Unexpected side effect of weight loss -- just venting

So, I saw the Heart Transplant team last September and they said I pass all their tests for progressing to the next stage of assessment except for my BMI (and eliminating amyloidosis as a cause of the problem). I needed to lose 6kg (13lb) and be signed off by the National Amyloidosis Centre [NAC] before they would move me on. 

Not a given I'll decide to go for it -- major surgery, and I'm not sure I've got the support they want -- I live alone for example 75 miles from the hospital, which will make follow up difficult. Always, it's worth assessing whether all the hassle etc. involved is worth the possible life extension -- I'm not sure. And I'm close to their normal age limit --  only 2-3 years away. But I want to know whether I'm at least eligible before I make the decision-- and it will be worth knowing the results of the tests they do (when they can do it -- appointment next week just cancelled for obvious reasons).

(As an aside, they mentioned that I have restrictive cardiomyopathy that has been developing for over 10 years -- and which was not spotted by any of the consultants I saw for AF between 2004 and 2018...  Heigh ho; life happens. Not going to dwell on missed opportunities.)

So, the NAC have signed me off, and  I've lost the required weight. Two times (lost it, had a fluid blow up, extra diuretics, AKI which landed me in hospital for 4 nights not long before Xmas, assigned to a cardiac failure nurse who knows more about diuretics than any of the doctors I've previously dealt with, lost the required weight again plus 50% more. (If I keep going, I'll soon be overweight rather than obese).

Plus points:  I can tolerate more excercise, and generally feel much brighter (less fluid == less breathlessness).

Minus points: There's no padding over my pacemaker any more. It's currently sitting just beneath my collar bone, and if I want to, I can feel the terminals and the lead. It's slightly tender at present, but nothing I'm going to worry about unless it gets worse.  To be honest, the lack of padding in other areas is more of an issue (who knew there were bones in my thigh? and that sitting on a hard surface without the padding in my backside would be uncomfortable!  :) )

I'll get used to it, but it's an example of how body changes can affect our relationship with our pacemaker...




Yes, these unexpected side effects can be quite disturbing

by crustyg - 2021-03-10 09:57:22

Someone I know lost about 112lbs on a severely calorie restricted diet.  We knew that it was working when the dieter said 'I feel the cold now!'

I admire your courage and determination and wish you all the best!

No padding

by Persephone - 2021-03-10 10:30:24

Hi Atiras - Congrats on the results of your efforts!  My PM also protrudes quite a bit through the thin skin where it is placed, similar to yours.  I just try to leave it alone, not mess with it, wear a seat belt cover, and avoid carrying a heavy bag with a strap on that shoulder.  So far so good.

Heart Transplants

by Selwyn - 2021-03-10 12:12:44

Wishing you the  best of luck.

I have spent some time chatting to a mate of mine this week who has had a new heart for some years. He is training for the Transplant World Games, again.  He is planning to do the 100m sprint event and sprint swimming. Crazy!? We  play table-tennis together. He got a medal for TT at the last world games. Don't let anyone tell you there is not quality of life after having a transplant. 

I hope your amyloidosis is under control. It sounds good news that they are thinking of signing you off from treatment. It is definitely a matter of keeping yourself fit for surgery to get the best outcome. 

Never mind the relationship with our pacemaker- my wife complains I am too boney! I can certainly see the leads coming out  from my pacemaker and the box is rather like a 'badge of prid'e when I was swimming. Perhaps the cure is chocolate?



by AgentX86 - 2021-03-10 13:50:04

I too have lost significant weight. About 25-30kg since my PM was implanted, about 40 since my CABG, and about 65 since first diagnosed with AF. I'm not skinny but my pacemaker. Is rather prominent and the leads clearly visible. The pace being clearly seen sn't of any concern to me at all. I do tend to be protective of that area though.

weight loss

by Julros - 2021-03-10 20:57:42

I too have lost weight, about 40 pounds since implant. I had been advised to lose it to decrease insulin resistance, and I tell you it really stung to read an office note that described me as obese. A1C isn't any better, but I feel better. And yes, pacer is more prominent, one corner sort of sticks out and I have prominent veins over my chest. I don't really care. I think it, plus my tattoos make me look like a badass. Which of course, I am! :)

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