I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Naynay99 on July 25, 2018, 05:55:06 PM
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Hey all. Have not been around for a few weeks- been off work and attempting to have some summer fun. Doing pretty okay, Labs are stable, slowly losing some excess weight, BP is very good, tho I am still feeling very tired all of the time. And as much as I have tried to expelain it, my friends keep asking if I’m doing better, they seem to believe that following this renal diet will make my kidney function better, when the goal is just to stave off doing any worse.
Anyway at this point I have managed to tell my family and most of my close friends. And have since received some fake kidney donor offers from people who are well meaning but perhaps had not thought it over more before bringing it up with me. I hope I don’t sound like an Ahole- I realize how huge donating a kidney is but the false hope and unhelpful commentary have been a bit soul crushing. Then I hear stories of people where every family member and friend jumped up and volunteered to get tested right away, and well that just makes me feel like complete shit when that has not been my experience.
Since my brother who offered backed out before even getting tested or learning anything about it, I have been pretty gun shy about the whole living kidney thing. It just seems too complicated and awkward and hard to not take it personally when certain people do not volunteer to help. I dont know. My coworker friend had offered a few months ago when I told her about it, but never mentioned it again and when I told her my brother was out, her reaction had just been “that sucks”... so I figured her offer was just her being nice but that it was not sincere.
Anyway we hung out the other day and out of nowhere she asked how my latest bloodwork was and when I told her it’s been stable she comes out and says “well as soon as you start getting worse let me know and I will get tested”. I didn’t know how to respond so I just said thank you. I wanted to explain that the goal is to get the transplant before I get worse and not after; that doing it pre emptively has the largest chance of success and before D has a chance to affect my heart, etc. But I didn’t know how to explain that without sounding ungrateful. I feel like people think I’m totally fine just because you can’t see kidney failure. Like I don’t look sick enough to help yet... But after I have lost even more kidney function and my body has been wrecked by dialysis and I am on the way out, then they would step up and help because then I really need it.
Idk. Another friend texted me after a bad accident had happened on the hiway saying she hoped that no one died in the car accident but if they did she hoped they were a kidney match to me. Quite a fuucked up and rather disturbing text to receive but I know it was well meaning. She also lamented that just when she made a good friend THIS goes and happens!!!!! That one just made me laugh and I said jokingly “way to make my kidney failure about you”. I know what she meant, tho. She also proceeded to tell me about that guy who wore a T-shirt in Disney begging for a kidney for his wife as a suggestion. Yeah, no. My aunt and mom sent me a cast iron pan bc she heard it helps give your body extra iron when u cook in it. Lol. I am grateful that all of these people care and get they don’t know what to say, It’s just that all of this “helping” everyone is doing seems to turn into me having to reassure them that it will all be okay.
Sorry this is so long and random. I suppose my next step needs to be to see if my coworker is serious, and maybe have a mutual friend talk to her about it bc it is such a touchy and uncomfortable thing to broach. I’mjust not sure how many kidney offer take backs my mind can handle. Maybe I should just forget it and focus on waiting for a deceased donor kidney. The fact that my hospital has one of the top living tx centers with a big paired exchange program makes it hard not to consider tho. When I had told the surgeon I didn’t know if me and my brother had compatible blood types, she said he doesn’t have to match- that they do paired and group ecchanges all the time, that as long as I had a willing donor she could find me a kidney,
Well have a goof nite all. Thanks for listening.
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Hang in there NayNay. Would you feel comfortable sharing some donor info/websites with your co-worker? She would surely run across info on how much better a preemptive transplant is. The kidney foundation of Illinois has informational luncheons a couple times a year; I am sure there are some in your area. I've been twice- different speakers, workshops, several surgeons from different centers, free lunch and door prizes! I took my prospective donor and her husband, we had a good time. They were shocked to see other dialysis patients who appeared to be worse off than I am. They had a panel of donors speak- that was helpful.
As for your brother, he could be getting flack from uninformed friends etc that made him back off. Karma is a bitch, he'll have to deal with regrets so I'd let him off the hook. Plus, I believe any misgivings over being a donor might jinx you and your success.
Since I look better and have more energy since starting dialysis, many friends etc assume I'm just doing great!! So I've kinda stopped sugar coating everything and letting people know the truth. Dialysis is a chore, a drag, a big PIA.
Good luck!
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Thanks cupcake. That’s a good idea- giving her some websites or info on kidney donation and transplants to read. It Would also better prepare her for what she would be in for if she did decide to donate.
I’m (mostly) okay with my brother backing out- he had a good reason. CKD seems to run in our family and he’s scared his girls may one day need a transplant which is totally valid and reasonable. It’s just his way of telling me he had second thoughts was that he didn’t. He just avoided me and when I called and asked directly he pretended like he was still looking into it but it was obvious he wasnt so I just dropped it.
Anyway, thanks for the advice. I know I’m just feeling overwhelmed. It was so much easier last time when I got a cadaver kidney. Asking people for help is hard enough for me, asking them for and taking an Internal organ seems impossible!