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A Transplant or Not ?

This topic has 33 replies, 4 voices, and was last updated 5 years, 11 months ago by Donna.

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May 20, 2018 at 7:32 pm #36505

Donna
Participant

Lillian……I am feeling fine. I don’t go back for my blood work until June 28th, so I’ll find out how they think I am doing. I guess more depends on the numbers than how I feel. So you have decided to go with the transplant. Please let me know what you find out about the particulars of the mini transplant. I hope your appointment goes well and you feel confident in your decision. How do you feel? I mean, do you have many symptoms from the MDS or is it about your numbers? Maybe the ankle swelling is something all together different. Did you twist it or anyting? Are joint problems associated with MDS? I signed up for a forum in Boston in July and they are going to talk some about transplants. It looks like a lot of question and answer time, so that will be good. Donna

May 24, 2018 at 9:02 pm #36543

Donna
Participant

Lillian…….How did your appointment go? Are you going with the mini-transplant? Donna

May 24, 2018 at 10:17 pm #36544

Lillian Evans
Participant

Donna, Happy Belated Birthday ! The Dr. visit went well. He answered all my questions. The bottom line is the doctors estimate the Dacogen will only work approximately 2 years. If I want a chance for longer term survival a mini transplant is my only option. It is a gamble as many things could go wrong. I believe I will take the chance since Iam in good health, take only one pill for acid reflux. I will tell them next week to start the process. He said it might take up to 3 months to get a donor and get everything organized. I will have to have a good physical before they will do the transplant. I am really nervous about the whole thing but guess I will take the chance. One thing he said I could change my mind at any time but at this time I don’t see that happening.

May 25, 2018 at 11:36 am #36547

Donna
Participant

Lillian…..I am happy for you that you made the decision and you seem comfortable with it. When they tell you things could go wrong, could one actually have less than 2 years with the transplant. How long do they feel the life span is with a mini transplant when everything goes well. It sounds like you made a good decision but I can understand why you would feel nervous. Do you have good support at home? YOu know you have long distance support here on this message board. Donna
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