27 and GFR of 21- what next?

[chronicandcute]

I’m 27 years old, my GFR has been below 30 since developing CKD whilst pregnant in 2020. My latest GFR is 21, I have always had well controlled T1D. But given my age I’m wondering generally what the next steps look like? Finding it tough to be a mum, have my career and look after all my autoimmune conditions! Thank you.

[Bassetmommer]

HI Chronicandcute,You do have a full plate. First of all, breathe. You got this. Try to figure out your priorities and you will see that you are the most important part of the equation. I know it is hard. But without your health, the family and career will mean nothing.

See where you can solicit help. Are there ways to make your life easier with support with the family in care for your children and home? Ask for help. We women think we have to do everything on our own. Stress is terrible and can add to your issues.

See if you can get to a renal dietician who can help you get the right foods for you. Low protein and less animal foods are the way to go.

Make sure all the medications you are on are renal friendly. And try to maintain your diabetes as best as you can.

I am not sure where you live, but here in the USA we have FMLA which helps protect your job when you have a medical condition. Not sure if where you live if you have something like that.

Make sure your health team is a team with you in the center. See a good nephrologist and keep your doctor appointments. Do they feel there is a chance for rebounding on the GFR? There are many of us who have made significant improvements with diet and exercise.

Wishing you the best and keep asking questions. We are here for you.

[Darlenia]

Oh my, you have a lot going on! You seem to have a good endocrinologist since you've largely kept T1D under control. Unfortunately, many that have diabetes, particularly T1D, also wind up with kidney issues. So now would be a great time to chat with your nephrologist. It's possible that your low GFR situation may still improve although some time has gone by since the birth of your child. I do know many in the US often hop on the transplant list to get kidney/pancreas transplant when their GFR reaches 20. I'm not sure what the eligibility rules are in the UK, so ask your nephrologist about that if he deems that your situation is chronic. If so, the goal is to get a new kidney and completely avoid going on dialysis. Interestingly, some who receive a kidney/pancreas transplant no longer have diabetes. Quality and longevity of life is generally much improved. So take a long-range look at things and take steps accordingly. Information and awareness is good!

[RickHow]

There is no such thing I suppose as good news given your "numbers", but there is something that is hopeful. It has been 2 years and your egfr has stayed constant (a one-point change is insignificant). Your is likely diabetic nephropathy. You are at stage 4 CKD. Your nephropathy is obviously slow progressing and perhaps due to treatments from your doctors has reached a level of no progression. Now you mention autoimmune conditions. Have you been told your nephropathy is autoimmune nephropathy? There are 3 types of nephropathies. Hereditary (seldom treatable), Autoimmune (usually responsive to treatment), Diabetic (can be slowed).

You are obviously under doctors care (t1d, kidney, etc.). You ask what the next steps look like. No one can really answer this question better than your various doctors, and even they can only give you what they think will occur. Again a lot depends on your type of nephropathy. BUT you should definitely pose your question to them.

Generally (no matter your type) progression is very slow.

Some mention transplant. In general you have to be in end stage kidney failure to qualify for a transplant, unless you have a relative/friend who is a match and is willing to donate a kidney sooner (which most insurance will not pay for unless end stage). Again depending on your type of nephropathy there is a "new" treatment of transplanting cells into the pancreas. Sort of experimental at this time.

One thing is for certain, progression is usually very slow as you have shown now with 2 years of no progression. Also, more importantly, this is currently a field that is getting a lot of attention and a lot of trials for different treatments. It could be tomorrow, nor next year, or who knows when, a breakthrough is developed.

I give you an example. I developed kidney cancer that spread to my bones. At the time it was found there were only minor oral treatments for this type of cancer, none of which were highly successful for more than a short term. BUT the month before I was diagnosed a new treatment was approved (IV immunotheraphy in combination with an oral medication) which again is not a cure but so far has given me over 2 years of relatively normal life. So you never know and therefore your questions (what to expect) can not be answered. Certainly not by people on the internet such as myself. Work closely with your doctors. Ask you questions to them. No question is stupid. Do not be shy.