Transplant list waiting. Mgus57

[Fsgs57]

This is Mgus57 I did another blood test at Mayo Clinic. This journey to be put on the kidney transplant,list has been emotional one. The feedback I received from the team, at Mayo has positive. They tell me I should be a candidate for a transplant. I hope I receive a kidney soon. I want to wish everyone, good luck and stay positive. Stay tuned the best is yet to come.

[Grammy80]

🙏♥️

[Darlenia]

Congratulations in going after a transplant! Each step you take in that process is another step that you've accomplished. Please keep us in the loop!

[barbara55109]

Are you in Minnesota? It is a six year plus wait here for a cadaver kidney. If you have a donor it is faster. I've been on the list at HCMC in Minneapolis for two years. Luckily my eGFR went up from 7 to 25 so I'm still alive and waiting.

[MerciBeaucoup12 in reply to barbara55109]

Just curious, how did you get your dGFR to increase so much ? That's great that you did

[barbara55109 in reply to MerciBeaucoup12]

My eGFR was slowly decreasing, but my Dr. never told me. I was above 60 up until December 2018. I dropped to 53, 40, 46 and then hit 28 by June 2019. July 4, 2019 I got a terrible migraine. It was super hot. With my ileostomy I easily get dehydrated. I was vomiting everything I drank. I went to ER and my eGFR was 7. They admitted me and loaded me up with IV fluids. Told me I had CKD and had been stage 4 for a year. I slowly climbed from the 7 in July 2019 to 26 in December 2022. So the 7 was a combo of CKD and an acute injury from the migraine/severe dehydration. I started the anti diarrheals and cut back on the caffeine the summer of 2019. I started the transplant evaluation process in February 2020 and because I'd had that low of 7 I met the eGFR criteria. All the nephrologists thought I'd be on dialysis by 2020. I even got my fistula because they thought I was close. Somehow I've stayed in the 20s for the past 2+ years. I have never had high blood pressure. I am a type 2 diabetic, although it has always been in control. Since I went on Wegovy for weight loss my A1C is the best ever at 5.6. I actually get frequent lows and have to carry glucose candy everywhere. I am convinced the 30 years of dehydration is the primary cause of my CKD. The diabetes is likely a contributing factor. The treatment for both has helped me stay in the 20s.

[Fsgs57 in reply to barbara55109]

Arizona

[Fsgs57 in reply to barbara55109]

I'm in Arizona waiting on the ESU coming up on April 3rd. I had dialysis today no cramps. I will let know the results of my test. Stay positive and strong lol.

[Jamok]

It has been quite challenging for sure! I am at the top of the list, but on hold due to some findings on the CT scan that the radiologist is not concerned about but my transplant team still wants another opinion for activating me on the list again so here we are waiting for the second opinion to respond. It’s maddening -every day I can feel my body struggling to compensate for my failing kidneys. My last blood work an 8 gfr. I’m starting to feel some lightheadedness occasionally and a bit more tired, but I also received a procrit shot within the last two weeks so thinking that could be contributing. I’m not prepared for dialysis at all because I am so close to a transplant that my nephrologist told me to hold off -now I am second-guessing that decision. I came into this with a positive attitude, but all of this has just beaten me down. So many doors keep closing with carrots dangling in the window. Honestly, I’ve never really struggled with mental health issues, but I can see how one could develop them over this.

[Fsgs57 in reply to Jamok]

I will say this be your own advocate. What I mean by that is, that doctors sometimes make mistakes. This happens to my first nephrologist thought I was diabetic. I'm not this has followed me to every kidney clinic. I'm at my third clinic. They still think I'm diabetic. I told to take off the patient portal, they said they could not do it. I fell that is a lie. I would double ✔ everything they do. I will post again stay tuned and strong.

[Angels54]

I hope all goes well for you 👍

[WYOAnne NKF Ambassador]

Yes, the best is yet to come! It is well worth the wait. I am 23+ years post transplant and have had a wonderful life - watched my daughters marry, now have 2 grandsons, travel to Europe and the Carribean and had a full rewarding career. Life is fantastic!

Best of luck with your wait!! Le us know how you are doing....

[Fsgs57 in reply to WYOAnne]

Hi WYOAnneI'm doing well I had dialysis today no cramps. On April3rd is when I have the EUS on my pancreas. I hope after this I let you know the results. Hopefully after that I will put on the transplant list. Stay tuned the best is yet to come lol.

[CKD2-4]

Getting on the transplant list and staying on can be a frustrating process- I too had to wait twice to get added back on due to a specialist needing to review my medical records- I try to keep focused on the end goal of getting a healthy kidney and successful surgery. Hang in there.

[Fsgs57 in reply to CKD2-4]

CKD2-4I'm hanging in there, stay tuned the best is yet to come.