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I've had a very anxious couple of weeks and I think i just needed to share the information and potentially hear some reassurance? I dont know..
I was diagnosed with High blood pressure 3 years ago (when i was 38) and put on Ramapril, initially 5mg then upped to 10mg which I was taking up until 2 weeks ago....
2 weeks ago I was feeling nauseous and tired for a few days and then experienced mild pain in my chest, I was worried it was my heart so went to A&E where after blood tests, EKG and chest x- ray I was told my heart was fine but my kidney levels were off, the DR explained that he thought it was to do with me taking Ramapril so gave me a prescription for Amlodipine and told me he was refering me to a renal specialist to be safe, it sounded pretty mild by his explanation so I did not worry and waited on my appointment.
Well a few days ago i had my appointment and it wasnt great, I was told my GFR was down to 20 and I needed to have an MRI of the area to look at any potential damage, they explained that when I was diagnosed with high blood pressure in 2019 my GFR was at 65 , I was never told this at the time or told to look out for any symptoms and apart from some blood tests about a month after starting on Ramapril was never asked to have blood tests again, I was just given a repeat prescription and told to monitor my BP, I did that semi regulaly at home and although not perfect it was not bad.
So essentially my GFR has dropped from 65 to 20 in 3 years, im so anxious at the moment as the specialist said that potentially now im off Ramapril the GFR may start to go up but until they dothe MRI (scheduled for just over a week from now) and keep monitoring they wont know.
Some back ground info I am pretty unfit and I am obese, 6ft & 301 pounds, ive struggled with my weight for a long time , im working on it but I tend to do well for a while then gradually put the weight back on.
I know my weight and lack of exercise is a big factor in all this but I am still struggling to come to terms with such a big drop in kidney function in only 3 years, and am angry and frustrated that I was not better informed, I am very worried I will need dialysis before long and a transplant when im only 41 and have a young family, I am flipping moods multiple tmes a day from a positive attitude and pragmatic approach to frustration and tears, its been a rough week.
Apologies for the info dump I think I just needed to offload a bit, thanks
1 like, 2 replies
no apologies needed. you are having difficult time managing all these issues very normal.it almost takes a spread sheet to keep track of everything. ask about patient support groups and for a way to help you get thru this period.
best advice study all the medications and health issues you have learn to be your own advocate. i have had similar issues with family members .
there are ways to help with kidney function. foods to avoid and foods to support kidney function. as well as medications.
would also be a good idea to check with a councillor to help with depression for little awhile which in turn can help give you the tools to be in control of your health in a positive scenario.
life is a gift. take it one day at a time.
Ok. so an update, its been a bit of a whirlwind of tests etc, ive had an MRI which did not show narrowing of the blood vessels or shrinking of the kidneys, so I went in 2 weeks ago for a biopsy on the kidney, I recieved my results yesterday, I have IGA Nephropathy the auto immune disease which damages the kidneys which is both scary as hell but also weirdly good to know that it was something out of my control?!
So I have been given a fistful of pills to take daily to hopefully stop/slow the deterioration of the kidneys but realistically at some point I will need a transplant, so my focus at the moment is to lose some weight, been a hard couple of months but I am focused now on improving my weight and fitness and taking it day by day.
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