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Stephanie D: Scleroderma/Heparin-Induced Thrombocytopenia

She said "You have a blood clot, go to the ER now!"

Crimson Flower by Sherrill Knaggs September 11, 2001, holds another meaning for me as this was the day I found out I was ill.

I had just gotten divorced on the 8th and was living with my parents. My mother, a nurse practitioner, was working and I was heading off to college. I had been having pain in the lower left side of my back. My mom, and doctors all said "kidney infection" put me on antibiotics and sent me on my way.

On the 11th as I attempted to get in my car to leave, I felt as though my left leg was very heavy and painful. So much that I had to physically lift it to get it into the car with me. I made it about a half mile down the road when I became nauseated due to pain and had to pull over. I returned home, thinking I would take a hot bath, hoping to help the back pain. Upon entering the tub, I realized I could not sit down. When I stood up all the way I caught sight of myself in the mirror and discovered my left leg was about three times the size of my right leg. Hurting terribly now, it felt like a 'charlie horse cramp' that would not let up.

I called mom. She said "You have a blood clot, go to the ER now!" I found my dad who took me.

We live in a fairly small town and the hospital has approximately one hundred rooms. It was determined I did have a DVT from the bottom of my heart to my foot. I was twenty-eight at the time. We had no doctors who felt comfortable dealing with an associate's child (my mother has been at this hospital over twenty-five years) in such a severe situation.

After finding someone willing to treat me, they felt I was not stable enough to be transferred, and I was given heparin. After six days of heparin and no results I was transferred to Joplin, Missouri, about thirty miles away. I was given heparin and treated with a drip in the cath lab. I was released a little after a month. We never figured out what caused the clot. Four days after release I went back for an ultrasound to check progress and found out it was all back. They put me right back in the hospital.

As most know, the more you are given something you have a reaction to, the worse the reaction gets. I am no different. I had been given heparin nearly around the clock for over a month. When they tried to give it to me at my second stay at the hospital, I went in to renal failure and bled out to the tune of five pints of blood. And the clotting kept returning.

After a stint in my left leg, a greenfield filter in my subclavian and much discussion, my mother and the eight doctors now had decided I may have scleroderma. My great grandmother, grandmother, and aunt all had/have the disease and my grandmother died due to a clot caused from complications with it.

As soon as I was able, I was sent to St. Louis for testing. Because I had such an amount of coumadin, the doctor I saw at Barnes Jewish Hospital in St. Louis, said testing was inconclusive and I would need to be tested at a later date. He did determine that I have a clotting disorder, heparin-induced thrombocytepenia. The reaction to the heparin put an antibody in my blood that will forevermore cause my body to hyper-clot. If I receive heparin again I will certainly die.

I cannot take lovanox or fragmin, or some think I can, others say no. I don't believe I care to chance it. I can take IV rafludin for clotting and I do take coumadin. However, since I began taking coumadin I have been unable to stabilize my PT/INR. My liver, for some reason, stores then dumps. This has caused several episodes of bleeding out, a lot of fresh frozen plasma, and over ten stays in the hospital as my PT has been unable to read on testing, for several days at a time on too many occasions. When liver testing is done, nothing comes up.

Since my trip to St. Louis, I have been tested for scleroderma three times. Once there was a "weak positive", the other times were negative. I find tremendous amounts of information stating it is not uncommon to never get a positive and that does not mean you do not have the disease. However, I cannot seem to find a doctor who can treat me for scleroderma. I seem to only find doctors who put me on medications and keep me drugged and out of their hair.

Of the CREST Syndrome I have several symptoms. Except for tightening of the skin and a positive test, I apparently have all the signs, as well as a strong chance of inheritance. The Raynaud's and hair loss are the least of my irritations presently.

I was placed in the hospital in September of 2005, as my blood was too thin and I had fallen and hit my back on the corner of our wood stove. I bruised halfway up my back and around my sides. I bled out, got transfusions and thickened up. In the process, I formed clots. One on my lower back that can be felt, and one in my spinal fluid. Just before this happened I was lucky enough to be told of a fairly new doctor at our hospital who has been wonderful. He initially did not agree that I had scleroderma, as he did a test and it was negative, but he has since come around. He has no clue what to do with me, but tries very hard. I fear I am making his job very difficult. He put me on large doses of coumadin trying to dissolve the clots, but to no avail. This only led to my bleeding out again.

I have been in the hospital six times since and hurt so bad that depression is now a problem. Anyone who has this type of life understands that. We cannot find a surgeon willing to remove either of the clots, due to my history of DVTs.

The pain in my hands, not to mention the rest of my body, is such that I can do very little. My left leg has clots in all peripheral veins and always will. This makes it difficult to sit, stand, or walk. When my doctor sends me elsewhere to someone who may be more knowledgeable, I am faced with disbelief, due to negative testing. At one point I had been off coumadin for more than two months with INRs of 1 or.9 when suddenly my liver dumped and I began bleeding out.

I have lost four jobs due to illness and hospitalizations. I have applied and been turned down for disability. I now have an attorney working on a second application.

Growing up I had excessive migraines, but no other problems. After having my second child in 1994, I had my gallbladder removed, a hysterectomy, due to endometriosis (which was done over three surgeries), adhesions removed five times, and my bladder repaired. These all took place within five years.

It has now been decided that this was all connected to the scleroderma. We just were unaware at the time.

I have been married, for the second time, for three and a half years now. He is a wonderful man. He knew I was ill when he met me and when it started getting worse, he never even blinked. He works, driving a truck, all day then comes home to a terribly messy house to feed two children that are not even his. He does the laundry, shopping and homework helping. He even coaches little league. I know there has to be some resentment there, but I never see it. He sleeps in the chair at the hospital and wakes up at strange hours to take me to the ER then goes on to work because his job is all we have.

I moved six hours away to where he lived when we first got married, but he left his job and family to move back here with me when I started getting worse. My mom felt I should be here where she could oversee my care. He never asked questions, just agreed and we moved. My parents helped us purchase a home near them so they could help with the kids. Now to add on to the list, my husband also spends every second remodeling our poor home. I sit in the chair and offer to help, he just tells me to sit there and be good like I am supposed to. I try, but anytime I feel like I can do a little, I do too much, which leads to a day or two in bed. I learn slow.

I have no idea how this story, if this story, helps anyone but it sure helped me telling someone. I am so discouraged and tired of running into walls. I search constantly for information that may help me help my doctors to understand. But, I do not seem to be getting anywhere. I have an appointment with a specialist on Thursday to check out my liver. My doctor is trying to get me into the OU Medical Center.

Thankfully, I am an optimist. I am not quite ready to give up yet.

Thank you for providing this site. If anyone knows a direction I could take, I would like to hear it.

To Contact the Author

Stephanie D.
New email address needed 08-01-06 SLE
Old Email Prefix: todddowns
Story edited 02-22-06 JTD
Story posted 03-31-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Causes of Scleroderma: Genetics
Difficult Diagnosis
Raynaud's Stories

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Stephanie L: Morphea

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