So last October after a routine blood test I was told I had CKD. ( 51 eGFR) I never heard of this disease before - in fact, I was shocked as I always thought of myself quite healthy - I eat what I would consider mostly a healthy diet and worked out 5 days a week. I was still overweight ( have been most of my life) I was 196 lb age 58. BP 166/85 So like most of us - went into panic mode - signed up for lots of forums and groups on CKD to learn all about it.. Now- interestingly- just before I was diagnosed - I started to get a salty taste in my mouth - when I drank anything other than water it tasted like someone had put salt in it. My GP prescribed me 3 different medications for Thrush- but it still would not shift. Then all of a sudden it went- only to leave me with a sensation like I had burnt my mouth. After having this for a while I researched it and my own conclusion it must be BMS (Burning mouth syndrome. ) I also asked my Doctor what was my eGFR previously- he told me 10 years ago it was 61- so I had stage 2 CKD then - but in the UK you don't get told you have CKD until it falls below 60 - unless of course, you are a very young adult or child.
In the meantime, my doctor told me not to worry about my CKD as it was nothing to worry about - just get on with life
I bought Lee Hull's book, I changed my diet, ( never followed it religiously - basically, just cut out red meat and lots of processed foods) . So anyhow - I - like most of us when we first get told we have a Chronic condition - I did lots and lots of reading the posts on the forums - I actually became obsessed. I bought a BP monitor - kept on taking my BP ( which incidentally confirmed I have white coat syndrome) as the reading came down to around 138/80 - more on that later.
I did also get prescribed VIT D a few months later as I was low on that.
So ...as I said I changed my diet _ I've always eaten lots of veg anyhow - so that stayed- I never was a great red meat eater - probably once a week - but cut that out completely (I did very occasionally eat it if I had a Burrito or lasagne ) I also cut out all processed meat . I still eat chicken and sea bass maybe once a week, I also do like my bagels and cakes and biscuits - I did cut down but I do still have them. I also have the occasional egg and cheeses. I also still eat chocolate and Crisp (chips) - Wish I could give them up!
In the UK we have a meat substitute called Quorn - and I have to say some of the products you get made with this - it would be hard to tell the difference between chicken/ beef - it is really good. Also, there are lots of choices of Veggie burgers and the likes - so I never really missed out on anything I felt. I was guilty of having a whisky at least 5 nights a week - and probably around 4 doubles a night, so I reduced my alcohol intake massively. I may once a week have a large glass of wine, and maybe every 3 weeks have a double whisky.
As for supplements, I started (and still do ) to take Tumeric capsules, Cod Liver and ACV.
I did for a few weeks take 1/4 teaspoon of baking soda a day - but stopped - basically because I forgot to take it and I am unsure if this is any good for you with mild CKD.
so just a few weeks ago I was re-tested for my VIT D - My Gp told me VIT D was great and he took me off the capsules as he felt I no longer need it as my readings were very impressive and was over the normal. I did find this strange as far as I was concerned maybe just a lower dose - one every other day would have been a more appropriate action.
So around two months ago, I realized this condition was actually doing more harm to my mental health _ It was consuming me. I decided to Unfollow all of the Facebook groups about CKD ( and BMS) and basically just stay with Healthunlocked. I have to be honest too - personally and this is just me - so please I hope I don't offend anyone - but I think some people are labelled with CKD and they really shouldn't be - I included. There are those who obviously have the condition - but you are labelled with it when your eGFR reading falls below a certain number. I am sure if there was a similar test for Chronic - Heart/Liver/Lung - I would also be labelled with it.
Anyhow - unfortunately, I have put 12lbs on ! -( I blame the Chocolate and crisp!)
So my latest readings
Well, my eGFR went up to 64!! it's over 10 years since it was that - so officially I am now CKD stage 2
Blood pressure - the highest its ever been while taking readings my self was initially 144/77 - that was only once in the last 12 months. The last 10 average readings are Max 136/84, Min 115/76, Average 127/80.
In fact, my lowest reading was after I decided I didn't care any more how high my BP was - so basically I was totally relaxed.
Now this is where it gets interesting - while having my blood done- I was tested for Zinc levels - as low zinc levels can attribute to BMS. My Zinc levels came back low! I was prescribed zinc meds. I looked up what the best food is for Zinc levels - and what I found was- RED MEAT! also shellfish, legumes, dairy - basically nearly all the food I either cut out or give up......Also, I have recently found out that low levels of VIT D can attribute to BMS ..and guess what foods are great for VIT D Beef- Liver- Dairy.....
Now - just to complicate matters further - My daughter who is 35 has just had her blood work done - she showed me her eGFR results. Now my daughter who is obese and does not eat a good healthy diet and hasn't for many years - I have to say I was totally surprised -
In 2017 it was eGFR 77, in 2018 - eGFR 82 in 2019 eGFR 89 .
So ..for now...I am going to start eating a little more red meat and dairy - Obviously I am lacking in vital vitamins and these are the best food source for the vitamin and mineral I am lacking. I thought I would just share this with you all - as far as I can understand- one size does not fit all. ....