few months. As for my chest pains, he said that no doctor would ever want to miss a PE, but he said that since I've been "having them" for so long that something more serious would have come of it. He added that in his experience when someone suffers from a PE they "know" they are very sick and don't sit at home wondering if they should make a doctor appointment. He had nothing to say about my varicose veins.

Officially one month since I stopped taking Warfarin.

07/24/2002

I fell of the wagon a bit this morning at the gym. I had pains in my chest while riding the bike, but I was able to work through it mentally and finished the workout.

07/23/2002

So far, I have been fairly successful not thinking about by leg and chest. I haven't had any anxiety attacks and have been feeling quite good overall. My only complaint of late is the pain while working at the computer.

Hentzel.com has been successfully relocated to a hosting provider.

07/22/2002

I am thankful to live in San Francisco, home of cold, foggy summers, I wouldn't be able to bear wearing the stockings in any warmer temperatures.

In preparation for the genetic testing next Monday I plan to solicit the newsgroup as to the genetic tests others have had performed to ensure that my panel is complete as possible.

07/21/2002

Both ankles feel like the are swollen much of the time in spite of the compression hose. Not a big problem, but I think somewhere in the back of my mind the thought that someday I may be free from the stockings had crept into my consciousness.

07/20/2002

Probably the most frustrating issue currently is my leg aching while in an automobile. Driving around town today my leg began hurting just minutes into the drive. I am also apprehensive about riding the motorcycle due to the bent-leg riding position.

Good workout at the gym.

07/19/2002

Not much to report. I am doing moderately well ignoring the discomfort in my chest and legs and, so far, I feel better for it. I had another strong workout at the gym today and am starting to feel like my (old) self again.

I also picked up the parasite test kit today from St. Lukes and the same technician who caused me grief saying that I wasn't bleeding much on Warfarin expressed that I must have something horribly wrong with me to require six days worth of samples. Methinks he needs a new profession.

07/18/2002

Only one chest pain incident today.

My workout today was great, and my leg didn't ache much while working at the computer today. I have decided to wait on making an appointment with the vascular surgeon for a few weeks since my leg has been feeling slightly better.

07/17/2002

I was back at the gym for a full-fledged workout this morning and I felt really good.

I helped Shannon pack the last few things this evening and saw her off; leaving me quite sad and a bit apprehensive about losing my most caring supporter.

07/16/2002

Late morning I left for Sacramento driving Doug's truck loaded with Shannon's possessions. Despite the contortionist driving position my leg didn't act up and we only needed to stop twice (it is only 100 miles...).

After an excruciating afternoon moving a queen-size futon into her room (we had to carry it inside, up the stairs, through the master bedroom to the 2nd floor deck, along the deck, and back in her sliding glass door) in 100+ degree weather my legs were aching and unbearably hot, but we managed to get everything inside. The drive home went smoothly and for once there wasn't traffic on the bridge.

My attempts at worrying less about my leg were semi-successful -- I didn't have any chest pain induced anxiety attacks.

07/15/2002

I apologize for my slowness updating the weblog. I'm moving at the end of the month and am in the process of moving the files to a different webserver since it is currently being served off my DSL connection.

I went to "try-out" a new general practitioner today since I was concerned that my current PCP wasn't investigating a more systemic cause to the deluge of health problems I've had. I saw Dr. Daniel Roth at the California Pacific Medical Center's Pacific Campus. In short, he said that he thought I was receiving appropriate care from the hematologist and vascular surgeon for my existing DVT and that the chest pain, shortness of breath, etc. that I have been feeling were psychosomatic. He didn't feel any additional action was warranted until the results of my upcoming blood test were known. On his (and countless others) advice I'm going to make a concerted effort to think/worry less about my legs, chest and head.

I did a cardio-only workout at the gym today since I spent the afternoon loading boxes into the truck for Shannon's move to Sacramento. My leg felt good all day, probably due to the semi-continuous movement.

07/14/2002

I have been Warfarin-free for two weeks today.

I was back at the gym this morning and did fifty minutes of easy biking and a short shoulder workout without issue.

Not as much chest pain today, but the legs seem to be getting worse. I will probably make an appointment with the vascular surgeon tomorrow to discuss.

In semi-related news, my personal notebook computer -- an old Compaq Armada M700 -- has officially died. This is particularly sad since I spent countless hours on it while I was confined to my bed researching DVT and emailing friends and family.

07/13/2002

I spent six hours today helping Shannon purchase a futon off craigslist.org. Most of the time was spent stuck in Bay Bridge traffic in Doug's cramped Jeep Commanche (I really wish I had a picture of this, but Rob still has the camera in Europe). Just past the toll plaza my leg felt like it was so full of blood that I thought it was going to burst. Needless to say, there wasn't any place to get out and stretch.

Between my chest and legs I felt so lousy that I didn't go to the gym today; almost certainly exacerbating my problems.

This next bit is a bit hard to explain, but I'll give it a try. Recently I have felt shockwaves pass through my entire body. It feels much the same as the hypnic jerk experienced as one falls asleep. Mine, however, occur throughout the day, most often when I'm in a relaxed state (no, I'm not falling sleep). It doesn't usually cause a physical jerk, but my vision is blurry for a few seconds. Anyhow, I have no idea why this is happening, but I figured I should record it in case I die suddenly.

07/12/2002

I drove to and from Sacramento today and my left leg ached significantly despite frequent rest stops.

I continue to have pain in my chest and it feels as though the pain in my left leg is worsening. I am also having headaches at night (I guess they weren't caused by Warfarin...).

07/11/2002

This morning I made an appointment with a new family practice doctor, Daniel Roth. My hope is to find a doctor that is more willing to listen than my current PCP. I have also decided to wait for his opinion before seeking a pulmonary specialist.

This morning I felt so lousy that I didn't make it to the gym; which, in turn, made me feel worse throughout the day. At this point, I can't decide which came first, lounging around or feeling crappy. I ended up going to the gym in the evening and riding the exercise bike slowly for fifty minutes.

Seven month DVT anniversary.

07/10/2002

Continued pain in my chest and the middle of my upper back. I have started researching the signs of PE on the Internet again and am planning to self-refer myself to a pulmonary specialist tomorrow.

I never felt there was a reasonable explanation offered as to why I have had continued headaches, upset stomach and chest pain given that I was in "perfect" health one year ago.

07/09/2002

My chest pain was more frequent and pronounced today. I did very little besides workout in the morning. I also feel like I have trouble breathing, but it may just be anxiety.

I seem to have reverted to the same mental, and possibly physical, state I was in several months ago.

07/08/2002

I had a strong cardio-workout this morning and less-frequent chest pain during the day. I didn't ambulate enough while working at the computer and my left leg ached severely by mid-afternoon.

Shannon commented today that I have been in a better mood since discontinuing the Warfarin. I still feel grumpy.

07/07/2002

Today it's the pain in my lungs making me crazy. I would like to talk to a pulmonary specialist to get a better idea of what a PE feels like. I have on-again off-again pain all day in my chest -- not severe enough that I grab my chest and collapse, but they are often sharp and last for several minutes. My upper back has also been hurting and I'm not sure if it is pain from the back of my lungs or muscular from spending more time than usual in bed. Massage doesn't affect any change in the condition.

I was hoping riding the exercise bike in the morning would provide a good barometer for my pulmonary-health since I have well established workout capacity and heart-rate targets. As it turns out, my normal routine wasn't harder than normal and didn't cause additional pain; so, either it wasn't such a good measure or my lungs are okay.

07/06/2002

Today was worse yet. I had a stomach-ache and headache in addition to the nearly constant pain in my leg and chest. I missed the gym today for the first time in several weeks and spent most of the in bed.

The continued head-ache and general ill-health is starting to wear on me. I'm starting to imagine that some cancer is invading my body (don't forget, DVT can be a sign of advanced-stage cancer!) and my health is slowing giving-way.

07/05/2002

More aching in my left leg today and pain in my chest. I was worried all day and aside from work and the gym I spent most of the day with my legs up. I'm starting to visualize small clots showering into my lungs again.

The compression stockings are almost unbearable in the heat.

07/04/2002

After swimming this morning my left leg was much redder than usual. More than likely it's because I was exercising without the compression stockings (I don't swim with them...), but it was disconcerting nonetheless.

07/03/2002

I'm still having the same problem with my ankles and both legs are aching quite a bit. I have found, however, that much of the pain in my legs is coming from the front the outside of my leg and does improve if I massage it. Varicose veins haven't worsened, but are still painful.

Today was my last dose of Yodoxin (anti-parasite medication). My stomach has been upset, a side-effect of Yodoxin, for the past week so I'm glad to be done with it. I'll be re-tested next week to make sure they are gone.

No chest pain worth mentioning today (is it ever?).

07/02/2002

Both my ankles have begun to ache and feel like they are swelling in spite of the compression stockings. This is of particular concern because it had never happened before I stopped taking the Warfarin. The pain can often be alleviated by elevating my legs and removing the stockings. I wonder if it's possible that stockings are constricting the blood flow to feet in certain positions.

I only had one chest pain incident today; again, it was right after working out. The calves on both legs have also been aching, but the left is definitely worse. I'm going to try and hold out for another week before deciding whether or not to ask for another scan.

I have been Warfarin free for one week today.

07/01/2002

I had pain in my chest this morning after working out, not very bad, but it lasted a long time and was helped along by my own anxiety.

My Mom called this evening to remind me that being able to exercise daily was still more than many people could muster so I shouldn't be so mopey. As usual, sound advice that I probably won't be able to heed.

06/30/2002

I spent the day stewing about my legs and chest. On and off I felt like I was having trouble breathing, but it didn't affect me as much mentally.

The only big news of the day was that I removed my medic-alert bracelet for the first time. From what I have read, the Warfarin should be completely out my system now (five days later) so I really wouldn't need them to shoot me full of Vitamin-K were I to be in an accident.

I'm debating whether or not to purchase a second one that indicates only that I suffer from DVT such that if I collapse somewhere the EMT will consider pulmonary embolism as a possibility.

06/29/2002

I spent the day feeling like a clot was developing in my calf and slowly growing up my leg into my groin. Then I imagined this new, flous part of the clot breaking loose and rushing into my lungs. I felt short of breath constantly and at one point had to quit what I was doing and lay on the bed for a half hour to calm down.

After I finished riding the stationary bike for forty minutes today I stretched for a few minutes. While stretching I developed serious pains in my chest and went to the locker-room and collapsed on the bench for fifteen minutes. I felt slightly better at the point and was able to complete an additional hour of lifting.

It frustrates me (and those close to me) that I'm constantly aware and in fear of another clot.

06/28/2002

I drove with Shannon to Sacramento today and my leg started to hurt almost immediately after we started driving. This worried me quite a bit because it used to take 20-30 minutes before my leg ached in the car. In my mind, I can feel my now Warfarin-free blood building up against the partial blockage in my leg and clotting. Throughout most of the day I felt out-of-breath and had intermittent chest pains. I have no idea anymore if this is something serious or just anxiety.

Hopefully tomorrow when I try to ride the exercise I will have a better idea if my lung capacity seems reduced.

06/27/2002

Well, the Warfarin-free neurosis is in full swing. I seem to have a acquired a bit of a chest cold in the last few days (what is wrong with my immune system?) and I am having a hell of time telling myself that the pain in my chest is not a pulmonary embolism. So far, however, I haven't run back to the hospital asking for a VQ-scan.

Both legs seem to be aching more, but not enough to convince something is wrong (heck, I probably still have quite a bit of Warfarin in my system). Also, the varicose veins in my left leg were acting up. It seems to me that the varicose veins are getting slightly worse in my right leg. I'm also a paranoid because at the doctor office there were several pictures of people with very severe varicose vein problems (big ropey, veins encircling their entire leg). I did, however, read that there are several new treatments that seal the vein using lasers (do you remember in Austin Power's when he said laser?) instead of the traditional stripping method. I also read into some of the causes of varicose veins and it said that other than congenital factors they can be caused by both prolonged sitting and standing -- not very encouraging. The only one that seemed in any way to apply to me was heavy lifting since during my collegiate years I participated in some ridiculously heaving (500+ lbs) squatting work outs.

06/26/2002

Since the onset of DVT I have started to think of myself as an unhealthy individual and take every ache, pain, cough, sneeze or parasitic infestation to be yet another serious affliction rather than a break in my heretofore healthy existence. Unfortunately, I expect that it will take years of relatively good health to restore my original outlook.

I have decided that the best outcome of my genetic testing (assuming I ever stop taking the Warfarin :) is that I will have a slightly low Protein-C or Protein-S reading. Low enough that under the right conditions, such as a plane flight, it could cause DVT to occur, but not so low that long-term anti-coagulation therapy is necessary. I consider this a better outcome than one which is completely normal because it would serve as a reasonable explanation. Plus, it would also rule out me having Lupus Anti-coagulant mutation.

This afternoon I saw Dr. Lampert to evaluate my leg once more before discontinuing the Warfarin. He examined both legs and as always graciously answered each of my questions (I always bring a computer-printed list). In essence, he said that long term anti-coagulation therapy was not without risks and that the only way to determine if that was necessary was to discontinue the Warfarin and see what, if anything, developed. So, despite my significant apprehension I have decided that yesterday will be my last day on Warfarin (hopefully forever).

I had a difficult time getting to sleep and was constantly worried that my legs were too bent. I also started measuring my calves in hopes that I will be able to detect any swelling immediately.

06/25/2002

The chest pain was back again today, but not for as long as yesterday. Shannon has urged me to "have it checked out" and I agree that would be a prudent course. That said, I'm hesitant to go to the doctor complaining of chest pains because after one negative (negative as in good) VQ scan they seem to have written off my complaints as anxiety or muscle related.

My right calf ached again shortly before bed for the first time in several weeks. I have also been wondering if the extensive varicose veins in my right leg were caused by an earlier DVT in that leg that somehow dissolved itself.

06/24/2002

I had a bout of chest pain this morning that lasted fifteen minutes, much longer than usual.

The pain is worsening when I work at the computer and ambulating only makes the pain go away while I'm walking. There is no marked difference when I return to a seated position.

06/23/2002

Today is my twenty-seventh birthday -- I certainly hope this year is better than last.

No major problems today; but then again, I spent the day lounging on the beach and riding my motorcycle.

06/22/2002

More aches from sitting at the computer. The pain itself isn't bad, it's more the worrying about another clot forming while I'm sitting that eats at me. In general, I guess that's the point I'm at with the entire issue. It has resolved itself such that I can lead a normal, albeit careful, life -- much as I did before the incident -- but I am in constant fear of developing another clot/PE.

That said, I do plan to discontinue Warfarin therapy shortly and will be grilling Dr. Lampert this Wednesday on how to detect a DVT early-on. If things go well, I will probably be stopping this Wednesday.

I worry at night that I'm sleeping with my legs at an angle conducive to clot formation.

06/21/2002

Minor aching and swelling today while working at the computer.

Another three people have weighed in on the side discontinuing the Warfarin. The current tally is nine for and one against (that would be me).

06/20/2002

Both legs felt good all day.

My general practitioner faxed me the name of the remaining parasite, Blastocystis hominis. Nowhere could I find any correlation between that and any type of clotting disorder. Based on my reading, though, I can honestly say that I hope to never have irritable bowel syndrome -- it sounds miserable.

06/19/2002

The DVT-related aching in my left leg was much diminished today, only to be replaced with varicose vein throbbing.

The swelling and redness hasn't improved much in the last month, indicating there is still a significant blockage. I'm concerned that the blockage disrupts the flow of blood enough to encourage pooling/clotting, a tendency that is held in check only by my elevated INR.

06/18/2002

At the gym this morning I met a guy approximately my age who also suffered from severe varicose veins. I think it was somewhat reassuring for both of us to meet someone else in otherwise good health (er, aside from the DVT) with the affliction. That said, in retrospect I'm not sure why it was reassuring. He related that his doctor said they were most likely caused by working as a waiter for years.

In the afternoon I called Dr. Julie Hambleton, a hematologist at the UCSF Medical Center, regarding a DVT study I heard about. The study is investigating the efficacy of low-dose Coumadin (INR 1.5-1.9) in preventing recurrent DVT. It is a blind study with half the participants given a placebo. I should be receiving more detailed information next week.

During my conversation with Dr. Hambleton she said that the only genetic condition that would preclude someone from participating was Lupus anti-coagulant since those so afflicted need to be on a full Warfarin dose. Not surprisingly, this reminded me that on the results from my genetic testing it showed that I initially tested positive for Lupus anti-coagulant but the confirmation test was negative. So, I have now started worrying that I have the worst of genetic conditions. I wish I knew if the confirmation test was the same as the first one, such that my results would have been one for and one against; or rather it was a more detailed/accurate test to make sure for all time (wouldn't they do this all the time?). I, sadly, suspect it is the former.

06/17/2002

The aching is back. My lower left leg and ankle hurt most of the day; worse than it has in weeks.

Still taking the Warfarin.

06/16/2002

I'm still taking the Warfarin in spite of increasing pressure from Shannon.

Both legs have been functioning well; in particular, I've noticed that I can sit for longer spells at my desk without aching.

I'm becoming fed up with the stockings as SF heats up, plus they limit my ability to go to the beach, etc..

06/15/2002

Minor aching in left leg throughout the day.

I'm still unable to stop taking the Warfarin and I'm not sure if I can have my INR tested since I should be done with the medication (three weeks since last testing).

I received mail today from Aetna (my insurance company) that they weren't going to renew our existing plan and that we'll have to switch to an HMO-based plan (we currently have PPO) in October.

06/14/2002

This morning Rob asked me what my leg felt like during the onset of DVT. Apparently, he has been having pain in his calf recently. In the end, his symptoms seemed dissimilar enough to rule out DVT, but it was unsettling nonetheless.

For probably the first time in history, someone (at the gym) was fooled by my flesh-colored stockings and thought that I was now bandage/stocking-free.

06/13/2002

I picked up the Yodoxin at Walgreens and started my new anti-parasite regimen. I spent twenty minutes talking to the pharmacist to confirm that there weren't issues taking Yodoxin in concert with Warfarin (the other customers were thrilled with this).

Er, you may have noticed that I'm still taking Warfarin despite all three of my doctors concluding that I should cease taking it when I returned. I'm terrified of a second DVT and am not quite ready to cast away my protection at this point. I hope to stop the Warfarin when my current supply is exhausted in about two weeks.

I Aimed with Emily, Rob's girlfriend, this evening about the possibility that the parasites could have affected my liver (which produces clotting agents). I plan on calling Dr. Moskowitz tomorrow to identify which parasites I have. She also thought that I may have contracted the parasites from sushi.

06/12/2002

Ugh. I'm never riding on the train again.

06/11/2002

Another mind-numbing day on the train. I passed the time walking up and down the car, playing cribbage and eating.

My leg ached quite a bit from the constant sitting. Without fail, after thirty minutes the pain was such that I needed to stand (this despite having my legs nearly straight while sitting).

I only woke up three times during the night and slept a total of seven hours.

Six-month DVT anniversary.

06/10/2002

Time to go home. My Dad drove Shannon and I back to Omaha to catch the train at 11:30pm. On the way he remarked that I had made him paranoid about bending his leg (my work here is done...).

Irritatingly, the train was two hours late leaving us waiting at the station (it was fun to amble around with the Huskers looking at my stockings). When the train finally arrived it was nearly full and it was difficult to find seats (no electrical outlet this time).

We learned a few lessons during the last trip and I was able to get relatively comfortable and sleep for almost six hours with reduced panicking.

06/09/2002

We said our good-byes and headed back for Ames after picking up my brother Joe in Iowa City. He reminisced about our old drives from Ames to Iowa City (during our overlapping collegiate years) and recalled that I hated stopping on along the way no matter how tired, hungry or badly we needed to use the restroom. That said, I think even he would agree that four stops on a 136 mile drive is excessive.

[Note: I strongly recommend the Heartland Inn to anyone staying in Cedar Rapids]

06/08/2002

The "minor cold" has added a hacking cough and fever, but my legs feel good. I did, however, almost pass out from heat-stroke during the ceremony (tux + stockings + eighty-five degrees = almost certain collapse).

Amazingly, my legs withstood all the slightly suspect wedding activities.

06/07/2002

Between my allergies, a minor cold and serious sleep deprivation (we camped at the Sloan Tree Farm last night) I felt rather crummy this morning. Luckily, I brought the Zyrtec and Allegra samples from by Dr. Moskowitz and they significantly reduced my reaction.

In a demonstration of true compassion Shannon drove the two hours to Iowa City (for the wedding) while I slept in the back of the Explorer (we folded the seats down so I wouldn't have to stop and walk every thirty minutes).

Again, it was nice to have new audience for my whining.

06/06/2002

Another missed opportunity thanks to my DVT. Today was Josh's bachelor party and I should have been sky-diving with the rest of the groomsmen. That said, I think it was a good decision not to go. The plane barely held the five people (the cars weren't much bigger) and they were forced to sit with knees to their chest for twenty minutes until the plane reached altitude (approximately 9000 feet). In addition, all the jumpers returned with scrapes and bruises from the parachute-straps.

06/05/2002

While I was working with Anna on her mountain bike I suffered severe chest pains. I felt like I was going to collapse and quickly went to lay down on the porch.

I think it surprised my Mom to see this reaction since to date she had only heard or read about my problems. Shannon returned from her walk minutes later and talked me through the discomfort. I felt completely better after about twenty minutes.

I played basketball in the driveway with Josh for the first time in six or seven years -- it was wonderful!

06/04/2002

I went to the dentist today for the first time in five years. I assumed that I had some awful goings-on in my mouth and would require serious care. I alerted the dentist that I was taking Warfarin and he didn't seem at all perturbed. Amazingly, I am cavity-free and he declared me to have "very good teeth." Interestingly, he also said that it is only necessary to floss "two or three times a week" -- it's nice to see they are being more realistic.

No problems with either leg today.

06/03/2002

I worked out with Anna and her roommate at Ames Total Fitness South and then walked/ran the five plus miles home. During the last mile my left-leg ached significantly, but normalcy returned as soon I elevated my legs.

I started having a mild allergic reaction today which is strange because heretofore my only known plant allergy was to ragweed; a late-summer, early-fall allergen.

06/02/2002

Both legs felt great throughout the day. I lifted, swam, slept and gorged myself on home-cookin'.

Varicose veins don't appear to be worsening.

06/01/2002

I spent most of the day in Minneapolis chatting with Ben, Natalie, Swill, Christy and Ed. I also had scrumptious barbecue with a low vitamin-k content.

Drove back to Ames stopping four times.

I'm beginning to worry about discontinuing Wafarin therapy. It scares the hell out of me to think I'll be "waiting" for a second episode to determine if further anti-coagulation is necessary.

05/31/2002

We slept peacefully in Ben's guest room. I had only one chest-pain episode during the night and quickly recovered.

I worked out at the Downtown Minneapolis YMCA (for free!) in the morning and felt as though many people were staring at my stocking-clad legs.

The wedding was held at Shadow Falls in St. Paul overlooking the Mississippi (where Jason proposed). Due to our late-ish arrival we ended up with seats on the grass. My left leg ached on and off during the ceremony; thankfully it wasn't severe enough that I had to bob up and down.

The reception provided a great opportunity for me to blather on about my DVT to a host of unsuspecting guests.

05/30/2002

This morning I worked out at Ames Total Fitness South -- an all-around quality gym (much better than North). It feels wonderful to be working out again on a regular basis.

Rob emailed me today to say that Dr. Moskowitz called with the results of the re-test for parasites. Apparently, I still suffer from the parasites I contracted last fall (presumably in Turkey). I called to discuss treatment options and he said that some strains have shown resistance to Metronidazole (what I took last time) and that he was prescribing Yodoxin (what a cool name). He also said that he was surprised that I wasn't having a more serious reaction since most hosts vomit blood, etc.. I decided that I would begin the anti-biotic regimen upon returning to SF so as not to affect my INR while on vacation. Dr. Moskowitz also agreed that discontinuing the Warfarin was appropriate on my return.

At 3:00pm Shannon and I left in my parents' Explorer for Minneapolis to attend Sara and Jasons' wedding. We stopped four times during the trip, including once at a rest-stop constructed to look like a barn in North Central Iowa.

Dr. Hufford called during the drive to say that I did not suffer from prothrombin gene mutation and to confirm that I could discontinue Warfarin therapy when I returned from the trip.

The only noticeable ill-effect from the DVT today was that the stockings were miserably hot.

05/29/2002

I slept a long time in order to recover from the train trip and multiple Omaha drives.

I substituted running on the treadmill for biking today because my parent's gym only had recumbent bikes (can you believe it?). My leg ached acutely after fifteen minutes and I switched to medium-pace walking. I also swam laps at the Ames High Pool (ahhhh...the memories) and it didn't affect my leg whatsoever.

It is already hot here and wearing the stockings makes my legs sweat constantly -- I'm glad I brought a second pair with me. Also, I'm not thrilled with the way I look wearing them with shorts, but I really am happy to be working out again. Perhaps if I tell people out here that it is the thing to do in hip-California everyone will start wearing them.

05/28/2002

Luckily, we slept through most of Nebraska.

We were slightly more successful constructing a bed out of the two seats last night (and I removed my stockings) and I garnered almost five hours of uninterrupted sleep (Shannon was less fortunate...). I was a little annoyed that the conductor didn't tell us, or the other passengers, that we were approaching the station stop. It just so happened that we awoke at 5:30am, fifteen minutes before the stop, and were able to collect our belongings.

My Dad picked us and most of our luggage (more on this later) at the station in Omaha. We stopped four times on the three hour drive to Ames for me to ambulate (I would venture that Iowa has some of the nicest rest areas in the country). A good distance into the trip Shannon uttered "oh, no..." and I knew right away something was wrong -- I had left my garment bag at the station (I know, I know...but we were bringing a bike, computer, cooler and three other bags!). Since my Dad was teaching a class at 9:50am we didn't have time to return for the bag, so I called and asked them to hold it for us (the station hours are 10:30pm to 8:30am -- yes, you read that correctly).

After arriving in Ames I did a light workout and spent the rest of the day lounging with my family, inhaling food and thinking how happy I was not to be on the train.

Around eight my Dad and I headed back to Omaha for my garment back (I may have left it had it not contained the suit for Sara's wedding). We retrieved the bag without issue and were back in Ames by 3:00am. My legs ached significantly on this trip, but frequent stops kept it from worsening (I forgot how quickly a windshield is smothered in bug juice here in the Midwest).

Dr. Moskowitz reported that my INR tested last Friday was 2.5 and that I should maintain the same 8mg dose.

05/27/2002

I'm beginning to wish I had coughed up the extra $1000 for the sleeping car. Despite crowding Shannon into half a seat and sticking my legs into the aisle I couldn't in a position where I felt comfortable sleeping (it would have been fine if I wasn't worried about bending them...). I woke every hour worrying about my leg; and once, when my right leg fell asleep from my foot to my groin I got awfully worked up that something was wrong (I know it doesn't make sense, but it was hard to think rationally at 2:00am). I left the compression stockings on during the night because I was worried about clotting and I think this might have contributed to my legs falling asleep. All told, I probably slept five hours (Shannon three...).

Amtrak does know it's business. After creeping through the breathtaking Sierra-Nevadas in daylight we traversed the bulk of Nevada and Western Utah at night (we reached Salt Lake City at 3:00am). Today passed much like yesterday, we watched Simpsons episodes on the notebook computer and I trudged up and down the aisle (it is more difficult to walk on a moving train that I imagined). Physically, I felt good most of the time, both legs ached from time to time but it was usually alleviated by walking or stretching. I was, however, going nuts being cooped up in the train. Even though we were instructed otherwise we disembarked at every stop to stave off cabin fever. We also ate our evening meal in the train's dining car for a change of pace (this was not a good meal...).

We arrived in Denver around 7:00pm and had thirty minutes to explore downtown before departing. It was refreshing to be outside and stretch and I hoped it would allow me to sleep more soundly tonight than last.

05/26/2002

At the suggestion of the ticket-taker we arrived for the 9:30am train at 8:00am and spent 1 1/2 hours trying to amuse ourselves in the Amtrak lobby.

After being herded into the appropriate car (by destination) we hustled up and down the aisle trying to find one of the seats with an electrical outlet (the conductor told us there were two per car). Our tenacity paid off and we spent the first twenty minutes of the trip telling other passengers that there were indeed only two outlets and that we didn't plan on moving.

I enjoyed peering into the backyards of the houses and businesses along the tracks. Apparently, nobody cares that weirdo Amtrak-passengers see their rusty cars, old cable spindles and run-down buildings. When the train arrived in Reno eight hours later (it's 3 1/2 hours by car...) the novelty was beginning to wear off. Granted, the seats were comfortable and there was room-enough to fully extend my legs, but the fact that we were only 1/6 of the way into our trip was depressing. I stood to stretch and ambulate or walked to the viewing car every half-hour to keep the aches in my leg away.

05/25/2002

Minor aching in my right leg most of the day, but the varicose haven't worsened. My left leg felt good except when I was riding in the car.

Lately, I have been having Warfarin-induced headaches frequently -- I'm very much looking forward to discontinuing the medication.

I wore shorts with two knee-high stockings to the gym for the first time today and was very self-conscious.

I'm leaving tomorrow morning for Omaha on Amtrak, so no entries for 48+ hours.

05/24/2002

Dr. Hufford said that I should discontinue Warfarin treatment when I return from my trip in mid-June! I'm thrilled to be done with the headaches, fatigue and bleeding worries, but I am very concerned about another episode. He said that I could continue if I wanted, but that his recommendation was to wait to see if there was a second episode (this was not very reassuring). I asked about the possibility of taking a reduced amount of Wafarin as a prophylactic measure and he said that this wouldn't reduce the chances of developing DVT significantly.

We also reviewed the results of my workup from January and he said that another test, for prothrombin gene mutation, was available and should be run. I will have the results in about two weeks. I found a good article on the condition here. It basically says that it is a moderate risk factor and present in approximately 18% of patients with a family history.

I had my INR tested at St. Lukes today (yes, blood drawn at two places today, fun, fun, fun). When I arrived they gave me a a small credit-card-sized identification tag for quicker service. Great, I've reached frequent-shopper status at the lab.

My leg felt good after the workout yesterday and the varicose veins don't appear any worse.

I bought my second set of stockings today for $50.

05/23/2002

In an ironic twist of fate, I was given a good shock (literally) when my medic-alert bracelet completed a circuit with the motherboard I was putting in my computer. I don't appear to be any worse from the incident.

I was back at the gym this morning and did about 90% of a normal workout. I worked the rest of the day and tried not to think about either leg with a modicum of success.

I have an appointment tomorrow with Dr. Hufford to finalize plans for (hopefully) concluding my Warfarin treatment and to discuss the second round of genetic tests.

05/22/2002

Once again there is only one thing seriously wrong with me. Dr. Lampert confirmed that there was no evidence of a blood clot in my right leg. He said that the varicose veins were just that and not an indicator of anything more serious. He added that I will probably want to have the ones in my thigh removed to alleviate the pain and for cosmetic reasons. In the short-term, he said that I should continue wearing knee-length compression stockings on both legs (woohoo!).

He said I should feel comfortable working out again, but that I shouldn't push too hard if I'm having significant pain in either leg (makes sense...). The varicose veins tend to get worse while I'm exercising, but he said they will return to their previous state when I stop.

Lastly, he concluded that it would okay for me to take the train back to the Midwest and I converted my American Express points into Amtrak money (no turning back now).

05/21/2002

My depression has started to lift and now I'm just apprehensive about the doctor appointment tomorrow. I am even starting to consider the possibility of taking Amtrak to Iowa if Dr. Lampert approves. By train, the trip is forty-eight hours for an amazing 37.5 mph average (1800 miles from SF -> Osceola). Tickets are approximately $300 round-trip.

My varicose veins have not worsened in the last week but I still have significant pain in my right leg. Chest pain has subsided -- I hope this means it was just anxiety.

05/20/2002

I was terribly nervous this morning before the doppler scan of my right leg. I'm not sure why I was so worried...with the pain I've experienced lately I was positive there was a second DVT and just needed the scan to prove it to the rest of world. I suppose part of me was clinging to microscopic, hope-like particles.

The scan was performed by the same technician that chided me for having both legs scanned in February (the only good to come of this was to be proving him wrong...). Despite rubbing me the wrong way he seems competent enough.

As I laid down on the bed for the doppler I felt like I was having a heart attack! I had awful pains in my chest and my body seemed to jolt with every beat of my heart. My only consolation was that I was in one of the better places on Earth to have a heart attack.

Once my world-class panic attack settled down I was able to listen to his diagnosis (during a doppler ultrasound the technician presses a hand-held sensor into your leg and dictates notes to accompany the video). This was certainly the most thorough scan I have had. He spent fifteen minutes scanning the entire leg and then focused on the areas with severe varicose veins.

After completing the scan he said he saw no indication of a DVT and the varicose veins did not appear to superficial thrombosis (clot not in the deep veins). Interestingly, he did mention that I appeared to have a smallish greater saphenous vein.

On Wednesday I'll meet with Dr. Lampert for his interpretation of the today's scan and the one from February (a different doctor initially reviewed the earlier scan). I also plan to ask him if the smaller-than-normal vein could have promoted DVT and the varicose veins.

In spite of the good news the pain in my right leg continued unabated as well as the chest pain.

I had Dr. Moskowitz order a follow-up test for the parasites I had last December.

05/19/2002

Another exciting day in bed. Excruciating right-leg pain most of day plus numerous chest-pain paranoia attacks. My only activities out of the house were two short walks around the neighborhood to stave off cabin fever (it didn't help).

I'm very nervous about the scan tomorrow and I have pretty much resigned myself to the fact that I have another DVT.

I continue to feel nauseated, but not as bad as the past two days. I'm going to call Dr. Moskowitz to be tested again tomorrow.

05/18/2002

Right leg was painful all day today, but the varicose veins don't seem to have worsened now that I'm wearing the compression hose full-time and spend most of the day sitting in bed (This is not a workable solution).

My one excursion was to see Attack of the Clones with Rob and Shannon. We sat far to the far right in the back row (so I wouldn't bother other moviegoers when I get up to stretch). Irritatingly, my legs were both hurting so badly that I was forced to stand every ten minutes. After half-an-hour of this I decided to sit in the aisle so I could sit with my leg straight. I sat in this fashion for the duration of the picture. The floor was not as disgusting as I feared -- kudos to the Van Ness AMC.

I also had minor chest pain and was positive that my breathing was abnormal all day, but I've been so worried lately that I can't discern anxiety from PE-based shortness of breath (I guess that's the point...).

05/17/2002

I spent most of the day in bed bemoaning my condition again. My right leg is hurting worse than ever and it makes me very anxious.

I also felt nauseated most of the day -- the same way I felt when I suffered from stomach parasites upon returning from Istanbul. I wasn't retested after the antibiotic regimen (Metronidazole) because of the panic/confusion surrounding my DVT diagnosis.

05/16/2002

I was a bit flustered yesterday and forgot to mention that my INR was 2.6 when tested on Tuesday. Also, the vascular surgeon suggested that I may need to increase my Warfarin intake if I do have a hypercoaguable condition.

I can't discern whether my left leg is getting better or if my right leg is occupying all my available pain/worry cycles. At any rate, the left leg seems to be doing fine.

Right leg, on the other hand, is increasingly painful and feels exactly like my left did in early December. The pain is a dull aching deep inside my calf. It doesn't seem to emanate from any one place, but I can point to a specific area that radiates the pain (Did that make sense?).

I awoke in the middle of the night and couldn't get back to sleep for a couple of hours -- I kept having smallish pains in my chest and felt like I couldn't breathe. Sadly, this continued for most of the day as well. I constantly felt that my breathing wasn't normal, but apparently I was getting enough oxygen for normal respiration.

As before, lounging around in bed all day was the most frustrating part of the ordeal. My mental condition deteriorates quickly when I can't workout.

05/15/2002

I have had few days as depressing as today.

At my appointment with the vascular surgeon he was very puzzled by the fast deterioration of the veins in my right leg (he said varicose veins often take years to reach the state mine reached in two weeks). He confirmed that a clot in my right leg could potentially cause this behavior and ordered a right-leg ultrasound for Monday. My follow-up visit is on Wednesday. It fortunate that he performed a doppler on right leg only a few weeks ago; making the fast onset all the more apparent.

Dr. Lampert recommended that I start wearing compression hose on both legs immediately and use the ACE bandage to wrap my right thigh (location of the worst varicose veins). He declined to prescribe full-leg hose until we had more information because they are so uncomfortable. He also said that a cross-country trip at this juncture was out of the question; partly because of the driving/riding position and partly that an extended absence from my medical support group was not advisable.

Needless to say, I'm really depressed. Mostly because it now seems like a realistic possibility that I have developed a clot on Warfarin. In addition, I'm going to miss the weddings of two life-long friends (not to each other). As icing, he added that I should refrain from exercise in case a new, fluid clot has formed.

I cried on the phone to my mom in the evening. I wish I was dealing with this better.

05/14/2002

Varicose veins seem to have worsened slightly along with my mental state.

I saw my general practitioner today and he didn't have any idea about the veins or their rapid onset and said to talk to the vascular surgeon (appointment tomorrow). I also pointed out that I was still feeling slightly ill and he said that it may be allergies and gave me a handful of Allegra and Zyrtec samples.

At the pharmacy, I needed a Warfarin refill since I will be gone for thirty days. At first, the insurance refused to cover the prescription because I hadn't finished the pills already dispensed, but after some finagling they coughed up their part of the bill. I'm surprised they made such a fuss since their portion of the bill was only about $8.00 because I actually have two prescriptions, one for 5mg and one for 1mg, so I have to pay my co-payment ($10.00) twice for the same drug. I wonder what someone would do with a stash of Warfarin anyhow?

I also had my blood tested.

05/13/2002

I'm going out of my mind (they all seem to start like that nowadays...) because of the worsening varicose veins in my leg. I made an appointment for Wednesday with Dr. Lampert to discuss. I'm also seeing my general practitioner tomorrow and I'll see what he thinks.

My main concern is that varicose veins are often caused by clotting in veins closer to the surface (as opposed to a deep vein thrombosis) indicating that I do suffer from hypercoaguability. Since the varicose veins have appeared in the past few weeks it would mean that I developed them while on therapeutic levels of Warfarin -- a terrifying thought.

I also talked to a doctor at the gym today whose partner suffered from a DVT two years ago. He said that he was given low molecular weight Heparin and sent home the same evening as the diagnosis. He related that he was scared to death with that arrangement despite being a doctor. This made me feel a little better about panicking for those first two weeks.

05/12/2002

My worries got the better of me again today. I didn't do any cardio-vascular work at the gym today for fear that the additional blood pressure in my legs would pop out even more varicose veins. I just moped around and looked at pictures of severe varicose veins online.

I continue to have inexplicable pains in my chest, but I'm trying to ignore them.

05/11/2002

Today is the five-month anniversary of my DVT-diagnosis.

I'm going bonkers about my right-leg vein problem. I was seriously depressed about it most of the day and didn't accomplish much of anything (well, it is Saturday...). It seems like they are growing all over my leg, but it's tough to remember what was there before.

Interestingly, the leg appears better when I've been laying down for a while but quickly returns to vein-covered state when I stand.

05/10/2002

I worried all day about the vein problem in my right leg and ended up calling for an appointment with the vascular surgeon. I hope he has some insight into the problem because he examined both legs less than a month ago.

I went to a "Site for Sore Eyes" this afternoon to purchase new glasses in case something strange happens to my contacts on the trip. For the first time in my life I checked "No" in response to the question "Do you consider yourself to be in good health?". Apparently, it didn't matter (what a surprise) because they didn't ask me anything about it.

05/09/2002

I received my medic-alert bracelet. It reads:

TIMOTHY HENTZEL
DVT (LEFT LEG)
TAKING WARFARIN
ALLERGIC TO
DOXYCYCLINE

Left leg is feeling good lately, but that may just be an artifact of my right-leg emphasis. It looks like I'm developing varicose veins, or something similar, all over my right left. It disturbs me because varicose veins can be caused by DVT indicating that I may have had, or have, one in my right leg. Here we go again.

05/08/2002

Today at the gym, someone I know to be 39 made reference to a mutual acquaintance who was "about our age." Needless to say, as a 26 year-old with varicose veins this did not play well. At least the Warfarin hasn't caused me to lose my hair yet.

I had significant pain in my leg most of the day while sitting at the computer. Over lunch I lay in bed hoping to relieve the pain.

05/07/2002

Another chapter in my "it's always has to be something" life has been started. Yesterday at the gym I noticed that there were 1-2mm bulges on the inner thigh of my right (non-dvt) leg, slightly above the knee. I suspect that the bumps are a form of varicose veins -- not a big deal of it's own -- but they are often caused by a DVT. This, of course, adds more weight to the possibility of me having a DVT in the right leg. I'm still trying to decide if I should have a doctor confirm the diagnosis.

05/06/2002

My reprieve was short-lived. The aching and swelling returned today; potentially exacerbated by a warm-up motorcycle trip to Petaluma. I plan to take a few more rides this week in preparation for the journey.

Still having frequent pangs in my chest, but I'm trying my best to ignore them.

05/05/2002

For the first time in quite a while I'm having a difficult time repressing my optimism. My leg felt substantially better today while I was sitting down and I never suffered from the "tight" feeling. I swam in the morning today (I usually go in the afternoon) and I wonder if that had a positive affect on my leg throughout the day.

05/04/2002

Slept perfectly last night, must have been the sleeping bag.

I worked at the computer for the better part of the day and my left leg didn't ache at all. I even began to hope that the tromping around in Yosemite had increased the recanalization rate, but I suspect it was just an anomaly since the doctor has said repeatedly that progress should be measured in months, not days or weeks.

At the gym this evening I was able to increase from level eight to level nine on the stationary bike for my normal forty minute ride.

I broke out a new ACE bandage today, ahhhhhhhh.

05/03/2002

Despite having exhausted myself yesterday I slept miserably last night. I awoke around 1:00am full of anxiety about my lungs and legs and couldn't get back to sleep until after 3:00am. I get nervous at night when I can't get a "deep breath"; one that feels like your lungs are full, almost tight, with air (I wish I could describe it better...). For some reason, when I can get one I feel more confident that everything is as it should be. When I can't get one, my anxiety level increases causing more shortness of breath and the cycle worsens until I can wrench my mind away.

I was thrilled the next morning to find that neither of my legs had muscular soreness and the tightness in the DVT-laden one was gone. Around 9:00am we embarked on a easy, five-mile hike up the Merced River to Mirror Lake to take pictures of Half Dome. I felt good most of the hike and I was even able to climb around on a pile of boulders without any problems (if forced to complain about something I would say that the compression hose were hot). Around noon my leg began to tighten and I called it quits, wanting to make sure I didn't push too hard at this stage of my recovery.

The drive home was uneventful save for some cursing around the Altamont Pass.

05/02/2002

I found it difficult to sleep in a sleeping bag. Since the onset of DVT I have been a bit paranoid about sleeping in the "wrong" position and having a clot form while I sleep. This caused me some anxiety during the night, but I ended up with six or seven hours of solid tent-based sleep.

In the morning we hiked all around the Yosemite Valley to see Yosemite Falls, the 8th tallest waterfall in the world. The 4-5 miles of easy hiking in the morning didn't have an appreciable negative affect and we decided to try the "strenuous" trail to the Vernal and Nevada Falls.

Overall, the Mist Trail (so named because of the constant mist blowing from the waterfalls) hike was approximately nine miles with a 2000 foot ascent. We progressed slowly and stopped every quarter mile for me to rest my leg (total hike time was about eight hours). All told, my leg felt strong until the end at which point it felt tight and full of blood (I was wearing the 30-40 mm Hg compression hose throughout the day). That said, there were moments when I felt the onset of a pulmonary embolism was imminent. We hiked the final four miles with another couple, one of whom was a doctor, which made me feel significantly better (I suspect he didn't enjoy talking "shop" all afternoon, but, hey, I just gotta be me). In more lucid times I decided that my difficulty breathing was probably due to the climb and 6000 foot altitude rather than blood coursing through my lungs.

At the end of the day I was physically exhausted, but my leg felt strong and I was all smiles (note: smiles might also be from a mouth full of grilled chicken).

05/01/2002

Ugh. I forgot to take my Warfarin last night amid the packing craziness. I took the dose as it was less than twelve hours from the regular time -- I read somewhere that after twelve hours you should forget it (sorry, no citation).

[Tim leaves for Yosemite]

I needed to stop (picture is from Don Pedro Lake) four times during the 190 mile drive to stretch, but my leg felt much better than on the trip to Sacramento a few weekends ago. The only major incident occurred when I was trying to stretch my leg while driving and I hit the brake instead of the clutch.

Amazingly, during our stop in Oakdale my Sprint PCS service kicked in and I was able to call for the results of my blood test. I was at 2.7, again proving me the fool. The doctor said to maintain the current dose and have it rechecked before the big motorcycle trip.

04/30/2002

I had my blood drawn today at St. Luke's for the umpteenth time and refilled my Warfarin prescription -- if all goes well it may be for the last time. Hopefully I'll be able to check it by mobile phone tomorrow on my way to the campsite since it's almost certainly over 3.0 (I know I've said that before...).

Minor chest pain continued today, but they only terrorize me for a few seconds now. It feels like a wave passes over me when it happens and my entire upper body tingles with fear. The physical sensation retreats almost immediately and I'm left mulling over the incident and trying to decide if I should tell anyone.

This should be my last post until Friday as I'll be leaving for Yosemite tomorrow morning. I will, however, be taking a notebook to record my every DVT thought and any Thoreau-like musings that strike me in the forest.

04/29/2002

No problems with my leg today whatsoever (other than the normal swelling and redness) despite spending the majority of the day behind my desk.

I'm leaving on Wednesday morning for a few days of camping (nothing too intense) in Yosemite National Park. I hope this time proves me capable of preserving sanity when removed from my entourage of medical support.

04/28/2002

Chest pain continued today, but I was slightly less put off by it. I suspect that it is related to my overall sickness -- perhaps just congestion (at least that's what I'm telling myself).

Check out my latest INR graph.

04/27/2002

Today was my nutso day for the week. I had minor chest pains all day and I was convinced something bad was happening. Miraculously, I survived yet again.

No improvement in my ear/throat ache.

Still no bracelet.

04/26/2002

My INR yesterday was 3.0, so again it has risen substantially while taking the 8mg dosage. I suggested to the doctor that I reduce my intake but he said to continue at 8mg and have it retested next Tuesday.

The pain in my right leg that I was nuts about several days ago has mostly subsided.

Still feeling lousy and consequently didn't make it to the gym today which made me feel more lousy. Grrr.

04/25/2002

I saw my general practitioner today and he indicated that it would be okay to not have my blood drawn during the month I'm traveling if it had been stable for the month prior. He also said that he had recently read a journal article stating that the recurrence rate for DVT was the same (15%) whether the Warfarin therapy continued for three, six or twelve months (sadly, I didn't get the exact reference).

He also performed a test for strep-throat while I was in the office (I had no idea it could be done so quickly now...). The test was negative and he postulated that I had an ear infection that would heal on its own so no antibiotics were prescribed. He did say, however, that if it persisted he would prescribe something this weekend (he's the on-call doctor this weekend) and that there are plenty of options that will not interfere with the Warfarin.

I took the opportunity to have my blood tested since I was already at the hospital.

04/24/2002

No luck on the doctor appointment today; the earliest appointment was tomorrow at 11:15.

Thankfully, I don't have anything else to say about my leg. Perhaps this means we are finally learning to co-exist peacefully.

04/23/2002

Presumably unrelated to my DVT, I have a sore-throat and ear-ache. I'm plan on scheduling a doctor appointment tomorrow. I hope the compulsory antibiotics don't affect my INR level/stability significantly.

The newsgroup has been flooded of late with email from persons with newly diagnosed DVTs. It's reassuring to see them progress through familiar states of mind; particularly those that turn every ache into another blood clot or something worse. There has also been a lot of talk about unstable INR levels as well and it seems that many are having trouble maintaining a high level whether it is Warfarin Sodium or Coumadin. Even though I have been hearing and reading for months that it is difficult to regulate and takes time I think it is finally sinking in.

04/22/2002

Leg felt good all day, even during the hour-long drive to Santa Clara for a meeting this morning. I did feel a bit strange taking a five minute break during our presentation to ambulate, but nobody appeared to mind (maybe it was the presentation...).

Tonight I made a big production of taking my Warfarin so everyone would remember -- I'm sure they appreciated this.

Still no medic-alert bracelet.

04/21/2002

Nothing much happened today, DVT-related or otherwise. My leg didn't seem any worse off in spite of the extended sitting yesterday. The only event of note was when I slammed my head into a hook protruding from just above the back window as I leaned over to peer out. For about ten minutes I was terrified that I was bleeding internally and about to die from a brain hemorrhage (I seem to be okay....).

Also, for the first time since I started taking Warfarin in Mid-December I couldn't remember whether or not I had taken my pills for the evening. I ended up dumping out the remaining pills and counting the number of days from when the prescription was filled. In the end, I had not taken the dose yet. I should probably get one of those day-by-day pill containers.

I still have not received my medic-alert bracelet -- those slackers!

04/20/2002

I spent most of the day in the car driving back and forth from Sacramento (about 100 miles away). The drive outbound drive went smoothly; I stopped three times to smell the roses and stretch my leg. My left leg ached for most of the trip, but nothing too severe.

After walking quite a distance in Sacramento, maybe three or four miles over three hours, my left leg began to ache and swell terribly (I was wearing the compression stocking). It was a strange feeling, whenever I sat down I felt like I should stand up and whenever I was sitting I felt like standing would help.

The drive home took 3 1/2 hours due mostly to heavy Bay Bridge traffic. Unfortunately, it was hard to pull of and stretch my leg in the middle of bumper-to-bumper traffic; consequently, I was in a lot of pain by the end of the trip.

04/19/2002

Some good actually came of the DVT today. I mailed my medical-excuse from jury duty today with a clear conscience.

Dr. Hufford, my hematologist, returned my phone call today regarding Coumadin/Warfarin and homocysteine. He said that he hadn't heard anything specifically regarding the drug, but that he would be more than happy to change the prescription if I wanted. Since it didn't strike him as a big deal I don't think I'll switch as I don't relish the thought of having semi-weekly blood tests again. He also commented that the more often you have your INR tested the more crazy it will make you (not sure what to make of that...).

When I asked him about testing my homocysteine levels he said that he always includes that in the panel and that I should already have those results. He called back five minutes later to confirm that it was tested and was a perfectly healthy 7.1. Another dead end.

Pain in right calf still present, but I'm not thinking about it today.

04/18/2002

I couldn't resist any longer. I called the vascular surgeon to see if he thought I should have my right leg examined and he said that if I was worried about it to come in that afternoon. He poked and prodded both legs and did a non-visual doppler of both legs. He said that my left leg looked "good" and that my right leg was markedly better than the left. He also reiterated that it would be very uncommon to develop a clot while on Warfarin. He said that I should monitor it over the weekend and if it worsens at all to come back on Monday. For the first time in many months going to the doctor actually lifted my spirits.

While I was there I pestered my doctor with a few more questions. I asked if he thought a higher compression hose would help me be able to sit longer (I currently wear 30-40mm Hg compression hose). He said that it is very rare, and nearly unheard of for someone of my size, to need more compression. He did say to try wrapping the Ace bandage around the hose and if that helped he would be happy to prescribe a higher compression. He also said that my blood flow was strong enough that I would be in no danger of reducing the circulation too much.

Next, I asked him about the possibility of an elevated homocysteine level causing the clot. He thought that this was an unlikely possibility, but that I should have it checked by either my GP or hematologist to be sure. He also commented that he was a Harvard Medical School classmate of Kilmer McCully, M.D., the first person to connect homocysteine levels to heart disease. It is a very interesting story in that Dr. McCully researched the connection twenty years before the rest of the medical profession gave it notice. The non-recognition by other medical professionals and his dedication to the research even resulted in removal from his position at Harvard and Boston General.

I also asked him if there was a major difference between a venogram and the venous ultrasound used to identify my existing clot (My thought process being that a venogram of right leg might turn up something missed by the doppler.). He said there was a 95% correlation between a venogram and the doppler machine used for my test and that a clot of any significance would be seen by either. He added that I did not want to experience a venogram.

Finally, I asked him about my planned motorcycle journey to the Midwest and he said that he didn't see any problems with the trip assuming that I stop at least every hour and don't wreck the bike. Yay!

I also ordered a medical alert bracelet today from American Medical Identifications in preparation for my trip. With shipping it was $25.95.

Lastly, it was brought to my attention that my brother's girlfriend is a third-year medical student, not a fourth-year as previously reported.

04/17/2002

More pain in the right leg, but truthfully, if I had never been diagnosed with DVT in my left leg the pain in my right leg wouldn't bother me at all -- it's not very painful; it's just that it's the same kind of deep, dull ache that I had shortly before I was in the hospital.

This evening I received an email from my brother's girlfriend, a fourth-year medical student, who just finished studying coagulation disorders and said that to date my treatment correlated perfectly with what the "head-honcho" at Loyala prescribes. In addition, she suggested that I have my homocysteine levels checked since nothing else has turned up and I have been known to take a lot of bodybuilding-type supplements which may aggravate the problem. Apparently, the test is quick and cheap -- I plan on calling my hematologist tomorrow to schedule yet another blood drawing.

Lastly, I received another email from a fellow DVT-sufferer who is squarely in the "Coumadin is better than Warfarin" camp. I also plan on asking the hematologist about this tomorrow. In my research, I found that these is currently a lawsuit against DuPont, the maker of Coumadin, for claiming that "...there is a lack of bioequivalence or therapeutic equivalence between Coumadin and other warfarin sodium products." The claimants argument, as best as I can discern, is that there isn't really a difference but DuPont has propagated contrary information causing doctors to prescribe Coumadin when a generic warfarin sodium product would be acceptable. The suit is for $44.5MM. Either way, I'm asking my doctor.

For what it's worth, thirty 5mg tables of warfarin sodium cost $13.37 while the same dose of Coumadin is $20.99 at drugstore.com (I currently take 8mg per day). For comparison sake, each 100ml Lovenox injection costs $59.70 so warfarin/Coumadin is clearly much more cost effective.

04/16/2002

More of the same. My right leg is still cramping and hurts worse than the left. I'm doing my best to hold out until next week when I'm scheduled to see the vascular surgeon.

The newsgroup mantra is "You know your body" and if you suspect something is wrong you should seek medical care until you are satisfied with the result. I'm suppose I'm worried that I don't know my body that well, at least not anymore. I wonder if my mind has been so affected by the clot that I now can't tell the difference between knee pain and a cramp in my calf. Hell, I can sit here thinking about my leg and pain sprouts up all over....

04/15/2002

After a few slow days in DVT-land I have succeeded in making myself nuts again. The pain in my right leg has worsened and I'm worried about the possibility of a clot again. I was awake for quite a while last night worrying about it.

Also, on the newsgroup I have read over the last few days that some people have had more success with Coumadin than generic Warfarin. They often cited more stable INR levels and even a reduced recurrence of clotting problems. This bothered me quite a bit since I assumed that the generic-form was the exact same chemical compound. Definitely something I will ask my doctor about on the 24th.

I have also started taking a 50mg B-Complex vitamin everyday. It was suggested on the newsgroup that this may reduce some of the negative side-effects of the Warfarin.

04/14/2002

This morning my legs were bothering me again so I didn't make it to the gym. Other than that, not much to say about the leg. I'm doing my best to put the pain in my right leg out of my mind.

04/13/2002

I went swimming this morning at the Burlingame Aquatic Center (Best pool in the Bay Area!) and it felt great. My leg didn't swell or become red whatsoever while I was swimming and it no longer affects me when pushing off from a flip-turn.

Sadly, after getting back from the pool I played Age of Kings, an older real-time strategy game, with my housemates for nearly four hours. Despite respites every twenty minutes my leg ached horribly by the time we were done playing. In the future, I need to be cognizant of how long I've been playing and be able to call it quits.

No gym today in light of the swimming workout.

04/12/2002

The pain in both calves has subsided markedly, but it is definitely still there.

In retrospect, it seems most likely that the pain was caused by my most recent leg workout and is not due to another clot. Even so, even the minute possibility is frightening enough to put me on edge.

I plan on working out legs again Sunday to test my theory, clever, huh?

04/11/2002

Well, I guess they don't screw up the INR tests all that often. My INR reported from yesterday's test was 2.0 so it follows that the 1.8 reported last week was accurate. After racking my brain I can't figure out what I may have consumed that reduced my INR so significantly. I have also updated the graph of my INR and Warfarin dose.

I'm still having excessive pain in both calves with little or no improvement from yesterday. I'm teetering between being freaked out by it and sick of thinking about it all the time.

04/10/2002

Pain in both legs was slightly improved today, but definitely still worse than it had been. I'm still struggling with work right now and am worried that if this persists it may become difficult to continue working at a desk much of the day.

I had my blood drawn at St. Luke's again. After several months of study I have determined that the best time to have lab work done is 4:30pm. I hope the INR is high proving that last week's 1.8 measurement was a fluke. If this is the case, I may be able to reduce my dosage and frequency of the headaches.

Today is the four month anniversary of my DVT diagnosis.

04/09/2002

Today was worse yet. Both legs ached throughout the day forcing me to lay down frequently until the pain lessened. I spoke with Dr. Lampert about the increased pain and non-effectiveness of the stocking and he said "Well, that may just be as good as it's going to get." Needless to say, that wasn't an uplifting conversation. I schedule an appointment for April 24th to discuss my upcoming trip!

It did strike me, however, while reading "What Does Not Kill Me Only Makes Me Whinier" in the Onion that other people are indeed worse off than I. Dammit.

04/08/2002

My left leg is aching worse than it has in some time. I am having a hard time getting any work done because my leg quickly aches so much that I have to get up and move around. Also worrisome is the fact that getting walking or laying prone for an extended period of time used to make the leg feel better which it no longer does.

These problems over the past couple of days have lowered my outlook significantly. It has been almost four months since the diagnosis and my improvement seems to have tapered if not reversed.

04/07/2002

This evening I was told by one of my close friends that I spend too much time talking about my clot and that it is consuming my life. Needless to say, they are probably right. Seldom is it not in my thoughts and I do keep this ridiculous log. In the future I plan on making a concerted effort to discuss my clot less in social situations.

My right calf is still bothering me quite a bit and I have become a bit more concerned after reading a number of posts on the Yahoo! group that frequently DVT can be missed in a doppler scan. This bothers me particularly given that the technician didn't seem to take the possibility of a DVT in my right leg seriously when he did the scan in February.

I had minor chest pain today, but nothing to write home about (Hi, Mom!).

04/06/2002

More pain in my right calf today and the chest pains were less frequent. I having a hard time not getting worked up about my other calf.

04/05/2002

All day I felt like my heartbeat was fast and irregular, but every time I checked my pulse it was 55-60, my normal resting rate. I suppose this is just one more example of how paranoid I have become. I am still having pain in my right calf, but I'm trying to ignore it.

At lunch today I ordered a dijon-chicken salad as an entree and to my chagrin it was served on pile of spinach, so I will be watching my vitamin-klot intake for the rest of the weekend.

On the way to Tiburon for dinner tonight I was pulled over by the Highway Patrol for driving with expired tags. Since I was in my brother's car (thanks Rob) and also had no proof of insurance the incident took quite a bit of time and I had to ask the trooper if I could get out of the car to stretch my legs. After giving me a look that would stop traffic (hahahahaha) he let me walk around the car a few times.

04/04/2002

At 2:00pm today I called my currently absent doctor's office for the results of yesterday's blood test. The reception said that the results were in and that she would take my number and the on-call doctor would be in touch with me shortly. Having grown wise to the "in touch with me shortly" routine I asked her directly for the INR and said the doctor could take her time calling. The tested INR was 1.8, which I find unbelievable.

I have not changed any part of my diet, routine or Warfarin dosage in the past three weeks and my INR climbed from 1.6 to 2.8. I have heard from many sources that INR is hard to regulate and that it fluctuates, but this seems to fly in the face of all common sense. The message from the on-call doctor, relayed by the receptionist, was to take 10mg today and then continue with my 8mg dosage. The doctor said nothing of the unexpected results.

Normal leg pain throughout the day. The only item of note is that my leg continues to hurt while I'm in bed; something that hasn't happened for months.

04/03/2002

I ran out of Warfarin today and had to call my doctor to for a prescription refill. Unfortunately, my doctor was out for the week and I was transferred to the on-call doctor. Three phone calls and seven hours later my prescription was called into the pharmacy. It wouldn't bother me if they were just busy and it took that long, but each time I called it was like they had never heard of me before and had to take all my information (name, medicine, dosage, etc.) each time.

While I was at St. Lukes I decided I should have my blood tested because it had been almost two weeks and I didn't fancy driving over there again on Monday. I forgot to bring my paperwork with me, but they know me so well now that they said it was okay and drew the blood anyway.

04/02/2002

Today was better than the last. No major heart attack/PE scares, just the now commonplace aching.

I made it to the gym this morning and had a strong workout. My leg ached more during the day while I was working with Matt, but I assume that it stems more from a less comfortable work environment than a degradation of my condition.

04/01/2002

Firstly, I would like to state that this is not an April Fools' entry.

Today was a bad day. I woke up this morning feeling miserable and didn't make it to the gym for the first time in several weeks. Throughout the day I was having minor chest pains and cramping in my right calf. I did my best to convince myself that there was no cause for alarm and went about my work.

Shortly after 6:00pm (That's Pacific Standard Time for those of you playing at home) while I was working with Matt at the computer most of my left arm went numb and I immediately assumed I was having a heart attack which gave me a nice panic attack (panic attacks share many symptoms with a heart attack which didn't help the situation). I lay down for half an hour and started to feel better and most of the feeling returned to my hand. I'm still not sure what caused the original numbness, it's possible that it is an ulnar nerve condition that my doctor tentatively diagnosed years ago when I experienced slight numbness in the fingers on my left hand.

At least it keeps life interesting.

03/31/2002

The chest pains are here again. I even went as far as to remind my housemates that CPR won't help and to tell the paramedic that it is a pulmonary embolism. Why can't I just have tendonitis or something like that?

Here is a picture of the bruise on my arm from where blood was drawn a week earlier. At least I know the Warfarin is doing it's job. You will also note that the picture is of a more reasonable size as I have succumbed to the pressure from my burgeoning audience.

03/30/2002

I'm still recovering from the leg workout two days ago, but other than that no new complaints with the leg.

The swelling has not improved much over the past few weeks and my leg continues to turn red if I stand for any amount of time without compressing the leg.

Someone on the newsgroup reported that they suffered hair loss from the Warfarin after only two months of therapy, so now I'm stewing about that. To date, I don't think I've lost any.

03/29/2002

My legs are very sore from working out my legs again, but I do feel like I'm slowly returning to my pre-DVT activity levels.

I rode the motorcycle to Berkeley today for lunch and even on the eight-mile Bay Bridge stretch (ie. no stopping to stretch my leg) I didn't have the overwhelming sensation that a new clot was creeping up my circulatory system.

I'm really excited about my upcoming trip (pending doctor approval, of course), and I'm even planning the purchase of a new ergonomic seat to replace the stock 1/8 inch foam board. I will not, however, be buying the ugly Beetle Bags. Lastly, I would like to point out that my bike is not that awful red color.

03/28/2002

The Warfarin headaches are back in force. Each of the past two nights I have had excruciating pain in my right temple. There seems to be a direct correlation between a high INR and the headaches. Additionally, I had relatively severe chest pains again today. I know I should talk to the doctor about them, but at this point I feel as though they'll think (probably accurately) that I'm nuts.

My brother's girlfriend, who is a fourth year med-student, confirmed last night that riding a motorcycle across the country in my condition was idiotic.

03/27/2002

Leg ached all day while I was at the computer, I feel like it may be getting worse.

I cut myself shaving (yes, I was using the blade again) before leaving to meet friends for dinner and it bled for nearly three hours.

03/26/2002

My INR results came back today at 2.8. The doctor said to maintain the current dosage and re-test in two weeks (See graph here). I often wonder if the doctor fails to review my past results before setting the dosage. Granted, 2.8 is within the 2-3 therapeutic range, but in the previous two weeks with an 8mg dosage my INR has increased 0.3 and in the week prior to that it increased 0.2; simple linear extrapolation would indicate an INR of at least three in another two weeks. I plan to have it retested next week anyway.

I also received (Thank you!) a terrific (terrific as in well-written, not terrific as in good news) article from a fellow DVT-sufferer discussing the causes and treatment of pulmonary embolism (PE). A must read if you have the time and inclination to read my babble.

I bumped my leg (the bony part of my right shin) on a weight-rack at the gym this morning and it turned into a bruise the size of grapefruit within minutes. This got me all worked up again thinking that something as innocuous as tripping could cause me quite a bit of grief.

03/25/2002

No pain whatsoever at the gym this morning; I'm planning on increasing the intensity tomorrow. My leg was stiff throughout the workday and at dinner I kept bumping legs with Carmen because I had to keep straightening my leg out.

Also, I have gone back to wearing the Ace bandage exclusively. I feel like the extra pressure is more beneficial than the extra coverage provided by the hose. I'm going to talk to the vascular surgeon in a few weeks to see if he thinks a higher compression hose is needed.

03/24/2002

Apparently, sixty minutes on the bike doesn't cause any problems. My leg felt great today; I even went on a short motorcycle ride and it took a while before the usual aches and pains set in.

03/23/2002

Sixty minutes on the bike today -- I'm trying to see if the extended ride last week is what caused my leg to start hurting again. Kind of reminds me of a Groucho Marx bit....

03/22/2002

Ugh. More pains in my chest today; not as sharp as they have been in the past, but they lasted much longer. Someone on the newsgroup reported that this can be caused by scar tissue from an earlier pulmonary embolism. I'm hoping it's from bench press.

I was up and about for most of the day so I was able to avoid some of the normal aches and pains I experience while working. The forty minutes on the stationary bike this morning were not painful, so hopefully whatever was causing that has passed (or been eroded).

Minor headaches in the evening, more likely than not these were more work-related than Warfarin-related.

03/21/2002

I didn't receive any "You're an idiot" email from yesterday's post, which probably means nobody is reading this. Probably just as well.

I did calf raises this morning at the gym and my legs are so sore that my normal aches and pains are sufficiently masked that I can't partake of my normal worrying.

On a good note, my ten new Ace bandages arrived today with metal clips!

Mar 20, 2002

I did a strength training + cardio morning workout and another forty minutes on the bike in the evening. My pulse seemed extraordinarily high in the evening, reaching 160 towards the end of the ride. Whenever it gets that high, I start thinking that it's working extra hard to push blood past the clot and is somehow going to cause heart failure. Other than my self-induced insanity, my leg felt better during the exercise than it has for the past few days.

Now that my leg strength is returning, I'm starting to ride the motorcycle a little more each week (Warfarin be damned!) and by the middle of May I'm hoping to be in a position to ride from San Francisco to Iowa, where my parents live, since I've decided I'm not quite ready to fly yet (Yes, I know that riding a motorcycle 3000 miles is probably much riskier than flying). I plan on the trip taking about ten days each way. That should allow ample time to stop and stretch every half-hour. All told, this is probably a poor idea.

Mar 19, 2002

My leg felt much better today at the gym; I did forty minutes on the bike with only minor pain.

Also, today at the gym some random, tattooed guy asked me what was wrong with my leg and I replied "blood clot in my leg" and he responded "Oh, DVT, right?". He continued to say that he saw it on the news and remembered because his wife flies quite a bit and he had mentioned it to her. I mention it because the condition seems to have received a substantial bit of attention in the media of late.

Mar 18, 2002

This morning while I was riding the bike I had a lot of pain in my left leg; it felt as though my ankle was swollen and "tight" with blood.

The pain continued throughout the day and I was forced to take numerous short walks for relief. I put the stocking on as soon as I was home from the gym in hopes that the more complete coverage would help my ankle.

I didn't have any chest pains today for the first time in four days.

Mar 17, 2002

Yesterday, at my request, I was sent a copy of my medical records from the vascular surgeon. It was interesting to read an objective opinion of my condition. My favorite quote is "On exam, he seems quite anxious" -- Dr. Lampert is clearly one for understatement.

Kind of a slow day in DVT-land. I rode the stationary bike continuously for sixty minutes with only minor pain and swelling. The worst pain was this morning when I was playing Age of Kings on the computer for one and a half hours.

Mar 16, 2002

For whatever reason, I have been having pains in my chest again. Several times yesterday I had minor episodes and once today I had a severe pain in the left side of my chest. The pain today was so bad that it doubled me over. I don't seem any the worse for them, but they, like everything else, are quite worrisome.

I worked out today wearing the compression stocking for the first time. It didn't perform differently than the Ace bandage, but I got many more stares.

Mar 15, 2002

Well, the Ides of March proved to be relatively innocuous this year.

Mar 14, 2002

I have a new supplier! My sister Anna, who is studying abroad in Austria, found a website that sells packs of ten Ace bandages (With metal clips!) for about $30. My first order should arrive early next week.

Mar 13, 2002

I spent the day in front of the computer and my leg was sore by 11am. I'm going to start setting my watch alarm to ring every hour to remind me to ambulate.

Unfortunately, I lost one of my precious Ace bandage clips (I still wear it to the gym). Fortunately, my Mom sent me a new metal one. This reminds me of a favorite book from my childhood.

Mar 12, 2002

My INR taken yesterday was a perfect 2.5 so it appears that the 8mg dose is correct.

Mar 11, 2002

Three months since the diagnosis and I'm still alive!

I found out today that broccoli has a significant amount of Vitamin K in it so I will need to reduce or remove it from my diet. For some reason, I didn't think it would be very high because it isn't leafy like lettuce and spinach [What do I know...?]. I found the Vitamin K data here [apparently, I can't be having any Swiss chard either].

My leg felt good all day except for driving to pick Matt up at the airport. After the forty-five minute drive, my leg ached and felt tight, like it was full (it's hard to explain...).

Mar 09, 2002

My leg felt particularly good today, probably because I move around more on the weekends. I am now able to ride the bike without any DVT-related pain.

For some reason, I am starting to have trouble sleeping again. Each of the last two nights I woke up thinking about my leg and my heart was pounding.

My left leg still turns red if I stand without it compressed for more than two minutes. I hoped that as I was feeling better the redness would subside.

Mar 08, 2002

The Protein-C and Protein-S results for my parents came back today. All of my Dad's results were within the normal range. My Mom's results were normal except for an elevated Protein-S. Strangely, it is a deficiency that leads to clotting; so her blood is actually a bit thin.

These tests significantly reduce the likelihood of a genetic pre-disposition.

Mar 07, 2002

My leg felt good all day except for minor pain while riding the exercise bike.

Mar 06, 2002

For brief periods of time, I can sit with my leg on the desktop which makes my left leg feel better and the rest of me ache.

The compression stocking seems to be a bit more effective than the Ace bandage, but it is a lot more inconvenient. The stocking is so tight that it nearly dislocates my shoulder when I pull it over my ankle.

Still no results from my parent's blood test.

Mar 05, 2002

My leg felt better this morning. I wore the stocking all day and had minor pain while sitting at the desk.

After the motorcycle maintenance class with Doug, I went to Kevin Shelley's (CA Secretary of State) campaign party and was up so late that I forgot to take my Warfarin for the first time.

Mar 04, 2002

The honeymoon is over. Not only did my leg hurt the most it has in two weeks today, but I also had a nightmare about flying. In the dream, I was stuck on a plane and they wouldn't let me get up--I was going absolutely nuts.

I had my blood drawn today and my INR was 2.3, back in therapeutic range.

Mar 03, 2002

Today was even better than yesterday. I Swam, biked, lifted weights and felt great the whole day. I'm starting to wonder if it is sitting at the desk all day that aggravates my leg so much.

In yet another example of my slow return to normalcy, I shaved with a blade the last two days. Obviously, nothing has changed that would make a cut less significant; I guess I'm just more willing to bleed a bit in exchange for part of my old life back.

Mar 02, 2002

Today I swam, biked and lifted weights without any noticeable problems. All told, this was the best day I've had since the diagnosis; probably in part because I was able spend a large portion of it away from my desk. I also rode the motorcycle seventeen miles to the pool in Burlingame--it was great to be back on the bike.

Mar 01, 2002

When I was looking through the pictures posted on Feb 27 it looked like I was getting varicose veins in my right leg, which made me think I was developing another clot. After a few hours I calmed down and decided that it wasn't markedly different than before.

Minor leg pain throughout the day, when I was working at the computer.

Feb 28, 2002

I did my first "leg" day at the gym since the diagnosis. I did sets of leg extensions, lunges, leg curls and calf raises. The leg extensions made me pretty nervous because I had to bend my leg back further than I have for the past few months, but all told it was an uneventful workout that left me very sore.

The compression stockings allow me to sit for about twenty minutes before I need to ambulate, better than the Ace bandage.

Feb 27, 2002

Well, I finally traded my Ace bandage (no more clips!) in for a Juzo brand graduated compression stocking (Class II, 30-40mm Hg). It took me a while to squeeze into the stocking the first time, but it wasn't too bad. Interestingly, the Ace bandage felt better and was much tighter; but I think the stocking will help because it covers my entire ankle, which had been swelling.

Two stockings were $47.99 plus tax at Round Medical in San Francisco. I spent nearly half an hour on the phone with Aetna this morning trying to find a medical equipment supplier that accepted the insurance.

At the gym this morning, I had a panic attack for the first time in two weeks. I had chest pains when I was stretching out and was certain that I was having a heart attack. It must have been a small one because I'm still here. :)

I ran two miles on the treadmill at 7.0 mph and rode the bike for 10 minutes after a minimal shoulder workout.

Feb 26, 2002

My left leg caused me a bit of discomfort again at the motorcycle maintenance class today. I could only sit still for a few minutes without it aching.

I felt lousy at the gym this morning (probably unrelated to my leg) and only did a short weight workout and rode the bike for forty minutes. I'm going to try running again tomorrow.

Lastly, it seems that my body may have become more acclimated to the increased Warfarin dose because the headaches were not as severe today.

Feb 25, 2002

I had zero pain in my leg while working out and only experienced minor discomfort while sitting at the desk.

I had my blood drawn again this morning to see if the new 8mg/day dosage brought my INR back into the therapeutic range. Thankfully, I was at 2.1 and won't have to increase the dosage further. It is still not clear to me how a 5.5mg dosage was considered sufficient for the first two months but now I need at least 8. One possibility is that the Lovenox (low molecular-weight heparin) stayed in my system long enough to boost my INR such that the Warfarin dosage was miscalculated.

Feb 24, 2002

I spent two hours this morning volunteering at the Kevin Shelley (for Secretary of State) campaign working on their network. I should note that this was at Shannon's behest and not the sort of work I generally perform. At any rate, I got caught up with the project and sat still for too long causing significant pain in my left leg.

Other than that, it was a good day. I rode for forty minutes on the stationary bike and walked for twenty on the treadmill along with a short resistance workout. I also received an upbeat letter from the reader in Canada that put me in much higher spirits.

Lastly, I wanted to include a bit of a diatribe on Ace Bandage Fasteners. The solid metal ones, on the left, work beautifully and never fall off whereas the metal/elastic combo is worthless. In the two months I have been wearing the bandage, I have not been able to buy a bandage with the metal clips anywhere. Why does Ace distribute the good clips to the hospital and make the general public make do with the elastic ones?

Feb 23, 2002

This morning I went to Stinson Beach and ran about three miles. Later, I had pain in my right calf, probably from running on sand, something to which I'm not accustomed.

In general, I'm still feeling fatigued and have headaches from my increased Warfarin dosage.

Feb 22, 2002

I received an email last night from Canadian reader that has had several DVT episodes, including clots while on Coumadin therapy, and had been diagnosed with Protein S deficiency. This news coupled with my recently increased Warfarin dosage has left me depressed and I'm worried about developing clots in the future.

Nonetheless, a good day at the gym -- 40 minutes on the bike and triceps.

I called about the compression stockings prescribed by Dr. Lampert, but the place he recommended didn't accept Aetna insurance so I'll have to submit the claim myself (which is pain in the rear). I'll make an appointment next week.

Feb 21, 2002

I met with Dr. Lampert, the vascular surgeon, to discuss my progress and the ultrasound from last week. He said that the ultrasound showed some recanalization, but not much. He also said that progress should be measured in months, not weeks, and that I should wait and do another ultrasound in June. He also confirmed that there was now zero risk of a PE from the existing clot and that I should continue to exercise as I wanted as long as it did not cause excessive pain. Lastly, he said that I should really start wearing the TED hose instead of the Ace bandage.

Normal day at the gym. I lifted shoulders and rode the bike for forty minutes at level 8.

Feb 20, 2002

I had my blood tested this morning at 7:30am. Dr. Moskovitz called at 11:30am to say that my INR was 1.5 and increased my dosage to 11mg today (from 6mg) and suggested a permanent increase to 8mg. My next drawing is scheduled for Monday.

I am now having fairly severe pain in my when sitting at my desk and I'm contemplating a move back to the bed.

I went to the gym this evening and rode the bike for fifty minutes; my leg felt surprisingly good while I was exercising, but it is worsening now that I am back at the desk.

Feb 19, 2002

In spite of the continuing discomfort in my left leg, I ran two miles today at 7.5 mph and it was tolerable. Sleep has been restless at best.

Dr. Moskovitz called and said that my INR was only 1.7 last Thursday, not much of an improvement from last Tuesday. He recommended I return for another test tomorrow.

Doug and I attended a motorcycle maintenance class from 6-9:30pm and I had a lot of trouble sitting still, even for fifteen minutes, because my leg ached so badly. Fortunately, towards the end of class we did some hands on work allowing me to get the blood flowing again.

Feb 18, 2002

My leg felt lousy this morning at the gym so I ended riding the bike for forty minutes instead of running. I am still having a lot of pain when I work at the computer (I've been trying hard to sit at the desk instead of in bed). So far, the best approach has been to set the alarm on my watch and get up every hour to walk around.

Unfortunately--for me--today is President's Day so Dr. Moskovitz's office was closed and I couldn't get my results from the blood test last Thursday.

Feb 17, 2002

After waiting for more than two months, I saw Lord of the Rings: Fellowship of the Ring today. When it first came out, I was in the hospital and since then I haven't been able to sit still for such an extended period of time without my leg aching. We went to the 10:30 AM show and sat in the handicapped seating area so that I could stretch my leg and have easy access to the door. I had to get up five times, but the theater was only half-full so hopefully it didn't disturb too many people.

The movie was good.

Feb 16, 2002

This past week I started riding the motorcycle again for short distances. I was scared to death, worried that I wouldn't be able to support the bike's weight with my game leg or I would bleed to death as the result of a minor accident. After two short, nervewracking rides I was feeling much more comfortable mentally and the only physical issue was bending my leg to reach the footpeg (it's a sport-bike). Despite all the problems, I knew I had to start riding again after seeing this. Grrr.

Feb 15, 2002

I continue to have trouble running long-ish distances due to the pain in my left leg. Today I ran only two miles, but increased the speed to 8.0 mph. The pain and my pulse were both quite strong at the end.

I am also having problems sitting for greater than fifteen minutes, which may make full-time work a bit tricky....

Feb 14, 2002

Valentine's Day, Yippee.

I had my blood drawn again to see if my increased Warfarin dosage had raised my INR from 1.5 to a therapeutic 2-3, but the results won't be available until tomorrow. At the lab, it seemed like they rushed me to the front of the line--I'm not sure I like being a pity case. I asked the technician how much the INR/ProTime test costs and she said "around $100." It's hard to believe that watching blood clot can be so costly.

Feb 13, 2002

Today is another exciting day for all you DVT fans--I had both legs scanned at California Pacific Medical Center today. I was annoyed at the technician for giving me some grief about having it scanned again so soon. He thought I should just live with the thing and not waste more time/money having it examined. Plus, he didn't see any need to examine the right leg, even though it only took ten minutes. Jerk.

The results of the scan were that the femoral vein in my left leg had expanded due to the blockage in the calf and that I had some recanalization in the calf (this is good); but it was limited and he did not expect it to improve. It was the doctor's assertion that the clot has become fixed in the vein and it will be there forever. My right leg was fine.

Surprisingly, this somewhat depressing news didn't bring me down too much. I guess I had resigned myself to that fate weeks ago. I meet with the vascular surgeon, Dr. Nelson Lampert, on February 21 to hear his assessment.

I wasn't able to run much this morning due to the pain, but I did ride the stationary bike for twenty minutes.

Lastly, I found this unsettling picture of a femoral vein clot.

Feb 12, 2002

My leg felt good all day and I was in fairly high spirits. I was able to run 3.0 miles at 7.0mph without any problems. The only pain I had (which was probably imaginary) was while sitting for long periods at my desk.

Feb 11, 2002

I had a blood test this morning and my INR was 1.5 (it should be between 2.0 and 3.0) so Dr. Moskovitz prescribed an 8mg dose of Warfarin today and to start taking 6mg daily rather than alternating 5mg and 6mg. I will be retested again on Thursday.

I ran 3.0 miles at 7.0mph this morning again -- mild swelling and pain during the run. I sat at my desk longer than normal today (in place of sitting in bed with laptop) and the swelling in my left leg was pronounced with mild pain in the calf and shin.

Feb 10, 2002

I spent a 100% pain free morning walking through Golden Gate Park with Joe and Shannon.

I ran 3.0 miles at 7.0mph in the evening with mild pain in my left leg.

Feb 09, 2002

Another day spent touring SF with Joe; the piers, cable cars, Haight Ashbury and Sausalito. My right leg was painful for most of the day; more than likely caused by favoring my left leg yesterday. The pain, but not the swelling, subsided quickly once I was able to elevate the leg.

Feb 08, 2002

My brother Joe flew in today from Iowa and we spent the day traipsing around Marin County (Muir Beach, Muir Woods and Spencer Battery). All told, I probably hiked four miles before I had to sit down and elevate my leg. I felt fine, after the drive home.

I ran another 2.0 miles at the gym this morning and the last half mile was at 7.5 mph.

Feb 07, 2002

I am starting to feel normal again.

During my run today I had pain in my left leg, but it subsided quickly when I switched to walking. During the rest of the day I had very little pain but quite a bit of swelling.

Feb 06, 2002

I walked a couple of miles early this morning and it felt good.

I also saw Dr. Moskovitz and he didn't have much to say about my leg. Basically waiting for the results of my new scan next week....

Feb 05, 2002

I ran 1.5 miles at 6.8 mph then walked another .5 at 3.5 mph this morning! I had a good deal of pain in my left leg while running, but it subsided quickly after stopping. I still have pain in my chest, but less frequent and less severe.

I tried to swim this evening as well, unfortunately, they were having water aerobics so I substituted eating a burrito.

Feb 04, 2002

My left calf was sore after sitting in an uncomfortable position while working in San Jose. I am also still having minor pain in my lungs.

I lifted weights today and walked 2.75 miles @4.0 mph. My left calf hurt noticeably toward the end of the walk. I had trouble determining if it was muscular stress or related to the DVT. I had no pain in my right leg.

Feb 03, 2002

I am feeling kind of low today. My legs appeared to be very swollen in the morning, so much so I decided to take pictures so I would have a point of reference in the future. Without further ado....

• My left leg on February 3, 2002
• Both legs on February 3, 2002

Feb 02, 2002

I walked 2.5 miles at 3.5 mph and had little swelling and almost zero pain. I plan to start running again soon.

I worked for a while in San Jose today and my leg would start to ache a bit while I was working. I got up and walked around every hour or so which helped significantly.

For the record, my right leg seems to be fine; I retract my statement about having a second DVT.

Feb 01, 2002

I drove back to SF from Sacramento today with little pain. I stopped twice to stretch during the trip. I'm still on a mental high from the good news yesterday.

The BBC reported that a class action suit against England-based airlines was approved.

Jan 31, 2002

I'm almost ashamed to say that I'm sitting on the bed crying uncontrollably. I just took a call from Dr. Hufford and found out that all the genetic tests came back negative. I'm overwhelmed with relief--I have never felt better in my life.

He said that the first test for the Lupus Anticoagulant was positive, but the second confirmation test was negative. Protein C and Protein S were both low, but inline with expectations given my current Warfarin regimen.

Jan 30, 2002

My leg felt good all day and I only experienced minor swelling. No exercise today due to lingering effects of the flu.

Jan 29, 2002

I exercised in the morning and then drove to Sacramento. I stopped twice on the way there and once on the way back. I had minor pain in both legs while I was driving and while sitting in meetings; but all-in-all it was an uneventful trip.

Jan 28, 2002

Feeling better today, flu-like symptoms are mostly gone. I made it to the gym in the morning and walked several miles at a good pace.

Jan 27, 2002

I am recovering from a bout with the flu and was able to do some useful work today.

Little pain or swelling today despite sitting upright in an office chair for a significant part of the day. I'm still wearing the ace bandage on my left leg during all my waking hours.

Jan 26, 2002

Woke up still feeling lousy, but couldn't stand the thought of laying around in bed all day. So, I went to the gym about 9:30 AM and lifted weights for forty-five minutes. After that I walked on the treadmill for eighty minutes at 3.5mph. I didn't plan on walking that far, but the Arizona-UConn basketball game was really good.

Surprisingly, my left leg wasn't very swollen after walking that far, but I was still having some mild pain in my chest. I'm still hoping that this is just from cold/flu.

Jan 25, 2002

The big day finally arrived; unfortunately, the results did not. Dr. Hufford, my hematologist, said that the lab hadn't finished with the tests yet. He asked them to fax the results as soon as possible and said that he would call me within a week.

I am inclined to say that "no news" is in fact "irritating news." C'est la vie.

Jan 24, 2002

I felt too lousy to exercise this morning. After laying in bed working on the computer for the majority of the day I went to the gym about 4pm. I ended up walking a total of four miles averaging just better than 4 mph.

Also, my left leg (confirmed DVT leg for those of you keeping track at home) appeared more swollen today than it has in the past week.

Still going crazy about the doctor appointment tomorrow. Either way, it will be good to know.

Jan 23, 2002

I felt miserable this morning. I'm not sure what part of it was related to my DVT and what part is just another ill-timed sickness. I have a sore throat and some pain in my lungs.

I'm anxious about the doctor appointment on Friday and am having trouble sleeping at night.

Jan 22, 2002

I made it to the gym late in the afternoon was able to lift weights and run three miles in just under twenty-seven minutes without incident.

Jan 21, 2002

I swam in the morning at the Burlingame Aquatic Center. I felt good, but still out of shape.

Later in the day, I was coughing and felt like I was having heart palpitations. In my mind, I imagined pieces of the clot breaking off and giving me that feeling as they passed through my heart and into my lungs. Sometimes I have an over-active imagination.

Jan 20, 2002

My right leg was hurting this morning without any obvious cause. Also, both legs were cramping after sitting at the computer for the first time in several weeks.

I ran three miles in just under twenty-seven minutes. I had mild pain in my left (DVT) calf while stretching afterward, it subsided fifteen minutes later. I ran with the ACE bandage and had very little swelling.

Jan 19, 2002

I was feeling a bit lazy today and only ran two miles at 6.5 mph. I am still having moderate swelling whenever I stand up without using the ace bandage, but it doesn't seem to be worse after running.

The pain in my right leg was worse today, but not as bad as it was last week.

The Raiders got screwed!

Jan 18, 2002

I ran three miles at 9 min/mile--a new post-DVT record--and I went for a brief swim today. Also, my weightlifting regimen has returned to normal.

There were a couple of messages on the Yahoo!Thrombosis group from people who were diagnosed with genetic clotting disorders which put me into a pretty bad mental state for a bit.

Jan 17, 2002

I ran another 1 1/2 miles this morning without excessive pain in either leg.

I self-prescribed an additional 1 mg of Warfarin today in order to boost my INR a bit.

I am getting anxious to ride my motorcycle again. *sigh*.

Jan 16, 2002

I ran 1 1/2 miles this morning in 10:36, not bad for my condition, but I suffered pain in my left calf for the remainder of the day. In addition, my left leg felt like it was constantly cramping.

The INR reported from my blood test yesterday was 2.1, I'm to continue my current Warfarin regimen of alternating five and six milligrams.

Jan 15, 2002

I walked 1.5 miles this morning at 3.5 mph with a 5% grade and then ran 1.0 mile at 6.0 mph. My left leg was swollen after the run, but returned to normal shortly thereafter. In the afternoon I slowly swam 1100 yards.

I also had my blood tested (INR, etc.) at St. Luke's and should have the results tomorrow.

Jan 14, 2002

I only woke up once last night, my first night without codeine.

This morning, after lifting weights, I walked 1.5 miles on the treadmill at 3.5 mph at a 5% grade. This evening I walked one mile and ran one at 6.0 mph. There seemed to be a little swelling in both legs immediately after getting off the treadmill, but little pain when actually exercising. My main concern was that my pulse rate was very elevated (180) while jogging.

I also attended a two-hour meeting today without wrapping my left leg (by accident) in an ace bandage. The leg became quite swollen, but was not painful.

Jan 13, 2002

Little pain in either leg today. I ran half a mile on the treadmill at six mph and had zero swelling in my right leg and moderate swelling in my right. My gait seemed a bit askew and I could only take very short strides. Nonetheless, it felt good to run again.

I am also no longer taking any pain medication.

Jan 12, 2002

After exercising, I went shopping at Union Square. After an hour walking around, my right leg started to hurt so badly that I needed to sit down. It felt as bad as my left leg did when I was in Las Vegas. There is still no obvious swelling or discoloration of my right leg. Left leg was wrapped for the duration of the outing and it felt fine.

Jan 11, 2002

I drove from SF to Sacramento today stopping three times in each direction to stretch. After driving for half an hour, I began to have pains in both calves and my right thigh.

At the point, I'm fairly certain that I have a clot in my right calf -- the pain does not seem to be improving at all.

Jan 10, 2002

Fewer problems today. Intermittent pain in both legs; the pain in the right leg is more acute. I walked two miles.

Jan 09, 2002

More upper-body weightlifting and I walked just under two miles, including one mile on the treadmill at 10% grade. I also walked 400 yards in the pool and swam another 350.

I had moderate pain in both right and left legs throughout the day. Swelling in the left leg is substantially reduced.

I returned the reporter's phone call today, but did not hear back from her.

Jan 08, 2002

Today I had my appointment with Dr. Lampert, the vascular surgeon, and he said that my left leg was progressing nicely. He said I should be able to exercise as long as they don't require my legs to be bent for extended periods of time. He thought that the pain in my right leg was almost certainly from walking strangely over the past few weeks; nonetheless, he ordered a scan for both legs on February 13 to quantify the progress in my left and to rule out any issue in the right. I also had my blood redrawn today for Dr. Hufford.

I was contacted today by a reporter from the SF Chronicle who was given my name by the administrator of AirHealth.org. She wanted to talk to me about a piece she was writing on travel safety. I still haven't decided if I feel like having this in the paper.

I walked approximately two miles again today and did some light weightlifting.

At 17:20 today Dr. Hufford called to say that two of my blood tests, Antithrombin III and Factor V Leiden, both came back negative. Yay!

Jan 07, 2002

I received the results of my VQ Scan from Dr. Moskovitz's office and they were normal; meaning that I don't appear to have any pulmonary embolisms at this time.

My right calf is still feeling left-out from the past several weeks and is still acting up, to be discussed tomorrow with the vascular surgeon.

I walked one mile on the treadmill today at 2.8 mph and then walked home, about 1.5 miles total.

My headaches, presumably from the Warfarin, are better today.

Jan 06, 2002

My left leg is feeling good. I walked for just under one mile on the treadmill at 2.5 mph and then walked home from the gym. I'm still having noticable pain in my left leg and minor pain in my chest.

Jan 05, 2002

Still having loads of pain in my other calf. I'm driving everyone nuts talking/worrying about it. Bah!

Today I drove my own car, which has a manual transmission, for the first time since the diagnosis. I drove it for about forty-five minutes from Doug's barn just outside Petaluma back into the city. No major problems, but my right leg was hurting mildly throughout the trip.

I read in a message from a Yahoo!Groups member that Warfarin is known to cause migraine headaches. Presumably, this is why I have been having such bad headaches lately. Well, either that or brain cancer.

Jan 04, 2002

I exercised every day this week (M-F) and doing so has made me feel much better mentally and physically. Currently, the only nagging pain occurs when I'm laying in bed is from my right calf; this pain continues to get worse and it feels so similar to the pain I was experiencing in my left calf that I'm starting to worry. That said, everyone else thinks I'm nuts because it would be nearly impossible to get one while on Warfarin; nonetheless, I'm concerned and will be discussing it with my vascular surgeon, Dr. Lampert, next Tuesday.

This afternoon I received a call from the lab to let me know that the eight vials of blood they took from me weren't going to cut it and that I would have to go back early next week. Apparently, the blood is overnighted to a different lab for the complex tests which is why they don't take samples on Friday. Also, both my parents had blood drawn today for testing to help determine if there was a genetic link.

Jan 03, 2002

Slow day for the devoted followers of my DVT. My right calf is still hurting, but if I did develop a second DVT while on the Warfarin I'm almost assuredly going to die so no sense worrying about it. Blah.

I received the results from yesterday's INR test, I'm currently at 2.4 and will continue alternating 5mg and 6mg daily. No word on the results of the VQ scan.

I received an email from Mike of AirHealth.org fame saying that in his database of case histories there is a strong correlation between athletes and DVT. He asked for, and I granted, permission for him to forward my contact information to the University of Utah where they are studying the causes of DVT.

Jan 02, 2002

Today I felt like a lab rat. I started the morning at California Pacific Medical Center to have blood drawn for a panel of tests to detect any predisposition to clotting. Next I drove to St. Lukes Hospital where I waited for thirty minutes to have blood taken for my INR and PT reading. Finally I saw my general practitioner and he arranged for a VQ scan to be done later in the day because of the chest pains I've been having. He also said that I should be able to switch to monthly INR tests, after next week.

The VQ scan was a strange, but easy process. First you spend five minutes with your nose clamped shut breathing from what looks like the end of a snorkel connected to a small box. Next, some slightly (so they tell me...) radioactive material is injected into the box and is subsequently spread through your lungs. After the five minutes you move to an examination table while pictures are taken from six different angles. Lastly, a second radioactive substance is injected into your blood stream and the picture taking process is repeated.

While wrapped with the Ace bandage, my left leg feels good when I'm walking around and it only became sore after being on my feet for over an hour.. In addition, the awful muscle soreness in my left thigh has begun to subside. The pain in my right calf (non-DVT leg) is still present, I know it's virtually impossible for me to develop a DVT while on Warfarin, but it's still worrisome.

Jan 01, 2002

My current mental torture is wondering if the Warfarin is working. Both my parents related stories of blood "oozing" from under bandages after having blood drawn and small cuts bleeding for an extended period of time. This worries me because my blood still seems to clot in an approximately normal amount of time--the lab technician at St. Lukes even commented that it was clotting quickly. I posted a message to the thrombosis group and it seems that a lot of people have experienced clotting similiar to me; this helped to put my mind at ease. I have also started getting a lot of pain in my right leg; I'm *almost* convinced that it is simply muscle soreness from walking around after 2 1/2 weeks of bedrest.

In an effort to catch a second DVT quickly I have started measuring both my calves each day so that I'll be aware of any perceptible change and have a solid baseline. I'm recording the data in a spreadsheet to make cool graphs. :)

Dec 31, 2001

I walked to the gym today for the first time since my diagnosis. I did a a little upper-body workout and walked home. It felt great mentally to be out of the house, on my own and doing--even a little--exercise.