Am I the only one?

[Bugsy]

I had a mitral valve replacement 8 months ago and for the most part feel pretty good except I seem to get winded easily at the first part of almost any activity but once I get going I seem to be fine. For example, walking up to flights of stairs I have to catch my breath but last week I hiked 1200 steps down and 1200 steps back up at Tellulah Gorge in Georgia. I go to the gym 3 times a week and the first 5 minutes on a stationary bike is quite difficult but after that I'm on another 15 minutes with no problem at all and then go on to some weight lifting. Is this normal? By the way I'm 42 years old.

 

[MikeHeim]

I see in your public profile that you are only on Coumadin at this time. Is that correct? Having a tough time "getting going" can be an effect of being on a beta-blocker such as atenolol.

One other thing comes to mind. How enlarged was your heart at the time of your surgery? From what I was told, your heart can have a tough time during the reshaping process and have problems working efficiently. This is the main source for people who have SOB issues in the first several months post-op.

Just a couple ideas.

 

[dj/utvolsfan]

Help!

Help!

Dear Mike,
I sure hope what you are saying is true....about the length of time for the heart to recover. I'm having the same issues as Bugsy and it is really bugging me BIG TIME!
I'm having to climb 21 steps to get to my place and if I am carrying anything besides myself, it is a killer. I am practically in tears by the time I get to the top. Grocery shopping is becoming a major burden....dang, milk is so heavy. My stats are: weak from chemo....half way finished. Six months post-op from mitral repair and major revision of ventricle muscle. Major meaning on and off bypass machine x 3 before surgeon was happy with revision. Currently waiting on results of echo because leakage was evident at appt. OH, how interesting, oncologist just called to tell me I am borderline for chemo tomorrow because hemoglobin is really low....which could be why I am so weak. More tests tomorrow morning before chemo. Ok, I have way too many issues going on. So I guess it could be a flip of the coin.......is it my heart or is it my blood? If it's both, I need to pray harder.
Sorry, Bugsy, I didn't mean to highjack your thread......With all my issues, there are times I feel I need my own website. I am going to go get my chemo notebook and read up on bloodcount problems. SIGH.
Keep smiling, Bugsy, it will get better!
Debbi

 

[dj/utvolsfan]

Every time I try to edit my reply, it disappears....so I was just going to add that I am on Toprol XL 100 and that generally, like Bugsy, once I get started walking, exercising, my ability to sustain activity tends to level out.
Debbi

 

[Karlynn]

I wonder if it's a mitral valve thing? I always assumed that since my heart was a little damaged by the time I got my MVR that the SOB at times was a product of that. But I can relate to all of what you said. I work out regularly, but can get winded going up a flight of stairs. Then the next time up I can be carrying a 40 lb basket of laundry and not get SOB at all. I've been like this for almost 15 years. I am also on metoprolol to keep my heart rate down a bit, so I don't know if it's that medication either.

I just never know. 5 years ago when we were in Athens we climbed up a pretty steep marble walkway at the Acropolys to the Parthenon. I didn't get winded - go figure. There really doesn't seem to be any rhyme or reason to when I experience the symptoms.

 

[Superbob]

Same with me -- I work out regularly at the health club, but sometimes get winded just going up the stairs from the basement. Also, the other day, driving back from the health club (after doing a 45-minute pool workout), had momentary dizziness that was so pronounced I pulled off to the side of the road. It was gone in 5 or 10 seconds. Sometimes when there are multiple issues, as Debbi described so well, it's hard to know if the heart is involved. With my dizziness, I checked my BP and pulse, and they were normal, but checked my blood sugar and it was a tad low. Probably exercise brought it down.

Trick is knowing when these are just routine strains of everyday living and when they are significant enough to go to the docs.

 

[geebee]

Likewise here. I am fine once I get going but getting going can be really tough sometimes. Forget a flight of stairs but I can walk 5 miles if I get past the first 500 feet or so. I can swim multiple laps though without any warm up. I attribute it to heart enlargement and the trauma from 3 OHS but maybe there is something else going on???????????

 

[debster913]

Good, Bugsy, I'm not the only one either!

I had mitral valve repair four months ago, and just recently started having weird symptoms. I'd nearly passed out in the shower last week, saw my cardio and he put me on ProAmatine, and then I started having dyspnea last Thursday. I was so short of breath Friday night that my husband took me to the ER. I was a little scared, but nothing was wrong. According to my echo in July (6 weeks post-op), my valve was in excellent shape. There was no reason to doubt that. Then my cardio called me in for an echo yesterday. Although I haven't gotten the official results yet, I can only assume my valve is in the same excellent condition it was in a couple months ago. Otherwise, he would have called me already.

From what I understand, having talked to the echo tech yesterday and several on these forums, pre-surgery symptoms can linger (and even return) after surgery. I've finally chalked mine up to just normal recovery and feeling pressure at work. I returned to work last month, and have lots of adjusting to do.

Even at eight months post-surgery, for you, those crazy symptoms can still be present. However, if you feel that your symptoms are worsening, call your cardio. It is good that you're exercising, though. Be sure that you're not pushing yourself too hard.

Karlynn--You've been to Greece? Lucky gal! I was supposed to go this summer. Hmmm...my cardio is from Greece, maybe I'll ask him if he can drag me along next summer on his vacation. Heh.

Debi(debster913)

 

[marky]

Ditto on this MVR stuff.. by the time I get up my steps, my heart is pounding so hard I feel the need to sit down.
However, I can walk at a brisk pace for 45min and not feel that way..
but anything I do the first 3min or so I do feel that?
Maybe..just a guess here.. but because my heart was so used to all the regurgitation (85%+).. that Now that things flow properly it causes a sudden increase in HR and it takes afew minutes to stabilize?
Ok that is my story ..guess I'll stick with it!

 

[mtkayak]

I'm the same way but mine is Tricupsid. If you hiked down Tallulah Gorge and back up then of course you are going to get winded. That is a STEEP Gorge. I've done it several times, it's not an easy hike. I had to hike up a mountian for a mile several weeks ago and I had to stop 6 or 7 times to catch my breath. I told my Card and he laughed and said that's not an easy thing for anybody to do???? Yes, it does take me a while to get going but once I get my heart rate up, I usually don't have a problem. Everybody needs a warm up before they start working out, it may just take us a little longer. The thing being is that once a heart has been operated on, it's never truly going to be a 100% effecient as a normal heart would be. Maybe 90% or 95% but not 100%. I guess the biggest key is knowing your body and knowing your limitations.

How often do you go to Tallulah? I will be kayaking the Gorge in November when they release the water. It's an awesome site to behold.

 

[Bugsy]

Wow! I'm glad I posted this. Thanks for all the replies, makes me feel a little better about all this. I will mention it to my cardiologist next time though. DJ, you didn't hijack the thread, no worries. It sounds like you're having a rough go of it right now. best of luck to you, hang in there.

 

[jeffp]

Yeah, its a mitral valve thing. The way my second cardio explained it to me (the first one didn't explain anything) was that the mechanical valve has a certain resistance to opening due to the mass of the leaflets, so the atruim has to work harder to open it (that's why atrial hypertrophy is common in MVR patients, the aortic valve has more force on it to open it with the ventricular contraction). Takes a while for the atrium to reach maximal contractility. When the ventricle contracts it can't flatten the valve like it can with the original equipment, so the contraction is less effective, thus the lower maximum possible ejection fraction. Agasin, it takes a bit of time to reach that maximum plateau. Also at higher heart rates the inertial delay in the opening and closing of the valve limits the effective flow rates. I don't know if these explanations are spot on, but it makes sense with my SOB after HR's about about 150 or so. It was so rare that a cardio would sit and have a conversation (long answer to short question) that I figured he didn't have a hidden agenda.