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[KAJW]

Hi I'm 53 and was diagnosed last month with heart failure / dilated cardiomyopathy after visiting a and e with breathlessness. Spent a week in hospital, EF of 18, lots of tests ongoing at present and feeling better now on medication although still exhausted after doing very little. Due to see the cardiologist next week who is suggesting a CRT-D. Emotionally very up and down at present but I imagine that's to be expected! Any info about the pacemaker etc very gratefully received. Thanks

[Ktomoph_]

Hi KAJW

it is indeed an emotional place to be in both before and after diagnosis of HF.

I am so pleased you are feeling better than before now that you are on medication, but do make allowances for how exhausted you are feeling even doing nothing as your heart is working overtime compared to everyone else's.

Hope your meeting with the cardiologist goes really well and puts your mind at rest.

I too was diagnosed this year with HF and an EF reading of 13%. I have had the CRT-D device fitted at the end of August - out of hospital the day after - and everything went really well, so much so that I was travelling across England 6 days later!

I am so in awe of this device, as everyone who knows me will tell you!

Stay positive KAJW. And please take advantage of the fact you 'have to' relax and do nothing.

[KAJW in reply to Ktomoph_]

Thank you so much for your kind supportive words - I am so pleased the CRT-D device has helped you so much - I already feel more positive about the prospect. It is wonderful how well you recovered from surgery and how quickly you were able to travel. I am hoping the device will help me return to a more normal life and get back to work again.

[Ktomoph_ in reply to KAJW]

Hi KAJW....I am just so impressed with the whole thing!

The fitting of the device was just so quick and painless as was coming round afterwards. I had expected at least bad discomfort and at most pain. But not one bit of it.

You know that something is there and the discomfort I can only describe as when you have bumped into something.

The hardest part was having to lay on my back to sleep for first couple of days at least. As a fairly restless sleeper I managed it only by putting pillows as bolsters each side of me!

It was also very difficult, as a fairly independent person, to not lift anything heavy for a good month - wonderful and willing people when I travelled. Then having 12 weeks of not lifting my left arm above my head.

The other thing that is taking a little while to become a regular thought is the holding my mobile phone away from left side, not standing in front of microwave, not idling by security entrances to supermarkets and not standing next to speakers, not standing over induction hobs. Think its because I have done all this for years. I put a few signs up at home to help get it into my psyche. And it has helped.

I am excited for you and wish you the same excellent experience!

[Hidden in reply to Ktomoph_]

Inspiring stuff.

I wonder if you know what your EF is now. Has CRT allowed it to recover?

Regards

Ogilvie

[Ktomoph_ in reply to Hidden]

Hi Ogilvie....at time of device fitting my EF was still only 19%, basically good enough to make it safe-ish to undergo the fitting of it.

I am approaching the 12 week check, so may know more then.

But quality of life has improved so much - still very impressed!

[KAJW]

Wow I am so inspired that it has been such a positive experience for you, even including the fitting which was worrying me a little!

I get the bit about sleeping - I tend to toss and turn a lot now and so will def try using pillows to get comfy. There also seem to be lots of things to think about - being left handed may not help at first!

I feel blessed to have such a great cardiology team who have offered me this chance and now hearing your how fantastic this has been for you, I feel like I'm about to get a second chance. Things appeared pretty hopeless just a few weeks ago when I kept being told how 'poor' my heart was hopefully better times are ahead.

[Heartlady1]

Hi Kajw.... I fully understand your worries and nervousness of having a device fitted. Which is natural and Normal.... but truly this device is a godsend and I am sure will improve your quality of life almost from the time it is put in. For me it also stopped me being anxious and worried about my heart all the time.

I had mine fitted 5 weeks ago and thus far all going well. I too was only in hospital one night. For the first 2 weeks I was told not to lift my arm too high but it's important to move your arm and shoulder at this time. After this time I was able to go back tocwork ( although only part time) and yes it did take it out of me at first. Do see how you feel before attempting this. For some it's around 6 weeks before a return to work. My advice would be listen to your body.... the thing is from a heart perspective you should be feeling much better. This makes you want to do more things quickly.... but do also be aware that you have just had an op so it's about feeling great but just take it easy at first to help the wound to heal.

Psychologically I feel so much better knowing that my heart is protected...it won't deteriorate further.. . The device helps me feel so much better.... And it can help your heart to repair to a degree too. 😁

On another note you mentioned you were left handed...in which case they should go in on the right side so for you it will be your right arm that you can't lift. Just be sure to mention you are left handed and they will accommodate this too.

What I am finding already is that I am booking up things for the future such as theatre .... weekend away.... I have even booked a cruise for next year. It's great to be able to plan things again without the worry.

I hope all goes well with the doctor appointment and do let us know if you have any questions or concerns following your next appt. But go for it... the device will change your life for the better 😁

[KAJW]

Thank you so much for your reply - it is invaluable to hear how these devices are changing lives. I am so glad you feel so well now and are able to make holiday plans. I have a family holiday to Florida booked for next May (already booked before I was diagnosed) and you have given me hope that I will still be able to travel (although I know the insurance will be expensive!)

I had no idea it was possible to fit the device on the right so really appreciate that tip. These devices sound amazing - i feel very grateful for the fantastic care I have received and for being given this opportunity.

[Ethel13]

Good Luck,

Dory ❤️💕❣️

[KAJW in reply to Ethel13]

Thank you ❤️