Guess it is time to join the ranks...

[KristaDeAnn]

Hi Everyone,
My name is Krista and I just turned 40 years old in January . I went to the doctor in Feb because one of my eyes was getting red for no apparent reason. My doctor wasnt available so I said I would just see whoever was available.. Enter Dr. Ghi... He looked at my eye and then listened to my heart..and then he asked me "Do you know you have a heart murmer?" Thinking he was mistaking me for some other patient I told him "No, Im here about my eye". That was when he said "And you have a heart murmer". Not to mention my blood pressure was 170/90. YIKES!! I hate going to the doctor and figured that accounted for the spike in my blood pressure. I have never been seriously ill in my life, nor been in a hospital, or had surgery! I barely made myself go yearly for my OBGYN appointments...

Baffled and confused I sat there staring at him like he was nuts.. Im sure he could tell by the blank look on my face I had no knowledge of the "murmer". He called for my chart...Oh well low and behold my OBGYN noted it LAST YEAR. Wonder when she was going to get around to mentoning it to me. Waiting for a special occasion I suppose.. Hmmmmmm

Because of my blood pressure he said I should do some blood work...and wondered why for 8 years there wasnt any previous blood work results. Hmmmm I think those referrals went in the trash some how. (I realize now that was really stupid of me, like if I didnt go nosing around in my blood nothing could "get" me either.)

It took me 4 weeks (he wanted me back in a week) before I got up the gumption to get the blood work done... he said he wanted me to have an Echo too.. A what?... Well the blood work came back with everything fine EXCEPT one test indicated I had an "inflammed heart". Still in denial I started asking everyone at work if they had murmers, and was astounded to find that the first two people I asked said they did have a murmer. I was thinking "geeez is the entire world walking around with heart murmers?" What the heck was going on?..

I went and had the Echo not realizing I had to go the DREADED hospital to have the test done. I was ready to run away screaming..but I made it through convincing myself that I was just going to have a murmer like everyone else. You can imagin my shock when the cardiologist came in and informed me that I have a severely leaking mitral valve and a mod leaking tricuspid valve and that I was going to have it repaired/replaced with Open Heart Surgery.... You have got to be kidding me I feel just fine...my eye was red...

I felt like I was caught in some kind of conspiracy or something. Well it took me about 10 minutes to remove my dropped jaw from the floor and by then the Cardiologist was gone. My blood pressure that day was 199/133 I kept thinking I was going to explode any minute.

When I went back to my doctor and he said "you know this is very serious..we need to get your blood pressure under control immediately.." I still felt fine and couldnt believe this was happening. Luckily I had about 2 weeks between appointments to digest the each new batch of bad news. But this seemed so unreal.

Needless to say I have FINALLY come to terms with the fact that I have a a leaking heart. Still no symptoms that would of made me say "Gee something must be wrong with my heart".. Funny thing though...that eye was never red again and it had been that way for 2 weeks.. Devine intervention I suppose.. something had to get me to the doctor before I just dropped dead somewhere.

I have met my Cardiologist Dr. Bansal @ Loma Linda University Medical Center in San Bernardino. (Funny I picked this as my hospital when I enrolled in my health insurance plan...how lucky is that?) I live about 20 min from there.
He said my heart is in great shape except for the valve problems so I guess I should be thankful for that.

The surgery is at this point elective..but I cannot function normally knowing this is looming in my future..so Im electing to get it overwith ASAP. I meet with my Surgeon Dr. Wang on the 14th and I assume a date will be set some time in the near future at that time. I have never been a patient...Im not good at it..and Im such a scatterbrain now that I know I have to do this....

Has anyone had surgery at Loma Linda...

They are the "Heart Institute" Dr. Bansal told me. Guess that was supposed to reassure me. Im afraid Im going to come out of this a pumphead from the bypass machine....What a terrifying thought.. I have a great husband who will be an awesome caregiver..we both think the other one is "taking this rather well". Or we are both in denial, Im not sure which yet.. I have just resigned myself to the fact that I cannot hide from it....it is the deck I have been dealt. But terrifying none the less.... YIKES!!!!

Well that is my story, glad to meet everyone here.. nice to know there are others in the same boat...and survivors too. That is somewhat of a comfort, I cannot say that I know one single person that has had to have heart surgery and I wish if I was going be the one against all odds...it would of been at the state lottery and not heart surgery.. Sheeeeeesh
Hanging in there...by a thread..
Krista

 

[carista]

Hi Krista! Carista here It's a good thing you found the site, it will help you out a lot I'm sure, it sure helped me out. I understand the shock value when you first find out you have to have open heart surgery. I just found out this February and my jaw pretty much dropped to the floor also. I'm not a doctor or hospital person either. But look at it this way, it's fixable and thats what matters right? Anyway, just wanted to say welcome! You'll be getting plenty of good advice here!

 

[geebee]

Krista,

Welcome and quite a story. I was surprised the first time I was told I had a murmur but I had a few years to get used to the idea of surgery before it actually happened. However, I am not so sure you are not luckier. Get it over with quickly and get on with your life.

I am sure you will come to find out that OHS, while still serious, is very common these days and carries very little risk. It is a painful recovery but that's what pain killers are for and you will have access to those.

I cannot address the hospital question but hopefully someone else will chime in.

Biggest decision - what kind of valve do you want. Talk to your surgeon, look at the posts here and you will be able to find the right one for your needs.

Good luck and don't be shy.

 

[Barry]

Good they caught it early on, despite the medical SNAFU's and poor communicat ions. If you've been lurking here a while, you've probably found some threads that speak to the theme of sooner better than later, and many threads on figuring out what kind of valve to get, how to deal with Coumadin/Warfarin, etc.

I'd actually be more concerned about your BP than the valve. They can fix the valve. Are they able to fix your BP?

My experience has been that's pretty typical, and to get decent medical care you have to be a pretty active participant in it, pay attention, and find that fine line between being assertive and being a pest.

 

[catwoman]

Krista:

Many of us were equally shocked when we were told we needed valve surgery. (I asked the cardio, "Are you sure you can't just give me a magic pill?" and I meant it!)

You may actually be experiencing symptoms now, but not just be picking up on them. In retrospect, I had symptoms for a number of years before my heart went zooming downhill. I was diagnosed with MVP when I was 39, although I remember doctors commenting over the years about hearing a murmur. My PCP heard it in 1990 & sent me for an echo to confirm what he heard.

Your blood pressure problem may be caused by your valve problems. I didn't have BP problems until spring 2003, when it was 140/90+. Post-op, it's been 102/70 or sometimes in the 60s -- and I'm not taking any BP meds.

Investigate the options for valve replacement in case a repair doesn't work.

This is a great place to vent anxiety/frustration, ask questions, learn, etc.

 

[KristaDeAnn]

I guess I should add..the damaged valves are due to Rhuematic Fever... When the doctor asked me if I ever had it...he might as well of asked me if I ever had Consumption!! Never heard of it..neither has my mother..so that means I had it and didnt know it.. I was the tonsillitis kid though. Numerous bouts with it, and one time ended up in convulsions. (Wouldnt of known that there was a connection but I have been reading everything I can find everywhere on valve disease) That is how I ended up here.

The blood pressure currently is under control. 50mg Cozaar, baby aspirin and Coreg... Currently running about 117/57 sometimes a little higher but MUCH lower than 199/133...YIKES!! Doctor said I must have had the high BP for awhile because there is a small thickened spot on each side of my Mitral valve. Luckily that seems to be the extent of any further damage.. (well at least what I could gather from the mumbo jumbo verbage on my echo report anyway)

I have a question... I believe the Surgeon said that even if he repairs the valve the the Rhuematic Fever will continue to damage the repaired valve thus the need to replace it somewhere down the road????? Does that sound right or did I not understand what he was saying? Does the disease just continue to damage everything until it is unrepairable or does it only affect the valves it has already damaged?

 

[dawnwit15]

Welcome

Welcome

Krista:
Welcome. You are not alone. I found out about my mitral valve problem in the same fashion as you did----by complete surprise. I went through 29 yrs of life with no mention of it from any doctor until I started experiencing symptoms. Did you experience any anger? I was livid at the fact that I was active all my life, went through a police academy that required me to pass a medical screening and yet no one saw a problem? I did exactly what your doing now. I dealt with it immediately. Get it over with. The longer you push it off, the more time your mind has to build anxiety. Like you, I rarely ever saw a doctor unless it was my yearly check up or yearly OBGYN appointment, so when hit with the news of open heart surgery, I too was in shock and disbelief. I've been through one minor heart surgery (valvuloplasty) and one major (open heart) since the news hit. Hopefully I'm done.
Hang in there. You will get through this. Everyone here at this site can relate to what your going through and we are here for you. Don't be afraid to get a 2nd or even 3rd opinion also.
Best wishes to you & I will keep you in my prayers.
Dawn

 

[Barry]

...I have a question... I believe the Surgeon said that even if he repairs the valve the the Rhuematic Fever will continue to damage the repaired valve thus the need to replace it somewhere down the road????? Does that sound right or did I not understand what he was saying? Does the disease just continue to damage everything until it is unrepairable or does it only affect the valves it has already damaged?

deboraginastewart stated in a post that she'd had rheumatic fever, you may want to PM her if she doesn't post a response here.

 

[bvdr]

Hi Krista,

Welcome to this forum. I too had rheumatic fever as a child though it was undiagnosed at that time. I was told pretty much the same thing about rheumatic fever. It is an ongoing inflammatory process that continues to cause damage. I was told that badly damaged rheumatic valves are not worth repairing and should be replaced. But just because the RF is a slowly progressive disease does not mean it will start to involve valves that are currently not involved. And sometimes the tri-cuspid valve leakage is a result of the mitral valve problems and greatly improves when the mitral is replaced. Sometimes it needs repair or replacement though but it is a candidate for repair since the damage is more than likely from the pressure changes within the heart than the rheumatic process itself. I hope that makes some sense to you.

There are quite a few of us here on the board because of rheumatic heart disease. This is a great place to be and I hope you make yourself very at home here. Don't forget to check out the resources forum here as it has wonderful sources and links.