After 11 months - Frustrated and Confused

[johnnycake23]

Hello all, I say that I?m frustrated and confused. Here?s why. I was told after my surgery, which was November of last year, that I?d feel ?better than ever.? Well, I don?t. My cardio checkup at 6 months showed my tissue valve sounded great. Last month I saw a substitute cardio (mine was not available) after complaining about a lot of pressure at the bottom of my sternum, where the scar tissue gathered. He took me off Lisinopril and back on Lotrel, which I was on before my surgery. That took care of that particular issue. But there?s other stuff.

At one time or another during the day I will either feel tightness in my chest, slight shortness of breath, and twinges on my left side, a bloated stomach that makes me take antacids, or something else. All of them are not serious enough for me to contact my doc or 911 but still it?s bothersome. Also, when I Iie down after dinner I get up feeling tachy. But a couple of nights ago I went out and had a few beers with some friends. I went to bed around midnight and was awakened at 2 a.m. with my heart running like a freight train. That WAS scary enough for me to consider the emergency room. I eventually calmed down and made it back to bed many hours later, but that was scary.

Honestly, I don?t know what the hell is going on. I?m frustrated because I was not at all symptomatic before my surgery, and now every day there?s something. I?m confused because I was told I?d be OK but I just don?t feel it. I feel ? still, 11 months later ? like a recovering patient.

My post here is similar to the one ?rufus? posted a short time ago, which I read with great interest. I too have gained weight (I don?t know if it?s a ?stone? or not) since my surgery, and I work out nearly every day and watch what I eat, which only adds to my frustration.

I go to my cardio on Friday for my 12-month checkup with echo. I hope it?s a simple medication adjustment or something easy like that. My big fear is that the valve is failing and they have to open me up again. I dread that scenario. I guess I feel like I?ve paid my dues, and I sure as hell don?t want to go back in.

I?m not sure why I?m posting now. Maybe it?s just to vent. My fiancé is a great listener and comfort and has been awesome, but I don?t want to burden her so much. Maybe I?m hoping for someone to relate to what I?m going through and give me some pearls of wisdom. Maybe if someone out there has some credit with the Big Guy and can post some into my account. Or maybe it?s just because I?m scared that I?m gonna devastate my fiancé with bad news. She is so great and she just doesn?t deserve this.

BTW, I emailed Ross about this last month because I was wary of posting something that?s not encouraging. I sure don?t want to be a bummer. He advised that the bad should be taken with the good, and that I should share. It could help others.


As always, thank you for listening and for your help.

 

[hall]

You should get some answers on Friday when you go to your 12 month check up. Beer might make you tachy. I know some booze has caffiene in it. Not sure about beer. Never wonder if you should post a problem. That's what the forum is for. I think someone else can help you better that I can. Best of luck on Friday.

 

[Bina]

Don't worry about being a bummer.....for a while I thought I was the only person here who had a "less than stellar" recovery.
I can't go out for dinner or do any visiting in the evenings unless I really want to be up all night with the tachy heart. Simple foods take forever to digest.
I'm sure that I need a med change, but my GP is very hesitant to do it. My cardio says that I am just fine, so the GP goes along with it. I'm now in the process of getting in to see another cardio.
If I even slightly increase my Metoprolol to ward off the PVCs and SVT, then my HR gets much too low and I feel faint.
I'm sure there is hope for us, it's got to be a balancing act in the meds??

 

[Jkm7]

Sorry things aren't going as well for you as you hoped and, of course, you should post about it.

Not everyone sails through this surgery and feels swimmingly after it. It's the reality of the severity of what we endure.

Sometimes a medication adjustment/addition/ deletion makes a world of difference. Hopefully that will be the case with you.

You will have much more peace of mind, hopefully, after you get a great report re: the Echo. To hear your valve/heart is working properly will at least erase the fear of a re-operation. The chances of that are very slim if your 6 month echo looked good.

Wishing you the best.
Let us know how it goes for you.

 

[kfay]

Johnnycake, I have spoken to a couple of other members who aren't feeling quiet as well as one might have thought. I am seeing my cardio on Tues. because I just can't shake the feeling that something is just not right. I too have had occasional runs of fast hr, the longest was 150 for 1 hour last week. I'm afraid it is afib. I also have been having edema (which I never had before surgery) and occasionally feeling sob. This actually concerns me more than the rhythm things because my surgeon was considering doing a glenn shunt on me while he was in there because my right ventricle doesn't pump very well. I'm now scared that he should have done it and I will need it soon. I also have the same fear that my tissue valve is failing. I actually had a dream last night (really a nightmare) that I was having surgery again.

I actually have to give my cardio credit because when I told him I just don't feel well, he said I need to see you now. So, we shall see. Sometimes I wonder if this is just the way our "new hearts" are going to feel and we just need time to get used to it.

Kim

 

[ALCapshaw2]

You are definitely NOT alone in not having a stellar recovery Johnny.

Be sure to write down ALL of your concerns, issues, and symptoms before your Cardiac Check-Up. Don't let your cardio get away until he has reviewed and addressed each and every item on your list.

Hopefully he will be able to sort it out (maybe after some more tests) and get you back on the road to a better recovery.

 

[tobagotwo]

Meds changes can make a bifg difference. But, as Bina points out, doctors are often reluctant to change them.

You can help this. Tell him that he really does need to listen to you, and remind him that you are the other part of any medication therapy. If it's not working for you, it's not working for either of you. My wife was on atenolol and began coming down wioth symptoms of psoriasis, a sometimes side effect. I was furious that her doctor refused to take her off of it, saying that wasn't causing it.

It was only after the skin doctor advised that it was the most likely reason for it, as it was a highly atypical case, that the doctor finally relented. Too late, of course. It has faded partially over the last two years, but was horrible for her for a year and a half. She'll always have it to some extent now.

Granted, you don't have psoriasis, but the point is the same: if it's not working for you, you need to say that you won't accept continuing it. There are literally hundreds of BP and other heart medications out there. Likely there is at least one "right one" for every person. Make him find it.

Best wishes,

 

[pnwcoast]

I know what you mean when you say you paid your dues. My mitral valve repair will probably need to be upgraded to a mitral valve replacement AND I now have an ascending aorta aneurysm. After my repair I thought I had been there and back and was now ready to resume my regularly scheduled life.

I think such a huge thing as OHS is hard on a body. It may be that you are still trying to recover and to adapt to your current state.
Even though I didn't have much for symptoms I sure thought I would feel great after my OHS. Honestly I've felt like something just isn't right for a long time now. Best wishes to you.

 

[ryen0]

just wanted to tell you also that your not alone. sometimes i feel like the surgery made me sick. i too was feeling just fine before i found out about my valve. now after surgery i'm on a ton of meds??? a lot of people here have said it takes a long time for your heart to get used to the new plumbing. that's all well and good, but it's still no fun in the mean time. i hope you can get some answers and your next check up, keep us posted.

 

[Ross]

I'm glad you decide to post. As I told you in the PM, new people need to see that not everyone has a textbook perfect recovery, that there are those of us that have problems and they may too. Not trying to disturb anyone, just trying to be sure that you do understand that these things do happen.

I know I went in with the hopes of being able to breath easy when it was over, instead I'm on oxygen 24/7/365 and I can't go 50 ft without a rest and catch up on breath. Disappointed? You betcha. Nearly losing my life kind of offset the disappointment. Rather be alive even if lame.

"I went to bed around midnight and was awakened at 2 a.m. with my heart running like a freight train. That WAS scary enough for me to consider the emergency room. I eventually calmed down and made it back to bed many hours later, but that was scary."

That statement sounds very AFIB to me. It's the most unsettling feeling one can have I think. You may need to wear a holter monitor for a bit to see what's going on.

 

[cday]

Sorry to hear about your continuing problems. Our experience is that surgery really smacks you up side of the head if you were asymptomatic before. I hope that the doctor will be able to make some changes. Be sure to let them know what you were able to do before the surgery and what you would like to be able to return to. My husband's cardio says that information would definitely influence his decisions as to what he would prescribe, etc.

 

[Smiley2000]

We are here for each other, in GOOD and in BAD days/months/years... I was also promised this "happily ever after" post-op, but I am still waiting for things to settle...

One thing we keep on forgetting: this OHS wasn't elective surgery! we HAD to do it in order to live! It is a big shock if you were asymptomatic and now post-op it feels as if you are worse off - but as soon as the road is smooth again, you'll notice the difference.

Things that I have been battling with (I am 6 months post-op) is SOB, palpitations, irregular heartbeat, Edema (abnominal, legs, hands) and chestpains. But I am planning on getting it sorted soon.

I agree: a 24 or even 48 hour holter ECG is the best way to figure out what your ticker is upto.

All the best!

 

[zipper2]

Jcake,sorry for all your issues and i belong in your team
just had recently a angiogram and simple test ,but not
for mealways has to be a challenge,but getting used
to it after so many 16 years with arotic and now mvr comin
up and Doc concerned i'm very high risk for surgery,but will
do it the (sweetheart ) he is but no more surgeries and been
removed off work till surgery's complete and am recovered
The cath caused me a bleed when they hit the artery in my
leg and if i posted pic's it not a pretty sight purple from top
thigh to my toes of foot and still limping and hurts and wow
surgery is sometime soon don't have a date yet....how frustrating
no date yet but to be done end of month.....i cannot wait
and almost bet the surgeon can't wait either oh times are
fun ,but as you can see i,ve had my moments and not had the
2nd surgery yet thinking i'll have surgery for mvr and still my
leg won't be healed.....as we know it gets better and adding
you to my good thoughts and prayers were all here for same
reasons and stick together.....Hang in there with us.

zipper2 (DEB)

 

[terodac]

Think only good things! I know it is hard but you have come a long way from where you were! Sounds like your meds need fine tuning to me. I had to work with mine for a while. Try only to see your main doctor and if he is not in just wait. I don't see anyone other than my main doctor the one that was in surgery with me along with my surgeon, because he knows my case. Depression is normal in OHS so you might have a little bit of that! Take care let us know how you are doing!

 

[Karlynn]

How often are you taking antacids? Since I've just "solved" a gastric/arrhythmia issue (my stomach was having lots of acidity and it was causing arrhythmia due to the vagus nerve that runs from the stomach to the heart)

You said you woke up with tachychardia after having 2 beers. Alcohol can affect a heart that isn't functioning perfectly or it can irritate a stomach which then causes heart rhythm issues.

You may have a few things going. If you are using antacids daily you may have a stomach issue that is complicating your heart issues.

 

[johnnycake23]

You guys are great. Thanks for all your time and good words. I'll give you an update after Friday's echo and cardio visit. I so appreciate you taking the time to help me.

 

[khawkk]

I'm glad you posted.
You truly are not alone.
7 mo. here and my chest still hurts. After reading so many fast recovery
stories I was wondering what was wrong. I think age has something
to do with recovery time.
Yup...I'll blame it on age!

 

[Leeroy996]

Karlynn, is that common with the vagus nerve? I get that srt of feeling all the time at the moment. I thought I was just eating too much.

 

[Bryan B]

Johnny,

I think your situation is more common than you think. I had always heard that it took about a year to feel totally recovered. Well in my case it took more like two years, and there was a lot of frustration and depression during that second year. But eventually my body started getting its act together and the mind followed. My heart has been functioning great since the surgery but I had sternum problems that lingered and lingered, even after having my wires removed. That kept me from doing the second most favorite activity in life...play golf.

Keep after it with your cardio until you get things sorted out. If you get a good report on your valve then you and your doctor need to become like detectives and eliminate what is not causing your issues until you can find what is causing them. And I know this sucks, but be patient...and if you find yourself getting down on the situation do not hesitate to talk to a professional about it. I finally did and it helped a lot...I wish I would have done it sooner.

 

[KristyW]

Johnny,

I know that with me, if I have more than 2 drinks of any kind of alcohol, I will wake up after about 3 hours of sleep with a racing heart. I does eventually subside, but it is NOT pleasant when it happens. I've resigned myself that I have an absolute 2 drink maximum in the evenings. That's ok because I have addictive tendencies anyway

Others here have excellent advice. Write down everything you wish the cardio to cover. Make 2 copies...one for him, and one for you. That way you can both go over the list together. Don't let the Dr. just slide over any of your points either.