Old Korean Veteran(83) with stage 4 ADPKD: GFR21, Creatinine 2.91. Heart valve replaced 2 years ago, 4 stents, emphysema (not on oxygen yet), asthma, 3 hernias (abdominal, umbilical and hiatal), the usual leg and foot swelling, elevated BP per the bad kidneys, a few allergies, low thyroid, minor(?) arthritis of the hands, challenged hearing.
Medications: 2 blood thinners plus aspirin, thyroid, blood pressure, prostate, chest pain preventive, albuterol as needed.
The VA nephrologist won't talk to me as I caught him in a lie and challenged him: he said there is no treatment or cure for CKD, and I told him that I agreed with him as to no cure but I had been to China for treatment and they had been treating it for almost 4000 years so where had he been? He even had me on a prescription for calcium. Calcium buildup is why my heart valve had to be replaced. There are always treatments for whatever you are afflicted with. I wear a brace on my right hand or I forget and cause myself really sharp, lasting pains. Use hearing aids too. I use an adjustable hospital type bed to elevate my feet so the swelling can go down while sleeping, elevate my torso for comfort of my back: I usually am back pain free even with the orange sized cysts on my kidneys. Sometimes though I do use Tylenol for various pains. Use a walking cane too as I am sometimes dizzy from the meds. Physically I am a wreck: pot belly from my oversize kidneys, get winded easily, weak and low stamina. The nephrologists in my area (and it may be the same all over) just seem to want us on dialysis asap as they own the clinics (that's where the money is).
Diet: There is no Certified renal dietician at my local VA and the clinical dietician has proven useless as she just hands out printed sheets. A month ago I decided to go Vegan and that is a trip by itself, combining the Vegan diet with the no, no's of PKD. Hunting, I have found some really good tasting TVP products. Even Subway has a pretty good Vegan Pattie. 50 years ago, I'd have had a terrible time. It's really not that extreme but what do I have to lose? Who knows, I might last several more years and I usually feel pretty good.
Although you list several physical challenges, your optimistic spirit really comes through in your report! Bet you would make a great neighbor.
Thank you so much for standing in for the rest of us with your military service. It is a shame and disgrace that our VA and gov't have so woefully neglected those who served in our stead.
I see my first dietician today and others have told me I've probably already learned more about my diet needs than the dietician will know. We can all print out food lists but developing a meal plan takes more strategy and knowledge than I have at this time.
I'm new with the CKD diagnosis but am thinking like you that a more vegan diet along with the restrictions will prove the healthier route for me to begin to follow.
You are a charmer! Thanks for your age young attitude and willing desire to try new ways to live a healthier life.
Hello. I just found a comment by you on the Parkinson’s Health Unlocked site and read a little about you. Hope you don’t mind me butting in... My husband has Parkinson’s and I am constantly researching everything for him.
I’m sad to read about your health problems.
We helped care for our dear 85 yo friend who has been on dialysis for over 8years.
Have you looked into activated charcoal? They say activated charcoal supplements can help lower blood levels of urea and other waste products in patients with end-stage kidney disease. Once our friend was on dialysis I didn’t like to interfere with the activated charcoal as I know the specialist would have been furious.
Also, regarding the calcium buildup, you’re completely right about this supplement. The doctors should never prescribe this without prescribing Vit K2 as well, as this then takes the calcium to the bones and not the arteries.
Please do your own research on the above if you’re interested.
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Looking for a natural homeopathic nephrologist
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advice finding a nephrologist?
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No diabetes or hypertension but GFR/Creatinine cratering
