Denied a transplant

[Megan024]

Hello, just curious iff anyone has been denied a kidney transplant ? If so , would did you do? Thank uou

[Hidden]

I'm not sure if this counts as an outright denial. I was diagnosed with stage 1 colon cancer 1.5 years earlier. My HMO referred me to a small transplant center in Illinois which denied me the opportunity to even discuss transplantation. Their reasoning, "It would be like throwing gasoline on a fire" — even though my oncologist declared I had a very, very small chance of the cancer recurring. My oncologist said, "Christopher, it would matter if you had the transplant today or in five years."

I switched HMOs and they sent me to a large university hospital in Chicago. Within 9 months I had a new, living donor kidney. Considering I'm on immunosuppresents, I'm vigilant when it comes to getting my yearly colonoscopies and followups. Based on my last three colonoscopies as well as my cancer prognosis my GI specialist recommended my next colonoscopy in three years. I'm a bit more cautious and feel it should be done yearly.

[Megan024 in reply to Hidden]

That’s wonderful news for you!!! Many blessings to you and your new kidney!!

[LisaSnow]

Could you share what reasons were given for the decline?

[Megan024 in reply to LisaSnow]

Sure for low weight

[LisaSnow in reply to Megan024]

Is the low weight due to dialysis effect or an eating disorder? Is there a reasonable chance a dietician can help with weigh recovery? If so there is a good chance of reversing that denial.

[Rmatthew]

Hi, I was denied a transplant back in 2013, due to very poor mental health. I was in a very bad place after losing my best friend, was still on dialysis but not taking my medication and I got a call for a transplant but once I got there I was assessed and told I wasn’t ready for it. Thankfully, therapy and 12 years on dialysis I got a kidney last year and just passed my 1 year anniversary since transplant.

Best wishes and I hope you will get one soon too 💚

[Megan024 in reply to Rmatthew]

Thank you !! I am glad all worked out for you!!

[OriginalDanSuush]

I was denied liver and kidney transplants because i was considered high risk. I went to as many hospitals as I could fromMayo Clinic to Cleveland Clinic. It was around 6 hospitals but in the end I found the University of Maryland and they blessed me with both organs. Unniversity of Maryland takes high risk cases and other complicated cases so I would try there for sure!

[Megan024 in reply to OriginalDanSuush]

Thank you for this information!!

[A-A-B-J]

I put on hold for a transplant in January of 2020 due to excess weight. They got me set up with an awesome nutritionist and I made my mind up that I was going to lose the weight. I lost over 40 lbs from January until august and was put back on the list. I revived a kidney thru an exchange on November 23rd and doing great. I don’t know how much you would need to gain but it’s a battle keeping weight off once you are on meds. I wish you the best of luck.

[LisaSnow in reply to A-A-B-J]

May I ask what BMI you had at the time they denied you?

[A-A-B-J in reply to LisaSnow]

I have to admit I don’t remember. The least amount they wanted me to lose was 30 lbs but would rather it be about 45 which I did.

[Megan024 in reply to LisaSnow]

Hi I am. It sure I remember but it may have bee 15 or 16. That’s a guess at best ! Thanks

[LisaSnow in reply to Megan024]

Your BMI was indeed too low at 16. Please work with an appropriate professional to restore your nutritional status as well as your weight. Are you on dialysis right now?

[OceanBreezes2021]

Has anyone here had experience with transplant eligibility issues due to coronary calcification? Thanks so much.