Hello, I have not posted here for a long time, so I will update my present situation. I am Type 1, diagnosed in 1945. I will complete 80 years with Type 1 in September, this year.
I am now diagnosed with Kidney disease, stage 3a.
I would like to hear from others who have or have had kidney disease. Has your kidney disease improved? How long did it take? What did you do, other than following a diet plan?
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I was thinking about you this morning wondering how you were doing. I am only 66 years in, and haven’t had kidney disease although I do have major circulation problems. I think those of us who did years of urine testing, are very fortunate to not have any major complications from this disease. I hope that you hear from someone soon. I do know that there is an endocrinologist in San Diego who has kidney issues. I can’t remember his name, but maybe someone else will give you his name. I will also try to find it.
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Sorry to hear this, Richard. The 2 conditions that damage kidneys are high blood glucose levels and high blood pressure. I have the first but not the second. Years ago my PCP prescribed an ACE inhibitor, Lisinopril in the lowest dose possible 2.5mg for prophylactic kidney protection. Another hypertension drug class that protects kidney function are ARBs. The T2 drugs, SGLT2 Inhibitors are known to protect kidney and cardiac function, but I am not sure of their suitability for those with T1DM.
As far as diet, what I know is reducing protein and electrolytes. Maybe a consultation with a really good dietitian who can advise you.
This link might be helpful.I am sure you don’t have Alport Syndrome, but the diet advice is probably appropriate for DKD,
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Of course we remember you, Richard.
My dad was diagnosed with stage 3 kidney disease some years ago (maybe during covid). He has done a lot to try and control his blood pressure, but nothing in the way of diet or exercise or weight loss.
There are some blood pressure meds that are better for your kidneys - I think Losartan. That’s what they put me on. I think it has some protective qualities for your kidneys.
I would not say that anything has improved for him, but it also hasn’t gotten dramatically worse.
My thoughts are with you. I was really scared when my dad was diagnosed, but he seems to be trucking along fine.
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That’s one of the ARB drugs that protect kidneys
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I could never tolerate the kidney protector ACE drugs because they would cause my blood pressure to go too low.
My pressure has always been low and my heart rate too.
For no good reason, I’m active but not so active I should have a circulatory system like this.
My father also has low blood pressure, but he also has had heart stents, so you just can’t tell what is the best drug.
I also can’t tolerate statins so maybe I’m just sensitive
You might check with your doctor about if adding Coq10 to your regimen could be beneficial.
https://biquantumarc.com/articles/coenzyme-q10-kidney-disease-review/
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Thanks Marie20!
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Hi, Richard. Sorry to read about your kidney disease diagnosis. This is significant but, as I generally understand it, not an insurmountable diagnosis. Please forgive me for my response since I cannot offer you actual experience. I hope that others who also live with CKD will respond to you as you have requested.
Can you improve your glycemic control? What kind of diet do you eat? Do you prepare your own meals or do others help you? Do you wear a CGM? I understand that making glycemic improvements on the margins could slow down or even stop the progression.
I send you my best wishes, Richard, and if there is a way I can help, please ask!
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Terry4, Thanks for your post. I do use a CGM and I am trying to stay in a healthy range with my blood sugar, but I am having more highs than usual. I am thinking that the CKD may be causing the highs.
I have a diet for CKD stage 3a that I found online. It provides a list that gives what is safe and what I should avoid. I am following it the best I can. I am living at a place that offers assisted living. The meal times are not always appropriate for me, and the meals usually include food that I avoid. Eating is not much fun now.
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@Richard157 I am so sorry to hear that. Sometimes if the doctor orders a special diet they might follow the protocol of CKD guidelines. Times have changed but I know at a place I worked at many years ago, we had some people on special diets and while we made virtually the same thing for everyone there were certain allowances made. But that also might take away more choices for you.
You can check in with the staff and maybe check with them what they are serving and get them to give you certain things? It depends on how big the facility is really. Small places the staff could be open to changing a few things. You open huge cans of things to make the bigger portions so only certain things can be easily changed. Is it possible to maybe get some “safe” frozen dinners??? Heated for you to eat. If the doctor orders items and the facility is at all open to it, sometimes things can be done. I’m not sure what type of place you are at, low sodium options are limited, and then you are probably low protein too. But they have mixes at larger health food stores that might fit the bill or maybe online if you even have a microwave you can make something.
PS At a hospital I was at 40 years ago, my doctor ordered a vegan diet. I got a plate of fresh fruit lol, every day, for every lunch and dinner, virtually the same fruits. That’s all they knew to supply. Luckily I was only there for 2 days.
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Marie20, I appreciate your posts so much. I live with my wife in the memory section of a place that offers assisted living. My wife has dementia. We have been married for 61 years, We do not want to be separated. The non-memory part of the building serves the exact same meals. I have a small fridge in our room, but no microwave. I do not think a microwave is allowed here. Danger of fires? For dinner this evening we had fish, a large amount of white rice, and a roll. The dessert contained sugar, so I did not eat that. They usually have a sugar free dessert for me. Fruit is a rare thing at our meals. I do not drive a car, and shopping at a grocery store is difficult. I use a walker and getting through a store is awkward. I would be in a better place if I left this place and rented a room where I could do my own cooking and preparation, but I need to be with my wife. She needs me, and I need her. Until death does us part.
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Just in case I am sounding pushy, I am not trying to, I am just trying to see what might work? I would check on the microwave? A medical exemption?
I have troubles because of my back. My hubby does most of the shopping. However I have taken to ordering stuff through Safeway or Walmart for pick up. It works great, you don’t have to get out of the car, no extra charges, you just show up and they hand you the stuff through the window. You just need their ap. Check the box for no substitutions though so you have to okay it. Safeway might ask if it’s okay first, but I don’t think Walmart does. Take a bag or box with you, because they literally just hand you what you ordered through your window. Then you just have to be able to get it into the house/apartment etc. But 2 bags is usually not that hard, you could even get 1 bag at a time. It just might open up what you can get to eat.
I don’t know what grocery stores you have around you, but some Safeways are better than others, but they even have some prepared foods you might be able to order with exempting what you can’t eat or substituting. Salads in bags, cut up veggies in bags with special dressings you can eat. You could get fruits, some berries especially. It just might make meals/snacks a little more interesting!
Some of the grocery stores have delivery for a nominal charge or instacart. I used to get delivery when I was working, it was just easier, but picking up at the store is super easy and no fees too!
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You’ve been dealt some tough conditions with eating and blood glucose. There’s still some things you can do.
You may be aware of the general effect of the eating order of food on the ultimate post meal blood glucose. Eat the protein and fat portions of any meal first, then the carbohydrates. Avoid eating ultra-processed foods if you can. Try to follow every meal with 20 minutes of walking. Make sure that you pre-bolus every meal by about 15 minutes.
Pay attention to your basal insulin, whether delivered via a pump or by injection. Adjust when needed.
Your wife is very lucky to have such a devoted husband! I’m sure she has improved your life, too.