want to know what to expect
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- This topic has 13 replies, 1 voice, and was last updated 18 years, 3 months ago by geebeebee.
February 15, 2005 at 7:09 pm #4103mamakayzMember
Yesterday the liason from johns hopkins told me my match was located. I should be dancing on the ceiling my wait was only 4 months and i am so grateful but i’m also scared to death of the unknown somebody out there thats had a bmt please tell me how you got thru it!February 15, 2005 at 10:32 pm #4104sarahMember
Congratulations on locating a match.What is your age and classification of MDS? Been searching over 3 years now for my husband a match, no luck yet. Someone will respond soon who has had BMT, with their experience for you. Best of luck!
SarahFebruary 15, 2005 at 11:23 pm #4105txnmommaMember
Congrats on finding a match!! I am so excited for you!!
I dont have alot of info on BMT, but just wanted to say hope all goes with it!!February 16, 2005 at 6:14 am #4106
Congratulations on finding a match — that is always good news.
My Mom had a Stem-Cell Transplant in November — she’s 65, so they did a reduced-intensity one. I can’t (and I know she wouldn’t) say that it’s been easy by any stretch, but she’s nearing her 100 days post-transplant and, though feeling tired and weary, is hanging in there.
I would say your age will be a huge advantage in your case…I’m sure you will be able to bounce back much faster and stronger. I’m sure Marsha will read your post — she’s closer to your age and can perhaps give you a better example.
Very best of wishes with this. We’ll all be rooting for you.
GregFebruary 16, 2005 at 4:26 pm #4107MarshaMember
I am 52 and had a BMT in Nov, It is not an easy process to go thru. I spent 1 1/2 months in the hospital and got out just before Xmas. Tho I had to go back in on Dec 28th due to some small complications. I have had several bumps in my road since but have not had to go back into the hospital. I have trouble with the CMV virus, and keeping my magnesium normal. Right now I am day +89 so close to the l00 day mark. In a couple of weeks I will have my BMB done to see where my disease is at. Hope it is gone . I still have trouble with fatigue but some days are better than others and I take advantage of those days with exercise, and just enjoying being alive. I know it is scary going into this journey but just knowing that I have a second chance at life due to one person who without hesitation gave me that chance. Even at my sickest I thought of her often and was eternally grateful. Let me know if I can help you in other ways or answer any questions. Tho, everyone is different and their bodies handle things different. Oh, as of yet I don’t have any signs of GVHD, just some gastritis and diarreha which is from all the magnesium I need to take. Take care and congratulations on finding that donor.February 17, 2005 at 4:52 am #4108Bill and MaryMember
This address will get you to a lot of folks tha have experience with BMTs.
http://www.acor.org/archives/BMT-TALK.html. You will have to sign up but that is no big deal.
Congrats on the match and God speed on the recovery.
BillFebruary 18, 2005 at 4:53 pm #4109alexandra7Participant
Finding a donor is a good thing. I do not know too much on BMT but i would say it is a chance to move on, to go forward . It is of course scary but it is a step forward to fighting this disese . Of course you should not expect waking up in the morning and having all this story gone recovered 100%. You will have bad days and good days but the ideea is that this could be the cure . Maybe it will take a long time to recover completly but knowing that in the end everything could be more than OK should be worth it . So take care and let us know how it turns out.AlexaFebruary 24, 2005 at 9:56 am #4110ChristineMember
I am a 36 year old, mother of three and I had a bmt in October, 2004. I’m still waiting for my counts to come up and I’m at around day 125 or something. I had a wealth of complications including a need to have them trach me, take a lung out to look at it…getting some window to my heart to remove fluid…and today I’ve got the news that the CMV is back. I’m doing outpatient treatment but it’s taxing to go out in the cold to the hospital every day. All I can say is put your faith in the Lord and make sure you have a great support system – you will need both. It is NOT an easy process – but it can be done. Also, I have problems with congestive heart failure so I gained 85 pounds while laying in a hospital bed for 3 months. However, now I’m down to about 30 pounds less than my admission weight. Food just doesn’t apeal to me anymore… perk..
Good luck to you and keep the faith.February 25, 2005 at 4:25 am #4111PamyRnMember
Im excited for you but share your fear. I also am scheduled for BMT at University Of MI, March 5th. I have no chromos abnormalities and have had two 10/10 matches so far. First guy flunked his physical so as of Tues they are contacting another 10/10 and asking to rush the process as a admission date for March 5 is scheduled. Are both you and donor neg CMV? So we are but with as many transfusions I have had I may not be now. THey have rechecked it tues and will again on admission date. My donor and I also share the same blood type so that will help also. Male donor. How about yours?
Christine has kinda scared me moe than I already am.
MARSHA AND CRISTINE:
Have questions for both of you? Would like to know how close your matches were??? Male or female donors?? Related or unrelated? You and donor neg for CMV?? Was your blood types the same?? How was your general health going into the transplant? (besides the MDS)Also do you have any chromosome abnormalities and did you donor share this abnorm? I dont mean to be drilling but just want to know If I am going into a similar situation and what I might have to look forward to. I know with AML I really dont have any other option for “possible” cure. But also worry about quality of life. Any info would be helpful. Thanks so much
PamFebruary 25, 2005 at 11:52 am #4112
Christine, I’m so glad you’re hanging in there, and sorry you have had all the problems. Battle back that darn CMV and keep us posted on how you’re doing when you can.
GregFebruary 25, 2005 at 3:53 pm #4113MarshaMember
My donor was unrelated and matched 6/6 lower level and 9/10 higher level, that was the closest I could get. My donor was a female and negative for CMV, I am positive so I have had some issues with that tho I have been on gangcyclovir for almost a month and today is the last IV treatment I need to do. The CMV is gone. Our blood types were not the same so mine will change. I am almost at 100 days post transplant and will be doing another BMB on Tues. My doctor is pretty confident that I am working with all donor cells now. Which is a good thing. I was Dx with CMML in March 2004 and was put on hydroxyurea which kept my counts stable. I was in good health going in tho alittle fatigued. The whole process wasn’t easy but I am so glad I did it. I have the utmost respect for my donor and her family for giving me this second chance at life. Way back in Nov, I thought 100 days was a lifetime away and look at me now it is here. I wish you the best and pray that you get thru the process OK. If I can answer any other questions feel free I don’t mind. People on this forum answered mine in the beginning. Prayers are with you.February 26, 2005 at 1:39 am #4114PamyRnMember
Marsha thx for the encouragement………got kinda freaked out hearing of the hard time Christine had to go through. My first donor flunked his physical after everything was all set up…but luckly they had another specimen at the hospital and worked it up and he is 10yrs younger that the first (30yrs)…we are both neg CMV , both have same blood type and we are a perfect match 10/10. Im lucky in that I have no chromosome abnormalities. I hope he is willing to move quickly so I dont have to wait too much longer than first date of March 5th. Thanks again for the encouragement….
PamFebruary 26, 2005 at 3:47 am #4115JimbobMember
You are a youngster. With a good match sndexpeeerienced doctors followoing the established protocol you should breeze right through it. There may be a few occassions when you wonder what you got yourself into but you will probably look back on those and say they weren;t so tough after all. It is differenent for everypatient but similar. I am heeere and getting betterr after 22 months post STC.
Good luck and prayers to you.
JimFebruary 26, 2005 at 5:38 am #4116
The other match sounds like a good one — that is a great age, CMV match and blood type! All those little things make the success rate better and better.
Keep in touch, and we’re all sending you our best wishes.
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