Cause of Kidney Disease.

[Hily]

I was diagnosed with egfr45 in 2018 by my GP. "but don't worry, I will keep an eye!" .

That was all I heard until the following annual check egfr 11. No bloods taken during those 12 months at all. No monthly bloods taken for Glucophage XR as required. Not to be used under egfr of 30. It was 11 and she didn't stop it then.

Has I been on NSAIDs, Had I? NO. Had I been taking rectreational Drugs? NOOOOOOOOOO .

She accused me of everything. I stood up and told that the the only drugs in my system were prescribed by her! The End.

However, I had not considered her poor doctoring skills.

2001, I had my large bowel removed, an ileostomy formed because of Ulcerative Colitis. Within 18 months I had a J Pouch created and the ileostomy removed. I moved home to this area soon after. She knew all this, she had examined my abdomen and seen enormous scarring and no ileostomy.

She made a poor referal to the local Nephrologist missing out the original diagnosis date! and within a few months I had a Ferritin Infusion. The End.

5.5 years later-no further treatment given and my egfr had dropped steadily to 11. April 2024

Instead of any care I was shafted to another general hospital under the same Health Board. New nurses, new Neph. Start again!

Sept, met new Neph. Unable to tell him the def cause of Kidney Failure. Asked his secretary. Unable to speak or send a message to Neph under any circumstances. Nov 24.

I had complained regularly of overactive Pouch going to the loo 12 times a day (diarrhea) to GP & Neph

Took Immodium spasmodically only if going out. I was totally dehydrated. Nobody thought of that.

No Colorectals in health board at all. Nobody knew what a JPouch was! Some Renal Nurses thought I was talking about an ileostomy bag -being "coy". They are highly trained nurses!

I managed to see my original colorectal surgeon across the border in England who confirmed my cause of CKD.

Nobody told me about St. Marks in London and what they do. I hope they can help me if I can be referred in time.

New appointment in April 25 to see new Neph. He only has one idea, to have a fistula and a lifetime of dialysis.

[Darlenia]

I'm so sorry to hear about your situation and all the issues you're facing. I know there is another person in this community who also went through the same thing as you (ileostomy, kidney disease, etc.). I hope she pops up here and can offer you information and guidance. Most with kidney disease have a team of doctors who share information information with all the others after each visit or hospitalization. In our hyper-specialized medical world, doctors often focus only on the piece or part of the body that they studied - as one specialist told me, "We stay in our lanes." My husband has gone through the spiral of kidney decline, dialysis and now has a transplant. In our case, my husband's GP receives and studies all the reports from multiple specialists and has become our "coach" when things go off the rails. He's referred my husband to different doctors, taken over his care in others, and more. I don't know anything about the health system in your country, but I truly hope something similar can happen for you. You, especially with your complicated history, deserve to be followed closely and given great medical care. Hugs!