I have HCM. Over Xmas I got Shingles. Since then I have been suffering poor sleep, lack of energy, nausea and I am retaining fluid.
Increasing my diuretics is having limited effect on my swollen ankles.
I have to get blood tests and Echo but Doc thinks my heart may not be pumping as well as it should and my medication may need changed.
Anyone else had drugs that pump up the heart?
I found exercise helped when I retained fluid...around heart and in lungs. If you cannot get out then even chair exercises can help and/marching on the spot.
Thanks for your reply. I suspect I may be beyond the benefits of exercise. I am out of puff just going to the toilet.
Hi What meds are you on now, it may help someone point you in the right direction !
Regards
Entresto (can only tolerate minimum dose)
Spiro
Dapa
Edoxaban
Nebivolol
Bendro and Bumetanide
Hi, I was also diagnosed with poor heart performance about 2 years ago, the consultant put me on Entresto, which had fantastic results, my heart is now performing well.
Entresto is a magic drug.
Looks like a pretty standard cocktail you are on + the Curry and Chips are sure to be helping !! When you have an Echocardiogram is will really tell how your Heart is performing in terms of the percentage you are pumping out on each beat.
Wishing you well
Hi I have HCM and issues with the pump the meds I have is Entresto, spironolactone, bisoprolol, feurosomide, everyone is different I have issues with electrics and have a ICD now with all these things has really helped me! I am no dr so speak to your dr and tell them everything goodluck!
I have DCM and was out of breath just walking into another room in my house, let alone up the stairs. I would have to take a break whilst having a quick shower and I carried a hell of a lot of fluid in my lower body. Almost 2 years on and that's thankfully a thing of the past. I'm back weight training in the gym and running around after my 10 year old daughter.
I'm on the top doses of:
Entresto
Dapagliflozin
Bisoprolol
Spironolactone
So glad it worked out for you.
Thank you so much. Wishing you all the best and that the meds kick in soon. The hesrt nurses did warn me at the beginning of my journey that it can take months or years for them to improve your health, but please just stick with it.
Hi Pouchielou1972, out of interest, could you tell me what the top level dose of these medicines are? I'm on the same meds with EF of 39% but I think I'm only on minimum dose due to low BP. I had heart attack last August and due to see cardiologist in 2 weeks so keen to have as much info as possible. Thanks in advance
Hi Haybel ...No problem at all. My EF was 10% which is extremely severe. My Bisoprolol was reduced slightly from 10mg to 7.5mg as it was making my heart rate too low and makkng me absolutely exhausted, but I feel like my normal self on 7.5mg. I'm on the following:-
Bisoprolol 5mg x1 AM & 2.5mg x1 PM, Entresto 97/103mg 2 times a day, Dapagliflozin 10mg once a day, Spironolactone 25mg once a day, Furosemide 40mg (as and when needed)
Many thanks for this, it’s really useful. I’m on 1.25mg Bisoprolol, dapafliglozin 10mg, ticagrelor 90mg am & pm, Entresto 24/26mg am & pm, atorvastatin 80mg and spironolactane 25mg. With low heart rate and low BP it will be interesting to see if they can increase any of these meds.
Thanks again
That's the good thing with being on a lower dosage is that there is scope to increase if they need to. My fear is that there isn't for me with being on the highest doses. But with you being on such a lowdown of Bisoprolol, you wouldn't want to increase that if you have a low heart rate, as that is the med that causes it.
Hi yes I found out through echocadiogram that I have severe Heart Failure (20 -25% function,) I take bisoprolol, Entresto, Dapagliflzin, Atorvastatin, Spironolactone and Asprin. They don't start everything straight away they add and increase tablets and dosage over time. My legs were so ballooned they throbbed. But on 4 months echocadiogram my heart function has increased to 32%.
No my legs are normal size and my breathing is normal. You need to limited fluid intake to 1.5 litres a day
Hope this helps
Currently, I am restricted to 2.5 litres and I struggle with that!
Hi sorry to hear this. Connect with me on linked in (Chris Jones Bright HR) and read my post re Mavacamten. I can’t post a link as it won’t let me
Mavacamten is a new drug to treat OHCM. I dont think its available for those of us with HCM.
what is OHCM?
Ooops, got my letters mixed up. Should read Hypertrophic Obstructive Cardiomyopathy
any Ida’s what the results of echo was? Been told 35% plus for ha sufferers
I have been waiting for an Echo for over a year now. Scotland's NHS is not the best!
you might find that the Cardiomyopathy UK site has some helpful info for you - e.g. explaining HOCM and it's effects and support aabout living with this condition
Hi I hope you begin to improve with diuretics. I had an infusion of diuretics through a cannula to get rid of the fluid and they had to monitor me before releasing me because my blood pressure dropped a lot. After urinating many times I felt the fluid lift from my lungs and stomach. That helped me to improve along with a medication change. I was slowly put on a heart failure cocktail of drugs, replacing the ones I was on, in stages.
I don’t know what drugs you’re on with HCM, I have Dilated cardiomyopathy.
I’m sure they will find a way to improve your situation. All the best.
Thanks for that. I just wish these things would be picked up before people ended up in hospital.
To be honest I was doing ok very active on diuretics and other meds I had a CRT-P fitted and I had regular 6 monthly checks with HF nurse and annual check with cardiologist, then I was put on a diabetic tablet by my Gp, because a blood test showed I had become a borderline diabetic. I reacted to that and became ill. These things happen.
With underlying illnesses when we become ill it can lead to more problems.
That sounds familiar. I was OK until I had Shingles at Christmas.
End stage heart failure
Slow heart rate
heart
Heart Palpitations (no racing heart) and Bisoprolol
