Cleveland Results

I got back from Cleveland last night around 7:30pm EST. It was a long day, with some interesting results. Not exactly terrible news, but not news I was expecting to really hear either.

First of all, I had an echo. Now I've never had an echo done by a man before. I was a little concerned about it, but the guy was very nice! His name was George, and he was from Romania. George was quite entertained by my last name, which means "hurry up" in German. So he did the echo, and he was very good at it. I've had some techs who I've wanted to slap because they were pressing so hard, it hurt like crazy. He told me if he was pressing too hard, to let him know. But he wasn't! I hope that George is around the next time I need to have an echo done!

My bloodwork was next, and that went just fine. I didn't have to wait in the long line I saw when I passed by on my way to get the echo done. There were like 25 people in line then, it was nuts!!

After having some soup for lunch, I had my 6 minute walk. I had a feeling I wasn't going to do well, and that feeling was justified afterward. I went down yet again, only walking 1065ft. That was down about 200ft from the last time, and the time before that, I had also gone down about 250ft. My doctor doesn't really like this trend of mine. I don't really like it either!! I was hoping that he was just going to tell me to go up on Revatio (which he eventually did), but he started looking at all the times I've been to the clinic to figure out what to do with me. He is concerned that my lungs are eventually going to need to be replaced, considering especially that I've had PH for 32 years. That is a LONG time for lungs to be diseased and still viable. But he is not saying that I need a transplant right now. There are still some options, but of course, he doesn't want me to be so sick eventually that I wouldn't make it through a transplant.

There are several other treatment options, some of them my doctor isn't too thrilled about. He isn't sure he wants to try Ventavis with me, which is an inhaled drug. He is worried about my congenital heart problem with Ventavis. He's not thrilled about the new drug, Letairis. He says it's causing alot of stomach problems with patients on it. He's not thrilled with Flolan either, the gold standard in treating PH, but he wouldn't not offer it to me if it came down to that. He knows there are risks with Flolan, especially line infections, which wouldn't bode well for my heart if I had one.

Another issue I'm having is that my blood is so thick, from the lack of oxygen in my system from all the years I've had PH, even despite being on oxygen 24/7 and coumadin for a long time. My hemoglobin count is getting to the point where I will probably need a "blood letting." I can't remember the technical term for it, but basically what they would do is take out, say, a pint of my blood, and put back in a pint of saline. That would thin my blood out a little. Right now my hemoglobin count is 19, and my doctor said he'd probably advise me to have this procedure when I hit 21 or 22.

I also told him about the palpitations I had over the weekend. He said that the pediatric cardiologist I've been seeing at the Clinic wrote a few years ago that if I start having more palpitations, my heart could start having arrythmias. That is not something I want to happen, because it would mean my heart is getting weaker, and then I might need to transplant that as well. I just want my heart to be fixed!! Because other than the holes in my heart, it's been pretty strong.

I think the most disheartening finding out everything I found out yesterday was the fact that I gained 5lbs since August!! I don't know how that happened. I was quite shocked by it. I asked if Revatio could make you gain weight, but my doctor said he didn't think so. I also know that the weight isn't water weight. That, at least, is a good sign, because it was water weight, it would mean my heart isn't operating correctly. Soooooo, I need to get back on that darn treadmill and start walking more!! Even if it's only 6 minutes at a time! I know I sound like a broken record, but the shock of that weight gain in such a short time really makes me realize that I need to exercise again. Gaining weight like that is really not good for my health situation, it strains everything. Not what I need!!

So, I'm going to hope that the Revatio will put a little kick into my step soon. Maybe the next time I go to Cleveland, I will do better on my walk. I'm really hoping that is the case. But in the meantime, I need to really start coming to terms with the fact that I'll need a transplant at some point. My doctor thinks that I would do really well with one whenever the time comes. I like to think I would, too. I do hope it can be put off for awhile longer! But we'll just have to wait and see what happens.


Sue "T" said…
Well honey, that was alot to digest in one day. Your doctor sounds very very thorough though.
I know how concerned you were with having to have the 6MW. I'm so sorry your walk distance was not what you or the doctor would have wanted. You knew that you were not going to do well by the way you have been feeling and like all of us PHer's, we know our bodies.
I hope that the increased Revatio will show some signs of making you feel better. I hope and pray that you are able to tolerate your treadmill without having increased SOB and in time, that extra 5lbs. comes off. Thank the Lord though, it was not fluid weight, which is a huge concern in my case.
I pray that your palpitations lessen and stop and your heart stays strong. The blood thinning sounds interesting, I had never heard of that.
Colleen, if the time comes that you need to have another medication added to the Revatio, I'm sure your doctor will weigh all options carefully and if the day comes when you need transplanted, if that is God's will, then you will go in fighting like you have for the past 32 years. You are a real trooper honey!!! God Bless You!!
Much love and many hugs,
Sue :-)
Annette Markin said…
Hello sweetie! I'm sorry to hear about the mixed reviews. You had so much done and so much info in one day! I don't know how you were able to digest it all. Please take care of yourself and I'll "talk" to you soon.

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