HELP ON STARTING A CAMPAIGN DUE TO DONOR CHANGE OF MIND

[lolls29]

Hi CKD family, my husband is on dialysis 3 times a week, 4 hours at a time. Doc needed him to have a transplant by Jan next year and we were all systems go with his sister who was a match, same blood group, the majority of tests leading up to transplant commencing in November this year. However she called saying we should consider India as an option and that she is a single mum and what happens if something happens to her. We reside in South Africa.

My hubby is gutted by the above and feels really down and rejected. He just feels his hopes were built up only to be brought right down now.

I would like to now start a campaign asking for people with the same blood group to get tested but don't know where to start. I'm hoping someone on this group could assist me please.

Thank u all..

[Bassetmommer]

It is a pretty big deal to even offer to be a kidney donor. I can completely understand her reasoning, especially if it her blood brother who has CKD. What if she gets CKD too? I hope you understand where she is coming from, even though it is so very disappointing.

As far as starting a campaign, there are apps you can use on social media. I am not going to tell you how because...well I don't know how. I would ask Google. But I think that I would reach out to the doctor and see if there is a course of action he recommends and a way to get on a list.

I am curious, why India?

[Irelandy in reply to Bassetmommer]

Me too, why Indi

[lolls29 in reply to Bassetmommer]

Hi, I do understand what u saying but why give someone hope only to drop them. We didn't approach her she offered to be a donor. I wish I could really answer u about India. They feel its best to have it done there🙄

[Bunkin in reply to lolls29]

I can relate. I had people offer then never went to be tested. No reason why, they just didn’t. Praying for y’all 😀

[lolls29 in reply to Bunkin]

Thank u so much 💖🙏

[WYOAnne]

Look at the NKF website, they have some ways to look for a living donor.

Before I had my transplant I told my story of CKD and my need for a kidney transplant to relatives, neighbors, people at my work, my husband's work, church, clubs, etc. My boss let me speak at a quarterly all-staff. 2 people came forward and were tested, but proved not to be a match. My friend and neighbor was a match and was going to start all of the other testing when I got the call from the transplant center that they had a kidney for me.

I know someone who put a sign on their front lawn of their need for a kidney. Also a man who had a t-shirt printed with his blood type and need for a kidney. He wore it on a trip to Disney. Both people found a living donor. I guess the point is that you need to think out of the box. You never know where a donor could be.

Best of luck to you! I am 19+ years post kidney transplant!

[lolls29 in reply to WYOAnne]

Wow, thank u for your help. I will definitely consider a few of your ideas. 💖💖💖

[Darlenia]

Sad to hear about your disappointment. It's always hard to work through setbacks when they come your way. This was a big one!

We decided to request a deceased donor kidney upfront as we assume our adult children might well need both kidneys since they already are showing signs of diabetes and two of the three have active autoimmune conditions (psoriatic arthritis, alopecia, etc.). Two are also sole providers for their families. As a "senior citizen" caregiver to my hubby, we quickly realized my hands truly are full; taking on more should our children go downhill would truly overwhelm me. And we also wanted to avoid "legacy planning" issues knowing one had given us more than the others, etc. (A son-in-law also offered but he lives far away, the logistics were overwhelming.) In our view, family donation is a very complex situation - a long range view of multiple issues is important and good to do. Interestingly, when we announced our decision to pursue a deceased donor transplant, our children were visibly relieved since they witnessed the ravages of kidney failure in their dad, realizing they too could wind up in our situation.

Anyway, the transplant center pushed hard that we come up with a living donor, family preferred. But we stayed resolute. (We figured we could pursue a living donor as a secondary choice if necessary.) Thankfully, my husband received a deceased donor kidney this past June (at age 71) exactly one year after starting dialysis and about 8 months after getting on the list. It's been rocky at the outset, but it has since gotten much better. To increase our odds in getting a transplant, we agreed to the center's suggestion that we consider a deceased donor kidney that had issues - kidneys generally not suitable for younger folks. We quickly agreed. So where there's a will, there's a way. I hope all of this sends you a bit of positivity and encouragement that things can work out well, including for you and your hubby. Let us know how your situation turns out!