Hello, I have much to learn

[bvdr]

Hi,
My name is Betty and I have been recently diagnosed with Rheumatic Heart Disease. I have mitral stenosis, (mva l.6,
LA 5.3), mild mitral insufficiency, moderate AI, moderate TI. and some PH. I was in Atrial Fib but now back in Sinus Rhythm while on cardizem and tamborcor. Thank-you so much for your forum. This whole thing has kind of thrown me off balance. I am 54 and just thought I was very out of shape. The final straw was some respiratory infection that I couldn't handle- so short of breath! I never even knew that I had had rheumatic fever. Anyway, I've had all my tests including a cath and I guess we're just waiting to see what happens. I feel like I'm on hold. How long did some of you coast along without much happening? I'm SOB and tire out really easily but mostly I'm concerned about how much I find myself thinking about this. Did any of you go through the same thing? I don't even know which valve is giving me the symptoms or if it's a combination. Do bad valves have a cumulative effect?
Thanks for your help. Betty

 

[Georgia]

Hi, Betty. I'm a newbie too - had surgery last month and just visited this site for a while before I felt I had anything to say.

There are folks here who are simply astonishingly knowledgeable about all of this stuff. I wish I'd found this site before I had surgery.

I can tell you this: I'm sure you're obsessed by your disease. I certainly was, but I only had to wait 10 days for my surgery. I'm not sure how I'd have been if the docs said I had to wait indefinitely.

I'm 53, and had a mitral valve replacement and a tricuspid repair. I was just like you - thought I had gotten out of shape; but everything really fell apart the first two weeks of January. And I couldn't lie down to sleep anymore.

I know you'll get great advice and counsel here; as well as making as many new friends as you want. And you'll also have a lot of laughs.

I think you'll be delighted at the response your posting will elicit.

Welcome. And happy Spring!

Georgia

 

[Nancy]

Hi Betty-

Welcome to this terrific site. Everyone here gets it as far as this surgery goes, and way beyond that. It's a wonderful group and you have lots of cyber friends already.

Here's a site that gives the different valve problems and what symptoms they exhibit.

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/23659.html

There are several people on this site that also never knew they had rheumatic fever, but later in life started having valve problems.

My husband is also a victim of rheumatic fever. He had it as a teen. He knew all about it because he had to spend a year in the hospital. This was just as penicillin had started being used. However, he wasn't given it.

He's had 3 valve surgeries, has a pacemaker and has had 2 lung surgeries as well. Plus he lives with several chronic and very serious conditions including Pulmonary Hypertension, Congestive Heart Failure, Atrial Fibrillation, Hemolytic Anemia, and Cardiac Cirrhosis. But thanks to this surgery and some excellent medical care, he is still alive. He's 71 years old now, and his aortic valve is 25 years old. Years ago people with his conditions would not have survived.

I'm happy to say that his problems aren't the norm by any means, and the vast majority of folks who undergo this surgery do very, very well, and go on to live a near normal life.

I hope we will see you here often. There is much to learn and we'll help you through the rough spots.

 

[Kevin M]

Hello Betty.
If you've had the cath, then they should have a pretty good idea shorly afterwards because that is one of the definitive tests to see if you need repair/replacement.

They may send you for a TEE (transesophageal echocardiogram), which is just a fancy way of saying an ultrasound taken from the inside. They freeze your throat and sedate you and then put a tiny camera down your throat. I think they use this to take some measurements. They may not give you this test.

When did you have your angiogram? Your cardiologist should get back to you soon after that. If not, don't feel bad about calling and putting some pressure on them. It's your health and sometimes you have to apply a little positive reinforcement to get what you need.

It sounds like you've had some pretty debilitating symptoms. Many of us notice a drastic improvement within a week of having a valve replacement. Others do not notice a lot of change. I think it depends partially on your condition. After my first operation, I felt like a new man. After my second, the improvement was far more gradual.

This is a frightening thing to go through, but if you stick with the people on this forum for help and support, it may make you feel better. Sometimes it is just fear of the unknown that gets us.

The waiting is a killer. Do your best to be patient, try to stay relaxed. Once you know what you need done, it will also put you at ease because at then, you can prepare yourself.

We're here to help, so don't feel bad about sharing your thoughts and feelings and ask as many questions as you can. Many people here have gone through a variety of procedures or have supported and cared for their ill spouses, so you've got every aspect of a support group built right into this website.

Incidentally, the fellow you most want to thank is Hank. He's the guy who built this wonderful lounge where so many of us hang our hats.

Take good care and try to relax. Let us know as you learn more about your condition.
Keep well,
Kev

 

[Nancy]

Hi Georgia-

Just wanted to say welcome to you as well. I know you are new here, but not new to surgery. I hope you are enjoying our little home on the Net.

 

[bvdr]

Thanks for the encouragement

Thanks for the encouragement

Thanks for the kind responses. I have the feeling I'm going to hang around this site for a long time to come. You have made me feel very welcome. I hope you all have a really good day. Betty

 

[pegne]

Betty

Betty

First of all welcome. Read and learn. Take in this wealth of information. There are people here who have much experience with what you are going through. I personally coasted along for about 12 years without anything happening. I was diagnosed at the age of 6 and my first surgery was when I was 18. I guess I was lucky because I was so young I did not know what was going on for a long time. Good luck to you. Georgia, I want to welcome you also. Whenever you guys need the comaraderie of other heart patients please lean on us. We are here for you and we care. Peggy

 

[Georgia]

Thanks to all for the welcome.

I think one of the things that's been the most valuable in this forum is giving us a basis for judging our care. I'm sure a lot of you folks were like me: had no past experience with cardiologists or cardiac surgeons (for which I thank God) and didn't really know what to look for. I was in the same boat 14 years ago when I had cancer; and a dear friend steered me through the dangerous waters of choosing a surgeon, an oncologist, and taking control of that disease.

I didn't have anyone here to lean on for this; further, everything happened so fast because I'd gotten so sick that frankly, I had to go with those I got and hope all was well. Fortunately, Springfield has a remarkably good group of cardiac physicians and it's truly the case that poor heart docs are run out of here on a rail. I did what research I could on line and from word of mouth, and I did well.

In comparing the treatment, surgery, care, etc., I got to the information I picked up on this site, I'm really comfortable with my docs and I think I'm a much better patient now.

Thanks to all, and certainly primarily to Hank.

Georgia

 

[epstns]

Hi Georgia!

Welcome to your new family. Seems that there are lots of us here in Illinois.

Also, I think you have such good care locally because so many of our state lawmakers are periodically in need of cardiac care. We value them and their contribution (yeah, even George R.) and the community takes good care of its own.

Again, welcome -- and be well.

 

[Georgia]

Very likely true about the cardiac care available. In fact, we have a legislator in our cardiac rehab class when they're in session. A gent from your neck of the woods - Bolingbrook. A not-friendly type; of course, none of us can vote for him.

I've noticed the large number of Illinoisans - makes you wonder.

Appreciate the welcome. Nice bunch of folks.

Georgia

 

[Bunny_Rabbit]

Hi Betty I've also been diagnosed with Rheumatic Heart Disease, and I to didn't know that I had even had Rheumatic Fever. I'm 29 years old and this came as a complete shock to me.

I had a Valvuloplasty done on my Mitral Valve in Sept. to help my stenosis, and that's worked for me thus far. As far as the wait, I've been told that it could be 10 years (give or take) before I need a valve replacement...or another Valvuloplasty. When I was first diagnosed last year I was obsessed with the disease and PH (which I also have). Not a moment went by that I was not thinking of my heart. Every ache and pain would worry me and freak me out. I think thats natural, but you do get over it in time.

I'm still active, I play hockey on a team every week and I've been trying to go to the gym regularly. I guess all is not lost.

I still find myself, from time to time, waiting to get worse. But I try to snap myself out of that and think about how lucky I am that I found out what the problem is.

Take care, and welcome to this terrific site.

 

[sylviayasgur]

hi betty!
hi georgia!
welcome to this wonderful site. as you can already see, it doesn't take long for us to come forward andhelp.
everyone here is so supportive and caring, i could never have made it through joey's surgery without their help.
betty, please let us know what your test results show.
in the meantime, we are here for you.
be well, sylvia

 

[bvdr]

?more tests needed

?more tests needed

Hi, just a quick update. I got some reports back today. Seems there is stenosis in a left coronary artery plus spasm. Also some spasm at the opening of the Right coronary artery. My cardiologist said for me to considering intravascular ultrasound and pressure wire assessment if some angina I've been having doesn't go away. The cardiologist has mentioned that my mitral valve isn't very calcified so I might be able to be ballooned- said Duke(about an hour away) is the closest center to us that does that. My medical doctor suggested Eastern Carolina Medical Center where many more valve procedures are done. At this point there are no more scheduled appointments or tests. The good news is that my left ventricle is in great shape! I guess the next move is up to me. I hope everyone is having a good day. -Betty

 

[pegne]

Betty

Betty

Wonderful news. The balloon is just like an angiogram. You will be up and about in just a couple of days. Will keep you in thought and prayer. Peggy

 

[Swill]

Will will ?

Will will ?

Of course Will will keep her in his prayers .

Best of luck (and prayers!)...

Will