Maximum optimisation

[Pepper23georgie]

I spoke yesterday to heart failure team who I was under. I had an ef rate of 40 past year and left ventricular dysfunction, coronary stenosis and cardiomyopathy and decompensated congestive heart failure. I saw them in may and ef rate had risen to 45. They've told me that as I don't tolerate the meds well that they have reached maximum optimisation possible and no more them as a team can do for me so discharged back to gp. They've said won't even see consultant again. This seems peculiar to me that the consultant isn't keeping regular appointments on a 47 year old with these issues. I can't work out if it's a positivevor if they just sort of saying oh well it is what it is nothing we can do lol

[10gingercats]

You can complain to PALS about your treatment and if that does not help I would do everything possible to revert the decison made by cardios. Sounds arbiatary to me and without solid foundation in one so young. You are going to have to fight to reinstate yourself.

[Pepper23georgie in reply to 10gingercats]

Thankyou I appreciate your advice x

[Hidden]

hi this may be how the NHS a works - once you are healed or they can do no more then discharged back to and under the care of GP until such time symptoms change / increase or something new happens and the process starts afresh - GP makes referral!

Some people here do get yearly checks / echos but I guess dependent on condition.

Feels harsh as we can’t tell how things develop inside us if there is no outward indication of deterioration or other changes. But then that could be seen as a positive - we plateau if not get better!

Unfortunately it may be a case of self monitoring your health and if anything changes or your not satisfied with what they have done / tried so far then it’s back to GP for them to refer you to a consultant.

Good luck!

[Sim22 in reply to Hidden]

My EF was originally 35% but has improved to over 45% , so your % sounds positive. What medication are you on and do you have a pacemaker

[Pepper23georgie in reply to Sim22]

No pacemaker and currently no drugs as side effects were knocking me too much

[Sim22 in reply to Pepper23georgie]

How are you functioning, can you walk without stopping, do you get any chest pain.You need to speak to your GP ASAP as there are new medications to improve your heart functioning. I would certainly want access to a cardiology nurse for advice and support.

For a personal point of view medication can take quite a time to settle but these in the long term improve life outcomes.

Was there any conversation about anticoagulant therapy such as rivaroxaban?

[Pepper23georgie in reply to Sim22]

No not functioning too well, chest pain, breathlessness , all over pain and horrendous sweats and 3kg weight loss in last 2 weeks. Seen gp and they are now going to see me fortnightly from now on to keep an eye on things as not only heart issues I have, I have various other problems too and all just exacerbating each other I think.

[JeremiahObadiah]

This is not an area of which I have any personal knowledge but it would seem sensible for you to at least request an appointment to ask your GP what happens next and with whom and what progress you can expect to make and what happens in terms of care….Presumably your GP can refer you to any specialist unit available for maybe annual monitoring, over view of any future medication etc.

Best wishes

[Pepper23georgie]

Thankyou for all replies. I spoke with gp yesterday and they are going to see me fortnightly from now on cause of my heart and other conditions and they are referring me for alternative therapies to try and help with some if the symptoms.

[Hidden in reply to Pepper23georgie]

That’s really positive that your GP will keep a regular check on you and hopefully helps you feel supported. 👍

[Deejay62]

Hi I have dilated cardiomyopathy and heart failure my EF is 23%. When it was 43% I was discharged to my Gp with mainly blood pressure meds and ace inhibitor. I just continued my life. My blood pressure and weight was monitored by Gp once a year. But I was under EP for arrhythmia until after my ablation.

When my arrhythmias started up again I had 24hr monitor and my Gp referred me back to EP where I had pace and ablate.

After I had my pacemaker fitted I saw the HF nurse once a year and during that visit I might saw the HF cardiologist, because my EF had dropped and my cardiomyopathy got worse. When it fell to 10% I had a new device with defibrillator fitted.

Since the new device I don’t even see a nurse I just see cardiologist once a year. My gp referred me to the local HF nurses in the area when my fluid retention got bad. They just monitored my weight and blood pressure, then after a while discharged me as they couldn’t do anything more for me, but they gave me their number if I wanted to see them again.

This year I’ve seen the heart failure cardiologist twice and I’m due to see them again next month.

If they’ve done all they can medicine wise and there’s no other issues they do refer you back to Gp. If you have other issues your Gp should refer you back.

This is my experience, I don’t know about others. I’m comforted when I don’t need to see them as I believe everything is ok. At the moment I’m not. But your Gp should still be there for you.

All the best