Don’t know how to feel

[Nikki41775]

So, I just found out my donor backed out on me. He just had his tests done and has the same blood type as me. I totally understand that he has the right to back out on me but he mentioned to me numerous times over the past year that he would give me his kidney. He’s backing out because he can’t get his family on board. I just wish he would have done his research before he opened his mouth

[Herkidney]

That's rough, but please don't give up. It's entirely possible that he may change his mind or that another donor will step forward unexpectedly. I know it sounds very cliche, but a positive outlook really does help your physical well being too. Keeping my fingers crossed for you!

[Nikki41775 in reply to Herkidney]

Thanks so much!

[EDom]

Im so sorry to hear that... Hang in there... Its probably hard but try to stay positive... Sending prayers ur way

[Nikki41775 in reply to EDom]

Thanks! I’m trying!

[rabbit01]

Sorry to hear that. When someone we love is suffering it is natural to offer help initially without thinking through the potential consequences and I guess that this is what has happened here. It is a very difficult thing indeed. It’s a big deal giving up a kidney so I can understand why he and his family are worried about doing it but I myself having only 10% eGFR knows what a huge life change it would be for us to get a working kidney. As you say he should have done the research before offering and getting your hopes up. But it is what it is and you just need to put it behind you and move on. All the best. The people on this forum are all here to provide support so stay in touch.

[Nikki41775 in reply to rabbit01]

Thanks. My GFR is 11 last I checked so I understand! I’m trying to put it behind me. I just needed someone to talk to about this since I can’t talk to my husband since the donor is his boss so I understand the difficult situation is made worse given the fact that he has to see him every day

Thanks for listening

[rabbit01 in reply to Nikki41775]

Anytime. As I said we have all got each other on this forum so stay in touch.

[Bunkin]

I’m so sorry. I haven’t experienced that. I’ve experienced a lot of people saying they would be tested and didn’t even do that, so I know how disappointed I’d be. But I’ve learned it must’ve happened for a reason, one we may never know. Don’t give up! With God all things are possible ❤️❤️

[Cazzy41 in reply to Bunkin]

Bunking I can totally relate to what you have written. All the people that kept going on about “I’m getting tested to help Carol” and the only one who went was my 21 year old son. He wasn’t a match but that made me relieved as I didn’t want him to be a donor. But totally agree that you must never give up even when things are at there hardest ❤️

[Bunkin in reply to Cazzy41]

Absolutely! I’ve had so many things happen to me I don’t understand. I’m just now starting to accept that’s just the way things are. Now it’s up to me to deal with it. I don’t have to answer for how others treat me, I only have to answer for what I do and how I handle things. It took me a while and a lot of prayer😀😀😀

[Zazzel]

Oh, I'm so sorry. That must be frustrating and disappointing. Sometimes it feels good to just vent and get it all out and feel a little sorry for oneself before one can move ahead. We understand as we all have been in disappointing situations where others have let us down, so go ahead and vent, we will listen. Get it all out. I always allow myself that little indulgence, then I pull it together and move on. Guess we all have different ways of coping, but working through your feelings is important rather than masking them. You are strong and will get over this roadblock and make peace with it. Sending positive thoughts your way!

[Nikki41775 in reply to Zazzel]

Thank you!!!

[RhenDutchess123]

I understand how lonely that feels...i have also had people offer kidney

..but then begin worrying about the risks for them and i understand that...i also worry about the risks for them..most have offered BEFORE they have researched it...i just keep hoping for the biotic kidney to be perfected so no one had to make those choices...it is so amazing to me ...with all the break throughs in medical...that no one has been able to offer much more than dialysis or donor....i feel alot of it is due to lobbyists...Dialysis and Transplant are HUGE buisness...that keep research funding suppressed....in reality..the kidney is just a filter...they cost 8.00 for your vehicle....i understand it does more..but with medicine and diet the rest can be some what controlled...and would give a good quality of life...all the money that has been spent on kidney research and this is the best we get ???....appalling...

[Nikki41775 in reply to RhenDutchess123]

That’s the problem.. no research first. The fact that he was EXTREMELY vocal to me about helping me for over a year before he even researched it was a problem. I can accept the fact that he backed out because my husband warned me that he would. I’m just having a problem with the fact that he couldn’t tell me. I think I at least deserved a phone call or even a text for that matter instead of hiding behind my husband

[Bunkin in reply to RhenDutchess123]

I do believe the bionic kidney is going to happen soon and we’ll all be ok😀

[RhenDutchess123 in reply to Bunkin]

me too...the major problem with them is blood clots....but i have read they found a way to coat them with something that prevents that....would be so wobderful !!

[RhenDutchess123]

Right....but he didnt and if he doesnt want to now...i guess he doesnt have to...but he had to have known how your world was depending on him...at least a call...a heart to heart with you....i am sad this has happened to you...will they put you on the list now ?

[Nikki41775 in reply to RhenDutchess123]

I’ve actually been listed since November 1. I have a difficult blood type though. I’m an O and he’s an O as well which makes it even more difficult to take

[RhenDutchess123]

right...but my doctor told me sometimes a rare blood type can actually move you up on the list....with Donor Share Program....exp...a man with 0 wants to donate to his wife with a B positive...but they usually have more donors with B positive...so they have Donors "swap"...you would get the O...and a B Donor would give to the wife....they try to get the 0s first...because they cant take another type...while other types are more available.....or perhaps if your husband is a B positive...he could swap his for an 0 for you

[Ladybug_05]

I am so sorry that this happened to you. I too had this happen and it's beyond frustrating, upsetting and whatever other emotions come with it. With that being said, I really hope that another person will do their homework and step forward soon! You are totally validated to feel the way you do, and I hope that you are able to move on ahead with a positive outlook, because your time will come and this will all have been worth it! Good luck

[Nikki41775 in reply to Ladybug_05]

Thanks Ladybug! Thanks for the positive words and the reaffirmation of the fact that it’s ok to feel like I do. I’m really grateful to this group because you guys are the only ones who know and understand how I feel

[jesselizzard]

So sorry for this news! It’s always a possibility the donor could change his the mind. Maybe in time he will reconsider. Or, a new donor will come along when you least expect it. 🙏🏻

[Nikki41775 in reply to jesselizzard]

Thanks! He definitely won’t change his mind. Everything happens for a reason I guess

[jesselizzard in reply to Nikki41775]

Well, I will pray a new donor comes your way!

[Nikki41775 in reply to jesselizzard]

Thank you!

[RhenDutchess123]

How are you feeling Nicole...are things still going good and getting easier ?

[Nikki41775 in reply to RhenDutchess123]

I’m actually feeling good. I went back to the gym today. Things are going as good as can be expected I guess considering :). How are you?

[RhenDutchess123]

Feeling okay....increasingly tired and developing evening headaches...I have never had headaches in my life.so this is new..I am sure it is from anemia....You are going to the gym again?....that is wonderful...the dialysis must be helping inrease your energy...My labs have worsened and I go to my Nephologist tomorrow...dreading it....

[Nikki41775 in reply to RhenDutchess123]

Fingers crossed! Let me know how it goes!

[RhenDutchess123]

i will....not sure if i am hoping to stay away from dialysis or hoping to start it....i want to feel better...

[Nikki41775 in reply to RhenDutchess123]

I understand. I felt the same way. Dialysis made me feel better

[RhenDutchess123]

that is so great to hear !!...it is a life change and time taker....but it just seems to me that it would be worth the time and inconvienence rather than feeling like crap all the time...

[Nikki41775 in reply to RhenDutchess123]

Definitely a life changer and time taker!!

[RhenDutchess123]

do you take epo or anything for anemia ?

[Nikki41775 in reply to RhenDutchess123]

I’ve done iron infusions and am getting iron injections

[RhenDutchess123]

iron injections are probably helping you the most !!....what are your diet restrictions ?

[Nikki41775 in reply to RhenDutchess123]

My last round of labs my hemoglobin was good

As of right now not too many restrictions. Protein is key I’m told. It’s nice to have a glass of OJ with breakfast every now and then

[RhenDutchess123]

my hemoglobin is 14....what is yours ?