ACE-Inhibitors post AVR

[Gemma]

Just a quick question for anyone who's had an aortic valve replacement but otherwise doesn't have risk factors for heart disease (ie high blood pressure, diabetes, obesity, smoking, aged over 55, high cholesterol, etc), and whose left ventricle is normal size or as normal as it's going to get if it was enlarged prior to surgery.
Do you still take an ACE-inhibitor (e.g., ramipril)?
I'm asking because Jim was prescribed ramipril when his condition was diagnosed in March last year, and we were told it was to prevent further damage to his heart prior to surgery and was therefore only necessary up until he had the valve replacement. Then his cardio refused to allow him to stop taking it at the 2-month post-op check-up in February this year. We're seeing him again next week and, assuming that his left ventricle is the same size as 4 weeks post-op (4.3cm - down from 7cm prior to surgery) or less (i.e. normal), we're hoping he will agree that Jim can stop taking it now as there doesn't seem to be any reason to continue taking it. His GP has already said there's no evidence to support him taking it but of course won't do anything without his cardio's say so .
So I'd be interested to know if anyone else takes an ACE-inhibitor, and what reasons you've been given for it. Feel free to add any comments you think might be relevant.
Thanks everybody
Gemma.

 

[terryj]

My husband was on Prinivil prior to his AVR replacement and still is. We thought he might get to come off it after surgery but his cardiologist and our primary doctor want him to stay on it.

 

[ALCapshaw2]

Gemma,

I have a question for you about what Jim was told in regard to taking his Sotalol?

One pharmacist told me to take it on an empty stomach while another (plus some internet sites) say it is OK to take with food.

Being able to take it with food would GREATLY simplify my drug regimine!

'AL'

 

[JimChicago]

I was told to take an ace inhibitor after surgery and the doc still wants me to take it. I'm wondering though if I need it - I kinda think the docs recommend it based on studies that are supposed to say it gives a greater life expectancy in general. So I'll be interested in hearing what you find out about what the pro and con reasons are for taking it.

 

[Gemma]

Al,
Jim was told to take his sotalol at 8am and 6pm. Which is of course breakfast and dinner (supper, tea, whatever you want to call it!) time. He wasn't advised either way about whether to take it with food but presumably it's OK or they would have told him different times.
However, I did read that you shouldn't drink milk at the same time as taking it, or have calcium or magnesium supplements or anything containing them within 2 hours of your dose of sotalol.
Of course, we're hoping there may be a miracle cure for the SVT so hopefully sotalol will be a thing of the past one day .
Gemma.

 

[Gemma]

Rachel,
Thanks for your reply - I have already looked for studies but the only large-scale one done to date seems to be the HOPE study which was purely for over-55s with one or more risk factor for heart disease (Jim is 27). It did find that ACE-inhibitors reduced the mortality rate in these patients, but as far as I can discover there is little if any research to support use in a young person who is otherwise healthy (apart from having had a congenital bicuspid valve which is now replaced with one which works properly!). And one has to wonder if it's the ramipril which helped Jim's heart get back to normal size anyway, as it stayed the same size for almost a year prior to surgery while he was on ramipril - which suggests it was the new valve which provided the impetus for a return to normal size, rather than the ramipril. It may have helped speed things up a little, but I would imagine there's no reason his left ventricle would enlarge again if the valve works as it should.
Just wanted some general idea of whether it's normal to still be taking it really - someone mentioned on here a while ago that there wouldn't seem to be any reason to suggest Jim needs to continue taking it, and his GP has also said there's no evidence to support him taking it, so I guess he's a bit of a guinea pig really!
Gemma.

 

[KathyH]

I was actually put on Zestril pre AVR because of the regurgation and diabetes. I developed a cough from it and it had to be stopped. I still take a beta blocker- lopressor
Kathy H.

 

[Harpoon]

I've been on Zestril (aka lisinopril) forever and a day really. I started on it when we first found a leak in the baffle part of my transposition repair from after I was born. I was briefly put on Diovan which is also an ACE inhibitor, but it didn't seem to change the nature of the cough I was (and still do actually) experience.

A couple times people have suggested changing back to diovan or some other ACE inhibitor.

I asked my card about going off it once and he said no because it was still a medication that would support my heart function allowing it to work more easily than without it.

The dose I was on changed after I had my valve replacement, it's half of what it was, but I'm still on it.

I've been thinking I should ask again about either going off of it or switching to some other type of ACE inhibitor (by the way, they ALL list cough as a possible side-effect, all of them...)

 

[Gemma]

I asked my card about going off it once and he said no because it was still a medication that would support my heart function allowing it to work more easily than without it.

The dose I was on changed after I had my valve replacement, it's half of what it was, but I'm still on it.

I've been thinking I should ask again about either going off of it or switching to some other type of ACE inhibitor (by the way, they ALL list cough as a possible side-effect, all of them...)

I've read a few things lately saying they don't really know all the reasons that ACE inhibitors work but that they seem to prolong life/reduce death in certain groups (again, the over-55s mainly). But I guess that's the evidence Jim's cardio goes by and extrapolates to an otherwise "healthy" 27-year-old.
He's still on the same dose, which is admittedly a small one but still seems to cause some really nasty burping and wind incidents. Not a huge problem with the cough although he does seem to occasionally get a bit of a cough - hard to say if the ramipril caused it though. And then there's the crappiness factor which is hard to quantify and his cardio brushed aside when we mentioned it last time. He can't take it any other time of day than last thing at night, as it makes him feel generally crappy. This has been the case since he first started taking it, so isn't anything to do with the surgery or after-effects thereof. Maybe tobagotwo's right - "crappiness" needs to be patented as a medical term.
Incidentally, it was my mother who suggested he take it at night instead of the morning as she also found that she felt rough when taking it - she takes the same dose as Jim does for high blood pressure. Given my grandparents' history of high BP and strokes, I totally understand her doctors' insistence she takes it.

 

[Harpoon]

Now I'm wondering if I should try taking meds at night rather than daytime... Hmmm...


I know what the "crappiness" thing is about. It's a quantifiable symptom in a lot of medications, where you generally feel malaized and blah and not really in the mood to do anything other than veg on the couch or in bed.

Amiodarone did that at times. I suspect some of my other meds do it too but it's hard to tell because I know a LOT of what I experience day to day is simply a lack of sleep (I NEVER get more than 6 hours straight in any one "sitting" and usually it's around 4-5 if I'm lucky...)

There's some other stuff that could be worth checking out too. My metabolism got shot all to hell when I really crashed (stage IV CHF) and it generally made me sleepy ALL the time. I had a ferrocious appetite, but I was almost a walking zombie for quite a while. The metabolism issue also affected how well the diuretics were working which simply compounded the problem.

Too much fluid, won't process diuretics, always thirsty/hungry/tired, lower metabolism, more weight gain, MORE fluid, metabolism gets worse...

Kind of a downard spiral effect there.


I was on synthroid for a while to help stimulate metabolism and such. I even went back on it for a month almost a year after my VR to test a theory that it might help me lose some excess weight (not fluid related) at the time. Didn't seem to make any difference so I stopped it again.

Now I'm hovering about 10 lbs lower than what I was this past summer, ti's coming down REAL slow, but down nonetheless and all I'm doing is paying more attention to HOW MUCH I eat, not what really.

Smaller portions, more often (sometimes)

 

[Gemma]

Right, the verdict from the UK is:

Keep taking the ramipril!

Apparently it has improved and "remodelled" Jim's heart which will reduce the strain on it and will continue to improve it as time goes on. The cardio says it's particularly beneficial in combination with the sotalol for heart function and keeping arrhythmias at bay. The way he explained it to us, arrhythmias can be caused when one chamber of the heart is enlarged and a re-entry circuit somehow gets established - so I suppose it's hard to argue against the ramipril really. If it really does reduce the risk of arrhythmias, and also improves heart function, it can't be all bad!

He did joke that he had shares in the company....

And feeling crappy after taking it isn't enough of a reason to stop taking it. Ah well, Jim seemed pretty happy with the explanation. Maybe we'll argue about it again next year!!

Gemma.

 

[chilihead]

I was on Altace prior to surgery and now take Toprol, a beta blocker, post surgery.

 

[Gemma]

Rachel,
That was my reaction too, but I'm starting to think I either over-estimated how bad Jim feels with the ramipril, or he exaggerated it. He's a man - what more can I say? Jim's cardio seems very knowledgable and we both trust his opinion, but if it was the other way around, and I was the patient, I'd be really pushing to stop taking it.
There's an old English saying: "you can take a horse to water but you can't make it drink". I don't believe Jim needs the ramipril any more, and neither does he really, but I'm not going to fight his battles for him - I've decided if he wants things to change he's got to sort them out himself. If he's happy with what the cardio said then I guess we'll have to leave it at that. I'll happily do all the research and find out all the info for him, but he's got to stand up for himself!!
Gemma.