Heart failure

[Jessiebrown]

Hi all,I hope you are all as well as can be.

I have posted before how I feel after ohs 2.5 years ago, and still feeling out of breath and not well,I thought after I had MVR ,AORTA replacement and ascending AORTA replacement I would be better,I was told by my surgeon at papworth that I would be able to breath better straight away,it never has got better everyone said give it time,well I think 2.5 years is long enough. I have had so many tests and they all come back good,I had a registrar instead of my usual cardiologist phone call and said I needed a special blood test to see how my HF was doing three weeks ago and I was to have a 24 hr monitor and an echocardiogram, so far I haven’t heard anything from the hospital,I went to my gp yesterday for something else and asked if he could tell me how the blood test was,he said that it showed my HF had got worse and if I hadn’t heard from the hospital in 2weeks to let him know, I have said I haven’t felt well ever since my surgery and my breathing has gradually got worse but I can’t get answers and feel COVID hasn’t made things better and feel I’ve been neglected like a lot of other people. In the last couple of weeks things seem to be getting worse I haven’t got chest pain but it feels tight and uncomfortable and a couple of times my heart has really raced,I have nearly called 111 but am worried about leaving my husband as he had a small HA in February, also I think when I got to hospital everything would be normal as usual!! Anyone got any ideas what could be making my HF worse ,I take 5mg bisoprolol and bumetanide for water retention .even my gp says the only way to get things sorted and answers is to call am ambulance! I am seriously thinking of going privately to see a surgeon at papworth to see what’s going on,I am just fed up trying to get answers, sorry for the long post but I know you are all so knowledgeable I only wish I had found this site before I had my surgery love to you all x

[francesw47]

Oh how frustrating for you. Like you I had OHS and did not recover well. GP asked for BNP bloods to be done and echocardiogram - both of which showed HF. Treatment had only just commenced when COVID hit us ..... long story short I now have support of different team and have been started on different drugs to improve heart function. Which has improved things considerably. If you talk to one of the BHF nurses (telephone number on website) they can talk to you about what is happening - or contact Pumping Marvellous, who have been very helpful and supportive. Your GP sounds like he is onside as well, which is important. If / when you get to speak to someone at hospital ask for a referral to Heart Failure team?? My experience of the HF nurses is that they are really on the ball and know what they are talking about.......

Let us know what is happening to you.....and do keep pushing. Sometimes not knowing is worse than knowing.

Frances

[Jessiebrown in reply to francesw47]

Thank you for your reply,when I had my ohs I thought I would be well and could get on with my life but that's not happened, I thought my hf was due to my faulty valves and aneurism, I will do as you suggest and phone the hf nurses, my gp is super but I can't always get him, i have only just had a BNPtest I have had every other test which have come back normal , why haven't I had one before so they could give me the right medication before now! Well let's see what happens next, thanks again for your reply, keep well x

[winniebago]

Had a shock diagnosis in January that I had severe heart failure - left chamber performing at 35 percent only. Went private since COVID seemed to have almost halted the NHS. Following an angiogram - all clear - Top consultant put me on blood thinner, 1.25 beta blocker and 3 x 4 mg of Candersartan (BP tablets). Paid for another cardiogram in May - my request- and was delighted to learn that I have moved from severe - just! - to moderate HF with a new reading of 40 percent. Think current NHS service depends on area but I’m in West Yorkshire and it’s pretty hopeless speed wise. Have spent just over £4,000 so far. Would rather have made this progress than hang on to rainy day money. Good luck!

[SLK-14 in reply to winniebago]

Hi WinniebagoI was diagnosed with HF in March, couldn't believe what I was being told. Scared was an understatement still trying to get my head around it. My Ejection Fraction was 25, my Consultant put me in Nebivolol, Perprindopol and Spironolactone. After my MRI Scan it had increased to 38 not out of the woods yet, but more positive. Hope this helps...

[winniebago in reply to SLK-14]

Thank you for your comments. Anything that gives a little hope ….. 🤞

[winniebago in reply to SLK-14]

Thank you so much for your encouraging words!