Lost faith completely now .....

biglouis

Im sorry you had to hear this way. It can come as quite a shock and nothing can prepare you for it. I imagine you feel quite angry and distressed. I did myself.

Earlier this year I was reading my medical notes and I have been diagnosed with an advanced form of liver desease - fibrosis stage 4. That means cyrosis which is incurable and my liver is not going to recover. It seems my immune system is attacking my liver and the prognosis is 1-2 years.

Its treatable but not curable. Unfortunately the treatment produces such horrible side effects (stomach pain, weakness, depression, headaches) that I have abandoned them.

I passed my 80s birthday last month so I reckon Ive had enough and am now doing what is known as "putting my affairs in order".

biglouis, I have just seen your post and send you my heartfelt best wishes for a longer life than you imagine.
A prognosis is just a guess; I worked for a GP who was lovely but made the mistake of telling a patient how long he had to live. The Consultant the patient was under found out this and sent the GP a volcanic letter telling him that nobody can say things like that with any certainty and to not do it again! Lead your best life, eat well, take care of yourself and prove them wrong.

Thank you Foxie 48. My BP was taken 3 times at the surgery when I had my checkup. I don't normally suffer from 'white coat syndrome'. I think that I will buy a BP monitor and take my own readings then contact the surgery if necessary.

OK .... get this .... I have just seen the private cardiologist who has taken me through all my blood test results on screen from the NHS. There is nothing wrong with my kidneys at all ...... !!!
Which begs the question .... why did the GP send me that text!!??

I was prescribed a medication about 8 years ago which did help the condition it was supposed to. However I started having symptoms in my feet some 3 years ago. I did see the GP and had a blood test but no cause was found so probably arthritis. Recently my balance was affected and my feet and hands were really painful so I Googled it and found the medication causes peripheral neuropathy, is contra indicated in my age group and is not for long term use in any age group. Saw a younger GP who agreed with Google and said I should be never have been prescribed it and certainly not for 8 years. So my question is, why did nobody at the surgery know this, and why the pharmacist did not know it either. I am told the neuropathy might improve but in the meantime I am in constant pain and because my balance is affected am afraid to go out alone.

Metra if you are taking your BP correctly (sorry don't mean to sound patronising) and that's the average of three, yes, I'd contact my doctor. I'd do five days, am and pm and then if you are worried, have a chat. That's what the GP is there for, primary care, high BP is potentially serious so best to nip it in the bud asap.

I took have Stage 3 CKD but other than being advised to drink more than I really want, that's it. I have just had my annual checkup and my results are slightly worse than in the past but still Stage 3. What is bothering me is that my blood pressure is 158/85 which I thought was high but no action has been taken. Does anyone know if I should pursue this?

No excuse for the text you received, I'd be very upset to receive something like that but I wait with interest to see what happens with my GP surgery as I've just had a blood test. The results are on my NHS app and it looks as if I also have CKD, stage 2, no doubt a result of having had high blood pressure. I've recently gone on Losartan as Perindopril gave me a nasty cough but both can affect the kidneys (hence the blood test) but so can high blood pressure. It's all a balance isn't it? I haven't mentioned it to OH, he's a really kind person but has the knack of saying the wrong thing and when the previous issue raised it's ugly head his comment of "it's just one thing after another" really upset me as it made me feel a bit of a burden. However, I do think being ill makes even the strong feel vulnerable, anyway it makes me feel vulnerable but sometimes other's don't realise. Try not to worry but being angry is OK (not good for BP though).

I am well over 80, been in good health most of my life, just usual women things.. then had annual checkup, gp said I had 40% kidney failure,, those words,, I showed my upset, he said well you aren`t on dialysis and you are 88! not a good way to speak to patients, but as someone said.. they aren`t allowed the time to help us as human beings.. oh and the bp medication has contributed to the kidney problem.

Luckygirl I'm sorry you have had this news, and that it was delivered in such an inappropriate manner.
I have had stage 3 CKD for about 5 years now. There are no side effects, and apparently no treatment until you get to stage 5. They will give you 'lifestyle advice,' which basically means cutting out most foods that you enjoy and going on a three mile walk every day.
I really don't think, in these situations, it's the best option to tell the patient. All it does is create worry.
Big Louis I'm sorry to hear what you are going through. Sending hugs and love to you.

Luckygirl3, I’m very sorry you've had this bad news, but as others have said, not necessarily as bad as first thought. Good luck, but, re the ramipril, should you start coughing, come off it asap.
BigLouis, sorry to hear of your awful news too - good luck to you also

I'm sorry Luckygirl this has happened to you, it's wrong on every level. This isn't about the state of the NHS this is about people not showing enough care and compassion. I don't care how harresed someone is, they should think about the person they are dealing with.
Sending a big hug. 💐

Yes. My practice was the same. A brilliant caring Senior Partner. Then he took early retirement and left - burnt out I suspect.
So what did they do? Employ a Physician (so called) Associate (much cheaper).
The practice has gone down hill since, and I told them so!

Farzanah

I don’t believe Luckygirl will move again pascal.
She moved to a new house only a couple of years ago. My friend whose husband, a retired GP now deceased, goes to a local practice. Makes no difference, as Lucky says, most of the GPs don’t stay long anyway.

I think that is why I have such a wonderful GP practice Farzanah.. because my GP a senior partner has been there for many years and is loved by all his staff (according to the senior nurse there).. There is hardly any turnover of staff and it is easy to get an appointment there..

I do appreciate how lucky I am...

I don’t believe Luckygirl will move again pascal.
She moved to a new house only a couple of years ago. My friend whose husband, a retired GP now deceased, goes to a local practice. Makes no difference, as Lucky says, most of the GPs don’t stay long anyway.

I have CKD Stage 2 and am monitored every six to twelve months. It's irreversible, but people can help it stop getting worse. For me, it's especially important to control diabetes.

I usually find out the results of blood and urine tests before my GP. I know when I've had tests done. They're usually available later the same day and I receive an email when the result is available, so I check.

In your position Luckygirl I would move to an area that doesn't have a GP practice with a history with your late husband.. Maybe nearer one of your daughters..
Failing that I would find a consultant who is able to give all your medical records a complete overview.
At the very least I would request an interview with your clinical pharmacist at your GP practice.
I would also write a letter of complaint to the NHS complaints board.. just google it for details.. that txt was appallingly insensitive..

I too have CKD. The Dr. said it sounds worse than it is.
Had a scan 3/4 years ago and that was normal.
I am on Losartan (100mg!) and that protects the kidneys.
Don't worry.







Cts the kidneys

One of my late husband’s niece’s. who is a GP, mentioned to us 10-12 years ago that the NHS was in a mess

Luckygirl I completely agree with everything you have said. I worked in the NHS all my working life, and could cry at how it has declined over the last few years. I find there is definitely a different, and less caring attitude apparent when dealing with many health professionals.

The elderly, and we will all get old (if lucky) are portrayed politically, as a huge burden on society, and I am afraid that we, unless rich, have been turned into 3rd class citizens.

I received a similar text as you from my surgery. This is how they communicate now it seems, and it is quite disgraceful and disrespectful.

Luckygirl I’m not in the UK, but in Ireland in your situation, when you need a medic to take an overview of all your conditions and treat you accordingly, you may be able to attend a Consultant General physician privately. Could you go online and see if one such as this practices in your area?

Im sorry you had to hear this way. It can come as quite a shock and nothing can prepare you for it. I imagine you feel quite angry and distressed. I did myself.

Earlier this year I was reading my medical notes and I have been diagnosed with an advanced form of liver desease - fibrosis stage 4. That means cyrosis which is incurable and my liver is not going to recover. It seems my immune system is attacking my liver and the prognosis is 1-2 years.

Its treatable but not curable. Unfortunately the treatment produces such horrible side effects (stomach pain, weakness, depression, headaches) that I have abandoned them.

I passed my 80s birthday last month so I reckon Ive had enough and am now doing what is known as "putting my affairs in order".

Luckygirl Are you still being seen by the cardiac team at the hospital? My experience was that the GP was hopeless. She just didn't have the expertise to deal with heart problems - the nurses were even worse. They come out with things when they really don't have the specialist knowledge. At times, the hospital even had to "nudge" the GP to take action.

I would be worried about not being deemed fit enough to do the exercise part of the cardiac rehab. It would seem that the cardiologists are concerned about something. If your heart attack wasn't treated within about 90 minutes, it's likely there was some damage to the heart (was told that by the doctors at Papworth when I had my own stent after a heart attack). So you've got a history of AF, a leaky valve and had a heart attack - it's absolutely no wonder you're feeling weaker than in the past.

You need to get your strength back and that's not going to happen if you can't exercise, which is why I would be worried about not taking part in the cardiac rehab exercises. The exercises are very gentle, so if you can't do those, you shouldn't be doing anything more strenuous. Your blood pressure and heart rate would be monitored throughout. Drugs are a quick fix way of mitigating some of the problems, but long-term the solution is life style, but that's not going to happen if you're constantly stressed out and can't exercise.

You need to get an appointment with a clinical pharmacist (at your surgery). Explain clearly what's going on and the pharmacist should refer you to a doctor. Hopefully, you are still being treated by the hospital because you clearly do have some heart problems. Try contacting them and explain everything - they'll know far more about your condition than anybody on GN does.

knspol

Disgraceful way to impart such information, something is drastically wrong when serious health news is forwarded via email/text. I do hope you're able to get some sort of resolution. My late DH and I always grumbled about different consultants for different problems never getting together to discuss a patient and their meds. as a whole.
In a similar vein I found out recently when looking at 'results' on my surgery's website that I have an almost 20pc chance of a heart attack or stroke within the next 10 yrs - nobody thought to mention this to me!

Didn't anyone say that you have an almost 80% chance of not having a heart attack or a stroke?

Goodness me - you should never have been given information in this way! I’m also sorry about the stress this must have caused you.

Like you, I deplore the state the NHS is in and, quite frankly, am becoming very concerned about the path it seems to be being forced down.

I too have chronic kidney disease, but it is managed by drinking loads and loads of water. My surgery over the last few years has been rubbish at monitoring it, but just recently has improved and I am due to have a blood test next week. Fingers crossed 🤞🤞