... about 1945 with my Navy Captain father. She hasn't been back since and has very little family there. I would love to go back some day with my family. I...
Birdie, Sorry forgot to tell you that message 12707 was for you. Are yo attending the conference in San Francisco? Have you been to one before? I'm thinking of...
hey Claudia, Thanks for your useful information. Pretty well described actually. It's given me some ideas now and will do further research and will ask my ...
Hi everyone, My school is having a bone-marrow and blood drive for a woman who has lymphona. Many teachers and students are interested in participating. Peope...
Chhean, I agree with you on the varied extremeties of this condition. It's interesting to see it from all sides of the spectrum. As for the headaches, I get ...
Mary, I just watched a segemnt on the Today show where bone marrow was collected by being hooked up to a machine (needles in both arms). It looks like...
Hi Chhean - I forgot to add that I'm not actually experiencing all of the listed side effects, but I think I'm a rarity. I haven't gained weight (ok, maybe 3 -...
... Just responding to the comment on my radio silence (but I still read almost every posting). After experiencing a pulmonry embolism last June, things have...
Hi All: There have been some recent questions among the group and some new members who may find the attached document of benefit. I posted this several weeks...
Hi Mary, I was the donor for my brother Scotts BMT last March... The actual procedure was done in the operating room,local anisthia (spelled wrong) They took a...
Lrodgers64@...
May 1, 2003 10:53 pm
12719
... This is the first PNH conference Duke has hosted for both patient and doctors. I am sure it will be a big success and I cannot wait to go. The one in San...
does anyone have Kades family's home address so I/we can send a card? Rebecca True Gaskin PNH since 1997 With Budd Chiari dx March 2003 Salem, Oregon ...
suztree@... writes: Hi Susan! ... we haven't started the search yet. So, I have no clue. ... I suppose I must be since they are all recommending a BMT. ...
Glad you are home Jasmine, and that you and Mark are doing well. Good luck catching up on 2 months of emails! I am just having a hard time catching up on 2...
... That is a unique way of looking at getting a clot! You make me laugh! Rebecca True Gaskin PNH since 1997 With Budd Chiari dx March 2003 Salem, Oregon ...
I just want to thank all of you who gave me information about harvesting bone marrow for a BMT. I will probably print out your responses (white out e-mail...
... I get a lot of headaches too. Some minor, easy to deal with, some severe that requires Imitrex or a trip to the ER. My hematologist said that when one is...
hi Rebecca, Thank you for your reply. It looks as if Duke is the place to go as it specialises in PNH. I will do more research into it and hope that all this ...
Rebecca, This is the address of the hospital but at the time Ty didn't have the room number...I'm sure our cards will get to him just fine though. Methodist...
Lrodgers64@...
May 2, 2003 10:03 am
12729
hi Katrin, Thanks for that. I'll ask my doctor next time. I think it's worth having a go at it and one can never know until you try it. PNH varies among ...
hey all, I've been diagnosed with PNH since 1998. Since the intial diaognosis the rate of hemolysis is greater. The rate of hemolysis is increasing where it's...
Hi Chhea, I was born and raised in the Bay Area of California. About 35 minutes east of San Francisco in the "Country". It's no longer the country but It was...
... Its good news to know you are doing well. I am jealous that you get to ski so much! How much I miss skiing! We will miss seeing you at the conference. ...
I will need you home mailing address. I mail accross the globe- happily!!!! smiles, Rebecca True Gaskin PNH since 1997 With Budd Chiari dx March 2003 Salem,...
... of course, I recommend both conferences if it is affordable for one to attend both. But if you are going to go to the Duke conference, you need to make...
Chhean, there is no real management for hemolysis. Prednisone is the only drug that seems to help slow it down. I have noticed over the years that my...
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