View Single Post
  #23  
Old Sat Apr 18, 2009, 10:27 AM
dkimmel dkimmel is offline
Member
 
Join Date: Feb 2008
Location: OH
Posts: 15
Hi Bill, I'm very sorry to hear about your daughter's diagnosis. But it sounds like she is well on her to recovery. I have three daughters of my own. To say that I would be devastated is a gross understatement. I simply cannot imagine. I can certainly understand your concerns for her future health. I can start by saying that I was told, by my doctor at Hopkins, currently I am the only patient who recieved HDCY that has a PNH clone the has expanded. What I mean by that is, apparently at time of diagnosis with SAA, I also had a PNH clone of about 1%. I was unaware of that at the time. (Your daughter was tested for PNH as well, I'm sure of it. If you do not already know the results, I would ask.) Many AA patients harbor a small PNH clone. It is actually thought to be beneficial. It is believed to provide a better outcome from immuno-suppressive therapy, for reasons not exactly clear yet. I could go into the thought behind it, but my posts are already too wordy So, as I understand it, for these patients who have small PNH clones, they tend to stay small indefinately. HDCY does not erradicate them, only a BMT can. But they stay small, for reasons not understood. So, again for reasons not understood (there's alot we don't understand, huh) my clone decided to expand from about 1% to now about 50%. But remember, as I understand it, currently I am the only one. So that means, all other patients who have had HDCY, have not gone on to get clinical PNH. And many of them I'm sure had some kind of detectable PNH clone at time of diagnosis. So the odds are greatly in your daughters favor to remain disease free. Even if you find that she has a small PNH clone, it will most likely remain small.
As for me, you asked how I am doing. I am doing fantastic. I recently had my clone size checked. It is stable. I mentioned that a year ago all of my counts fell dramatically. They are all on a consistent rise, some even within normal levels. I continue to be medication free. I continue to exercise and live a life pretty much unaffected. I mean I have to get my blood checked every couple of months. That is usually stressful. There is always the worry that it will progress out of nowhere again. But these are things out of my control. So I just try to appreciate the now, and not worry too much about the later.
I would ask do you have any advice for me? It's much easier to be the patient I think ,than to be the parent of a patient. I sincerely mean that. I hope this helped to calm some of your concerns, impossible I know. Please feel free to ask any more questions.
Reply With Quote