Activity ability becoming less as heart EF improves from 20% to 55%

During 2018 and 2019 three attempts were made to fit a CRT-P,the 3rd lead being transeptal (which was causing the surgeons problems,eventually solved using lasso method)so 3rd lead is on my left atrium,guarded by Apixiban.

First op 31st Oct 2018,2nd op New years Eve 2018,final and successful op 23rd Jan 2019.

My problem severe left venticle block was only discovered by chance Dec 2017  (even though I had reported the symptoms!-"another story")

Prior to the surgery,and even during the periods of surgery and recovery,I was quite able to walk normally,and continue to restore a 19yr old car,plus walk my Husky dog,which at 80yrs of age I thought was quite a feat???At no time was I phased by the surgery or of any risks.

At the time of discovery of my condition of  heart failure,after all the necessary tests my Ejection fraction (EF) was only 20%.yes I used to tire easily and had limited energy,But from 2014 until 2020 I was  more than able to get about,and managed my life quite easily.It was though a close call!

Now Im experiencing complications,in that Im woken by aching calf muscles,on standing I sway all over the place, as if my legs cannot support my weight,walking is almost impossible due to the discomfory in thigh and calf muscles.Only by walking up and down my hall for 10 minutes or so can I get any control over my legs.Over the period of the day I do improve slightly,but nowhere near my post surgery state,or immediatly after?

My EF is now an unbeliveable 50-55% virtually normal.and this appears to be my main complication,because as the volume of blood passing through my heart improves, my walking and activity events are decreasing alarmingly mainly due to the discomfit and fatigue suffered by my legs!

My cardiology team has changed,my new team appear to be unobtainable (due to Covid) so eventually I managed to get a referral to AAU (Acute Accessment Unit) who diagnosed "possible" claudication of the legs ?They in turn have arranged a referral to a Cardiovascullar surgeon on the 11th Nov 2021.

What can I expext,and should I phrase my questions in any particular way or say it as it is? Take care one and all   Caskin


3 Comments

There's a lot going on here.

by crustyg - 2021-11-07 13:08:57

Hi: My suggestion is that you emphasise the lack of muscular power and loss of muscle control, and leave your docs to focus on the numbers.

At the very least (IMHO) you need a FBC, electrolytes + urea/creatinine and a doppler pulse pressure in your legs.  Keeping large muscles working well requires a good supply of oxygen, and there's a lot more to this than just managing HR+%LVEF.

Considering your CRT device, is the rate response adjusted suitably for you, or at least as well as your previous pacing device was?

Hope that helps.

Good luck

by Gemita - 2021-11-07 14:01:06

Caskin, I see you have ischaemic heart disease and had a stent fitted in 2018 which probably saved your life.  Your ejection fraction recovery has been excellent.  I note you are being referred to a Cardiovascular surgeon on the 11th November for possible claudication and you ask what you should expect and what questions you should ask.  It might be too early for questions on the 11th since they will need to arrange a number of tests first before they can give you an opinion.

If I recall correctly, my mother initially had a Venous Duplex Ultrasound on her legs to evaluate blood flow through her leg veins, followed by MRI Angiography tests. 

From your history of ischaemic heart disease, I would want to protect myself from any restricted blood flow to legs if your symptoms are due to arterial disease, although signs of critical disease would be more obvious like burning in your legs, non healing, open sores, loss of muscle mass, cold limbs, numbness, swelling, skin colour changes and of course worsening pain.  

Hopefully your blood pressure is well controlled and that your doctors are monitoring kidney/liver function, blood levels of cholesterol/triglycerides, and controlling conditions like diabetes or thyroid disease if you have these?  

My mother had atherosclerosis with severe right leg complications which eventually caused a life threatening infection requiring urgent below knee right leg amputation, so it is important to look for any potential blockages as soon as possible.

I would respectfully ask if they could rule out any significant peripheral arterial disease/artherosclerosis as a cause for your symptoms and yes describe exactly what happens:  that you are woken by aching calf muscles, on standing you sway all over the place, as if your legs cannot support your weight, walking is almost impossible due to discomfort in thigh and calf muscles.  I hope you will be given the attention and understanding you deserve

Cardiac rehab

by Persephone - 2021-11-07 16:45:27

Perhaps a cardiac rehab program could help as you move forward to recover, Caskin, if it may be a possibility for you.

I've had the venous ultrasound test that Gemita describes and it was quick, noninvasive, and reassuring to have done.

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