I have had 19 blood readings of 20 or less (to 11) since May 2021. Currently 14. Exhausted. Fatigued is not the word!
There has been no talk of transplant at all. Only Haemodialysis, as I am on my own with no support it would be in hospital. Also it would be in a satellite premises a 1.5 hours away from my home! Not happy.
Latest, my diabetic reading has gone up so my Neph has asked my GP's to issue a certain tablet. Nothing so far. 2 months have gone by-they are blaming Christmas-must have sneaked up on them! I have read about this drug-it might be ok for kidneys but is causes loss of concentration and could cause me to not drive my car. My only transport. Not happy at all.
Obviously no real medical support forthcoming from GP's-no change there, or Nephrology .
Is it because I celebrate my 70th at the end of the month? My fitness? Not been tested, no target to aim at.
I have drawn up a list of questions for my Neph, should be now but will be 3 months since last meeting in March.
I am also very seriously worried about the renal diet. I have a J pouch and cannot eat fibre, but non of my medics know what a J Pouch is. Doing without is difficult. They keep prescribing drugs in coated or capsule format despite my requests (these shoot through my system and I defecate some 10 times per 24 hours-this is the cause of my kidney disease, total dehydration)-no help there either.
Any clues?
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Hily
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These are all great questions and should be a discussion with your nephrologist. Can you call and ask for a closer appointment? About the transplant, not sure how that work in the UK. But I would find out on your own where is the closest center, call them and ask about it yourself.
The diet is something with your J pouch should be a renal dietician discussion. Can you get a referral?
Things are different here in the USA and I do not want to give you misinformation.
Thank you. I have managed to see a dietician and asked her did she know about J-Pouches? Yes came the response. So I drove the 50 miles to be faced with a woman who had no idea what it was and a pre printed glossy mag with a 12 week diet for me-all full of fibre and inedible. Also, no real renal considerations either. Nobody on the nursing side of Renal has heard of a Pouch and I am fed up with it. My GP's treated me wrongly for the same reason and all my referrals gave the wrong impression too.
My house is on the market, I am leaving my home country because they are /have ruined my health.
Wow, that's a big decision to leave. I have a question, what tablet for your diabetes did they give you. I too have diabetes, and nothing I have ever taken made me confused.
Jeepers, I just Googled j pouch. That is sad that the doctors do not know. I would definitely call and get a sooner appointment with the Neph. Not sure how that works there, but we get seen every three to four months.
You have a lot on your plate right now. I hope things get better.
The drug is Linagliptin-can cause poor concentration.
You have done more by looking up J Pouch than my GP's have in 6.5 years! I think they cannot read. I live in Wales where we have a devolved government who have allowed our health services to collapse in a heap. They do not do Pouch operations but the medics know nothing of this gold standard procedure freely available in the USA, England and most of Scotland but only in the south of Wales, Cardiff.
I have CKD because of my GP's ignorance of this. 6.5 years of not looking after me, ignoring 3 different letters from my Colo Rectal surgeon and failing me in every way. Incompetent.
Why would they give you that medication when there are soooo many better ones that do not have half of the side effects. I looked it up. Here in the States, it is called Tragenta. Almost killed me. I was on it for a very short time, years ago. It did not do anything for my diabetes numbers. Matter of fact, I was getting over 350 glucose readings. Took myself off of it and went back to Januvia.
Being 70 should not affect anything. I am currently 82 and planning to go on dialysis if needed. I am probably too old for a transplant but you are not so start pushing for that now. Sounds like you need a new GP and nephrologist tho from what I have read medicine in the UK is going to hell. Its not great in the USA either but sounds better than what you are getting. Just dont give up. Keep fighting for yourself.
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