I have just found out after reading my medical file that I have chronic kidney disease stage 3. you can image the shock on top of having a being diagnose with heart disease ie cardiomyocytic. The worse thing about my doctor as never told me about it. I am so stress out.
Kidney disease: I have just found out... - British Heart Fou...
Kidney disease
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Winter4519
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51 Replies
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You must try and find out why this information has been witheld from you. You are entitle to know everything about your health. Then you need to know what they are going to do about it and i suggest there can be something done about it to stop the kidney disease from worsening. That should be your aim.Where did you see this info.?Who put it on your record?You can also complain to PALS.
found out as I wanted to get an health history/record. there i spotted it. but I will complaint, have seen the doctor he appeared not to concerns and as order another blood and urine test to check on the condition. would you believe it i was diagnosed in 2021. If no wonder i was feeling pain in the lower back and constant swollen legs which at times can become very swollen and painful. sometimes i cant put wear shoes or slippers. all the doctors nurses and consultants offered is water tablets as they could not find the cause
When I had high potassium and Creatanine counts the doc. checked for kidney disease by asking for a kidney scan. That confirmed there was nothing serious lurking but I had advancing age kidney 'failure'....Iam 85... so not to worry unduly! No pain but slightly swollen ankles .Diuretics seemed to sort it out but you need to be prescribed meds.that suit you.My Spironolactone was stopped andAmlopodine was given... a very small dose together with a small dose of Furosimide.
Hi,
I'm not surprised that your GP hasn't mentioned CKD previously, in my experience its not seen as a problem for the best part. CKD is measured in 6 Stages, with 5 being the worst. I was told many years ago when my eGFR tanked that CKD is notorious for people with heart disease, as is age. It's a case of what stage you're at, but, it doesn't mean that there's a problem or there will be some form of intervention.
One of the main measurements is your eGFR, mine has been 30-35 for many years, so, I'm Stage 3b, although I've been into Stage 4 at various times. Heart medication can affect the Kidney function, for the good and bad, so my bloods are checked regularly, which can determine if I can take the likes of Entresto/Dapagliflozin or not.
I would suggest asking your GP or Heart Team to explain about CKD in general.
I suspect that the majority of members on the forum have CKD, but, they just dont know it.
Take care.
Heed
fishonabike• in reply to
thank you for that helpful explanation
Hi. I have CKD too stage 3. I haven't had anything prescribed for it and the drs aren't particularly worried about it. The chronic bit is another term for long term, not that it s really bad. That frightened me too when I was told I have it. My reading for my kidneys is from 39-41 and apparently quite normal as you get older. Try not to worry - make sure you drink lots of water to help your kidneys do their work.
Best wishes, Denise
Thank you
Smitty1956• in reply to
Hi, Heedio61,
Thank you for that explanation! I am seeing my doctor in about two weeks to have a urinalysis to check on my kidney functioning. We have made changes to my medication to try to resolve the damage to my kidneys, but we shall see.
The results that I received on March 30, 2023 was for an Estimated GFR, My result was 88 mL/min/BSA. The standard range is >=60 mL/min/BSA. This is defined as mildly decreased. However, on the urinalysis, I had a high level of micro albumin/creatinine. That high level concerned my doctor and prompted her to make medication changes to the diuretic that I am taking.
That's ok good luck speak soon
Winter4519• in reply to
that reassuring currently I am stage 3 which appears to been when i was supposedly diagnosed back in 2021 and for the last 2yrs having on going swollen legs and feet and back problems seems to me they only concentrated on my heart problems as they cold not find a reason for the swollen ankles. anyway I have a new doctor and he as ordered a blood and urine test so will have the results next week. In the meanwhile My Entresto been increased to 49mg/51mg they have taken me of Dapagliflozin because of the side effects was experiencing on spironolactone 25mg and Bisoprolol Fumarate a increase to 7.5mg and water tablets.
hi😊… say hello to a fellow CKD sufferer😉… i’m currently in stage 3b which is moderate kidney function loss.. found out several years ago during a GP appt when he casually dropped it into the conversation 😂.. i said ‘what kidney disease’ 🤣.. dropped into stage 4 twice.. been advised by GP that i need to drop into stage 4 twice in a row before i can get referred to a kidney specialist.. so hey ho 😂
Sorry to hear that Hope you are well. Thank you for the information
first check that this information is correct. Loads of incorrect stuff gets into medical files. Then find out what it actually means.
yes I spoke with my GP and he told me that I was diagnosed back in 2021. I was having blood tests but it was only in relation to possible sugar levels and iron. they did mentioned that I was just below my iron levels god only knows by how much. No suggestion of Iron or vitamins mentioned
I’ve a pretty similar experience. At least I’ve had regular bloods and my GP sometimes tells me they are keeping an eye on my electrolytes. But I too had to get a copy of my medical records and was surprised to find I have kidney disease. Things haven’t got back to normal post pandemic at my GP practice. We just have to keep b*ggering on.
Yea your are right
Firstly ask your Practice how & when they came to that diagnosis.You could also search your records if you have access.I had a long fight to get a diagnosis of ckd removed from my records.I only discovered it was there when I kept getting call up for extra blood tests.Apparently it was down to a couple of blood tests 15 years before and blood tests had been fine for years after a medication change.Long fight.
I am certainly looking into this. My doctors as ordered further tests update soon
I got exactly the same shock in the same way last year and rang my GP In a panic because I knew nothing about it. Apparently the new scoring system puts it on your record automatically if your blood results reach a certain level. That level has been reduced from the earlier one so more people are finding it on their records. I then remembered being called back for a second blood test after my annual check up. Kidney scores can vary depending on medication and how much you've had to drink. Kidney function also gradually declines naturally as you get older. When I went for the second blood test I made sure I'd drunk plenty for several days beforehand and the second test was normal but the first results didn't disappear from my record and the new result didn't go on because it was below the recordable score. My GP wasn't at all worried about it; to him it was quite normal and not worth mentioning. When I rang up about it I was furious and ready to complain that I hadn't been told but it was quickly and easily explained; in fact they'd had a lot of calls about the same thing since the new system was introduced. Speak to your GP and get an explanation,
Hi, the point you make about drinking lots of fluid is a really important one. I experienced the same. 🙂
thank you i will do that
Ok thank you
Yea it was I have seen my doctor today he as explained a little about it he as requested more blood test and urine test to screen my kidneys
Glad you got some answers
my gp told me some years ago that I had CKD stage 3, I nearly fell off my chair, medics can be so blunt. My condition has remained stable since then, no treatment required. My understanding is that a blood test introduced a while back identified situations such as this, for many there is no treatment if you are stable, just continue to monitor.
Ok thank you for that
Hi I know how you feel because I found out I have severe pulmonary hypertension by reading a report also.
I think you should make an appointment and speak to your doctor about this because not knowing can affect your mental health.
I actually spoke to a BHF nurse who explained it to me, but there was something else on the report she couldn’t explain. I sent off and received some leaflets about pulmonary hypertension from the association, which explained a lot about it.
My kidneys don’t work very well either I think it’s stage 2 and it as actually improved from 40s to 50s.
I hope you’re able to contact your doctor and get some answers. All the best.
Hi, Deejay62,
I have been concerned (scared to pieces) about possibly having pulmonary hypertension. I had a HA in March 2022. I do feel better, but I still have problems with breathlessness. I have days that I struggle to breathe—like a huge cement block is sitting on my chest. It honestly feels a lot like having a panic attack from anxiety—which is why it is confusing to figure out if the problem is heart, lungs, or anxiety related.
I had a CT chest scan in May 2023 to check on a lung nodule that had been discovered during my HA in 2022. The nodule had not changed during that year do no problem there. The report did say that I had a stable enlarged heart and an enlarged diameter pulmonary artery.
I am scheduled to have an ultrasound test in August.
Can I ask how you learned that you had PAH? What test(s) did you have? Can you tell me anything else that I might need to know or check? Thank you!
I hope that you are doing well. 😊
In January I had an echocardiogram and apparently that revealed it was severe. I saw severe and felt sick, only a week after I saw a cardiologist and it wasn’t mentioned. Until I received the report from my visit.
I went back on my past notes and pulmonary hypertension was mentioned but it wasn’t as bad. And that was a few years ago. It could be severe now because of the fact my heart is failing badly and dilated cardiomyopathy as a lot to do with that. There isn’t much I can tell you about that as I don’t know anything myself, where my case is concerned. I sent off to pha uk for booklets to learn more.
You had a heart attack so I’m not the best example for you. I’ve got a lot of congenital things wrong with my heart also eg arrhythmias.
I find it difficult walking and exercising, that’s when my chest feels heavy, I struggle to breathe, and it’s mainly walking outside for some reason. I try and swim a bit, but find that hard because I struggle to breathe. In the mornings I have to clear my throat often and sometimes I can hardly swallow my tablets. I feel like I’ve got too much fluid in me to take anymore, if that makes sense. That could be a build up of fluid where the heart isn’t working.
I think you should try not to worry about any of it. I assume it’s an echo you’re going to have. That will tell the cardiologist what’s going on. I assume you’re not in heart failure so there’s no reason why you shouldn’t be ok. Also im sure having a heart attack can take it out of you.
Also get ready with your questions for the cardiologist when you next see them. You can ask as many questions regarding your heart and your pulmonary artery, as you want. Ask for the report after. And don’t skim over the report like me please read it thoroughly.
I am seeing my cardiologist in October and my EP in November so I will know more. But remember every case is different. There might be some similarities, but we’re all different. All the best.
Deejay62,
Thank you so much for your reply! Sometimes, my breathing isn’t so difficult, but other times and days, it feels like that concrete block is sitting on my chest. I do struggle some when I walk at a good pace for me, but often, I breathe some better after walking. That seems strange.
It’s funny that you mentioned having some issues with swallowing your pills. I have recently (last 2-3 months) begun noticing that I have some issues swallowing. It can be my pills, but also food, or just water. I haven’t mentioned that to anyone, but maybe I should.
I am sorry that you are having these health/breathing issues. It is an awful feeling to struggle to take a breath. Hopefully, you will get some good news in October when you see your cardiologist.
Thank you again for your patient and informative reply. I will try to collect my questions before seeing the cardiologist, and I promise to read the report carefully.
Take care! ❤️
You should definitely mention the swallowing, the breathing difficulties, the heavy chest and any other symptoms you are getting. All the best
Yes keep yourself abreast of all what is happening and report them to the consultant no matter how small or trivial it may seem to you god bless
I dont think we have the same heart problem but I have been diagnosed with heart failure with reduced fraction-dilated cardiomyopathy since 2019. at that time I had dilated left ventricule volume out put of 34%.
In 2022 I had ICD implant. In January 2023 had an Echocardiogram which showed an reduce Ie 20/25% LV indexed Volume. thus they increased my medication IE Spironolactone 25mg,Entresto 49mg/51mg and Bisoprolol 7.5mg and they are considering increasing the later 8mg.
I am now going for a NM RUBIDIUM 82 for them to get a clearer picture on the reasons for why the heart as deteriorated. There is even a discussion of replacing my ICD.
Yes I did. since the shocking news that I was at stage 3 in 2021, I could not explain why I was having back aches and swelling of my feet and ankles. No could tell me the causes. they only kept on prescribing water tablets. I have lost alot of weight but the lower back pain continues and my legs continues to be swollen worse in the summer months to the point I cannot put on shoes or slippers but still no mention of CKD
You should speak to your doctor and mention the ongoing swelling of your feet and back pain. This hot weather does make some of our feet swell. And if you haven’t already told them mention your weight loss.
Yes sen the doctor today. he as order blood test and urine test.
let us know how you get on when you receive the results. All the best
Will do
I too found out by accident that l have CKD when the g.p.. gave me some notes to take to the hospital for an unrelated problem. Apparently it is quite common if you have some form of heart disease to have CKD as the heart not working efficiently affects the kidneys. Unfortunately some heart medication is bad for the kidneys. Since covid my surgery isn't doing the necessary bloodtests needed to keep an eye on patients balance of electrolytes. All the best.
HI
Much the same happened to me I had no idea! now I really don't know what that means and I had a HA in April I feel my body is struggling and now with the very slow heartbeat I feel so anxious and depressed.
Keep strong I feel the same. going for more test feeling tired. Just be positive
Query it. My husband was told he had acute kidney failure, questioned this and found they had muddled him up with someone else.
and I wonder how many times that happens! B...disgracful.It once appeared on my medical record I had had several abortions!! Never had one or needed one!You can't take your eye off the ball.
Hi Winter4519. I also have heart failure and CKD as well as severe respiratory issues, lesions on one my adrenal glands etc. As somebody here has said, stage 3 CKD isn’t all that bad but you should get advice from your doctor. The kidney function blood tests for me tend to vary. Sometimes the results being worse than others. In time, I think you’ll come to accept ‘que sera, sera’ as the only way to keep sane! I wish you well. X
Thanks you take care
Good morning. Don't worry too much. I have had stage 3 CKD for many years. This is surprisingly common and most people don't know they have it! I also have type 1 Hepatitis. Both have been monitored with annual blood tests and occasionally the results have strayed into higher risk brackets but have always come back into range.
thank you that is very reassuring
seen the doctor today I got the impression that it was a matter of fact. says it can change. he as ordered a blood and urine test. I find it so un creditable I have been complaining about lower back pain and swollen feet and ankles and the medical professionals could not give me an answer as to the causes and just prescribe water tables which does not work in reducing the swelling but was diagnosed in 2021. hmmm.
Thank you I how all is well with you. I am having blood test and urine test done now.
Will do thanks
Hi Winter.I just came across your post and oh how it struck a chord with me.
I have Hypertrophic Cardiomyopathy, Ischemic Heart disease/3 stents and more recently diagnosed with Microvascular Dysfunction.
Ive also had a couple of TIA's.
In early 2020 my kidneys were just fine.
They'd always been monitored as I'm an insulin dependent diabetic.
At the same time, early 2020, I moved home, so had to change to a new GP surgery.
Then of course the pandemic struck.
Despite being "shielded" I still had monthly visits from the nursing team, but despite my asking, they never took my blood for testing, which was really Important, not just for the diabetes issues, but because my cardiac consultant had just started me on some new medication, which needed blood test monitoring every 4 months, as it had adverse implications for both the liver and kidneys.
Cutting a long story short. I did not get my blood tests done until mid 2022 back at the Surgery !
(Not for the lack of me constantly ringing and requesting they be done).
A few weeks later, I was left a message, telling me to book an appointment to see my GP. I duly attended the appointment. GP was faffing about and left the room to fetch something.
I took the opportunity to look at the screen which she had conveniently left open, with my most recent blood test information and voilà, there I saw it, in black n' white CKD III 😱
Being a former health professional, I knew exactly what it meant . . .
On GP's return, I confronted her. I was beyond caring at this point.
Her response and attitude was appalling, totally dismissive, blaming everything on Covid, and downplaying the significance of the diagnosis, but I could tell from her demeanour, she knew that she had f.....-up !
Like you, I was totally devastated.
As if our other medical conditions are not enough to deal with !!!
Despite this I have not been offered any support, no referral to a Nephrologist or a dietician.
I got sent for an ultrasound, only as I was having severe right-sided, lower back/trunk pain. There it was found I have cysts on both kidneys, no follow-up. . Now I have a urine incontinence issue (an infection has been ruled out) and now waiting for further tests, but I'm sure it's related to the CKD.
Sorry, this turned into a rant, I just started off wanting to tell you, you are not alone . .
How are you doing now ?
Any progress ?
Take care 🙏
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