Upgraded

Hello,

I am new here and have a few questions about a recent upgrade.  I had my first pacemaker implanted about two weeks post valve replacement for complete heart block caused by damage during surgery.  I originally was just paced in the ventricles, then several months after discharge I was still showing signs of heart failure.  I had an echo done with signs of pacemaker sydrome and worsening congestive heart failure, pulmonary hypertension, servere to moderate mitral reguritation, and an ejection fraction 35-40 percent.  I got two opinions one doc wanted to immediatly put a dual chamber in without further testing.  I got a second opinion and the new doctor recomended a TEE for a more detailed imaging, iv lasicks, and lisinopril, he thought they may need to replace my mitral valve (the tricuspid was the original valve replaced).  After a weekend in the hospital and the TEE he decided not to do the replacement on the valve and sent me home but wanted me to go forward and upgrade to the dual chamber.  He wasnt very optimistic that it would help much.  I had the upgrade done a few months ago and havent noticed many changes.  My blood pressure is down (most likely from lasicks and lisinopril).  I am due for a follow up in January.  I dont feel that it has helped much at all.  I am wondering if anyone has heard of dual chamber pacing reversing mitral valve reguritation that does not include prolapse or flail (in other words reguritation suspected to be caused by dysynchrony).  It seemed that the first doctor thought this would solve all my problems and the other seemed skeptical, and i am feeling as though the second doctor may have been right.  I would like to think that my syptoms are mostly in my head and that i am fine now.  Since my heart problems were caused by endocarditis (infection) it would be nice to think that i wont have to expect open heart any time soon (or preferably never again).  I am only 30, 5 feet 9 inches, 135 lbs, used to run several miles a day, no significant cardiovascular disease in the past (exception of a small pfo they closed when doing my valve replacement.  I want to be active again but as of now almost a year since open heart surgery i can barely walk a block without sweating, dizziness, chest pain, vomitting, shortness of breath, and palpitations.  Also has anyone had luck addressing symptoms of exercise intolerance by having adjestments to dual chamber settings made?  My last question is if anyone else had a pacer placed in their stomach?  I know this sounds weird but thats where mine is (my surgeon didnt want to ruin my breasts).  Hope everyones holidays are going great!

-ASully

PS Sorry for rambling!

3 Comments

Hiya

by Bionic Beat - 2016-12-28 10:41:58

You are in heart failure but have a reasonable ejection fraction.

Two doctors have suggested the dual chamber pacemaker to improve the dysynchrony in your ventricles. 

One doctor is more optimistic about your outcome than the other.

You, of course, would prefer to think it's all in your head, it seems you've been through a lot and really want it to just go away.  I sure understand that....

Okay, not being mean here but they do not do heart surgery if it's 'in your head'.  They have oodles of people who need and want their skills.

I suspect the difference in the doctors opinions of outcome is because CRT is a 50/50 deal.  Half the people feel better and do get better.  Half do not feel an improvement and a few get worse.  If you get worse, they can shut down that feature.

Its the half full or half empty glass conundrum and your choice to make.

Having reread your post, I see you've had the dual chamber implanted but do not feel it's been beneficial.  It's still early days, remodelling of the chambers can take 6 or so months, as can the improvement in EF.

Wanting to be the runner or active person we were before heart problems is very common.  Chances are, it may not happen depending on your particular case.  Some people with pacemakers are incredibly active, others not as much.

Ive had a dual chamber implant a couple of weeks ago and although I'm not ever going to run another marathon, I am no longer dizzy and terribly weak.  

I've had 3 pacemakers since 2008, without them I wouldn't be here.

When you look at it that way, you might be able to stop grieving for what was and be happy with the present.  I hope you do have major improvements in a few months and adjust to your present situation.

 

We are both on the right side of the sod!    :-))

 

Best wishes,

 

Bionic Beat

 

Postural hypotension

by Selwyn - 2016-12-28 20:35:49

Your exercise symptoms sound like hypotension. I think the combination of Lasix and Lisinopril may be the problem. I would be asking for 24 hour BP ambulatory monitoring so as to put this theory to the test.  You also need to have your electrolytes monitored closely- sometimes these disturbances can cause hypotension.

Personally, I think you would benefit from left ventricular pacing ( a third lead is needed).  Useful for CCF, pumonary hypertension, asynchrony. This depends on your poverty of  ejection fraction though.

I suggest you read https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501093/

I hope this helps. It certainly sounds that you need to at least be asking this of your physicians. 

Best wishes for your health in the New Year and beyond,

Selwyn

 

Thanks for the responses!

by asully - 2016-12-28 21:08:22

I just wanted to say that I appreciate the responses and advice.  I like to believe my doctors have my best interest at heart, however, I am an incredibly analytical person and like to understand everything as much as I can.  I am trying to be patient as I understand my body has gone through a major trauma and will need time to repair what it can.  I am just concerned that not all the options have been explored and fear things may be overlooked since I have such a complex case.  Thank you to everyone who has taken the time to read my post, I am also happy to discuss my personal situation more with anyone willing or interested.

ASully

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