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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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LaurelB

Senior Member
Messages
139
Hi all. Strange question, but I am just wondering if anyone here with ME has had quadruple bypass heart surgery or any kind of heart surgery (while they had ME)?

My fiance has severe ME (house and wheelchair bound) and recently suffered a heart attack that led to the discovery of several blocked arteries (all 90-100% blocked). He had to undergo quadruple bypass surgery last week. Thankfully, the surgery itself was successful, but it has caused his severe ME to worsen substantially to the point he has trouble lifting his arms/legs/head or turning in bed without assistance. He is now in a rehab nursing home, but they do not understand ME and are not letting him get the rest he needs. They keep trying to force PT on him and ask him to do things he can't, which he has had to refuse.

I'm trying to find any other ME patients who have gone through this surgery to find out how long it took to recover (no doubt longer than an otherwise healthy person). I also wonder if anyone has suggestions on how to get nursing home doctors/PTs to understand ME. His ME doctor called them to explain and he has also printed out articles, but it hasn't seemed to help.

I worry this will leave him in a permanently reduced state. I have severe ME myself (bedridden) and live 2,000+ miles away, so it's been quite difficult. Thanks for any input.
 
Last edited:

Rufous McKinney

Senior Member
Messages
13,251
They keep trying to force PT on him and ask him to do things he can't, which he has had to refuse.

That sounds very difficult, cannot fathom it, frankly, so I hope your friend is able to find some help here.

It seems they do stents more and that procedure far less, than they used to.

Both my parents had these procedures, so I feel for your friend. And I'm their direct descendent! with ME!
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I think there is a documentary somewhere of another patient who contracted ME and when he went through the 2 day CPET they told him his condition made him worse than a heart patient.

Maybe if you could find that or some documentation from the exercise physiologists who work with our condition and show that to the people in rehab, they would realize they cannot push him like that.

Or maybe you could even call Workwell or Dr Betsy Keller and see if they would do some sort of a consult with his PT staff. ??? I can't speak for them of course, but maybe it would be worth it to at least try and contact them.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I'm trying to find any other ME patients who have gone through this surgery to find out how long it took to recover (no doubt longer than an otherwise healthy person). I also wonder if anyone has suggestions on how to get nursing home doctors/PTs to understand ME. His ME doctor called them to explain and he has also printed out articles, but it hasn't seemed to help.
I have had several cardiac surgical procedures while having ME, though they were much less serious than a quadruple bypass. My cardiologists have a basic understanding of ME/CFS and that was very helpful. I had to go through cardiac rehab and they were great, they read everything I gave them and tailored my program to ME/CFS. My electrophysiologist told me that I would just have to teach them, and they were very receptive. I did a thread about it: https://forums.phoenixrising.me/thr...rehab-and-doubled-my-exercise-capacity.79034/

Yes, it took me much longer than non ME/CFS patients to recover, but using my own guidelines, I did. If he was put on a heart-lung machine during surgery that would likely make for a longer recovery. Some bypass surgeries use this machine and some don’t. Clearing all the drugs takes time too. I hope you can get cooperation from his rehab facility. Sending best wishes.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Did you know that heart failure is one of the three top causes of death for ME patients?

Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.
https://pubmed.ncbi.nlm.nih.gov/16844674/#:~:text=The authors analyzed a memorial,for 59.6% of all deaths.

Some of the chronic viral infections associated with ME (coxsackievirus and cytomegalovirus) cause atherosclerosis by infecting arteries.

https://www.ahajournals.org/doi/full/10.1161/01.cir.100.4.e20