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!

[WildIris]

It does sound like you were screwed by the health system. So sorry that happened.

Have you been retested since it was 11? It may come up, especially if you were dehydrated at the time of the test. So drink plenty of water, there's lots of diet advice in this forum to slow progression, and a few people who are doing fine on dialysis.

Check out Bassetmommer's posts from a year or two back, when she was deciding about dialysis, and then began it. She's still on the forum, and is one of the NKF ambassadors, maybe you could contact her directly

[NoStatinsForMe]

That is so frustrating. Family doctors and general practitioners here in US must be poorly trained/educated on chronic kidney disease as well. Both of my elderly parents are in stage 3a CKD, NEITHER were advised they even had CKD, until my Mom’s doctor finally mentioned it in her chart, and I noticed it mentioned in the after care notes/remarks on my Dad’s chart (my parents have different GP’s).

If these doctors actually took the time to educate patients about CKD when patients are in Stage 1 or 2, and worked proactively with patients, it would be possible to reverse early stage CKD. Instead, they wait to inform patients until they’re already in Stage 3+ and then tell patients it’s nothing to worry about, we’ll just keep an eye on it.

There is clearly something very wrong with our current medical system for doctors to take a wait and watch approach, (and often, don’t even mention or inform). I’m in healthcare and I find this downright appalling. All I can say is we are our own best advocate, and choose your doctors wisely. Pay close attention to your lab work and educate yourself on lab values. Our healthcare system in US is broken and in dire need of repair.

[FelineFandom146]

Hell from across the pond! So sorry to hear about your bad experiences. Sadly, your misfortunes aren't limited to the UK. I was in just Stage 3b and stable for many years until April 2020 when I was in pain from a bad UTI. In my weak moment, I went to see my GP here in the USA where he put me on three meds: Bactrim, Torodol and Urogesic. My UTI cleared up but I quickly discovered later by my Nephrologist that no one with CKD should ever be given this very bad cocktail of drugs. After this, my eGFR dropped to 20 to now where it has been in Stage 5, eGFR of 10.9 for a year now. Questions for you: what is your eGFR now? I understand that in the UK they don't begin Dialysis until it is 10. Here in the USA they want to begin it at 20. However, it is becoming more common for the few, honest Nephrologists to delay beginning dialysis until the patient really needs it. In fact, if the patient isn't showing any symptoms, and lab work is stable, there is no real need to rush into dialysis. Belief is becoming more common that delaying dialysis is better, safer for the patient. A good book to read that can be found on amazon is Learn the Facts about Kidney Disease by Steven Rosansky MD. Another book I recommend is Stopping Kidney Disease by Lee Hull. A big change in diet can do wonders in perhaps, delaying the immediate need for dialysis and/or transplant. Wishing you well. You are not alone in this. All of us on this website is here to help each other.

[blk1]

Hi have you changed your diet? Sop taking metformin and your egfr will come up. Find another doctor keep me informed. I’m worried about you.