I have a donor

[Robsocal]

Well I just got the call today that a donor has been found for me. I am meeting with my doctor Jan. 12th, I will get the whole scoop then. I am very nervous of course but I know it's important to get this transplant done while I am healthy. I feel great with no issues to speak of other than my platelets and WBC's. Any input about what I should ask my doctors and what is in store for me would be a great help - thanks!

[Ruth Cuadra]

Congratulations! This is great news with which to start the new year!

You're right that having a transplant while you are "otherwise" healthy is a good way to go. Many (most?) people don't have this option. You'll want to know the details about how well the donor matches you (full match? partial match? if partial, where is the mismatch?). You'll also want to know what the transplant protocol will be, that is what chemo and/or radiation will you have before the transplant, will you receive stem cells or bone marrow from your donor, and what drugs will be used along the way. You should ask how long you might expect to be in the hospital and what kind of followup care will be needed. If possible, try to have someone with you at your Jan 12th appointment so they can listen and help you process what is bound to be a lot of information.

Good luck and keep us posted.

Regards,
Ruth

[Jill2008]

Hi Rob!
I am 48 and was diagnosed with MDS in July. I was also told to have the transplant done while I am healthy. It was to be scheduled as soon as a donor was found, but my counts are not declining as rapidly as they were at first. The recommendation was made to put it off for now and watch my counts. I am taking this time to put on weight (I am 5'9" and weighed 124 lbs.) and work out at the gym to build up my strength. I now have four matched donors. It's a scary decision to make when you are young and feeling relatively well. Our friends are shocked when we tell them because I don't look ill. What are your counts like and have you needed any transfusions?
Jill

[Neil Cuadra]

Rob,

There's another category of transplant information you'll get, but not from the doctor. Once the transplant date is set, a transplant coordinator, social worker, or other hospital employee will give you detailed information about transplant preparations and procedures, including practical tips on everything from what to bring to the diets you may be on. They gave us the information in a large loose-leaf notebook. It was very useful for reference, both before and after Ruth's transplant.

[Robsocal]

Thanks Ruth, Jill, and Neil for your helpful responses. You are right Jill - my friends say I look as good as I ever did... and I feel absolutely fine. My numbers are generally on the rise, WBC 2.1, HGB 11, HTC 32.2, PLT 75, RBC 3.83. I get tested weekly and my numbers are slowly creeping up on their own. The only transfusion I ever received was when I was hospitalized with pneumonia (which is what led to my MDS diagnosis in the first place.) I have not taken any type of medication for it except for antibiotics to keep me from catching anything. I am really unsure if doing the transplant at this point is my best option considering the risks, but my doctors seem to think so. I am inclined to "watch and wait." Also, my primary oncologist says working is a very bad idea (restaurant management) and has put me on disability which doesn't cover my considerable expenses and I find myself getting closer and closer to a financial meltdown so maybe getting the transplant now will cure me and let me get back to a normal life, I just don't know. Anyone in similiar circumstances?