Kidney transplant

[AmberScavolo93]

Anybody else Waiting for a transplant & feeling like they don’t know what to do or feel. Me I feel lost and numb . Someone please help 😔

[MIKidney]

Amber:

You are not alone. The struggle to get listed has you working hard and now it is just a waiting game. Keep as healthy as possible and take a day at a time. Transplant is a process which can slow to a crawl. Keep in touch with people and keep your mind active on other issues which will ease some of the dwelling on when the phone will ring with the good news.

[Bunkin]

Yes I felt that way. Even had a donor lined up who then ghosted me. My friend started a campaign for me , my cousin saw it and wanted to be my donor. She was a match and here we are a year later still going strong! Don’t you give up! Start a campaign. Make it personal, put pictures. I’m happy to send you what mine was like if it would help, then share share share. Put a sign on your car! Put an ad in the paper. You can do this!!! I also belong to a group of people who are looking fir a donor, just so I can share their stories. You’re welcome to join!! Prayers for you. God can do anything!!

[LBatl]

Go on with your everyday life. Keep yourself busy and enjoy yourself. Before you know it your phone will ring with the good news. But please try not to dwell on it and believe me it will happen! I'm a living witness. God is good!

[Lifechanger1]

Hang in there. I waited almost 4 years! I decided that while I was waiting I would push myself to get in the best physical shape I could so when the time came I was ready for the surgery and post surgery. It kept me busy and gave me goals to reach while helping me stay away from thinking about the waiting. I had to go on dialysis for 3 months prior to my surgery due to my kidneys getting very bad. It was a fight all the way. I’m coming up on my 2 year anniversary, June 2nd, and all is great! Best of luck and stay positive 😊

[sidmoesr]

Hello AmberScavolo93 , my heart goes out to you because I was right where you are , confused, depressed & frustrated felt all alone but I was blessed to have My Uncle Frank who had a kidney transplant way back in 1973 and he walked me through it all so I have to share with you what Uncle Frank told me he said nephew it’s gonna get better and just take one day at a time and while you are waiting for that kidney in the meantime stay as healthy as you can and take your meds and NEVER EVER GIVE UP! I will be praying for you AmberScavolo93 and remember it’s gonna get better just hold on.

[Match62017]

I don’t have much to add because everyone above covered it so well, but one thing that worked for me after I became so paralyzed with fear and uncertainty was something clicked on inside of me one day and I asked the universe for a sign and it delivered when I stopped looking for it and I started looking around at everything I had taken for granted up to that point like the beautiful nature around me and a simple things like a smile from a stranger, my dogs being excited to see me, the ability to still be breathing and much much more. It may sound goofy to others and truthfully if someone had told me this before I experienced it I would have probably thought what an idiot, but along with the things I started to appreciate I started making my self envision myself with these things as a healthy person with a transplant scar. After some practice I noticed I had a better outlook on my illness. One more thing I did was change my negatives to positives , for example I refused to say I had kidney failure, I said my current kidney have given their notice and I’m looking to replace two with one who’s a loyal worker. I also like to live by the saying “ you never know what tomorrow will bring, but whatever it brings I’m ready to rock it”

[Beachgirl32]

I’m in the waiting game also and yes it is hard. I had one offer that didn’t work out. That was when I was told I have high antibodies so I’m going to be a hard match . I know some have tested for me they were no match so I get kind of down but then I feel bless that these people care enough to try to be a donor . One day it will happen in god time . Either through a living donor or deceased donor what ever god has plan . My hope was to get a transplant before dialysis but I know that going to be soon . I’m trying to stay healthy as I can I do have pain because I have polycystic kidney disease so the flank of my back hurt a lot but my heating pad help . I do have a web page where it gave a story about m health . Asking for a living donor giving all info about pair exchange and there links on there to read videos .I post on social media and. Ask my friends and family to share my story.Don’t feel bad about getting depress or scarce it all normal , I have had to fight many battles from my disease and I will fight them until the end . I try to focus on the good minutes of the day for me just getting out to walk by myself is a stress relief. One day that transplant will happen for me and one day it will happen for you

[Jayhawker]

I’m so glad you posted this. I, too, am waitlisted. I was actively waitlisted Jan 10, 2020. So I’m into my third year on the waitlist. Meanwhile I’m aging. I’ll be 69 in Aug 2022. I literally feel my biological block running out as I sit on the waitlist. Clearly I’m stressing out about whether I’ve got enough time to wait on a kidney.

I’m nit on dialysis. There has been a modest improvement in my renal function over the past year. My GFR went from 14-15 up to 18-19. I’ve been restaged to Stage IV. That will likely lead to more time waitlisted before I get a call. And, I’m expecting several calls before I get THE call.

Fortunately I’m still working full time doing a job I love. That does help me manage the stress. I finally had to tell myself that this is out of my hands. I’m thrilled with the improvement in my renal function and that it has been stable. I’m thrilled that I’m still not on dialysis. My kidneys plummeted into renal failure in Jan of 2017.

I’m learning to embrace the notion that God’s gif this. I’m not sure what His will is; however, I’m ready for any inevitability, I think. I’m also battling to stay as strong as possible. I do well with meds, diet, and fluid intake. I’m rebounding from a serious vitamin D toxicity episode. Frankly, it’s taking me longe to regain strength than I’d have expected. Slowly but surely I’m seeing improvement though.

Anyway, thanks so much fir making your initial post! We’re all in this together regardless of the treatment we receive😊

[Eyak1971]

Thanks for reaching out. We all know and care about what you are going through. But since covid is somewhat under control reach out for some human contact for support. I attended a local kidney group regularly in my area for education and support. I had to go to a therapist to handle the loss of control I was feeling and my kidney doctor and nurse gave me a feeling of positivity that it was going to happen. I registered in 2 areas and one night I got the call. It was 5 years later but it happened. Take care and it will happen but enjoy today.

[PKDpostTRANSPLANT]

Hi there. This is only my second day on this forum, I signed up to get post transplant experience since I just had my kidney transplant last week, just a few months after my 35 birthday. I saw your post and I wanted to offer some encouragement. I know how hard it is to wait, and to want something so bad, but I feel like the best thing we can do is to try to enjoy each day exactly where we are right now. There are some things you can do to put your story out there and seek a donor, but at the end of the day it is not in your control, but trust that God has a plan for you and has is taken care of. Rest in that, and enjoy what you have today. Getting a transplant does come with its own hardships as do all things in life. I was told no grapefruit, herbal tea or medium rare steaks. So if you like those things, enjoy them now! Don't wait to get a transplant to live, each day is a gift! I have read story after story of how God has worked out each unique transplant story, and He has yours worked out as well! Trust His timing!

[BamaRob2003]

Hi Amber,

I too am playing the waiting game and am trying to learn ways to increase my chances. If I learn anything I will let you know.

God Bless You,

Rob

[horsie63]

I just got a call from my neph on Monday that he was referring me to the transplant center so I'm starting from the very beginning with the "what happens next" I do work and enjoy my job so there's that but the stress with that is what and when do I tell them. All I can do is wait so I'll keep eating right, exercising and taking my meds as that's all within my control.