Thin Membrane Disease

@goibib Here is an article from the National Kidney Foundation about your situation: https://www.kidney.org/atoz/content/thin-basement-membrane-disease#:~:text=Thin%20basement%20membrane%20disease%20(TBMD,filter%20wastes%20from%20the%20blood.

I see this is considered a genetic condition, caused by mutation of the Type IV Collagen component we all carry. My particular rare kidney disease is caused by a Type III Collagen mutation, so I understand trying to find information can be a challenge!

Getting and maintaining a healthy weight, minimizing stress, controlling blood pressure, and following a sound renal diet that fits your lifestyle can all go a long way to helping your eGFR to stay in an acceptable range. You said you are Stage 4 now? What percentage?
Ginger

Thank you Ginger for your reply. Very informative . My GFR is 30. I follow a vegan diet. Unfortunately I am in a quandary because I also have kidney cancer and the treatment for the cancer has 2 side effects that affect me. Nausea and weight loss. Ofcourse the 2 go together anyway. I am trying desperately to pick up weight but the diet for the disease is not exactly a huge help in that regard. Thanks again

I was diagnosed with thin membrane disease in 1996.
I wish I had reduced my dietary protein early on in the disease. I was successfully managed with medication for 20+ years and have had an active, healthy lifestyle but in slow kidney decline. I was initially told it was not progressive but that was not the case for me. There is still not a lot of information about this kidney defect because it is so rare.

Hi.....I was diagnosed in 2006.
I have followed a strict diet and managed to keep my GFR above 30 and my creatinine around 140. But now I have kidney cancer and that is not in my family. I don't know if you have Facebook but I joined a group there called Natural Kidney Journey and that's where I found out what to eat etc....for the Disease. However now having cancer as well everything seems upside down!
I have lost a lot of weight which I am battling to pick up but the diet is definitely not helping. I was told by my Nephrologist that the Male carries the gene and the female gets it. So cheerful!!! What are your counts ? Blessings.

Greetings all - I'm a 57-yr-old womam just diagnosed with Thin Basement Membrane Disease (TBMD) (biopsy). Nephrologist told me 2 yrs ago he suspected early stage chronic kidney disease/IgA nephropathy... and described the post-biopsy conclusion of TBMD as 'benign' / good news. In digging for more info, I found some recent articles noting TBMD can lead to more serious issues. If anyone can point to info re best practices (diet, exercise, etc) re TBMD, fire away. And healing/peaceful vibes to anyone in need of encouragement 🌼

Hi @nextchapter (I like the username!)
I'm tagging fellow members like @elberkauf @goibib and @gingerw to share their healthy lifestyle tips regarding kidney disease.

Because, similar approaches used for people living with chronic kidney disease (CKD) are used in people with Thin Basement Membrane Disease (TBMD), you may be interested in this related discussion too:
- Stage 3 Kidney Disease and Diet: What can I eat?
https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

Nextchapter, what are some of your favorite healthy activities?

Hi ,
Thanks for your comments.
I try to stick to Jungle Oats for breakfast with Blueberries and Maple Syrup and Oat milk.
Lunch is usually vegetables, with salads especially green eg cucumber, green peppers, lettuce, marrows and limited avocado.
Supper I have Pronutro with Oat milk. I snack on Rice cakes and Oaties. On Friday I cheat and have fish . With every meal I have a tbsp of ground flax seeds.
It sounds incredibly boring but one can make it enjoyable by adding all the fruit and berries......except ofcourse bananas, grapefruit etc....in other words the acidic fruits.
Apple cider vinegar is good....it is PH and especially if one has high blood pressure.
I am 78 and last year was diagnosed with kidney cancer and only have one kidney so they battle each other !!!! Am on chemotherapy. Bit of a challenge but I refuse to let it get me down.
I walk alot every day. Fortunately here in South Africa we may have many political problems but we have super weather!.
I also use a small machine called the Wave. It works with magnetic fields and has so many programs.
Have as much water as I can and drink green tea.
That's me, (I was going to say in a nutshell but my reply seems to have lengthened). Blessings to you all. Sally

Nice to connect with you @colleenyoung and others. I enjoy walking/hiking and try to get moving daily. Hoping for an early spring here in eastern Canada!

Love your enthusiasm! All the best 🙂

Thanks. It did me good to hear that !