Kidney damage over 7 months, Not sure on best action plan

[biowarrior]

Hi, I'm a new member.

I joined r/kidneydisease, but thought I would make a post here as all the info from people has helped me massively. I know I'm fortunate I'm only stage 2/3.

25 Male, 81kg, 185cm. blood pressure 125, gilbert's syndrome.

— contracted Hep C in September

—I didn't know until January I had it, so was probably doing a lot of damage by taking prescription drugs and eating badly.

—I started to get kidney pain in January. I have had a lot of issues, all my blood tests were out. Thankfully I am cured of Hep C now as of April, and my pain is less, and liver has returned to normal, but now I have kidney disease and still bit of pain.

My creatinine has fluctated: peak of 140, I thought it was improving as I got a 120 test a month ago, but most recent rest was back up to 132, this apparently puts my GFR at 52-63.

I have felt awful since December, and although cured, I am still really fatigued and cannot function at all how I used to be able to. My red blood cells were out of whack when tested in January, but maybe fine now.

Looking at a study online, creatinine reduced on average 20 pts after the Hep C cured, but I have been cured for 2 months. And I fear it has been a very long time of damage (7 months) so not acute.

Current plan:

—I'm going to try and go plant based and eggs diet, and lose 10kg of muscle to see if that will help.

— I'm Trying to get an ultrasound, but am in the UK, and GPs don't really care unless you are dying especially with covid.

—I'm a bit lost so I've ordered a steroid medicaiton online called prednisolone, as I think my kidney woes stem from autoimmune triggered from the hep C (this apparently can happen, inflamed glomerular). But that may take weeks to get here cos of covid and I haven't made up my mind about it.

Any ideas would be appreciated.

The current medication I take is

—testosterone (low dose),

—100mg thyroxine (not sure if I need) ,

—wellbutrin 150mg, tianepentine sulfate 15mg (not sure if this irritates my kidney, but i trialled going off it and my GFR came back a bit worse. I was also taking a lot of supplements but have now mostly stopped. I have been depressed ever since hep C, as I can't do anything. My sleep isn't great (avg 6 hrs).

I can't pinpoint what worsens the flank pain, gluten and dairy seem to, and maybe the tianepentine.

[orangecity41 NKF Ambassador]

Welcome to the forum. Am glad you were able to get some helpful information. We are not able to diagnose nor give individual kidney health plans. Before you do any plan ,it is best to consult your Doctor, as with kidney disease your Doctor would know best what will help or hurt your kidneys.

[Bet117 NKF Ambassador in reply to orangecity41]

In total agreement with your advice, Orange City.

Well, compassionately and elegantly stated.

A credit to the community.

[Bet117 NKF Ambassador]

Welcome biowarrior,

You have come to a wonderful community filled with incredibly supportive and caring people.

You have well outlined your medical situation which is not simple and does not have one answer.

You may get many opinions from the members of this community but the bottom line is YOU. Remember that we are all different. What may work for one person with a specific kidney or other disease may not be good for another.

Putting a Heath Care Team who openly communicates with you in layman's terms and is willing to both listen to you; especially when you see labs off and are not up to yourself and communicate with the rest of your team, be it email, fax or call to promote the best possible care for your needs; especially where medication and supplements are concerned so everyone is on the same page.

I agree with Orange City, speak to your doctor.

I would print out a copy of your labs, checking off areas of concerns and a list of what you are eating, medications and supplements and make an appointment with your doctor and review them with him/ her. They know your medical history and case. If you feel that any physician is not meeting your needs, don't hesitate to seek another opinion.

This this process so your feelings are very normal.

Please reach out and let us know how you are doing and what is recommended.

We care and will always reach back to support.

Bet

[biowarrior in reply to Bet117]

Hi—

Many thanks for your warm reply.

I agree, I would love to get a diagnosis from a good nephrologist.

I'm struggling to get a nephrologist or somebody to see me—I'm in the UK, and the NHS isn't that proactive until you get to the specialists, I've managed to get an ultrasound referral, I don't know when that will be. The GPs over the phone just said they can monitor it.

I could go private, but can't really afford it and the one I tried to get didn't take new appointments because of covid.

At the very least. I'll definitely update this thread.

I still haven't accepted that I will have 57 GFR which might be silly . As my case is quite specific: most likely acutish 'Membranoproliferative Glomerulonephritis' from hepatitis C.

[Bet117 NKF Ambassador in reply to biowarrior]

Hi biowarrior,

Please feel free to private message me at any time as I am happy to support.

Thanks for including all of your threads. It is not easy; just to hear the words kidney disease is frightening and very normal. ( Forget Hepatitis C to be watched)

Breathe ...

It will all work out down the line, it just takes time to put everything in place.

My very dear friend lived in South End by the Sea for 35 years and recently moved home to Ireland with her husband and son. She and I speak once per week. We have supported each other through kidney issues so I have a pretty good idea how the health system works. It is not simple and now with the Covid it is more complex.

I am going to send you a private message so that you will know how to access that feature.

Speak soon!

Stay safe..

Bet