YEAH ! Donor found
 

Nurse from IU Hospital just called and told me that they found a donor for transplant. It was a 10/10 match. I go next week for testing. I'm not sure what all tests they do, but she said it would take all day. As far as I know I don't have any problems. Hope they don't find any. I just pray everything works out. I don't know how long it will take for them to schedule transplant.

Congratulations! How long did the donor search take once they started looking?

They routinely give pre-transplant patients a once-over before scheduling the transplant. Think of it like the "all-systems" reviews they do before launching a rocket. In both cases it's hard to turn back once you get started!

Typical health checks include organs (lungs, heart, liver, kidneys, nervous system, mouth), evaluation of your MDS status, medical history, and maybe even a psychological evaluation. They may rate you on the Karnofsky Performance scale.

All of this is to make sure they know where your health stands, know what the risk factors are, and can conclude that a transplant is a suitable treatment.

They called me on April 24th to tell me that my sister was only a 50% match and they would start checking the bone marrow registry. I told the nurse that called today that I had got a lot of information from this forum. She said she would like for me to bring her the info on this web site because she has a lot of patients that have ask about something like this.

Congratulations Vickij! So happy for you :)

Congratulations hope everything goes well.

Blair

Thank You
 

It just seems amazing to me that my own sister was only a 50% match, and a perfect stranger can be a 100% match. I am very thankful that it can work that way. It is my understanding that I will not know anything about the donor for 1 yr. Not even if they are male, female, age or where they are from. Is this correct ?

We found out age and gender, but that's it!

You are welcome to download and share the Marrowforums flyer (a PDF file).

We knew my wife's donor was female and we knew her age, but nothing else for a year. Those are the rules in the U.S. We guessed that she was on the east coast because the marrow arrived at our west-coast hospital around dinner time. We figured they collected it in the morning and a courier spent the day flying it west. That turned out to be true. We were able to send the donor anonymous thank-you letters at transplant time, but it was a year before we found out who she was and we eventually got to meet her (see the photos)!

Got schedule for pre-transplant tests
 

I got my schedule today for my pre-transplant tests next week. Tuesday starts @ 9am with meeting with social worker, 9:45 EKG, 10:15 chest x-ray,10:40 CT scan, 11:00 Bone marrow biopsy/lab work, 12:30 lunch, 1:30 -3:00 BMT education class, 3:00 Echocardiogram. It will be a busy day. I'm glad they test everything .I just hope I pass. I have to go back on Thursday for Pulmonary Function test. I have had all the other tests before except this one, I don't know why it couldn't be done on Tues. I will meet with Dr on following Monday. I guess that will be when I find out test results & hopefully schedule transplant.

Congratulations, Vicki! Hope all goes well for you. I knew only my donor's sex for the first year. A little more than a year later, we were able to meet, and I discovered she was as eager to know more about me as I was her. All they would tell her is my age and sex. I'm now 2-1/2 years post transplant and doing well. Karen

Thanks Karen
 

So glad you are doing well. I noticed that we are the same age. Did you have full transplant or mini transplant ? How long were you in hospital ? Did you have any problems after transplant ? Sorry for so many questions, but I'm sure you know how scary this is.

Vicki,

I had a full myeloablative transplant at Johns Hopkins and was in the hospital about a month - 1 week before for the conditioning chemo and 3 weeks after until I engrafted. It was winter, and we live in a rural area, so I stayed in an apt. across the street from the hospital for about 6 more weeks. At first there were daily visits to the hospital for 4-6 hours to get hydration, potassium, testing, whatever but the visits gradually tapered off. I was fortunate to have no life threatening difficulties post transplant. The worst pain I suffered was mucositis the full length of my digestive tract for a few weeks - it hurt even with a generous amount of narcotics - this is common. The other big unpleasantry was that food tasted horrible for about a year - this is not so common. It all got better. I now have a little chronic gvhd - dry eyes and mouth and lichen sclerosus (itchy, thickening skin) on my back. I haven't had any steroids other than a topical Clobetasol cream and I haven't had any immunosuppressants other than Restasis eye drops and a topical tacrolimus cream for my back. I was very apprehensive ahead of time and much relieved that things have gone so well for me. My husband and I have tracked our experience in our blog, linked in my signature below. Unfortunately, I'm in the midst of changing servers, so it may be unavailable for a few days - it will be back up very soon though. Please feel free to email me privately if you have more questions or concerns. Talking with those who journeyed before me made my transplant much less stressful, and I like being able to pay that forward.

Karen

Karen
 

Thanks for the info. I know I will have more questions and I am glad to have someone to talk to. I also live in rural area 75 mi. from hospital where I will have transplant. Dr told me that we would be staying in apartment close to hospital for a while after transplant.

Date set for transplant
 

My nurse from IU Med Center called yesterday with the date for my transplant. She said all of my tests came back OK so we are set to go. I will have a non-myeloablative transplant on June 24th. I will go in the hospital on June 17th ( the day before my 60th birthday ). She did say that my donor is a male. I am so thankful that he is doing this.

Great news, Vicki!

Great News
 

I went to appt. with transplant Dr. yesterday and he said all of my blood counts are in normal range.(hmg 11.5 ) He thinks that the 2 weeks of Revlimid and the cyclosporine that I have been on for 14 mo. plus the horse serum I had 4/12 may have all kicked in and he wants to put the transplant on hold. I will go for blood work again next week before final decision is made. Needless to say, I was thrilled. Has anyone ever heard of this happening before. Dr said he has only had 1 other patient do this in his 20 yrs of practice. Dr may say it was the meds, but I say it was an answer to all the prayers that have been said for me. GOD is good !!

I spent hours/days/weeks researching AA and PNH when my son was diagnosed with AA, then PNH five years ago. Yes, I did read about this very thing happening, but I don't recall where. I hope your counts stay up!

Edited to add: I also read many stories about ATG taking up to a year or more before taking effect. As a result, I wasn't open to any talk about a BMT with his doctor during the first year after the ATG. His doctor was ready to call the ATG a failure at the three-month mark. By the six-month mark, he changed his mind as my son's counts slowly began to rise. My son's counts are all normal now with the exception of his platelets, which were 135 at last blood test. It has been a gradual rise in his counts, and a gradual drop in the PNH clone size.

Similar story
 

Vicki,
I am scheduled to be admitted on June 18 for BMT, one day after you! At first I was to go i on the 17th, but scheduling the central line got tricky--go figure the most common part of the procedure. My sister didn't match at all. The part of being a perfect match with a stranger does sound strange. They found me a 10/10 young male CMV negative donor, willing to give marrow:D. I wish you the best.

I'm trying hard not to get stressed and impatient with folks as I am trying to get soooo much done prior to admission. Pesky legal things, decluttering the house, finishing school with the kiddos (we homeschool), and setting up medical leave from work. One day at a time, one day at a time, one day at a time . . . . .

Mary

My day 0 is June 27 I start chemo on 19.

Good luck Blair

Mary
 

My donor is also a 10/10 match and a male. I said perfect match, but I just meant it seems strange that another person could match me so well. I know what you mean about all of the last minute stuff. The nurse told me to go ahead and prepare for the transplant just in case I am not in remission. It is hard to figure out and pack everything I will need for a month. The hospital is 75 mi. from home. Please keep us posted and I will be praying for you.

Blair
 

Good Luck to you too. I will be praying for you also.

Vicki,

You don't really need to keep a suitcase packed for an instant departure the way expectant mothers do. You'll have plenty of notice if you'll need to undergo a transplant. But the idea of planning for a transplant, just in case, makes sense. That means thinking about what you'd take with you, who will watch the house or collect the mail, how to manage other things you won't be able to do yourself, what you'll tell friends and family, whether there are any insurance issues to check on beforehand, and so on.

Vicki,
That's great! I hope that your counts stay stable. Sometimes being rare can be good (your response now)! Ok, a little humor can always help too ; )
Mary

Transplant is back on
 

Had blood work done today. Dr at IU transplant center called and said my counts were still good, but he thinks it is best to go ahead with transplant while I am still in good health and donor is all set. He said he was probably premature last week when he said we should put transplant on hold. I will go in on June 17th & have transplant June 24th. I know this is for the best. If we had canceled transplant I would worry all the time about when counts would drop and donor may not have been available.

VIckie-
Best of luck to you! My husband had his on April 24th - will you be using caringbridge or any other type of blog?