Bone Marrow Transplant Support Group

please think about your brother who is in more pain than you could dream of. I am sure if he was inconvienced as much as you it would not be a problem and i am sure he would take your inconvience to having a bone marrow transplant any day. You are sounding very selfish and not caring towards your brother considering you may be able to save his life. You should think about writing your thoughts on here. I had a BMT 5 years ago and i am the most grateful person in the world for what my STRANGER donor did for me. Stop and think about YOUR brother and how he is feeling right now. At least you get to go home and all your drama will be over forever when you have your procedure! Your brother still has months if not years of worry still ahead.

I threw up for 16 hours straight, I had fever, chills, and severe bone pain, like my skull was coming apart. I would give my brother a limb to help him and was not saying anything about that.

What I was saying is that the people in the blood centers need to be honest with the donars, not keep them waiting for hours. I thought I said it pretty clear but it seems you took what I said and twisted it all over to make me out to sound selfish, I also feel they overdosed me on neupogen because what they said would take 10 to 12 hours to collect ended up being three and a half hours including while the machine broke down and I had to have the large needles removed and then put back in.

I am disabled from a drunk driving car wreck where it broke my neck, collar bones, ribs, knees, ankles and feet and tried to let everyone know that laying down in the same posistion would be painful, yet I was more than willing to do what ever would save my brothers life.

My statement was actually meant to help, to let the professionals know that if they were just a bit more accurate with the information and a bit more caring about the donars time, they may be able to get people to donate! I do plan on writing the blood center people and letting them know how they could improve the experience for the donar. Oh, and by the way? my brother is not in pain at all. His medications are keeping everything normal, he is working a full week and laughing and having fun, the dr.s are just worried if they dont do the transplant soon that either the insurance company wont pay or will change the rules at the first of the year or the meds "might" stop being so effective.
Next time before you start attacking someone with your holier than thou attitude, read, comprehend, re-read if necessary. I feel people are entitled to the truth, knowing what to expect makes for a much easier process and builds trust.

Dear Paindora, I am so sorry for all you've gone through. I too would do anything and EVERYTHING for one of my siblings. However, I am at the receiving end of a transplant right now, and my siblings are not matches. So it pains me to read your post. I have a complete stranger who is willing to go through all this pain for me. It broke my heart, that even after reading every medical post I can get my hands on of what to expect for the donor... I am sorry the staff you went through were cold and uninformative to you - but do hope in the long run that the bad feelings will be forgotten and that you are able to enjoy more time with your brother. I hope people who read your posting don't get discouraged by it - but learn to do more research of their own and read EVRYTHING they can get their hands on.
Take care and best wishes to you and your family.
I know I will be in pain too, I will be away from my children for 2 months in the hospital, they are young and don't really understand...my pain wont be from the transplant only - but not being able to hold my children is the part that will kill me.

Update!!! my brother is doing great, is expected to totally cured and i wrote a letter to the hospital, the clinics and the drs saying that the misinformation, confusion and side effects made it a terrible experience. I got a letter back from each group with a sincere apology and an explanation that the lady that normally does all of the planning, explaining and prep had gone into labor early and they were not prepared with a replacment and they were sorry that I was the one that took the brunt of the screw ups. I felt alot better about teh entire thing after that, I also got too much medicine by accident, the machine broke down during the harvesting and it was explained that they were not only sorry but embarrassed how bad it was. They assured me that it would never happen like that again. I feel much better, it really explains why things were so screwed up. I got double doses of nuepogen, that stuff is bad normally. soo you see, I am sure it is not like that normaly. I hope you all get the donars that you need and they treat them well

I am not only a BMT patients but a BMT nurse. I am completely honest with my patients & their donors....I would never want them to be surprised. Worse case scenario works best...not easy to hear but honesty is the best policy. I am glad that the donor program acknowledged their wrong doing & apologized for the problems you encountered.

I am so glad you & your brother are doing well. I wish you both all the very best.

P.S. Neupogen does suck! They told my brother he would feel like he got hit by a car...he said he felt like he got hit by a semi truck...he is 280lbs & 6'4" & had enough cells in 4 hrs...enough for 3 transplants!

Hi I am new to this list. I have a 12 year old daughter who is undergoing evaluation for a Bone marrow transplant due to HLH or hemophagocytic lymphohistiocytosis as a complication of severe autoimmune disease. She has been chronically ill all of her life with intestinal pseudo obstruction and failure, is on TPN ( IV nutrition) unable to eat, has severe autoimmune disease ( lupus like) and this complication of HLH which is fatal if not treated with a successful BMT. We have been given some information from the director of the BMT team at the ped hospital, a book, "Bone Marrow and Blood Stem Cell Transplants, a Guide for Patients" by Susan K Stewart, I also found a great deal of info and was sent tons of books etc by the National Marrow Donor Program you can google and find at "Be the Match". I am sorry you went through such a tough time without being prepared to go through such pain. It does describe what you talk about with stem cell collection. I also suspect those obtaining the precious stem cells for your brother could have given you pain meds to help through the process. God Bless you for being a donor and saving a life. I hope and pray we will find an angel like yourself. My daughter is unable to use a sibs donation due to our genetic health issues.