Kidney problems on and of for three plus years

[vonni17]

Hi all well my egfr is now at 69% which dropped in two months from 89% I have a creatinine level of 89% now can't remember previous results on creatinine levels this is all blood results

My urine results was abnormal three times consecutively there was red blood cell of 46-59 I am aware over 30 is not normal

I have suffered with six urine/kidney infections this year by July

Recently had biopsy and am awaiting results I can only hope this will find the cause as I'm very fed up with this it has affected a lot of my life the pain I get the vomiting the antibiotics the hospital admission

I feel like I have lost my life to something they still don't know why too

[Hidden]

Don't let yourself get too frustrated. Change doctors if you have to and stay positive. There are probably lots of things they have eliminated so celebrate what you know you don't have while they test and find out what may be causing your problems.

Remember, someone always has it worse than you do. Find a good support system (this forum is a great start) and especially someone who you can vent to and speak about your issues without being judged. Come on here anytime to share and look for sympathetic folks.

[vonni17 in reply to Hidden]

I know there will and is people much worse of than me, it all started after a really bad infection that kept me in hospital for most part of two weeks

They really didn't expect to see my egfr keep dropping it was at 90% originally with bad infection they managed to stabilise but not now it's definitely dropping

It is very considered to change doctors as the new one claim the rbc is a period hahahaha except I'm post hysterectomy (2years post) so you can imagine the frustration when a doctor stands there and tells you you claim this etcetc

Wish my old gp would return 🙏🏻

I am under nephrologist and a consideration of auto transplant is was on the cards but not sure now with recent results bloods and urine

My awareness is this is done for healthy kidneys who suffer with loin pain hemature with no kidney disease

Thank you for your help and support

[Nutbrownhare in reply to vonni17]

Hi

Try not to worry too much. It can be very normal for Efgr to fluctuate, especially if you are having renal infections. I have a long history of renal infections, as a result of CKD, however it could be a change in hormone levels for yourself as your body adjusts after your operation. I know that was two years ago, but major surgery can take time to recover from.

I would ensure that you drink plenty of water (fruit juice, tea, herbals teas are good too). Cranberry juice may help with the infections. Avoid NSAIDS if you have pain, as they effect the kidneys. Eat healthy foods and do exercise ( though always get advice if this is out of the ordinary for you)

If you have had several doses of antibiotics that too can affect your creatinine levels, as can strenuous exercise before your blood test.

It is good that you are under a nephrologist to find out the cause of your infections. There may be a reason or not. But it is normal to investigate if you are getting frequent infections. My mother in law went through a time of having them and then things just returned back to normal and her Efgr is great at 80%. Efgr does decline with age and rarely do healthy individuals have 100%.

It can be a shock to find your Efgr level has dropped, people here do understand. I found it a shock a few weeks ago to find out mine is now 41%. But compared to those on dialysis I am still in a good position. However, we all support each other here, wherever we are at. We all need to vent our fears, but remember those hopes too.

Best wishes. Let us know how you get on.

[vonni17 in reply to Nutbrownhare]

Hi thank you for your replies I don't get to come on here that often with work and family life,

I was given an appointment for last Tuesday so I'm thinking great get some were with this know!! The doctor didn't quite no why I had been called in as full results was not back from biopsy yet I'm thinking I will see the surgeon who arranged with results in next couple of weeks fingers crossed

But it's looking more and more likely they will say I have loin pain hematura syndrome as this is what they are already thinking with ckd2 but a further 9% decline it will be 3

I know there is people much worse of then my situation and I just have to remember this

Peeing blood or horrendous kidney/loin pain in utination are two of the major effects

Thank you all so much for your support and kind words

[jobeth]

It took till my GFR dropped to about 14 before I got serious about changing my diet. I had tried to change some things previously, but without a lot of support from others, it is too easy to go back to old habits. When my GFR went to 11, I decided that I was going to do everything I could to keep off of dialysis, regardless of what anyone else thought. I have eliminated meat and dairy products from my diet. I was using mostly fruits and vegetables with a few nuts and seeds. After a week or so, I felt I wasn't eating enough. I was still searching for information. I found the McDougall protocol, which is based on starches with fruits and vegetables. I added starches back into my diet. I am feeling better, and my GFR went up to 12 after just a coupe of days.

[Rosemary201 in reply to jobeth]

Hi

I'm new to this forum, it's exactly what I need! 😊

46 yrs old GFR =35

IgA nephropathy diagnosed at 20 yrs old

Pyeloplasty done in June

I'm intrigued about your ideas on diet.

I've seen very conflicting readings on food choices. Most say eat healthy & exercise.

Which seems so generic. The "renal diet" seems so hard to understand & contrary to the norm. Please advise. I'd love to hear any tips & thoughts you on diet. Thank you.

[jobeth]

I am getting the chapters of a book by Lee Hull called "Stopping Kidney Disease". He is sending out one chapter a week. We are up to chapter 6 or 7 now. He is giving a lot of research that has been done about various diets. He had kidney disease and was able to at least maintain his function if not improve it though diet. His theory is that you put less into your body than your kidneys are currently able to handle. Then your kidneys function just fine. This works better if you start where you are, than where I am, but I am doing my best to eat fruits and vegetables with starches to get the rest of the calories. The hardest part is to keep the fats low and find other things I can eat to make the starches taste good. I will be getting my bloodwork done in a day or two to see where I am. I am hoping that I am still at 12 or gone a little higher. Will let you know what you do. If I have gone down, I will do the colon cleanse program from Dr. Scholze (herbdoc.com) I used some of his #2 a day or two before my last blood work. Not sure if it had an effect or not.

[Rosemary201 in reply to jobeth]

Thank you for your reply.