New Here, Stage 3b Kidney Disease with T1D, feeling down

[DMH200435]

Hi, I'm new here and I don't know what to do with how I'm feeling about my kidney disease.

I am a Type 1 Diabetic diagnosed at 16, 35y/o female with high bp (currently being treated with amlodipine and now losartan) My last egfr this month is 32, my creatinine level is 2.13. I am african american, and with my last appointment with nephrology, it was discussed that my kidney function is expected to get worse and I was told that I can only work to prolong the progression with change in diet, exercise, and controlling my blood glucose levels. My last A1C was in Dec. and my level was 7.2. I have been told countless times in the past that keeping my blood sugars in range will help with my kidney function. I switched nephrologists earlier last year because the one I had before took me off lisinopril in 2020 (due to the ongoing cough and stomach upset that kept me awake at night) and said she felt my blood pressure was well-controlled without suggesting a replacement. So at the beginning of 2021, my egfr went from 40 to 36, and the new nephrologist has placed me on amlodipine and losartan.

Now I am being told that my nephrology team feels I'm going into stage 4 ckd, since they are no longer going by the egfr for african americans and are now considering me being in the "everyone else" category. It was a lot. The "everyone else" category places my egfr at 27, not 32 and ever since I have been fearful, and having ongoing bouts of tears. But in the Nephrology NP notes, my staging of CKD is listed as "Stage 3/4" so this is very confusing considering what was discussed in my appointment. My mother passed at 55 due to congestive heart failure, but she also had ckd on dialysis. My latest nephrology appointment this month involved future discussion of being placed on a transplant list, and looking at kidney failure in my future. I don't know how to cope with how I'm feeling. I am still keeping up with checking my BP at home daily (especially since starting losartan), a diet and exercise routine, and I've lost almost 10lbs. since December and working on continuing my weight loss journey. I'm just constantly worried now and don't know how to shake the feeling, any suggestions of how to cope?

[S_dillow]

take it one day at a time like I do.im also on amilidopine and four other bp meds.im confused by the new standard too. My 40 percent somehow is at 37 and dropping.i watch my diet and am on potassium meds.i just am grateful for waking up each morning to see the sunrise

[UniqueCKD in reply to S_dillow]

Hi S_dillow, I thought you may be interested in this...bit.ly/3v9ktJ7

[nellie237]

That is quite a lot to be dealing with DMH. My daughter K is the same age as you, and T1D since age 10, and has lots of debilitating health problems as a result.

You must be feeling exceptionally vulnerable, and bloody angry too. I very nearly got sent home from A&E after a heart attack a few years ago because I am female.........but it is not the same.

Coping.........that's a tough question. I think that it helps to take time out with something that requires a bit of concentration with whatever works for you (K makes jewellery, which sometimes involves using a hammer), and also time to focus on the positive things that you are doing like losing weight. Well done for that.......not that easy to do with T1D. x

[UniqueCKD]

Hi DMH200435, So heartbreaking to hear what you're going through. Has your doctor ever mentioned mind- body approaches that can help your GFR?

[CKDnomore3953 in reply to UniqueCKD]

Hi Unique CKD,Do you use mind-body approaches to help with your CKD? I use biofeedback to help lower my BP. I have been interested in Bioenergy healing for a while but do not know of it can/will help with CKD.

Just curious as to what type of mind-body approaches you have researched?

[UniqueCKD in reply to CKDnomore3953]

I have been using a new kind of sonic therapeutics technology for my patients with (CKD). It's early in the clinical development, but so far the results are amazing! 27% increase in a patient's GRR in first 5 weeks! HAPPY TO SHARE

[Skeptix in reply to UniqueCKD]

That's some result. What's the tech?

[UniqueCKD in reply to Skeptix]

It is a new category of tech called Sonic Therapeutics. It is in clinical development and initial clinical GFR results are very promising. Essentially its augmenting the brain/kidney via auditory nerves, etc.see the link to use it, there is no cost.

[UniqueCKD in reply to Skeptix]

see more here about the tech: bit.ly/3v9ktJ7

[Skeptix in reply to UniqueCKD]

Thanks for that.

Your offer looks straight forward enough. Coupla questions.

Is there any tech type info which goes into the mechanism whereby this approach repairs kidneys? Take me, for example. Scar tissue in my kidneys (as scar tissue anywhere else on my body) doesn't repair back to healthy tissue under normal circumstances. For me to obtain improvement in eGFR would take such restitution of kidney scar tissue into healthy tissue.

(Which is not to say there aren't other forms of CKD that are ameniable to interventions. But is there explanation how this works specifically in a one size fits all way?)

How long would you be supposing for measurable results to be obtained - so as to know this could be working for you? For example, Lee Hull (who takes a dietary approach, an approach I've taken him up on) says to run the diet for 90 days in which case you will know whether it'll work for you. A few eGFR points up or down isn't something to be paid much attention to. How long for a noticeable improvement (if this method is going to work for you)?

Cheers

[UniqueCKD in reply to Skeptix]

HI , I would expect to see a 20-25% jump in the first couple months, then gradual slow (5-10 point maybe) increase from there every 4-6 weeks. However, it is a new therapy so we are still gathering patient data and learning more...but its free to join!

[CKDnomore3953 in reply to UniqueCKD]

Hi Unique CKD,Is your sonic method the same as Low Frequency Therapeutic Ultrasound (LOTUS)?

clinicaltrials.gov/ct2/show...

[UniqueCKD in reply to CKDnomore3953]

no, it is nothing like LOTUS. See the link for more information: bit.ly/3v9ktJ7

[DMH200435 in reply to UniqueCKD]

Unfortunately they have not mentioned anything like that. The only things they have told me are control my blood sugars, exercise, and diet.

[UniqueCKD in reply to DMH200435]

See this: bit.ly/3v9ktJ7

[S_dillow in reply to UniqueCKD]

I see the info on link.interesting to say the least

[jodaer]

Have you ever thought of seeing a therapist to help you learn to cope and come to terms with your conditions. We all need someone we can talk to and who is always on our side.

[alexask]

Has anyone with diabetes tried supplementing with Vitamin B1 to reduce kidney and retinal damage? There are quite a few studies showing some benefits

[VGC3]

I'm at 3B know. This came after my last blood work which was a 3A my eGFR has been steady for years at 52 and up. I'm an older man that still works out 3 d days a week. The reason for the drop was dehydration because I don't sweat so I don't drink enough water every day. My A1c is at 6.4. I also missed quite a few days during Christmas and when I went back to the Gym I had a hard time getting back in the routine which caused my creatinine to go up. I know that the build up to where I normally at. That also was a cause in my drop. I would make sure you stay hydrated well so it will help get your eGFR back up. I hope you come back better soon!

[Darlenia]

Oh my, that's a lot to take in, isn't it. I really feel for you regarding your T1D, it's a nasty disease and it's hard on your kidneys. I'd like to note that you apparently have a great nephrology team! I'm impressed that they're keeping race out of the data. Data based on race works against African Americans by inflating figures and thus preventing optimum treatment and transplants. So your team is awesome! This said, I trust you're doing everything you possibly can to stay on top of your health re diet, blood pressure and more. This all wins you time to plan your future. In my hubby's case, a T2D, he fell into denial and refused to acknowledge his situation. And this cost him dearly - he refused to consider diet issues, he refused to consider a transplant, and more. He wound up hospitalized for emergency hemodialysis, then had to transition to his dialysis of choice, and more. In your case, you have the support of your nephrologists for a transplant. That is huge. Not only will following their advice help stave off kidney failure and dialysis, but it also gives you the opportunity to transition to a new kidney without going through dialysis at all. In your case, you would likely qualify for a pancreas/kidney transplant which would make a dramatic and valuable change in your life - perhaps eliminating the need for insulin as well. So put your fears and anxieties aside, focus on the future, stay in close touch with your nephrologists, and know you have much life and living to do! Being proactive will lead to great outcomes for you!

[UniqueCKD]

Hi DMH, I am a doctor of whole person medicine and may have some help for you, as I also was the founder and CEO of an award winning diabetes telehealth program/biz. I am offering a no charge program for folks with CKD, with a pioneering new technology- you can join here with this link: bit.ly/3v9ktJ7