Hi Amy, Dr. Araten wants me to start the Coumadin but I am ruluctant to add another medication at this time. My local hemotologist is going to speak with Dr,...
Hi Sandy, The Permax is for Restless Leg Syndrome and it works well, about 80% of the time. My RLS seem sto get worse when my Hg. drops. Keep well MILLIE PNH...
... clots. And I have virtually no hemolysis and I got a clot! ... I'm fighting a weird infection, too . . . won't go into details in mixed company . . . but...
In a message dated 8/31/2003 5:10:16 AM Eastern Standard Time, smr@... writes: Marianne, I'm sorry to hear of Tara's setback, but so glad she is now...
In a message dated 8/31/2003 1:01:30 PM Eastern Standard Time, aglick2023@... writes: Marianne, with Tara's crisis, my heart breaks for you too. It must...
In a message dated 8/31/2003 1:01:30 PM Eastern Standard Time, aglick2023@... writes: Here's my story...I spent all day yesterday in the emergency room...
Hi all, My name is Brian Spring, I live in New Jersey, and I was diagnosed with PNH in February of 2000, but I was going around and around with doctors before...
File : donlette.pdf Description : Letter from Marilyn Baker about the PNH Research Award...
PNHdisease@yahoogroup...
Sep 1, 2003 5:34 pm
14834
File : bmt4pnh.pdf Description : medical article: BMT of unlrealted donor with PNH...
PNHdisease@yahoogroup...
Sep 1, 2003 5:34 pm
14835
File : medfin.pdf Description : Financial Resources from AA&MDSIF...
PNHdisease@yahoogroup...
Sep 1, 2003 5:34 pm
14836
File : pnh_basic_explanations.pdf Description : PNH Basic Explainations from AA&MDSIF...
PNHdisease@yahoogroup...
Sep 1, 2003 5:34 pm
14837
File : exhemapn.pdf Description : Successful application of nonmyeloblative transplant for PNH; Experimental Hematology 2001...
PNHdisease@yahoogroup...
Sep 1, 2003 5:34 pm
14838
File : what10-1.pdf Description : What is PNH? By Dr. Rosse (FILE 1 10 pages)...
PNHdisease@yahoogroup...
Sep 1, 2003 5:34 pm
14839
Jaye, I don't know if you have time to access messages now, but am writing just in case. Getting Kade the airplane project was a great idea. Taking his...
Hi Jeanne, I second your advise to Beth that for serious decisions about our PNH treatment/ possible BMTs it is essential to consult with a PNH expert such as...
Denise, Because my spleen is so enlarged, I have pain in it after walking or standing consistently for more than 15 minutes at a time. It is also painful ...
Hi Margaret, Hope you are feeling well. Thanks for confirming those #s for me:-). Fondly, Susan Diag "98 Mild AA Prob since 1975 Low dose Pred., Coumadin,...
Bill, Thanks for the input. Both hi(11) and low(3) counts had about the same hgb/rbc. Because I was short of breath while resting (HGB-9; RBC of 3) Duke...
Hi Sandy, Sorry to hear that about your breathlessness. You said all tests were OK except blood oxygen. Since you were at Duke I'm assuming they imaged your...
Hi Marianne, I'm so sorry that Tara is having such problems. I send my wishes for a quick recovery. Thank goodness she is young and has "newer" kidneys so she...
Sandy, I have a question about the retic count. I am assuming that you are talking about retic percentage... is that correct? In my world, normal is from .4%...
Brian, Welcome to the group! Glad to hear that you are doing so well. We need to hear from people like you! To get the newsletter, you can send your mailing...
In a message dated 8/31/03 5:05:31 AM Pacific Daylight Time, PNHdisease@yahoogroups.com writes: << Will be thinking of you as you face surgery. >> Sandy, ...
Sandy, I also experience severe leg pain/discomfort when my hemoglobin drops below 8. As soon as I got a transfusion the last time though, (at 6), my leg pain...
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