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Any support for those who have been denied being living donor?
Not to go into too much detail but I had just completed the 24 hour urine collection and compatibility bloodwork for a kidney donation. It had been several months in and I had been in contact with the recipient and had some intimate conversations. Got a message from my coordinator over the weekend to say I've been denied because of possible blood cancer. I wasn't even called.
So I've been grieving because I don't know what to do or who to talk to that would understand how devastating this is for me. Yes, the recipient and family is bearing unspeakable suffering right now but that only makes this so much worse. There seems to be a lot of support for people who are donating, have donated or who are needing a transplant (as they should have!) but I feel very alone right now.
Is anyone else struggling with this? I wasn't ever meant to bear children (and I don't even think this compares) but I just felt a strong compulsion to still bring life into this world. Know what I mean?
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Hi Ginger,
My brother has been diagnosed with Myeloproliferative Neoplasm, then he said it was Polycythemia Vera that has inflammed his spleen and he needs a stem cell transplant. He has an infection right now so the process is on hold. He has not been able to find a match and I am trying to get my transplant kit to him to see if we match. He is getting very sick and is 62 yrs old. I am 60 and may be his only hope. The problem is I am in Arizona and he is in Minnesota, I was finally sent a kit to see if we match, but no one will draw my blood to complete the kit so I can send it. I even have reached out to Mayo clinic in Scottsdale, they transfer me, then I get transferred again. Now I have to talk to Minnesota Mayo Clinic but I can only leave messages. I have gone to labs all over the city like and no one will just draw my blood and stick it in the 4 vials. I have been trying for a week now. Do you know anyone who deals with Stem Cell Transplants? I am so frustrated because he is just waiting for a match and the longer he waits the worse he gets. I am going to be caregiver once he finds the match so I know all about the process. I do not want him to know how difficult of a time I am having just to get the kit done and sent. Do you know anyone I can contact? Please, anything is better than being transferred, my head is spinning I have been transferred and denied so many times. Not a real interesting situation, so for that I am sorry, but I saw this group and you are so wonderful that maybe you might know someone. Thank you for your time and Have a Merry Christmas.
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2 ReactionsHi @pamelacassise, Oh gosh, you are jumping through hoops to help your brother get a stem cell transplant. I’m hoping that you’re a match for him after all this frustration!
It shouldn’t be that difficult to get these vials back for testing. However if you don’t have specific orders from a doctor (for you) that may be the issue. There’s always paper & billing under normal circumstances. For this blood draw, I’m not sure how it works from the clinic’s perspective when someone just comes in wanting a blood draw without documentation.
I don’t know the answer, but I have two phone numbers for you to try. At least someone may steer you in the proper direction. My transplant was at Mayo and they do anything they can to make sure the transplant goes smoothly by finding a compatible match. You may hold the key to success for your brother and you were sent a testing kit. If this was from the SCT dept at Mayo they should be able give you answers.
I have a couple of phone numbers for you and will send them to you in a private message.
I hope these numbers help get you past this first stage.
Look for my private message to you…
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2 Reactions@pamelacassise, I just had a thought about your labs. As an out-of-state patient (transplant at Mayo MN - home Kentucky) I have to have my Primary Care doctor rewrite the lab order so that it is a valid in-state order. I can use it anywhere in-state.
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1 Reaction@pamelacassise Be The Match is the stem cell procurement center used by Mayo for stem cells. They have collection sites where donors can go to give their stem cells if they match. I believe they would also be able to take the samples for you.
Give them a call!
There’s a Be The Match donor site in Tempe, Arizona.
Here’s the phone number.
1 (800) MARROW-2. (800-627-7692)
Address:
1524 W. 14th St. #120
Tempe, AZ 85281
Website: https://collection.bethematch.org/locations/tempe
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2 Reactions@pamelacassise Welcome to Mayo clinic Connect! I hope you have seen the posts by @loribmt and @rosemarya Both of them have offered some great tips to help you out.
Are you able to pursue one of those?
Ginger
Oh, how maddening! I have little advice other than focus on the love for your brother to fuel your journey. I'm fairly new to navigating the world of healthcare. I was without insurance - and, thus, left many things unchecked - for over a decade and just recently entered this world. It's so, so, so frustrating just to get help for oneself much less advocating for another. We are in good company here, though. I'm rather moved how helpful everyone here has been especially the ones willing to share their own stories. Much strength to you.