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PNHdisease · To list is for people with Paroxysmal Nocturnal Hemoglobinuria (PNH), or friends and family members of those who have this rare
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Reply | Forward Message #17203 of 17533 |
RE: [PNHdisease] hi

There is a lot of information and resources at the pnhdisease.org web site.  My daughter had the ATG treatment (In ICU to be able to watch her closely for allergic reations) and it has made a HUGE difference. 
 
I urge you to contact the folks on the pnhdisease.org forums.
 
Linda - mom of a PNH patient


-----Original Message-----
From: Teresa Benson
Sent: Oct 17, 2006 11:19 AM
To: PNHdisease@yahoogroups.com
Subject: RE: [PNHdisease] hi

Hello Melissa!

THANK YOU for your email. This is the first I've responded to because I've
been so overwhelmed.

My doctors are pushing me for a BMT, and a quick decision. I feel there is
a lot of stuff going against me on that 'treatment' (I've had lots of
transfusions, don't have a related donor, am a clotter, now am experiencing
bone marrow failure).

I also recognize that everyone has different degrees of PNH and that a lot
of people who have had help didn't have the disease as I do. It is hard to
take My variables and match it with Theirs.

Rabbit ATG nearly killed me 5 years ago, I was allergic. This is creating
problems for any treatment today.

My doctor is saying that a BMT is my only option, but I'm going to print out
your email and give it to him. I think I can do the Horse if he thinks he
can do it too. I feel pretty good about it, but am still leery of the BMT.

THANK YOU, Melissa. You've made my day!

Kindest Regards,

Teresa



Tue Oct 17, 2006 6:03 pm

linnea9
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Message #17203 of 17533 |
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hi teresa i know how scared and alone you feel. I read a book called the power of positive thinking i really think it helped me stay positive on those days...
melissa mulhern
melissasnotface
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Oct 19, 2006
1:00 pm

There is a lot of information and resources at the pnhdisease.org web site. My daughter had the ATG treatment (In ICU to be able to watch her closely for...
Linda
linnea9
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Oct 17, 2006
6:07 pm

Thank you, Linda. T...
Teresa Benson
teresabenson@...
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Oct 17, 2006
6:41 pm

All the very best to you. If you have the BMT, share your experience with the group @ pnhdisease.org -- they are so very supportive and full of good...
Linda
linnea9
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Oct 17, 2006
7:07 pm

Hi Teresa, Have you had a chance to see a PNH specialist yet? It is so important you be evaluated by doctor very experienced with many PNH patients. He'she can...
susan todd
suztree
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Oct 20, 2006
1:22 am

Hello Susan, I've been to Duke twice (I'm in CA). I was diagnosed in 2001. I've had upwards of six clots and went into anaphylaxis with Rabbit ATG. The ATG...
Teresa Benson
teresabenson@...
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Oct 20, 2006
6:33 am

Teresa, Hi!! We met at Duke in 2003. That seems like a lifetime ago! When my counts started dropping I was put on cyclosporine as well. It did help increase...
Silvia Marchesin
smarchesin2001
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Oct 20, 2006
4:21 pm

Hi Sylvia, Wow, thanks for your words! I was on cyclo once before and hated it.... this was at much less dosage too. I'm really glad that you reminded me of ...
Teresa Benson
teresabenson@...
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Oct 20, 2006
5:17 pm

Hi Teresa, It sounds like you have good medical doctors in place. With your history of clots, I understand the reasoning of considering a BMT, for sure. . The...
susan todd
suztree
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Oct 21, 2006
8:34 pm

Hello Susan, I appreciate hearing from you folks on the website and know that your group knowledge is priceless. I'm sure there will come a time when I will...
Teresa Benson
teresabenson@...
Send Email
Oct 22, 2006
5:10 pm

All the girls out there are totally lying when they tell you that size does not matter. Want proof? I am telling you this because it is the honest truth, look...
savanna-terk934@...
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Apr 8, 2007
7:04 pm
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