Trying To Stay Positive-: Hi everyone, I’m... - Kidney Disease

Kidney Disease

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Trying To Stay Positive-

cshel98 profile image

Hi everyone,

I’m still waiting for my (hopefully eligible) donor to reply and tell me if she called to get tests done. But it’s a shot in the dark and even if she’s not a match she mentioned her fiancé and daughters wanted to get tested also. But my mental health is not very good at the moment and I’m starting to think what if they’re all not matched and yadda yadda yadda. I do go to therapy and I started to overcome my negative thoughts and feelings with comments like “what if one of them are a match?” and so on.. but lately it’s just been hard. Stuff keeps coming up that’s very frustrating and I don’t know if it’s going to interfere with me getting a transplant.. I honestly feel like I lost all hope. 😕

11 Replies

I totally get it! I have been in that same boat for the last year and it's super frustrating! Sometimes I get so flustered and angry I scream into my pillow! It also doesn't help when the transplant team starts tacking on things that you need to keep an eye on, which can be frustrating as well. If it makes you feel any better, a lot of things that come up that may seem like a big deal, turn out to be minor and won't affect your chances of being eligible. I personally have a check list that (and i am not kidding) reads "have you eaten ____?" (Whatever is required...mine is potassium rich foods and protein) "Have you met your fluod requirement?" "I got X hours of sleep today!" And so on. I find that breaking down my eligibility requirements into daily segments is helpful and made it a lot easier to stay relatively healthy.

Another thing to keep in mind, is that bumps happen. Your transplant team is picky for a reason! I've been struggling with my transplant postponements, but at this point it'll happen when it does. I've had those same thoughts as well and it is completely normal. Going for a transplant is not for the faint of heart; it is mentally, emotionally and physically exhausting and it's totally okay to be pissed off or upset at the world. How picky are you being with donors? I'm just curious since we're around the same age. I had additional stipulations attached to my donor screenings because I was so young and my transplant team was only willing to screen people who were in my age group (21-30). I hope your next donor is a match and makes it through screening! If you ever need an ear, feel free to message me! It is really hard to go through this and you are not alone.

cshel98 profile image
cshel98 in reply to Ladybug_05

I’m honestly not very picky at all with my donors. This lady is the only person in the past two years, since I’ve been on the waiting list, to be checked out. I just want them to be healthy before and after the transplant is all. I know some people wanted to donate, but they either had kidney stones or something to deal with their kidneys way back when. Or the other people who wanted to donate, I didn’t want to put them through the struggle of living with one kidney because I knew they wouldn’t be able to handle it. Like you said, it’s physically mentally and emotionally exhausting.

& I understand that sometimes you make big deals out of small things. God wouldn’t put us through something He knew we couldn’t handle. So I plan on keeping my head up high and rolling with the punches.

I’ll definitely be sure to message you sometime.. the same goes for you too! ❤️ I’m always a listening ear.

Ladybug_05 profile image
Ladybug_05 in reply to cshel98

I've had to decline people because I didn't think they could handle it too. It's hard to do, and for some reason a few people became offended that I said no, but it is what it is.

It's a very frustrating time. You are not alone in worrying.

If your donor is not a match there's always this scheme you could consider....

odt.nhs.uk/living-donation/...

Its all worth it when you've had your transplant and you're feeling well again.

Hoping it all works out for you.

Best wishes,

Mgt

I'm sorry you have to go through this. Hoping a successful transplant goes through for you soon. Sending positive thoughts your way!

cshel98 profile image
cshel98 in reply to Zazzel

Thank you! ❤️❤️❤️

Sorry you’re feeling down! I have days when I’m totally positive and days when I’m just negative and everything goes wrong. I don’t have any living donors so it will just be dialysis for me. Trying to come to terms with that. Some days I can, some not so much. Try to stay focused on the positive. That at least there is some help for this disease and new things are on the horizon. It gets me thru. You’re in my thoughts and prayers 😀

cshel98 profile image
cshel98 in reply to Bunkin

I’ll be sure to keep you in my prayers as well! I just wish I could give out free kidneys to everyone in need, but I guess I can only dream right... 😩 it’s just crazy how us kidney patients would become donors in less than a heart beat meanwhile jimmy and John are at home enjoying whatever it is people who aren’t sick enjoy I guess.

It just really irritates me when people don’t even look into how CKD or Dialysis is god awful and want to look at us and say “you look fine.” Just because we look “okay” or “fine” they could care less.

I have very thin hair and I get made fun of or looked at and laughed at by so many people everyday, it’s just really sad people are so quick to bully and not ask questions. I’m very open about my CKD.. butI wasn’t at first because I felt really embarrassed because of the work “disease.” But now it’s whatever.

Look at me ranting on, being petty and stuff 🤦🏼‍♀️ I apologize haha I get al worked up and I start to ramble on. 🙄🤣

I know exactly what you mean. When I had a meeting with the doctors staff, he told me to put it out there, people can’t help if they don’t know. I was hesitant but my family has a group page on Facebook so I put it out there. Know what I got? Nothing. I had a few people including my brother, sister in law, nephew and niece say they would be tested. They never went. My niece even replied to let my nephew do it, he never does anything for the family! It’s like you said, if I had a healthy kidney and someone needed it, I wouldn’t hesitate. Then a friend of my husbands started a gofundme page to help with expenses to get on list. Know how many of my family donated? 2, and that wasn’t even my immediate family. It’s beyond frustrating to me. All my life I thought I had this wonderful family, so caring. They always gave to every other cause but for some reason, not me. Now look at me having a pity party! It’s just I have no one to talk to about it. I actually don’t go to family functions anymore. Just me, my husband and my dogs. I don’t go because to my face they would just be so concerned, but it’s only words. Actions speak louder than words. Ok I’m done with my rant now! Thanks for listening 😀

cshel98 profile image
cshel98 in reply to Bunkin

It’s always nice to rant every now and then. I’m basically the same way, it’s just me, my boyfriend and his family. My family is out of the picture. Except my mom but she’s a whole different and long story. If you ever want to message me you can! I love to hear what everyone has to say because I know it feels to have all that bottled up inside.

join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://facebook.com/groups/natural... answer the 3 questions when you click on the site to join or you will automatically be deleted...

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