Living with Re-occuring DVT's for 21 years
This is a long story so grab a snack and a drink.
In Oct. of 1982 I was placed in a girl's home at the age of 17 due to running away. In January of 1983, they insisted that I begin taking the birth control pill because all the girls in the home had to be on them. I was scared of taking the pill because my mother had passed away at the age of 29 from blood clots. They took me to planned parenthood who drew some blood from my finger and informed me that I would not get blood clots.
I took the pill for a month but was still terrified of them so began cheeking them and flushing them down the toilet. I became an emancipated minor soon after that and moved in with my future husband. In March of 1983, I began to notice that I was having a very hard time breathing and was coughing up blood. Every breath I took felt like I was being stabbed with a very sharp object. We walked the ten blocks to the hospital with me stopping and resting every few feet, only to be told once I got to the ER that I had pleurisy. They sent me on my way telling me it would just have to run its course.
A week later I began to have pain in my left groin. It was uncomfortable but not overly painful at this point. I went to bed that night and woke up the next morning with my calf so swollen it looked like I had a football implanted. I couldn't stand up because it felt like gravity was just pulling on my leg and causing extreme pain. I crab crawled everywhere that day. Until finally that evening my husband's cousin's husband got home and took me to the hospital and dropped me off. The doctor examined my leg and told me he thought I had blood clots. To me, this was a death sentence since both my mom and my grandma had died from clots.
I was in the hospital for 21 days that time, in ICU twice while they tried streptokinaise and urokinaise on me. The streptokinaise didn't work and caused my fever to spike to 105. Since they had never used urokinaise there before they had to get special permission from the hospital board members to try it on me. Apparently the clot in my leg ran the entire length from my ankle up into my pelvic region and they believe it went even further but they couldn't tell. They determined this by doing a venogram on me, wouldn't recommend them at all!
Finally was released from the hospital only to end up back in there 2 weeks later with a pulmonary embolism and was in there again for another 2 weeks. Funnily enough the PE felt exactly like what they had determined was pleurisy the first time I went in.
I've been in and out of the hospital numerous times since then with multiple multiple DVTs and PEs. In 1996, I finally had a vena cava filter implanted. I have been on coumadin since I was 17 and I will be turning 39 this year. During pregnancy (I have 3 children and have had 4 miscarriages and 1 stillbirth which they think is related to the clotting issue I have) I have to give myself heparin shots 4 times a day of upwards of 17,500 units each shot.
I was diagnosed in 1983 and 1984 as having anti-thrombin III deficiency. But in 2000 I saw a hematologist who is researching clotting disorders at Chapel Hill, NC and he retested me and said I do not have this disorder and that they must have tested me wrong all those years ago. He has tested me for every known clotting disorder and the tests have come up negative. They don't know what causes me to clot.
What we do know is that it is hereditary, since both my mom and grandmother died from clots at young ages. We also believe that the birth control pill was the catalyst that kicked my condition into gear, so we believe it is somehow hormone related. Other than that, we have no clue what causes them.
I can say that over the years this has really effected my lifestyle in adverse ways. I can't walk for very long without my leg swelling and getting heavy and painful. I can't sit too long without it causing the same. My left leg looks like it belongs on an 80 year old instead of an almost 40 year old. I have tons of spider veins and also have lots of varicose veins.
I can remember once taking my son to nature park and having to leave early because my leg couldn't handle the walk and my son saying to me, "I hate your leg!" I just started crying and told him, "So do I." So it's been a hard adjustment over the years. I've also heard over and over again how I can die from these. That in itself is enough to cause depression when you hear it as many times as I have, from as many doctors as I have over the years. I realize how lucky I've been to survive as long as I have, to have survived pregnancy as many times as I have, and to still be able to walk and move. But living with this day to day can wear a person out.
Oh a sidenote, if anyone has any information about this I would be appreciative. A lady back in the late 80s who worked in nuclear medicine and had seen me multiple times to look for PEs informed me that 3/4 of my left lung was scar tissue from the clots and 1/4 of my right lung was scar tissued. My question is, do the lungs eventually repair themselves from this scar tissue? I haven't had a PE in many years now and am curious as to how my lungs are now.
If you read this far, bless you. If you would like to ask me any questions about my experiences please feel free to email me.
Brenda
From:
Brenda Salsman - brendasalsman@yahoo.com
