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My experience with deep vein thrombosis (DVT) began more than 30 years ago in November 1979 when I was 30, and pregnant with my second child. I flew with my husband and 3-year-old daughter from our home in Texas to visit my husband’s family in California for the Christmas holidays the next month. While there, I decided to visit a friend in another part of California and drove 6 hours straight without breaks to get there, and made the return trip two days later. By Christmas, I was spending most days lying on the couch, because I had lingering appetite loss and fatigue.
On New Year’s Day, I noticed a pain in my left hip that caused me to limp a little, and a few days later, my left lower leg was somewhat swollen and tender to the touch. I went to a doctor who advised me to either enter a hospital in California or get home as soon as possible. He did convey a sense of urgency, although I don’t remember being told a diagnosis, nor did the doctor order any tests. He said that if I wanted return to Texas, I needed to go to my doctor as soon as possible after returning home.
I had to use a wheelchair at the airport during my return flight to Texas because I could no longer walk. My whole leg was completely swollen with red blotches all over it, and I felt excruciating pain. The day after I got home, my doctor admitted me to a hospital where I finally received a diagnosis of DVT, which I had heard of because President Nixon had a DVT around that time.
The doctors suggested an abortion to alleviate my condition, but I declined. I stayed in the hospital for 21 days while they gave me heparin to treat the DVT in my left leg. My doctor later told me this was the worst case of DVT he had ever seen. I went home, weak as a kitten, wearing compression stockings and sporting a heparin lock for ongoing heparin doses. I gave myself heparin every 8 hours and the heparin lock was rotated to different veins on my hands and upper forearms regularly to stave off a vein infection. I learned to move very carefully so as not to dislodge the needle, and to take showers, wash dishes and bathe my daughter with my heparin lock wrapped in plastic. I was taken off heparin for the birth of my healthy son, Logan, in August 1980, but continued heparin for another month or so after he was born, after which I took Coumadin® for a period of time. Fortunately, my life got back to normal, without any DVTs or heparin and Coumadin® for another 10 years.
In 1990, I was diagnosed with a uterine fibroid tumor and chose to have surgery to remove my uterus. About a week before my surgery was scheduled, I noticed that dreaded, familiar pain in my left leg (tenderness, but no discoloration or swelling) and went to the emergency room the next day. I told the doctors there that I knew I was having another DVT, but I was told to go home and “keep an eye on it.” I gave them my complete history, as told above. I received no actual treatment in the ER; I just had a talk with the doctor. I guess he wasn’t convinced by my symptoms, since they seemed slight at that point. I felt angry that my HMO chose not to be pro-active. They were content to let my DVT become potentially a bigger problem rather than approve early diagnosis and treatment, and I was angry at myself for accepting their wait-and-see approach. In retrospect, I wish I had been more insistent about getting immediate treatment.
When I went to my pre-op appointment two days later, I told the anesthesiologist about my previous DVT, and the pain in my left leg that made me suspect it was a DVT recurrence. He wasted no time in ordering diagnostic tests. Sure enough, I had a huge clot from my left mid-thigh to mid-calf, and needless to say, my surgery was cancelled. I entered the hospital immediately for treatment of the clot, and was hospitalized for about a week. I was kept on Coumadin® for 6 months for this blood clot.
I had my uterus removed about a year later, when it was deemed safe. I stayed home 6 weeks to recuperate, was ready to return to work, where I’ve been an IT professional—programmer, systems analyst, and project manager for 20 years. On the Friday evening before I was to return to work, I felt short of breath. After a couple of hours, I felt more pain in my chest with each breath, and since I was home alone, I was hesitant about calling an ambulance, so I asked a friend to take me to the Emergency Room. I guess I was worried about it not really being an emergency, I wasn’t sure how serious my symptoms were, and I worried about the expense. If I hadn’t been alone, and if someone had been with me to give me sound advice, I might have made the wiser choice to call an ambulance.
At the hospital, I had to wait about 4 hours for the technician who could operate the machine needed to diagnose my symptoms, during which time every breath became more agonizing. Finally, I was diagnosed with a pulmonary embolism (PE) in each of my lungs. I had a short hospital stay, and was put on Coumadin® for another 6 months. At the end of this period, when my doctor was about to take me off Coumadin®, I asked about my odds of having another DVT or PE, if I stopped taking it.
I was beginning to feel like there was a sword dangling over my head, waiting to fall and strike me with another DVT, and it made me feel very uneasy. My doctor seemed very non-committal and casual about the decision on whether or not to stay on Coumadin®.
I asked him to get some more opinions, and 2 doctors said stay and 2 said stop. I was the deciding vote, and I chose to stay on Coumadin®. I was warned that once I was on Coumadin® I might never get off of it. I was 42 when I made that decision, and now at 61, I am still on warfarin, and get my PT/INR levels checked every month. And sure enough, the anticoagulation nurse who does my PT/INR says I’ll probably be on warfarin the rest of my life.
Throughout this part of my health history, I have been struck by how little doctors and nurses seem to know about DVT, its causes, treatment and cures. When I asked one doctor if perhaps I should find out why I get DVTs, I was told, in effect, there was no point, since the treatment with warfarin would be the same. There is no history of blood clots in my birth family.
I have always been in an HMO, so any testing that the doctor doesn’t order, I would have to pay for out of pocket, which discourages me from getting tested for blood clotting disorders. The main advice I can give people is to become aware of signs and symptoms of DVT, and be your own strongest advocate to get the best possible care for a suspected DVT.
A current post-script to my story is that my son, Logan, born after my first DVT, had surgery on his leg very recently to remove a large benign tumor. He returned to work and within a week developed a blood clot in his leg and is now back in the hospital. I just found out that when he had the surgery, they did a blood test, and found evidence of lupus anti-coagulant disease. His hematologist advises another test to confirm the first result. If his repeat test is positive, he will be on Coumadin® the rest of his life.
“Take Home” Messages
- Call 911 or an ambulance for any unusual shortness of breath in case any emergency happens enroute to the Emergency Room
- Seek care right away rather than chance travelling to another city or state
- Persist when you think you are experiencing a blood clot and healthcare professionals are not responding
- Blood clots can repeat in generations of the same family
- Length of anticoagulation (blood thinner) treatment is determined in each case based on likely cause and location of clot, and individual and family history