This journey of mine is new to me however the disease itself is not. I was diagnosed with CKD at 12 years old. Now that I am in my 30’s, it has declined to the point of kidney transplant. I have not been on dialysis and the goal is to get prevent dialysis and get a new kidney.
It has been a very difficult journey for me but I would like to learn as much as I can and reach out to people who have been through this.
Fortunately, I have been approved by the transplant committee for me to be on the waiting list. I do have a couple questions and I am hoping there is someone out there who can give me insight.
I have a potential donor and from my understanding, the transplant program keeps the recipient and the donor information separate. As in I am not allowed to know that their status is on donating and vice versa. My cousin is a potential donor. From the information she told me, she has gone through the tests and was told her kidney is a good candidate for donation. From my understanding, since I am O positive, I need to get it from a donor who is O pos as well.
Now here’s where I am stumped; I do not know if she is a match for me (blood type and kidney) She’s gone through all the testings and was approved to be a good Candidate but it does not answer as to weather or not she would be a match (if that makes any sense at all). Since I’m already approved to be on the transplant waiting list, I don’t know what the next step will be IF my donor proceeds with the process. I don’t want to ask her because I want to respect her privacy and her decision as she has not confirmed nor deny that she is willing to donate her kidney. All she did was the tests to see if she is a good candidate.
So I am left clueless as to weather or not the donor is going to donate AND if she is a match for the blood type and kidney. She also received an invitation letter from my transplant hospital to do additional lab. Who would go through all that testing and process and not know if they are for sure going to donate or not.
Does anyone, recipient or donor might have any insight on what’s going on?
I would greatly appreciate it. Thank you everyone
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LillyBear09
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Hi LillyBear. I can't speak specifically to your situation but it's the team at the transplant center who decides whether a kidney (living or deceased) can be yours depending on blood type, PRA values, conditions affecting the potential kidney, etc. The only way they can determine if your cousin's health situation and her kidney qualifies with no ill effects to her, is to put your cousin through a battery of very refined tests. This battery of tests generally are the same tests you go through to get on the waiting list. If your cousin's physical condition and kidney is in good shape but can't be used for you, she will be offered the chance to donate it to someone else who can use it and then that person's arranged kidney would go to you. This is referred to a "paired kidney exchange" - it's basically a swap. Your cousin will be able to opt-out of offering up her kidney at any time. Centers greatly respect the donors and do not pressure the donors. It's her kidney - her choice entirely whether to go forward or to stop or to put in stipulations. For example, we had a live donor who stipulated he only wanted his kidney to go to my hubby, and to no one else. Some stay steadfast throughout, others may opt out early or wait until right before transplant. So there are no promises or guarantees. Transplant centers also respect every patient's privacy so information often is shielded. You" might" get some general update through a nephrologist or by directly going to your cousin. If your cousin does intend to go through with it, then your cousin will always be at the top of the kidney transplant list should her remaining kidney fail. Hope this helps.
This is very helpful. Thank you for your insight. It gives me a sense of hope and reality. Ideally I wouldn’t want her to do a swap if she is not a match. If that’s the case, I’d personally want her to keep her kidney. I’m praying the the best and hopefully she is a match 🙏
Hello If she is not O type but if she is still willing, there are swap program, where you can get from other donor. Please talk to your transplant team.
Do not worry, have faith, that will sail you through. Please never loose hope.
Kidneysolutions: A Network of Transplant Experience provides free services for those searching for a donor and provides information and guidance to both potential donors and recipients. Contacts can be made through kidneysolutions.org.
There is a separation of coordination between recipients and donors but your coordinator will keep you apprised of the process and status. Blood type is merely the beginning of what will be required in terms of a medical work up for someone to be approved to donate, either to you directly or as part of a swap (what me, my husband and 4 others did). In order to donate a kidney, one must be in overall spectacular health and have no signs of high blood pressure, diabetes or of course any kidney health issues. Beyond that, there is cross matching and typing of specific antigens and antibodies for kidney donation. If they are beginning the next phase(s) of testing that is a good sign. And even if he/she is not a match for you directly, and they are approved and still willing to donate, hopefully your transplant center is capable of pairing you two up with others as part of a swap. Ask them if this is something they do. My journey was long and I too wanted to avoid dialysis, and I did. I transplanted with a GFR of 10, it was close but we did it. I pray you will be able to do this as well. Good luck to you and God Bless your cousin for considering this!
Yes, my husband was my donor but he was not a direct match. We were matched with a swap team of 4 other individuals. My husband gave to a woman, whose cousin gave to a man whose daughter gave to me. We are forever connected, meet regularly and are all so grateful we found one another and 3 donors saved the lives of 3 recipients. It’s a beautiful story of selflessness.
I am happy to hear you were able to get your transplant and avoid dialysis. Ideally I wouldn’t want her to do a swap. One, I would feel bad and two, I personally rather have her keep it. I am hoping for the best outcome for both of us. Thank you for sharing your story.
Thank you! I am curious as to why you would feel bad if it was a swap? If you do not want her to donate a kidney for you at all then I totally understand. But if she want to donate for you, whether it is to you directly or to someone else whose donor give to you, ultimately, getting you a viable living kidney would be the outcome. My husband gave to woman, whose cousin gave to a man, whose daughter gave to me. 6 complete surgeries all in one day at the same transplant center. We are all connected, meet regularly and its been a beautiful thing. 3 selfless living donors saved the lives of 3 very sick people. I wish you the very best and pray you will find the best solution for you. Good luck and keep us posted.
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