Chronic Kidney Disease Research Community

Some kind of online community for Chronic Kidney Disease is being created. My understanding is that people can share their data and experiences and perhaps receive recommendations. Click the following link to find out more and sign up: https://stuff.co/s/icjdGZMQ

2019 Blood test results - more kidney function degradation :(

I have been suffering on and off from intestinal inflammation over the last four months, causing abdominal pain and discomfort. The initial attacks seem to have been triggered from eating a peanut and dried fruit trail mix (on four occasions after eating said trail mix I had symptoms within a few hours / next morning) but it's not clear whats causing the symptoms to remain three months later. An ultrasound shows no other problems except the inflammed small intestine. A specialist ordered lab tests (which I was overdue for anyway), antiparasite medication (which had no effect), and an anti-inflamation medicine, which also has had little effect. Unfortunately the lab tests show a ~10% degradation of kidney function compared to tests a year ago: I feel this degradation of kidney function may be related to the the intestinal inflammation (maybe whatever is causing this is also causing kidney inflammation) and so hope to get this resolved as soon as possible and start a renewed effort to improve my overall health with daily exercise and more careful attention to diet! Will test again after a few months of dedicated wellness activies and see if it shows any improvement.

Kidney degradation not inevitable?

The following article says a recent study shows that while kidney function tends to decline with age in more developed societies, this is not necessarily the case in less developed societies. That is, it seems like there may be something (or many things) about our "advanced" lifestyle which causes kidney degradation with age. No clues as to what that might be yet but adopting a more "primitive" diet (less processed food, more fruits and vegetables) certainly seems like it would probably benefit the kidneys.

https://www.economist.com/science-and-technology/2019/02/13/loss-of-kidney-function-in-old-age-is-not-inevitable

Since being diagnosed with chronic kidney disease (CKD) almost 10 years ago I have fortunately so far managed to avoid further measurable kidney degradation. My diet has basically been:
- Relatively small amounts of animal proteins (no beef/pork/chicken/etc., fish/seafood maybe twice a month, eggs once week, yogurt and cheese a couple of times a week, no milk).
- Limited wheat (I found that wheat seems to cause me abdominal swelling).
- Lots of fruit, vegetales and nuts (bananas, avocados, broccoli, carrots, apples, almonds, unsalted peanuts, beetroot, lettuce, tomato, beans, etc.).
- Low sugar and salt (no added salt in cooking. Avoid high salt foods).
- A certain amount of starchy foods every day: Rice, corn, oatmeal, sweet potatoes, potatoes.

Surefire way to reduce blood pressure without drugs

Almost by accident I've discovered that running temporarily reduces my blood pressure significantly: I've measured by before and after blood pressure 4 times now and in each case it's dropped from around 130/80 to around 115/70 (or less) after running ~2km (~1 mile) (which is around 10 minutes running for me). The effect only lasts a few hours but I'm guessing that running twice a day could help a lot in keeping the pressure down, and thus reduce the damage to the kidneys from high blood pressure. My only problem is that as well as chronic kidney disease, I also suffer from chronic laziness... but I guess it's just a matter of acquiring the habit.

The dangers of Internet diagnosis

The last month I have been suffering horribly from itchy skin, mostly in the legs. Because there were no visual signs at first, I self-internet-diagnosed the itchiness as a symptom of poor circulation (a few months ago I was diagnosed with a probable small blood clot in one of my legs). My doctor for circulation issues is located about an hour's drive away and in any case had no appointments immediately available so I self-medicated by doing exercise (to improve circulation) and applying moisturizing cream to reduce the itchiness. Unfortunately, over the weeks, things worsened until the itchiness spread all over my body, in patches of visible spots, and so uncomfortable it was interfering with my work and leisure. Now it was obvious that this must be some kind of skin issue and probably not related to circulation or my kidney disease (which can also cause itchiness in the late stages). I called my usual dermatogist. Next available appointment in 6 weeks. I'd probably commit suicide by then because the itching was driving me crazy. Managed to get an appointment with a general practitioner who swiftly diagnosed the problem as scabies, a microscopic parasite whose larvae burrow into the skin. While relieved to find I had a treatable condition, I felt like such an idiot for suffering for so long just because of my general reluctance to organize a visit to the doctor. Moral of the story: SEE AN EXPERT as soon as things start getting worse! Second moral: Those of us who have easy access to healthcare are unbelievably lucky compared to the most of the world's population. We should appreciate that and not take it for granted.

2018 test results - slight degradation

I made my yearly trip to the laboratory to analyze my blood and urine. The results are in the last column of the following spreadsheet:
https://docs.google.com/spreadsheets/d/1G0WEsPxngX-lorVAL3c-jqkqrzy5wqud9iEqOHPB4Qc/edit#gid=0

My blood creatinine is at 2.3mg/dL which apparently isn't a clinically significant increase over the average 2.0mg/dL I've had since diagnosis in 2009, however combined with some other factors, explained below, I feel it does represent a slight decline in my kidney function and a sign I should make more of an effort to look after myself. This level of creatinine gives an estimated GFR (kidney filtration rate) of 33mL/min/1.73m2. Normal filtration is over 100. Filtration of less than 15 requires dialysis. Hoping I never get to that point.

Over the last few years I've noticed poor circulation in my legs, with red spots appearing on my lower legs and larger stains around the ankles (see photo).

I'm not sure how related this is to the kidney disease but for a while I used to sleep with my legs raised and it seemed to help. For the last few months however:
a) I've been doing less exercise as my bicycle (previously my main form of transportation) was stolen from my home and I was reluctant to buy another in case it suffered the same fate.
b) I kind of forgot about sleeping with my legs raised.
c) My blood pressure has tended to be elevated.

The reduced excercise has added a lump of fat on my belly and then a week ago I started feeling a strong pain inside one of my lower legs which seemed to fit the symptoms of some sort of blood clot. Ultrasounds have confirmed probable "deep vein thrombosis" and a specialist has put me on a (expensive) blood thinning drug for two weeks and given me some very stylish knee length compression socks to wear.

I've taken all this as yet another wake-up call to focus more on my health and making an effort to eat only healthy food and get lots of exercise and sleep. Regarding diet, I've been eating wheat over the last year or so, thinking that perhaps it wasn't particularly problematic. However given my worsening kidney function, I'm going to try eliminating it again for six months and see if any improvement is registered. I'll also be watching my consumption of salty foods, like cheese, which I've gradually been eating more of than previously. Stay tuned...

Blood test results 2017

My serum creatinine is at 2.2mg/dL (normal would be máximum 1.3mg/dL), which is the highest  since may 2009 when it was 2.4mg/dL. While this could be considered a disimprovement, it could also just be a temporary blip. I did eat a whole fish a few days before the test, so that could have elevated my blood creatinine level. Here's hoping that we're not observing degradation...

The rest of the results were fairly stable and normal or close to normal, with the exception of Uric Acid at 8.9mg/dL (normal 7.2mg/dL) but this has been up and down since diagnosis in 2009, ranging from 4.7 to 9.2mg/dL.

Full lab test history:
https://docs.google.com/spreadsheets/d/1G0WEsPxngX-lorVAL3c-jqkqrzy5wqud9iEqOHPB4Qc/edit#gid=0

Blood pressure, with treatment, has been around 125/75 during the last year.

So, all in all, things seem to be stable and I'll continue with the same regime:

• Losartan 50mg / day for blood pressure. Without treatment I would probably be around 130/90.
• No meat. Occasional fish and seafood (maybe once or twice a month).
• Occasional eggs, cheese and yogurt (around once a week).
• Lots of fruit.
• Fair amount of vegetables, rice, maize (corn), potatoes, sweet potatoes, beans, avocado, coconut, nuts.
• Fair amount of cacao, mostly in Kicao bars (I work for this company).
• Very little wheat or pure milk (not sure if this is relevant to kidney fucntion or not but it seems to have helped my intestines).

Wishing you all the best with your journey.