Hello, sorry I ask “alotl” questions.

[AxolotlArtist]

Hi, I’m a 53 year old woman who has had progressive, large fiber, axonal neuropathy in my feet and legs up to my hips, and axonal and demyelinating neuropathy in both hands and lower arms. I was asymptomatic until 3.5 years ago.

As for CKD, it started out in 11/2016, as my GFR hit 63, but no one told me. In 1/2018, it was at GFR 65, and again, no one told me. That was right before I left for a long trip in Eastern Europe, which ended with me having a severe respiratory infection, and bruised and swollen legs from several falls. Five months after my return, I was diagnosed with CMT 2 Disease.

No one tested my kidney and liver function again until 3/2021. It was at GFR 56, down 9 points in 3 years. My doctor said I was fine. In November, I was retested at GFR 51. 5 points down. A different doctor, my GP, finally diagnosed me with CKD.

Is this normal or fast progression?

I am not diabetic. I do not have high blood pressure. I do not have any genetic abnormalities; I had my Exome done. I do have familial hypercholestemia. My grandfather died of a heart attack when he was 47. I have very high cholesterol, LDL, and triglycerides.

I am trying to weigh out whether to take a statin drug, since doing so will likely worsen my neuropathy. It would not be an issue if the possibility of diaphragm paralysis was not a concern, as it is with some subtypes of CMT and with other neuromuscular diseases. However, my chance of heart attack or stroke is 22x more likely at phase 3, with my familial cholesterol, my doctor said.

Meanwhile, I see a specialist in 3 weeks because my neurologist wants an expert second opinion on my neuromuscular disease. It is also moving too fast. CMT does not seem likely now.

Someone mentioned hair color? What about doing art with epoxy resin while wearing a respirator mask? What about swimming in chlorine?

Sorry I have so many questions, but all of this is new.

Glad to be here!

[jodaer]

Ask a way. Welcome. I can't answer your questions but will say eGFR of 51 is not horrible. I don't take a statin as I have in the past and had a horrible reaction. I also don't have any heart issues and I'm 79. Sending lots of positive thoughts your way.

[AxolotlArtist in reply to jodaer]

Thanks. Do you have familial cholesterol? That is why my risk of heart attack and stroke is so high.

[jodaer in reply to AxolotlArtist]

Not really sure, my dad died of heart disease, mom had a bypass and she should have had another one but she didn't tell anyone she was having problems. My cholesterol is very high but as I said all my heart tests are good. Beings I'm 79 I don't feel the need to be hurting or uncomfortable just to add a year or so to my life. With diabetes, COPD and CKD plus a couple minor conditions I'm sure my heart will just give out.

[AxolotlArtist in reply to jodaer]

Well, that does give me hope. I’ve had high cholesterol since I was 20, no matter what I eat, but I am grateful to have been spared diabetes. It’s good to remember that negative outcomes really aren’t inevitable.

[horsie63 in reply to AxolotlArtist]

I have high cholesterol in my family. I cannot take statins as they give me horrible daily migraines. My neph just put me on Zetia and I have blood tests on Monday to see if it's affecting my liver. If not I'll keep taking in and test my cholesterol in Aug to see if any improvements. I don't eat red meat and rarely any other meat but maybe once a week some chicken. I started walking 30 min a day and hope all these things help but with a family history I can only do so much.

[orangecity41 NKF Ambassador]

Welcome to the forum. Just to share. I am age 80 , and diagnosed at CKD level 3b . My GP prescribed an appropriate CKD diet base on bloodwork for sodium, potassium and phosphorus. CKD has stabilized. I too have neuropathy, for which taking prescribed medicine ( gabapentin) and fortunate it works for me. I am taking a non statin for high cholesterol, which also is working. Keep us posted.

[AxolotlArtist in reply to orangecity41]

Thanks for responding. I don’t know if cholesterol contributed to kidney disease or the other way around, but my neuropathy started two years before kidney disease. These medical issues are perplexing!

[orangecity41 NKF Ambassador in reply to AxolotlArtist]

Medical issues can be perplexing. In my situation some medical conditions are part of aging. I try to be proactive and do what is best for me.

[Chimama]

Hello 👋 seems you have a lot on your mind I sure can relate. First just a suggestion but do you have a Cardiologist? Rheumatologist? My family history leaves me with some crappy genetics too🙁My mom died at 48 of a stroke. I’ve had mini strokes. My dad , brother, grandparents both side heart attacks.. me a couple heart attacks and a stent I also have autoimmune diseases.. several so from what I’m learning from all the great folks here we really need a team of docs . Take a online Davita class

I learned a lot there. So diet is a really big deal with CKD . I take a statin for high cholesterol levels and my triglycerides are too high I’m severely anemic. Haven’t seen a nephrologist yet maybe in May depends on Covid I guess. My egfr was like 38 then in three months down to 34 . I too have a lot of swelling and I think several of us take regular lol falls / mishaps not funny 😆 but better to laugh than cry. My Dr didn’t Even mention my CKD I found it myself researching my medical records!!

So it’s great to keep up with labs etc..

As far as ‘ hair’ I dk about epoxy? I think you need refer to your docs. Write down all your questions take someone with you it helps especially with brain fog . I’ve had my hair colored treated many times but that’s a good question for dr too.

Chlorine? I’d think with a respirator you might be sure to talk to doc . Pool? Swimming is great exercise . You really do have a lot of questions and they’re good ones but better answered by you medical team . I think here we more or less share problems and sometimes we get ideas from others about how to manage different issues. Wish you the best ... welcome

[KidneyCoach NKF Ambassador in reply to Chimama]

How are they managing your anemia? What are your hgb levels? Just curious

[Chimama in reply to KidneyCoach]

🙋‍♀️ yes it was 8.9 and iron sat8% It was better in Dec than late summer at 8.2

Ferrous sulfate but it causes bad stomach distress so I just take a multivitamin that has 44% of daily iron requirement .

[CKDnomore3953]

Hi AxolotlArtist, I am Stage 3a CKD. I also have hypercholesterolemia with total chloesterol close to 300. I started a low protein plant based diet in June 2021 and my blood tests in Dec 2021 showed that my total cholesterol had dropped to 247. I am hoping that it will drop further as I intend to eat this way forever. There is a new product that I have seen advertised for lowering cholesterol levels. It is based on plant sterols and was developed by a cardiologist. StepOne foods. steponefoods.com/You might look at their products and ask your doctor about them.

[AxolotlArtist]

Thanks. I’m surprised my doctor hasn’t suggested that! She does want to put me on a statin, but that’s about all she said. I will ask about those other things you mentioned.