For the most up-to-date information see my DVT Weblog.
This page has been created as a cathartic measure to help me recover from a Deep Vein Thrombosis (DVT) in my left leg. I also hope that others suffering from this condition, or those who believe they may be, can use this journal as a barometer of their own progress. If you have any questions, comments or advice please don't hesitate to email me at tim@hentzel.com -- I would love to help in any way possible. Also, please visit the Yahoo! thrombosis group at http://groups.yahoo.com/group/thrombosis; they can provide an enormous amount of knowledge in addition to commiseration and compassion.
A few pictures of me during the ordeal...
For ten days I suffered from what I thought was a pulled-muscle in my left calf (fairly normal occurrence), but the on-again, off-again pain became more frequent and I began to wonder if it was something more serious. The night of December 10, 2001 the pain was so bad I couldn't sleep. By 5:00am I abandoned all hope of reprieve and manuerved myself out of bed. The instant I put my foot down I collapsed. The pain in my calf was overwhelming and the leg wouldn't support my weight. At this point I knew it wasn't a pulled-muscle and called my Mom--the symptoms were similar to what she had experienced with a DVT and pulmonary embolism (PE) several years earlier. After two minutes on the phone she convinced me to see a doctor.
Suprisingly, I was able to make an appointment with my general practitioner, Dr. Richard Moskowitz, at 2:00pm that afternoon (12/11/2001). During the examination he was skeptical my blood clot theory due to my age (26) and active lifestyle, but after hearing that both my parents have suffered from DVTs he arranged for an immediate ultra-sound (doppler scan).
The ultra-sound revealed a clot behind my left knee (popliteal vein). After this diagnosis I was sent for lab work and then to the emergency room at Saint Luke's Hospital in San Francisco. I was seen almost immediately in the ER and given a 100mL Lovenox injection (low-molecular-weight Heparin) in my stomach as well as a prescription for Warfarin (generic Coumadin) and codeine (you can guess what this was for...). The Doctor also arranged for me to visit an infusion center the next day to learn how to self-administer the injections.
My appointment at the infusion center wasn't until 4:00pm the next day (12/12/2001) so I went back to the ER in the morning for my second shot, this time the wait was nearly four hours. That afternoon my brother, Rob, drove me to the University of California San Francisco Mt. Zion medical center for my appointment at the infusion clinic. At the clinic they appeared to be expecting me and my dosage of Lovenox had arrived by courier. Moments before they demonstrated the technique the director uncovered that my doctor wasn't affiliated with the University and refused to help me (I realize there are legal issues, but I was devastated at the time). It turns out that Brown & Toland, the local group administering my Aetna insurance, had made the appointment improperly. This left me with no way other than the ER receive my shot that evening.
When I returned to the ER they were cleary frustrated that I was using the ER for on-going care. That said, they did give me the injection and admitted me to the hospital to ensure that I would get the injections and stay out of their hair. The registration process took an abnormally long time and I wasn't admitted until shortly after midnight on Thursday (12/13/2001).
My stay at the hospital was a bit unnerving (it didn't take much at this point...). I never felt like the staff was completely clear on my condition and were always asking questions about my medications and dosage. Likewise, my movement was to be limited in order to prevent the clot from dislodging and embolizing yet they continued to have me move around for various reasons. I also felt like they relied on stuffing me with Vicadin to keep me from pestering them (not to say that I wasn't a pain in the rear). In total, I spent 1 3/4 days in the hospital before Dr. Moskowitz was able to arrange a home-healthcare nurse to teach me to administer the shots at home. Needless to say, I was relieved to be out of the hospital and back in my own bed.
The nurse, Martha, met me at home on Friday evening (12/14/2001) . She was a great teacher and I was able to give myself the shot without problem after five minutes of instruction (couldn't this have been done this at the hospital?). She also stayed for another hour to talk about the condition and comfort me as much as possible.
I laid in bed at home for a week with my roommates and girlfriend catering to my every need and driving me to and from the clinic for appointments and lab work. I have no idea how I would have made it this far through the ordeal without their support.
The pain gradually subsided while I was in bed with my leg extended and elevated. Shortly after my return home I discontinued the codeine because the pain lessened and I wanted to be able to quickly ascertain any change in my condition (I took one infrequently at night to help me sleep). Meanwhile, the pain was still crippling when I tried to walk to the bathroom and I was forced to hobble along slowly using roommates or furniture as support (I actually broke the handrail near the stairs during one episode). Also, during this time the swelling in my calf actually increased as well as the discoloration. I spoke to my doctor about this on Wednesday (12/19/2001) and he said that it was "probably nothing" and to call the following week if things had not improved.
By this time I was in the midst of a mental breakdown. Prior to the thrombosis I was exercising twice daily and now I had been in bed for ten days straight with little improvement. I was also acutely self-aware and began turning every pain into the onset of a PE, a heart-attack and numerous other ultra-serious ailments. I was finding it difficult to deal with the fact that I was no longer in perfect health, for the first time in my life I was faced with my own mortality and wasn't dealing with it very well.
I finished my Lovenox regimen on Wednesday (12/19/2001) and was taking 6mg of Warfarin daily. My INR was at 2.2 on Thursday (12/20/2001). The doctor also prescribed crutches and compression hose. Unfortunately, the crutches were nearly impossible to use because I needed to keep my left leg straight, making it difficult to swing it forward. Also, due to the holiday season the company approved by my insurance for the compression hose was unable to fill the order until January. I was also having my blood tested twice a week to monitor my INR.
I saw no improvement from the 20th through the 25th, in fact, the pain in my leg grew worse and I began to experience more pain in my thigh. In addition, I had intermittent pains in my chest starting on the 22nd. I became concerned (understatment of the year) that the clot had either moved or grown into my thigh and that I was developing a PE.
After fighting the urge to go the emergency room for three days, on Christmas night Shannon, Anna (my sister) and I went to the California Pacific Medical Center emergency room. My INR was 2.97 (INR should remain between 2-3 for most cases). They also performed an ultrasound on my leg to detect any movement of the blockage. It appeared that the clot had not moved, but that significant damage had occurred to the blood vessels in my calf preventing the blood from flowing out of the leg causing significant pain (like putting a rubber-band around your finger). Based on a comparison with the ultrasound from two weeks prior it was clear that the clot had not been reduced despite a week of therapeutic Warfarin. The on-call doctor spoke with a vascular surgeon, Dr. Marc Levine, and he said that this was "normal" and that I did not need to be admitted to the hospital. Lastly, the ultrasound indicated that my clot was still "well attached" and that the possibility of PE was low.
As an aside, I was impressed by the service received at CPMC, particularly when compared with St. Lukes. I was admitted to the ER at 8:00pm on Christmas Day and they brought in a vascular technician from the South Bay to scan my leg and woke two vascular surgeons at approximately 11:30pm to discuss my condition. I felt that were ready to do anything necessary to treat my condition.
On Thursday (12/27/2001) I met with Dr. Nelson Lampert, a CPMC vascular surgeon. He reviewed my case history and the ultra-sound (doppler) from the recent trip to the emergency room. His assessment was that I was progressing appropriately; and if anything, was taking it too easy on my leg. He indicated that once a clot had been stable for a week the possibility of it detaching was low. Furthermore, he said the ultra-sound showed that the clot was still well-attached and was beginning to recanalize (blood was making holes in the clot). He recommended that I start walking more each day and ease myself back into regular exercise. When I asked him about the possibility of installing a Greenfield filter in my thighs he said that it wasn't recommended for single incidence cases because to date there haven't been sufficient studies of the long-term effects. I also asked about the use of "clot-busting" drugs and he said there was approximately a 1% chance of brain hemorrhage when using the drugs so they are used only in extreme circumstances. Lastly, he said that I should try using an ACE wrap instead of the compression hose because it was easy to vary the compression and they were easy to apply. In summary, he said to stop worrying about my leg and start living my life.
My main focus now is to determine what caused the DVT. I have an appointment scheduled with a hematologist on December 28, 2001. I am also exploring the possibility that two flights I took maybe have been contributing factors. On September 9, 2001 I flew from Chicago to Istanbul, Turkey, a flight time of 10:45 and on September 15, 2001 I flew from Amsterdam, Netherlands to San Francisco, a flight time of 11:10. Then, only days before the onset of the condition I flew from Minneapolis to San Francisco, a flight time of approximately five hours. As mentioned above, both my parents have had DVTs so there is also a strong probability that I'm genetically pre-disposed to clotting problems.
After what seemed like an eternity, my appointment with the hematologist, Dr. Stephen Hufford, arrived (12/28/2001). I met with him in his office for thirty minutes to discuss my case. He said that there wasn't an obvious cause for my condition, but that the most likely catalyst was ground and air transportation over the Thanksgiving holiday. Like Dr. Lampert he said that my condition was stable and that I should feel comfortable doing day-to-day activities as the pain permitted. He said that the blood tests done while I was Warfarin wouldn't be reliable for several of the genetic factors, but he said they should be run anyway to detect any extreme abnormalities. He also suggested that my parents be tested as that would yield better information in the near term.
For the latest on my beautiful clot, please read my DVT Weblog.
