perineal myxoid pseudotumor of fat

[snoochy]

I have had CKD3B for 7 years. I am 76 years old. I suffered from end stage interstitial cystitis After battling it for 5 years. My ureters would back up fluid into the kidney and cause UTIs and hydrophynosis, landing me in the hospital on IV antibiotics for 5-6 days, 6 times that year. My urologist sent me to the Mayo Clinic. My bladder was hard as a baseball and very small. It only held 6oz of urine at a time. The advise was to remove the bladder in June of 2022. They performed the surgery (8.5 hrs) removing the bladder and creating a stoma opening in the abdomen from a bowel resection and created a a little pocket for the ureters to flow into which then flows into the urostomy bag outside on the abdomen. It’s been a challenge adapting to this, but I don’t regret having it done. I can sleep through the night and go out of the house without the constant pain and urgency that I had been living with.

What does this have to do with my kidneys? Well, over the last 2 years I developed a very large benign growth that encompasses both kidneys and both ureters. I have stents in both ureters exchanged every 3 months. That is the only treatment. I lost about 100 pounds as I was extremely nauseous, bowel upsets, and vomiting. This growth would require taking out both kidneys, transplant one kidney and repair or transplant the ureters. In the meantime, my kidney functions are hovering in the low 30s GFR. I don’t believe at my age I would survive that surgery. They also did not have many hopeful thoughts as to helping the kidney function. If it was around one kidney they might be able to help me, but due to the bilateral growths, the outcome is bleak. I’m sorry to have taken so much time, but I feel this forum of people will understand my frustration and anxiety.

if you read all of this, thank you. I’m sorry for the struggle we share, but as one of the posts said, all we can do is do our best to live with a healthy lifestyle and be as kind to ourselves and others. I need to practice kindness and mercy. That’s what helps the most, to feel useful in life and thankful for blessings.

[CuriousCKD]

I am profoundly sorry for the absolute nightmare you must have been suffering through this very frightening situation. All the best to you!

[drmind]

Bless you for all the suffering and anguish you are encountering. And, bless you for trying to remain positive. You put me to shame thinking how I complain about my very minor issues. I can only hope and pray there are some positives in your near future.

[Merny5]

You certainly have been through a great deal. I am so sorry that you are suffering and frustration. Wishing you well in the future.

[CKDcaregiver]

sending you positive thoughts!