Poorish exercise tolerance - still

[Jane]

Nearly 12 months on from my AVR, I still find that I am not as active as I would like to be. I tire easily and sweat profusely (Hair drenched, plus neck and chest). Also, I get the thumping palpitations in the right side of my neck ( due to imcompetent tricuspid valve). My resting pulse rate is 88 - 100+. When I do even a small amount of exercise, eg carrying something upstairs, it shoots up to 140+. I know I am not the fittest person and have never really been into working out, prior to doing rehab, but I fell I am getting worse not better and its getting embarrassing (dripping with perspiration when I do the least little thing at work). Should I plough on regardless, or what?? Am seeing the cardiologist on 23 October.

 

[Mb]

Hello Jane:

My husband is in a similar situation. His tricuspid valve has a severe leak, and he is in chronic a-fib. He does take a beta-blocker, which keeps his pulse rate lower upon rest, but with even slight exertion, it goes up dramatically. Same with his BP. He also has two St. Jude valves, one in the aortic and one in the mitral position. His cardio has told us that one of the most important things he can do is to keep his fluid retention down. He takes 120MG of lasix daily......although it doesn't always work as well as we would like. The fluid overload causes a worsening of the leakage from his tricuspid valve. I am glad you are going to your cardio soon. Sounds like you might need a med change to help you along. Best wishes. - Marybeth

 

[hensylee]

Jane, I am sorry you are having a tough time. And glad to hear that you have a dr's appointment this month. You probably need reassuring or re-checking by your cardiologist. I wish you the very best. Ann

 

[bvdr]

Jane, I would agree with you that your exercise tolerance is not good at all. I am glad that you have an appointment soon. Hopefully he will order an echo and take a good look at what is going on. I hate that you are having these problems and I know how disappointed you must be- I'm sure you planned on feeling so much better by now. Do you have copies of your records? If you need to, get another opinion. I would really like you feeling better if you can!

 

[Karlynn]

Jane,
Let us know how your doctor's appointment goes. Be sure to tell him/her everything and insist that something needs to be done to find answers. I know it's very discouraging to feel this way and I'm praying for encouraging answers for you and a road to good health.

Karlynn

 

[ALCapshaw2]

Hello Jane,

I second all of the above, especially Karlynn's recommendation to tell your Cardiologist EVERYTHING. Also, ask him about fluid retention and if present, what he recommends to control it. (Diuretics are the typical method, but finding the right balance between fluid intake and output can be tricky... I wrestle with that problem constantly )

'AL'

 

[Jane]

Trouble is ....

Trouble is ....

Trouble is, I know the cardiologist will say it is all because I am out of condition, and that the symptoms are only distressing in the evening when I have time to be aware of them (the pounding pulsation in the neck), however this is not strictly true, as I am getting symptoms while at work. It is hard to get in condition when exercise is quite difficult (increased breathlessness and fatigue). I was doing quite well at the gym until June, since then it has been downhill all the way.

I realise too that my menopausal symptoms may be confusing the issue. Hot flushes etc.

My GP feels that I have no worse heart failure than before, and I don't think I am retaining more fluid now than before, (except in the very hot weather). However, the symptoms persist, and I do confess I am not feeling very positive at the moment, which is an understatement.

It could be, in fact, that I am suffering a little from the depression that is said to be common following heart surgery, except that in my case it is about 11 months late!!

Thanks to everyone for their kindness and their advice

 

[Karlynn]

Jane,
If your doctor dismisses your complaints, get another doctor. Let's say there is some depression. Something can be done about that. But from your description it sounds like there may be other things "in play" here. If you aren't feeling well, you will get depressed about it. Some doctors don't try to understand which comes first. In my opinion the "it's all in your head" comment from a doctor is inexcusable. At the very least that comment dismisses all the science that shows that depression has a physiological base. The doctor would be better off saying "sorry, I'm just not trained well enough to treat you." I got the "it's all in your head" treatment about 17 years ago when complaining to a doctor that the treatment he was prescribing wasn't working. 5 years later I asked my cardiothoracic surgeon to send that doctor what was left of the valve (which wasn't much) that was causing the problems that were "all in my head".

There are many of us in this forum that have learned the hard way that not all doctors know what they are practicing. We need to be proactive (which is hard when you feel like s#*!) and find physicians that don't easily dismiss our complaints and concerns so quickly. You have very valid concerns and it is your right to have them taken seriously.

If your doctor says it's because you are out of shape, then he needs to think about prescribing additional monitored cardiac rehab. It's hard to get the confidence to work out by yourself when it causes your symptoms and you worry you are doing yourself harm. But this is just one of many ideas that your doctor should address with you.

Ask him what he plans on doing to find out why you are feeling this way. If you feel he isn't being proactive and looking for answers - start looking for another doctor.

Wishing you all the best.
Karlynn

 

[Jane]

Just to say I had an out patient appt this morning. I didn't have an echo, but doc felt that the tricuspid valve was still ok. (No swelling and it sounded ok to her on the sthescope, plus all the other signs they look for and and palpations they do). She arranged for me to have a 24 hour holter monitor, which has pleased me as I have been rather concerned about palpitations and strange heart beats. I have got another appt in 4 months to discuss the result.

At work I have dropped 5 hours a week, so am now working 20 hours. This has made a big difference to how I feel at the end of the day.

Mentally, I feel loads better than I have in ages. I just hope a physical improvement will follow soon!!!

 

[Georgia]

Oh, Jane

Oh, Jane

I'm sorry about all this. And I'm with Karlynn on this - be SURE you're getting through to your doc and if you feel like you're not, get someone else. Seems like maybe she should have ordered an echo, since it's close to your 12 month anniversary.

Are you on coumadin? That really suppressed all those night sweats and hot flashes for me - and I was going full tilt until I had surgery. I know it's the coumadin that's doing it because the once or twice when I actually held because my inr was high, the flashes came back. It's the one REALLY nice thing about coumadin (oh, yeah, that and the no clotting thing . . .)

I hope you find some answers. Really doesn't sound like you're feeling very well.

Keep in touch.

 

[Jane]

Hi Karlynn and Georgia

I had an echo done by the consultant at the end of April, so I guess they are measuring the 12 months from then. I have got my follow up to the 24 hour holter in 4 months time (beginning March) so if I am still unhappy, I can raise any issues there.

I don't know if I said, (don't want to go back to my original post incase I lose this), but this week I have further reduced my working hours to 20 hours a week and this seems to have made a great difference to the fatigue and I think to the palpitations.

I have got hot flushes and then some, despite the warfarin, which just make me feet and lower legs icy. On Monday night, when everyone here was saying how cold it was, I slept on top of the covers with the windows open. My husband was a bit blue around the extremities in the morning, poor thing!

A friend of mine was saying yesterday that I should remember that I am not just recuperating from a major operation, but also from about 2 years prior to the op of feeling very unwell indeed. Put like that, I don't feel quite so desperate about how I feel.

All in all, I actually feel quite a bit happier about how I feel.......

and honestly I CAN spell stethescope.. its just that my fingers get a bit dyslexic at any speed!!

If, after I have made a few changes to the way I do things (including reducing my working hours and losing weight), I am still not as well as I should be, I promise I will contact the doc, even if it is before my OP appt.

By the way Karlynn, I could really empathise with what you said about sending the remnants of your heart valve to the doctor who said it was "all in your mind." About 11 months before my surgery, my Consultant's Registrar, said he thought my Aortic stenosis was only mild (at 0.5 cm I think not!), and that I was suffering from anxiety rather than angina. At least the consultant took the matter seriously and got me to the surgeon pretty darned quick.

Thanks again for all your support. Lots of love, Jane xxx