Not feeling great (understatement)

[Jane]

Hello everyone,

I haven't posted, or even lurked in about 3 - 4 months, so it feels nice to be among friends again.

I have not been in work since November, (so have not had access to a computer - I am in the local library), and prior to that, my attendence was not reliable. I found I was getting completely exhausted even when reducing my hours to 4 a day. Often I feel so ill with tiredness by the evening, that I honestly feel that I am dying. Even in the mornings when I feel ok, I worry about what the night will bring.

As well as the tiredness, I get all this back pressure in my throat from my leaking tricuspid valve, I also get a lot of pressure, like I am being choked. (This usually starts in the late afternoon, or earlier if I have "overdone" things). If I bend over to pick something off the floor, the choking feeling is 100 times worse and I feel like my head will explode. Also I have a sensation of discomfort and fullness in my liver area. (I did have a scan done of this area, but it all looked ok).

I have written to my consultant to tell him all this, but have not had a reply. I have a routine OP appointment a week today. I am hoping my husband will be able to come to it with me, so that he can say how much worse I am now. I fear I may be written off as "neurotic." Strangely, I do not feel depressed or particularly anxious, just downright ill.

To be entirely frank, I feel as bad, if not worse, than before my avr in November 2002.

All routine blood tests are fine. BP fine, but a little on the low side, 110/60 last night.

Given that I have got an appointment at my Consultant's next clinic, there is not a lot I can do except wait.

I should be really grateful for any input, particularly from fellow tricuspid sufferers.

 

[Mb]

Dear Jane:

My husband also has severe tricuspid regurgitation. He also has two St. Jude valves, aortic and mitral. He is in a-fib...takes lots of meds. He is also very fatigued.....most of the time. He takes it easy..................a lot. He has what is called "extertional limitation", due to the a-fib. The meds do not control his heart rate upon exertion. That being said, he does also have the "fullness" in his throad. His liver scan showed an enalrged liver, but he has never complained about discomfort in that area. He east much small portions now, however. He suffers from GERD as well, so who knows where that discomfort is actually coming from.

So, all of that being said, it does sound like your issues are coming from your heart disease. It also sounds like you do take care of yourself....resting when tired, etc. Please let us know how you make out at the Dr.'s office.

I know my husband has been told that one can tolerate tricuspid regurg. a long, long time.

Marybeth

 

[hensylee]

Hey, Jane - we missed you. But, then, we all know where 'home' is when we have a heart issue.

I am so sorry to hear that you are feeling so poorly, but glad you have an appointment next week.

May I suggest you write all the symptoms down to take with you. Keep a small diary every day to show to your doctor. Copy what you have written here and take it to him/her. The doctor needs to know every symptom you are having. It sounds like entire truth to me. And you must make the doctor see it.

I wish you the very best. You have been on a long road before now, but you mustn't give up. There's gotta be help for you, even if it's medication. We know your system over there is slow and overcrowded, so make the most of your visit. Try to get your husband to go, too so you are armed with extra help. Don't leave until you get your story across. If your dr tries to dismiss, say "but wait, I have another question" - then do it again.

Love Ann

 

[Nancy]

Hi Jane-

I am so sorry to hear that you aren't feeling well at all.

My husband has had all of the symptoms you are speaking of. He also has a tricuspid that is incompetent. But that wasn't his main problem.

He was suffering from pulmonary hypertension for several years, and it was severe. In his case, this is what caused his distended neck veins, the feeling that his "head was going to pop off" when bending down, his weakness and severe fatigue, his distended liver and also spleen, his shortness of breath.

PH is a condition that used to have a poor prognosis, but in recent years, things have changed and there are now some wonderful new treatments which help. My husband was put on Tracleer (bosentan). It takes a little time to work, several months, but now he is able to do a mile on the treadmill, and his PH pressures are now in the moderate (instead of severe) range. His condition and symptoms are all much improved, even though his tricuspid valve is still incompetent. There are also other treatments for this disease.

His former cardiologist chose to ignore this condition while it was becoming severe, and it almost cost him his life.

PH showed up in all of his echoes for several years, and it even showed as severe. I was able to get him to a specialist just in time and he did spend a month in the hospital, But that straightened out the PH and many other serious conditions which co-existed with the condition.

I think in view of your symptoms, it would be prudent to at least ask your cardiologist to look into the possibility of this condition. It may not be what you have, but it should be explored as well as any other cardiology problems. It sounds as if you really need to be proactive to get the help you need before something happens. Don't let anyone ignore your symptoms. This is the only life you have. Guard it with passion.

 

[Jane]

Thanks!

Thanks!

What a relief to hear from people who know what I am talking about!! Thanks for taking the time to reply. I will print all your replies out and read them through more carefully. I am in the public library right now.

I just feel that the GP hasn't got any idea of what I am on about and is deferring to the Consultant all the time. I feel that he thinks I just sit at home dwelling on how I am feeling, which is just not the case. I have plans each day of what I would like to do, and try to carry out these plans, but mostly I have to abandon the plans due to feeling ill, or I carry them out and feel awful afterwards.

I hope to get to the library before my op appointment, but if I don't, I will definitely let you know what happened.

 

[Jane]

Just to say, I had my op appointment yesterday. Consultant wasn't there, so had to see his understudy. Had a job persuading him that I knew what I was talking about, but got a result in the end. Am to have a sort of stress echo - not sure of the full name. After last year's experience of waiting for an echo, I'll be lucky to get it in the next 6 months. But you never know, I might be lucky.

Thanks for your help, folks.

 

[Harpoon]

Yeah, been there....

Especially with the throbbing neck veins with the tricuspid valve regurgitation.


Mine was so bad anyone looking at me could see it.

I had gone on an ACE inhibitor when it first crept up and that seemed to bring the throbbing down but it came back as my heart got worse.

I received a St Jude's valve just a few days short of a year ago now and all of that stuff that you're feeling now is gone, quite a nice feeling, though it was a heck of a ride getting there.


Talk to your doctors, make sure you're talking to THEM not some "under-study"

This is your life and you don't need to be talking to folks that aren't up to speed on yoru case.

Take notes if your husband can't join you and if he can, make him take the notes. =)

Good luck with the stress echo.

They'll run you through the basic stress test then perform an echo right away to see what the heart looks like when it's being exercized... That gives them a better picture of what changes are happening wthin your heart when you excert yourself.

 

[Georgia]

Hi, Jane

Hi, Jane

Haven't been online as reliably as I had previously - hubby is transferring home pc service to some kind of fastfastfast (but the transfer is going slowslowslow) so I've only been on at work; and unfortunately, my work seems to constantly interfere with my vr.com surfing.

I'm so sorry to see that you're having problems again. I know a bit of what you're referring to - I had the tricuspid issues and the neck vein things. Mine wasn't so bad that I had choking feelings, tho - how scary.

I do hope you get the help you need pronto. I'll be thinking of you and saying a prayer or two.

Hang in there.

 

[Jane]

Thank you all so much for your help and support. Strangely, I am not so bothered about waiting for the echo as I was this time last year. I feel much stronger psychologically than I did then. Don't know why. Am going to lose weight in the mean time, and get as fit as I can within my capabilities. Who knows - it may just help the symptoms. If not, and I need more surgery, then being fitter and leaner will improve my chances of a good outcome. How positive is that?? I'm sure my confidence and +ve attitude is largely down to all your help, plus reading other members' problems and the advice you give to them. Thanks again.