New to this site

[Les29]

About a year ago I was diagnosed with heart failure which came as quite a shock, especially as this followed straight on from losing my mum the week before! Having had all the various tests I was told that I had a problem with the left ventrical having an abnormal beat. So now I am on the list for a pacemaker, unfortunately none of the medics can tell me how long I will have to wait before it is fitted,this is frustrating. Some days I feel ok other days I just don't want to do anything,my husband is brilliant but constantly and rightly so, trying to encourage me to walk more and build my stamina up,not always easy when breathing is hard.

[skid112 Heart Star]

Hi Les,

there is a fantastic thread here, healthunlocked.com/bhf/post...

welcome to the forum, you are not alone I will return shortly and offer up some more threads to look at, our lovely members will also be along to offer their experiences and advice

take care

Mark

[laura_dropstitch Heart Star]

Hi Les and welcome. I have heart failure too, was diagnosed six years ago. I can totally relate to the frustration of knowing you need to exercise for the good of your heart while feeling like your heart is making exercise TOO HARD. It's great you have an encouraging husband, even if he is a bit annoying! I've increased my activity levels gradually over the last couple of years. It is hard work (mentally as well as physically) but it does get easier. Do you have a Fitbit? I find mine helps me to stay motivated and we have a Fitbit group set up for members of this forum so we can cheer each other on. You'd be very welcome to join.

I have a pacemaker (a CRT-D) and I think it did make it easier to stay active. Hope you get a date for yours soon.

Feel free to fire any questions my way. All the best x

[Les29 in reply to laura_dropstitch]

Thank you Laura for your encouragement, I use an app on my phone called map my walk it's good tells me how far I've walked,calories steps etc, trouble is I find walking boring, especially if we walk so far then turn around and walk back again. Haven't yet found a round trip that's easy for me to build my stamina but will keep trying x

[laura_dropstitch Heart Star in reply to Les29]

Yeah, I know what you mean. I try to walk to places I need to get to anyway and take a longer route if possible, but I'm lucky to live in a city (Glasgow) that is full of parks and rivers and places you want to get to. I found swimming (at a very slow pace with head above the water) a really good initial exercise. Also good to add fun stuff to the mix. I discovered I enjoyed hula hooping and tap dancing, both surprisingly manageable. I've never been a sporty/physical person so I've needed to experiment to find activities that work for me. Good luck x

[Twobells in reply to Les29]

Hi Les, there are local gyms that do health referrals via your GP. Ask next time you see doctor, sometimes exercising in a gym environment helps.

[laura_dropstitch Heart Star in reply to Twobells]

This sounds like a good idea, but if you are interested, maybe act sooner rather than later. I tried to get my GP to refer me to my local gym and it turned out they wouldn't accept referrals for patients with defibrillators!

[Les29 in reply to laura_dropstitch]

Just a quick question how long were you waiting for your pacemaker,we are based in Cornwall although spend a lot of time in Spain?x

[laura_dropstitch Heart Star in reply to Les29]

From what I can remember, it moved fairly quickly. I had mine fitted in March and it would have been suggested previous November at the earliest, more likely January. So within 2-4 months? That said, my device includes a defibrillator and I get the feeling they might fit those a bit quicker, since they've effectively decided you are at risk of sudden cardiac death if they're giving you that. Hidden

[laura_dropstitch Heart Star in reply to laura_dropstitch]

Sorry, hit send too soon. Was just going to ask Hidden what timescale she was given recently?

[Hidden in reply to laura_dropstitch]

Hi I have not heard as yet, but I think it will be soon as I told him I was going to Spain for new year and he said it should be fine to go! So I really hope it is very soon in case something does happen, that would make the wait about 6 weeks, I will let you know when I get appointment, I am going to the jubilee next week, I will mention it if not heard anything xx

[Les29 in reply to laura_dropstitch]

Mine will have a defibrillator as well, Cornwall is apparently one of the worst places for a waiting list x

[laura_dropstitch Heart Star in reply to Les29]

Not sure how much it varies from place to place. Hopefully you'll get a better idea of timescale soon, it's no fun when you can't make plans x

[Twobells in reply to Les29]

You can ask for shorter waiting list from other hospitals, not sure if you may be able to do this?

[skid112 Heart Star]

some more threads to look at healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

[Jill222]

hi,

I am fairly new to this site as well, and cannot tell you how much peoples comments have meant to me and made me feel better. I also have a defibrillator fitted, and have had it 7 years. 2 weeks ago I had my 3rd new one due to low battery. I had mine fitted quick as I was taken to hospital as an emergency. I have just found out I am now 100% pacing, which basically means my pacemaker does all the work for me. I can tell you I have been through all sorts of emotional thoughts. Whilst I feel fairly well and have returned to full time work, I am still scared to do too much etc. I have been for a couple of walks and find after I feel better, more as a sense of achievement than anything else. I think your husband is correct, keep active and try to keep walking, how about taking some music with you or an audible book, to keep you occupied.

I hope you get the treatment you need as quick as possible

Take Care. Jill.

[Les29 in reply to Jill222]

Thank you Jill, it is quite frustrating knowing I need the pacemaker fitted but not knowing When! We retired 3 years ago and I was looking forward to being very active, still going to travel as much as we can at present we are in Spain planning trips up into France and beyond next year! I will try to continue to walk but do find it boring! I am hoping my old bike will be done up soon, then I can do some rides along the very flat paths on the coast. I am so glad we found this site everyone is so encouraging x

[Hidden]

Hiya I was diagnosed last year with heart failure, and I am on the waiting list for an icd but as yet I haven't got an appointment, I mentioned I was going to Spain for new year and my cardiologist said it would be fine to go, so I am on the assumption It will be very soon, that would make the wait about 6 weeks, Its a Glasgow hospital I attend, as for exercise I am awful, no motivation at all and as I live alone no one to nag me, I just jump in the car, I really have to do something, but I just think about what! and do nothing hmm 🤔 char x

[Prada47]

Hello I am another one with Heart Failure/Wonky Heart just wondering how they come to the conclusion to fit an CRT device. A letter I saw from the Cardiologist to the GP said

" His QRS duration is a little over 120ms but I would not consider him a good candidate for a CRT device based on this, but that might change in the future should the QRS widen further "

I think on the NICE guideline anything around 120ms should be considered for a CRT device ???

Anyone know the criteria for these devices and has anyone had an increase in their QRS duration I never had a chance to ask the Cardiologist what it all meant ( only saw it in the letter ) !!!

I know on the ecg it showed a Left Branch Block pattern.

Regards

Frank W

[Heartlady1]

Hi Les welcome to the site. I have just had a CRTD fitted.... I was told I would have one in April and that it would be around 2 - 4 months wait. However that timescale only started when the icd team had received the letter from my cardiologist and I had been registered on their system. This was May. I chased this team up and they explained they normally only tell you about 4 weeks before so as to avoid any postponement. The issue they havevis that they have to deal with emergency fittings which of course take priority.

They gave me a date of beg of August so in total 4 months from original diagnosis. However just prior to op I came down with a cold .... And so they could not operate. I was then rebooked for early Sept.

I would suggest you call your icd appts team to ask what are the lead times for this type of op in your area. Everyone was very helpful when I did this. And expect to only be given around 4 weeks notice of your op date.

In regards to fitness.... I was struggling with breathing and feeling fatigued before my op so i only did little walks However I made other health changes to keep me well. I stopped drinking alcohol... I ate healthily .... mainly fish and chicken vegetables or salad. Was told to reduce caffeine so only 3 cups of tea a day... And no coffee ( I had bought decaff... only to be told by my GP that this is even worse than caffeine for heart ) so I drink lots of cordial.

All of these health changes made me feel good.... helped me keep well... And I lost nearly a stone too. The doctors were very happy when I went for my op with my life changes which I do feel has also helped my recovery.

Since my op I do have much more energy and don't get out of breath... And I am now getting out and definitely the exercise levels have increased... going for walks etc. Hopefully this helps.... And please don't be afraid to chase up your local hospital for timescales.

All the very best Karen x

[Les29 in reply to Heartlady1]

Hi Karen, thank you for your input I'm seeing my cardiac nurse soon and she said she would see if she could find out a time scale. I have more or less stopped drinking alcohol,very occasional glass with a meal. I try to eat healthily,no processed food lots of veg and fruit etc. We are in Spain a lot of the time so the sun does help. I think the hardest is the lack of energy so glad to see on here how a pacemaker has improved energy levels. Cornwall has a long waiting list mainly due to few heart specialists being employed, not sure if any other parts of the country suffer in the same way.x