Hello

[Pepper23georgie]

Hi, I'm 47 years old. I was told about 5 years ago I had early congestive heart failure but was just given diuretics as wasn't too bad except fluid retention at that point. Since then found out on new years eve 22 when I was admitted to ccu with a heart rate if 289 that I have congestive heart failure with left ventricular dysfunction, reduced ejection fraction between 40 and 45 %, cardiomyopathy, coronary artery disease with no blockages and left aorta slightly enlarged now. Also heart not relaxing properly between beats. Then August last year had a heart attack. I was under heart failure team but all meds knocked my blood pressure through the floor so after a year in decompensated heart failure and specialist discharging back to gp as said they have reached maximum optimisation with treatment as I can't tolerate the meds. I know decided to stop all heart meds, I know that will probably shorten survival but I also have query multiple sclerosis and I have had a growth in my bladder for over a year but they can't remove as can't have anasthetic due to heart condition. My husband and i know it could be a few years, months or anytime before the end comes but we just want to enjoy life again. However we are both finding it mentally hard. My husband says it is breaking his heart watching me able to do less and less and he now has to do all the driving and we live in a very rural area. I am getting stressed and frustrated as am increasing unable to do normal daily tasks or spend days out as I get too tired and too much pain. We were both hoping on here we could get support as both feel very little support we get. Gp referred me to palliative team for support with a life limiting illness, pain and emotional support but their consultant withdrew it saying in their opinion cardiologist might be able to do more. Cardiologist since said we are as good as it will get but I can't be bothered asking for re referral to palliative. I am in lots of all over pain these days and gp just having to increase pain meds regularly. My memory is shocking now and I lose my balance, fall and drop things often. I get very little sleep due to pain. I had been hoping there was a support group near us but there isn't so I'm hoping being on here may help me and my husband , thankyou for reading, best wishes to you all

[RufusScamp]

This sounds so hard for someone as young as you. I wish I could offer more than my best wishes. A good diet, and gentle exercise might help, but ask your cardio team about the best way forward.

An EF of 40% is not too bad. Mine was 20% before treatment, and 50% is good, which they never told me!

[Pepper23georgie in reply to RufusScamp]

Thankyou

[KBMosia in reply to Pepper23georgie]

I am so sorry to hear your predicament at such a young age. I would like to suggest you familiarise yourself with a doctor called DR GREGOR. His story is that his grandmother was 65 with end stage heart failure , was sent home in a wheelchair , as her drs told her there was nothing more they could do for her ...... After changing her diet and lifestyle she lived for 30 years. This is a shortened version. Dr Gregor has written a book -How not to die -which is full of very useful information , I bought this book when I wanted to do something about my high blood pressure and it has helped me to come of my blood pressure medication. Dr Gregor also runs a nonprofit website -Nutritionfacts.org- which you could check as well for more information . I wish you all the best and hope that things get better for you

[Pepper23georgie in reply to KBMosia]

Many thanks, i will most certainly look into him and his work, I hope you are keeping well

[devonian186]

You are still very young. It is difficult to know what is causing you the most problems, whether any of them are related and which should be tackled first.

Your anxiety must be through the roof which will only make things worse. I wonder if it is worth starting again from scratch by consulting someone privately?

Obviously I don't know your financial position but I think an objective expert second opinion might enable you to see a way forward and encourage a more positive attitude, which is half the battle. Best of luck.

[Pepper23georgie in reply to devonian186]

Thankyou, I think often that is what is needed and as you know these days it's very hard to get any decent appointment time where you fan properly sit and discuss things with the doctor, it's like a conveyor belt these days, in, deal with main thing then out. I even got told in A&s once when I had a couple of issues going on that oh we are sorry but we can only deal with one problem. I felt like saying oh I will tell Mt body next time it can only have one issue at a time. I know mist nhs staff lovely and they are struggling just as much as the patients with the NHS situation but I have completely lost faith in them, that's why I tend to just not bother going anymore and would rather just sit at home and work through pain or other symptoms than go to a hospital where the system is failing. Many thanks for your reply and advice

[JessicaRed]

So sorry to read yr very sad story, sending you a virtual hug of support 🌈

[Pepper23georgie in reply to JessicaRed]

Thankyou so much. Hope you are doing ok, lovely to meet you, x😊