Heart transplant v coping with A FIB

[Magicmog12]

I have spoke to everyone before here; after surgery I was very down as most of us are and was trying to find someone I could talk to as my husband isn't very good at this. I did manage to find someone I could speak with, my health overall went up a step and I was able to do a bit more. I started a phased return to work. One particular day I decided to pick some blackberries from a local spot. My legs were getting cut[Im on apixaban] and so I decided to stop my arms were bruising and all of a sudden went more tired than normal. Later I ended up at hospital feeling quite unwell with my heart racing. I was given I/V antibiotic for a blood infection and my medication altered to cope with the rise in heart rate. My consultant came we dicussed what had happened then he dropped a bombshell; he wanted me to consider a transplant and discuss the matter with a transplant team at a hospital lnot too far from me. I panicked. I said I didn't have the mental standing anymore for something like this prior to surgery I was having loads of tests for an infection none of my doctors could could get to the bottom of; then I was taken in inJan of this year with a mild attack and was told somehow the infection had damaged the valves hence the surgery in April of this year. Recovery went well; At this time my 6 month check was due and my surgeon was pleased and said how well I looked I bought up the subject that had been spoken about and he said I just wouldn't be considered as heart patients go I was quite well; my consultant did say I would be on the edge of any dicision made [Im 65] so why put me through this? During the rest of my time on the ward I was going for quiet weeps in the ladies . I read up on the matter and its a no. my consultant said my kid neys were working below par due to the diuretics and that my heart muscle was slightly poor. My GP who has a special interest in heart matters and is renowned locally says the af can be controlled I will have to lessen my activities and seemed surprised as some other medics have that this suggestion was raised. whats everyones thoughts on this??

[Jalia]

Oh dear.....poor you. I'm so sorry. What alot you have to contend with !

I can't help thinking that the BHF site might be the most helpful for you , although someone may be able to offer some words of advice here.

Best wishes

J

[Paulbounce]

Hello Mog.

You are certainly going through it.

There's no way I can give an opinion - how to move forward must be your personal decision of course.

You wrote

"My consultant came we dicussed what had happened then he dropped a bombshell; he wanted me to consider a transplant and discuss the matter with a transplant team at a hospital lnot too far from me"

All I'll add is that maybe it's a good idea just to discuss the matter so you are able to make a more informed decision. You don't have to give a yeah or nah but at least you'll know, or have more understanding, of the options available to you. If it were me I would see them just to have more information about choices to consider. I would book an appointment to get the 'lay of the land'.

For what it's worth that's my take - sorry it won't help much. Whatever you decide I hope things work out well for you. Good luck - I'm sure you'll make the right decision but make sure it's an informed one.

Best,

Paul

[pottypete1]

Hard to believe how quickly your life changed from having a day picking blackberries to the suggestion that you should consider a transplant. How very horrible and stressful for you.

I hope your rhythm issues will now be under control and you can hopefully put that awful experience behind you.

Pete

[bassets]

Sorry to hear you have such a lot of stress and worry. I hope everything eases and works out for you. Best wishes, H

[Janith]

I would have slapped his face and walked out! Don’t dare to consider such an extreme measure! Stay well.

[Ianc2]

Quite an astounding and thought provoking story. It is always good to get a second or a third opinion , and a copy of your notes. You are quite right to be very wary of this suggestion.

What sort of activities did you GP say you should lessen? Most of the Medics I have seen advocate reasonable exercise to strengthen or maintain muscle along with the usual lifestyle changes.

[Magicmog12 in reply to Ianc2]

Sorry must have worded that wrong I decided to shorten my activities when talking to the cardiac nurses about this and they agreed .At the mo im on quite a high dose of Bisoprolol and Amiodarone which is making me very breathless and tired but my GP says he wants to keep me on this until he can see my HR coming down exercise is a bit of a challenge at present but Im trying even if its only autumn clear up jobs in the garden. Im becoming frustrated and depressed because before all this I was out for approx. 2 hrs or more a day on my days off walking the local hills nowhere that flat round here then come back and be doing something in the garden and other jobs. yesterday I went into a local market town with a friend and even walking on the flat was an effort

[Ianc2]

Bisoprolol is well known for having tiring side effects. After your valve surgery did the hospital offer you any rehab program to help you recover your fitness and strength ? This is a vital part of the recovery process and gets you exercising and moving, very gently to start with.

stage 1, starting program of easy circuit training involving straight forward exercises ,

stage 2, a slightly increased program of a little bit more challenging exercise. All very light hearted and done to music, popsicles and petticoats in my case, eventually progressing to 20 minutes on the rowing machine, 20 minutes walking on the treadmill, and 20 minutes on the bike, after about 6 months .

It may be worth checking with the hospital that did your valves about what is happening about rehab . Because of covid a lot of activities seem to have gone overboard, but some hospitals have gone on line and put their rehab exercises up for patients to follow.

With regard to your walking I would suggest a daily mile along a flat path, ten minutes out, ten minutes back, done every day if you can manage it. Get yourself a Fitbit or apple watch or similar, track your heart rate as you go and have some evidence of your resting heart to show your doctor. As your muscle tone improves and you start to get fitter you can extend the distance if you wish. Be prepared to spend a few months on this so a good waterproof will be useful

Usually the cardiologist is the one who prescribes the drugs but if your GP has taken on this role ask him for an alternative to the Bisoprolol. It is often not tolerated very well.

[32ford]

a f is bit hard to deal with but nothing compared to transplant, ive had both and if you can stay as healthy as possible avoid a transplant, its a long hard journey.