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In March of 1995, I went in to see the doctor. I had been finding it difficult to catch my breath with even a small bit of exertion. My legs were also swelling up really bad. They did a chest x-ray, ekg, and some other tests including an arterial blood gas. They found that my lungs were only working at about 55% of their capacity They were surprised that I was walking around but figured that my body had become accustomed to using less. They told me I had congestive heart failure and would need to use oxygen. I was quite surprised and a bit frightened. I read what I could and decided I would be ok. I was put on several medications and made an appointment for an echo cardiogram. The echo cardiogram showed that I had pulmonary hypertension.
I started having trouble with heartburn and reflux. In April of 1996, I was eating dinner and could not get my food to go down. Water wouldn't go down either. I waited until morning and then went in to the doctor. By this time, I could get water down again. Well you guessed it, more tests. This one was a barium swallow. They said it was strawberry flavored, but I never tasted a strawberry like that. haha Well anyway, the doctor made me an appointment with a gastroenterologist and yes, more tests. This was an endoscopy. The doctor said my esophagus and stomach were very inflamed. I had GERD. He put me on more medications. I seemed to be going along ok until I woke up one day and couldn't put any weight on my leg. I had some terrible pain right behind the knee. I made an appointment and they took x-rays and said it looked fine and sent me home with pain pills. The next day, I was called from the doctors office where they said that after looking at my x-rays again, it could possibly have a fracture in it and I needed to see the orthopedic doctor. I went in to see him and he looked at the x-ray and said no, it isn't broken, but there seems to be a calcium deposit on the bone and that could be causing the pain. His wife was the physicians assistant and she was going to do the paperwork on me. She looked at my hands and asked me if my fingers were always that blue. I told her that I had been noticing them doing that for some time and figured that it was just the cold. She asked me if I minded if she did a blood test on me cause that was concerning her. I figured sure why not! This was late February of 1997. She called me 2 days later and asked me if I could come in to see her, so I did. That was when she dropped the bomb on me and said that my blood tests came back positive and I had Scleroderma. I had never heard the word. She said she made an appointment with me for a rheumatologist and a new doctor in town who was a pulmonist. I had her write down Scleroderma for me cause I knew I would never remember it. All she said was that it was an auto-immune disease. I went home and told my husband what she said and we decided to go to the library and find out what this was. (I didn't have a computer at the time.) Well that was a big mistake because what I read was that I had 2 to 5 years to live. I was scared half out of my mind. I had already been sick for 2 years, so at the most, I figured I had 3 left. I was able to find out a bit about what Scleroderma was. It all seemed to start making sense now. A couple of days later I went in to see the pulmonologist. He was a young and enthusiastic doctor. I told him I had read everything I could find on it and that I didn't want anything sugar coated. I wanted to know everything straight out. He said ok and told me that there wasn't a lot known about Scleroderma. There was no cure. He was very concerned about my lungs and said he wanted to look into everything he could before talking about a transplant. I almost fell off the table and I think it shocked my husband too. He said that a study was being done on a new drug for pulmonary hypertension and would I be interested in getting the details on it and possibly trying it. I told him I would be willing to hear about it. A couple of days later, he called and asked me to come in to see him. When we got there, he had a bunch of paperwork for a medicine called prostacycline or more commonly known as Flolan. He explained a bit about the testing. He gave me the paperwork and told me to take it home and look it over and then let him know whenever I made a decision. We read over everything and talked it over. We decided we would give it a try. I went back in to talk to the doctor and I asked him would he try it if it were him and he said yes. I told him we had decided to go ahead and try it. He said he would call the doctor and see about getting me into the study. It was experimental. They had used it on people with pulmonary hypertension, and were now experimenting on people with pulmonary hypertension secondary to scleroderma. If the pulmonary hypertension was high enough, I would qualify for the testing. They got me an appointment for July. I had to go to Denver for the appointment. I would need to be there for a week. So, off I went to Denver. They would do Pulmonary Function Tests and a cardiac catheterization to measure the pulmonary hypertension. Well it was sky high enough for me to qualify. So they put a catheter in my chest. This medicine had to be administered by continuous infusion. They taught me how to change the patches and how to mix up my medication. Everything has to be very sterile to do this. When I got home, I was attached to a pump. I went back to Denver for a 6 week check-up and another heart catheter. They said there was no improvement, but it hadn't gotten any worse. Well that was disappointing, but I figured maybe it was keeping me from getting worse. Well, one day I was sitting at my desk, and I felt a twinge where the catheter was. I looked at it and the catheter had pulled out of my chest. So we hurried to the ER where they had the surgeon come in and decide that morning would be best to put in a new one. In the meantime, I was getting the medicine through an IV. Oh joy, right? haha They put in the new catheter and home I went with catheter #2. In the next year, I would be hospitalized for more catheters. I kept getting infections. I have a little problem when I get them. I am allergic to many antibiotics, and with these infections they have to use the IV antibiotics. The major big ones. I would spend anywhere from 1 week to 19 days in the hospital. The 19 day stay was the craziest. They removed the catheter and put in a new one. Sent me home after a week, and 2 days later I was back in. The same thing going on. I had fever, chills and terrible sweats where I would soak the bed and my nightgown several times a day. The fevers I got with these infections ranged anywhere from 101 to 105.7(my personal high). Well they couldn't find the infection this time. They started thinking it was in my heart and flew me to Albuquerque to a hospital there. Well they did every test in the book, up to a bone marrow test. Yup, you guessed it, they drilled into my hip bone and got some marrow for testing. Well, after every test in the book, they decided to go ahead and try to quit one of my medicines. It was known to cause fevers. Well 2 days after they quit it, I had no more fever, chills and sweats. So, finally I was released and sent home. In March of 1998, I finally got a used computer and got hooked up to the internet. The first thing I looked up was Scleroderma. Was I ever surprised to find out that there were so many people out there and they were just like me. The stories I read could have been mine. I was so thrilled. I would be reading and would yell at my husband to come look. He said that after I got the computer, my attitude seemed to change and I seemed happier. That is where I started chatting with Judy, Lynn, Linda, Don, and a bunch of others. I looked forward to our chats. I would have loved to go to Houston that summer for the conference, but instead I spent the time in the hospital again. Well, now I am on my 10th catheter and struggling with the idea of quitting the Flolan. I am allergic to so many antibiotics, that my primary care doctor says I have 2 antibiotics left and that is it. The Doctor in Denver would like to talk me out of quitting the Flolan because he says it could be keeping me alive. My argument is that with all the infections I get and being allergic to so many antibiotics, that an infection could also kill me. So I am kind of trapped between a rock and a hard place. The way I look at things is that when it is my turn to go, it won't matter where I am and what I am doing. |
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