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Patient Diary -- Cheri Thompson Cheri passed away this morning, January 28, 2004.
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June 26, 2000 Hi I have procrastinated long enough....here is my story. I am 52 yrs old and was diagnosed with PPH in 1975. I am guessing a little when I say 1975 because we know it was in the seventies, probably early seventies but nobody remembers the actual year....too long ago! So I just picked 1975 as the middle ground...I did not get PPH from diet drugs but actually it was because of diet drugs that I was diagnosed. I had gone to a diet clinic in the 70's to try and get on a "miracle pill" of some sort, they did a simple work up and sent me home to see my Dr. My blood pressure was extremely high. I went to see my Dr. who did and EKG and he determined that there was something abnormal about it and he sent me to a cardiologist. My cardioligist did several tests including a right heart cath and gave me the news,,,,I have PPH....which didn't mean a lot to me as I had never heard of PPH. He explained a little of what it was and then told me he wanted me to go to Mayo clinic to confirm his diagnosis,,,probably because he had never seen this before. So Mayo did a complete workup, congratulated my local cardiologist for recognizing this rare disease. They told me that no one knew what causes PPH, they had NO treatment for it (remember this was a LONG time ago) and had nothing to offer except that because I was not currently having symptoms that I might have problems for a long time. They sent me on my way. I worried about if for a few days but not long because I felt fine and I was young and invincible. I continued to do very well over the next 10 years or so. In approx 1985 I started having LOTS of trouble with sob and went to see my pulmonary Dr.....he knew a little about PPH and immediately put me on inhalers and oxygen(nights only) and talked to me about possibly going and getting listed for transplant, which I wanted no part of. I was very very overweight at this time and I also smoked. I lost 120 lbs and quit smoking,,,my Dr. was very happy with me but also cautioned me that this would not cure my PPH and probably wouldn't ease the symptons,,,he was wrong, the symptoms went almost entirely away. He was astounded , he said that none of the literature he had read indicated that this would happen. So I went on for a few more years doing just fine. Approx. 1990 is when I started having problems again and my Dr. was always urging me to see about going to a transplant center and see about getting listed. I resisted that for years while I continued to get worse. Then in 1995 I finally gave in and went to a transplant center to be evaluated for transplant. They did a LOT of tests on me which was not fun. It seemed like whatever test they would do it would indicate that they needed to do 2 more tests! I walked into that hospital on my own 2 feet,,,but in 2 weeks time I was in a wheelchair, due to depression and exhaustion and extreme sob and weakness. They said I was probably not going to be approved for transplant because I was too overweight(I had gained most of that 120 lbs back) the head transplant Dr. was in my room talking to me, my entire family was there, I asked him what my chances were and he said, without transplant you probably won't live more than 6 to 9 months! You can imagine the scene that followed! The next day the card. I was seeing at this hospital said if I was willing to go to another hospital in the area there was a Dr. Rich there that was having some success with a very new drug called Flolan and he explained a little about the pump and mixing process to me.....Did I want to go see this Dr.? I was unsure..but I did. Dr. Rich did tests and determined that Flolan would help me, He couldn't promise how MUCH it would help me, might only be 5% but I had to be very sure if I wanted to go on it because he said once you are on it you are on it for life! WOW what a decision I had to make...I went home to ponder this and I also lost a good deal of weight to be eligible for the transplant if I needed it. I talked to everyone in the medical profession that I could think of to find out what everyone's opinion would be. What it all boiled down to was what choice did I really have? Double lung/heart transplant was still very new and Flolan might be able to keep me going until transplant wasn't so risky. My pressures were 68 and my cardiac out put was about 3.5. I went on Flolan and waited for it to help me,,,they said it should start to help in 2 months or so. I waited and waited and waited,,,nothing. I was an emotional wreck,,,I had gone all through this and now it wasn't going to help!? Dr. Rich told me to be patient and sure enough one day I realized, hey! I was breathing better! and I continued to do better and better. I am a very grateful woman, grateful that Dr. Rich was in my area, grateful that I was sent to see him, grateful that flolan helped and has continued to help me. I am absolutely certain that without it I would either be in a wheelchair or dead. I am doing very well,,,,I work part time and take care of my own apt and needs. I am a long term survivor. My goal is to be the longest term survivor!!!
August 29, 2000 Since I have just seen my PH Dr. for the first time in 2 1/2 years ( I should be going twice a year, but I don't.....thats not good....but thats just me) anyway, I just had my right heart cath and echo and treadmill....I am writing this just to update this diary page.... My pressures are all the numbers are almost identical to what they were over 2 years ago....while one would hope that they would go down,,,one is also very relieved that they have been stable! My pressure was 51 ( it was 48 2 years ago and Dr. said it can flucuate a few numbers) and my cardiac output was 6.5....they are very happy with my stability and said that we can reasonably expect to be kept at this point for some time to come! I'm happy with that! Because one of the side affects from Flolan is foot pain....and its the only one that gives me a lot of trouble....the Dr. said that he is going to do a dose decrease on my Flolan, very slowly,to see if that will help....sometimes over time, patients are getting too much Flolan,,,,we would hope that we can find a middle ground in the decreasing....where my foot pain will lessen and my breathing will not be compromised.....I have gone down 2 ng and the foot pain is already lessen....I am now at 36ng with a pump rate of 75 and am on 4 red top Flolan.....more later Thursday, October 05,
2000 Sometimes its hard to remember when I was so so sick....I've been feeling pretty good for so long that I have gotten spoiled....but somedays it drives me NUTS to be tied to this pump....to have to mix...to take care of the site...to have to remember to change the cassette....and then I go and read some of the diaries and I realize that I have been very lucky and I continue to be very lucky....for a lady who was given a 6 - 9 month life expectancy to the lady I am now....well I guess you would have had to be there! The reason I am writing this is to remind me that when I am just "sick of this whole thing",,,,to remind me that this is just not that bad....I can breath , at least most of the time :)....and I can take care of myself, I work part time...life is not that bad! :)
Its been a while since I wrote here....nothing too much to write about, life has just been plodding along, I have felt pretty good and most the time its easy to forget that I have this serious life threatening disease. I have been so lucky to have done so well on Flolan, I sometimes get very tired of the routine of the pump and mixing and being tied to a schedule, etc...but I can always remember back to the days before there was any treatment and how bad I was getting and then I can put things in perspective again. One thing I will comment on is that I took a trip to Las Vegas a few weeks ago with my mom and my sister.....I have found out that I am NOT as good as I think I am....ie. my "flolan feet" and leg pain were extremely bad...in fact one day my sister pushed me around half the day in a wheelchair.....I didn't really think I was doing that bad but its been hard to judge because I lead a very sedentary life,,,,I sit a lot at home and on my part time job, so I am not on my feet a lot....and therefore did not know how bad it has gotten.....well, we are in the process of lowering my Flolan dose...I am now at a rate of 66, I've had 2 rate decreases in the last year to see if we can alleviate some of this foot and leg pain.....here's hoping!
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