Must have AVR

[Sharon4495]

I'm new to the site. I found out about 8 years ago (I am now 48) that all of my heart valves leak -how they got that way I don't know! I have had careful monitoring since that time. This past February after my annual echo my Doc told me that he wanted to begin seeing me every four months because the leak in my aortic valve went from moderate to moderately severe. My next appt was this past July and the leak is now severe. My Doc perfomed a TEE (never again) and immediately after he removed that tube from my throat asked me if I had any surgeons in mind. I didn't, I told him to pick the surgeon that he would send his mom to. I was told that I would have a surgery date in about two to three days.

Well, the surgeon wants me to take metropolol for six months and do another echo. I am very against taking the beta blocker. I currently take an ACE Inhibitor and a Calcium channel blocker. I have had several episodes of really low blood pressure in the past week. I am afraid the beta blocker will make it too low to function. I was but on Toprol 8 years ago but could not tolerate it. I am still working - I am a teacher - and can't imagine feeling anymore fatigued, lightheaded, and short of breath than I am now.

I have another echo scheduled for Monday Aug 11 because this past Wed I had the feeling on not being "quite right". Turned out I had another low blood pressure and a blood oxygen level of 84. I told my doc about my experience with toprol and he says that I may have to take it anyway even though I am really against it.

I looked up side effects and it could cause kidney damage (I have only one due to Kidney Cancer two years ago), depression which I currently take medication for, and diabetes - which I don't want especially because of my kidney.

I asked my doc to get a second opinion because I told him I couldn't imagine feeling even worse than I do now for six months, taking another med, and feeling worse than a slug just to have the surgery anyway!

Has anyone else been through this beta blocker I won't take merry go round? Can my insurance refuse to pay for treatment if I don't take it?

 

[Superbob]

I'm new to the site. I found out about 8 years ago (I am now 48) that all of my heart valves leak -how they got that way I don't know! I have had careful monitoring since that time. This past February after my annual echo my Doc told me that he wanted to begin seeing me every four months because the leak in my aortic valve went from moderate to moderately severe. My next appt was this past July and the leak is now severe. My Doc perfomed a TEE (never again) and immediately after he removed that tube from my throat asked me if I had any surgeons in mind. I didn't, I told him to pick the surgeon that he would send his mom to. I was told that I would have a surgery date in about two to three days.

Well, the surgeon wants me to take metropolol for six months and do another echo. I am very against taking the beta blocker. I currently take an ACE Inhibitor and a Calcium channel blocker. I have had several episodes of really low blood pressure in the past week. I am afraid the beta blocker will make it too low to function. I was but on Toprol 8 years ago but could not tolerate it. I am still working - I am a teacher - and can't imagine feeling anymore fatigued, lightheaded, and short of breath than I am now.

I have another echo scheduled for Monday Aug 11 because this past Wed I had the feeling on not being "quite right". Turned out I had another low blood pressure and a blood oxygen level of 84. I told my doc about my experience with toprol and he says that I may have to take it anyway even though I am really against it.

I looked up side effects and it could cause kidney damage (I have only one due to Kidney Cancer two years ago), depression which I currently take medication for, and diabetes - which I don't want especially because of my kidney.

I asked my doc to get a second opinion because I told him I couldn't imagine feeling even worse than I do now for six months, taking another med, and feeling worse than a slug just to have the surgery anyway!

Has anyone else been through this beta blocker I won't take merry go round? Can my insurance refuse to pay for treatment if I don't take it?

Hi Sharon,

Welcome to the Forum. Perhaps our administrator could move this initial post of yours into a thread of its own so more people will see it and respond. Or perhaps you could start a new thread with it yourself. Since you posted this some 14 hours ago, I'm just afraid not many people have seen it. Of course it is the weekend and things are a bit slower here then.

Sounds like you are being carefully monitored with an eye to having replacement surgery in the near future. Chances are very very good that you will feel much better after that has been done.

As for metoprolol, I can only say I have been taking it for a couple of years and have had no major problems with it. I think, though, there is a possibility my BP has sporadically gotten a little low and caused some light-headedness. I am trying to monitor my bp more closely and talk to my doctor about it at my next appointment. On the whole, though, I think it has helped. My bp usually is quite -- not in the high ranges any more.

You have definitely come to the right place -- once your post gets wider attention, I am confident you will get lots of great responses.

Again, welcome!

 

[Ross]

Bump for addressing.

 

[Sharon4495]

I have more facts

I have more facts

I had yet another echo today..now I'm told the regurg is moderate. My Doc did NOT put me on beta blockers...he was satisfied with what I am taking - HOORAY!

Even though today he said the regurg was moderate just last week I had the TEE and the reports say that the regurg is severe - I think the TEE is the most accurate test to go by. By the way..(someone asked on a previous post when I was on another thread about my TEE) I did have a driver and did rest all day - I just never felt, experienced, or was sedated - the doc used versed and fentanyl - it didn't work on me!

Valvular heart desease with severe aortic regurgitation with a premature closure of the anterior mitral leaflet.
Also noted was concentric left ventricular hypertrophy
Eject Fraction Left Ven 60 to 65%
Mitral valve regurg
Grade 1 Diastolic dysfunction on the pulmonary venous flow (?)

No measurements are on the TEE report but I did get copies of some echo reports and the one dated March 13th shows a few abnormalities but I need some education on what they mean...

Aortic Root dia 3.43
IVSd 1.24
LVIDd 4.8cm
LVPWd 1.3 cm
LV FS 45%

The March 13th reports says that the aortic regurg is moderate and the mitral regurg is mild. Tricuspid regurg is mild. Conclusion: Valvular heart disease with grade 1 mitral valve prolapse and moderate Aortic Regurg.

So, definitely the problem is getting worse. I just don't know what the measurements mean. I did do some Doc/Surgeon Research and found out several family member and friends have had Valve surgery - Aortic and others with Dr. Cooper - Everyone I spoke with had great confidence in him and he also has hospital privelages and the Kennstone Cardiac Center which is so much closer to me and family than Crawford Long or St. Joseph's. I did ask my Cardiologist to send my reports and CD/films to Dr. Cooper for a second opinion and we will hopefully hear from him in about a week.

So, here I am in the holding pattern again. I guess if the second surgeon agrees with the first I will just have to wait 6 months.

Also, yes, please do pray for me.

 

[Ross]

Thee TEE is most definately more accurate, so I'd go with whatever it indicated and not worry too much about the echos.

I pray for everyone, so your no exception.

 

[Cooker]

Welcome to the zoo ... Wishing you all the best

 

[DebbyA]

Welcome Sharon!

How frustrating for you to have to sort all this out! I hope you get a clear direction from the second surgeon. I'm far from a medical expert, but it seems to me that whatever test results you get, the fact that you have symptoms is important..."can't imagine feeling anymore fatigued, lightheaded, and short of breath than I am now."

You might want to check the Reference Sources section, in Must Have links for the link to "Management of Patients With Valvular Heart Disease".

Keep us posted.

 

[WayneGM]

Welcome to VR. Glad you found us. Best wishes and good luck.

 

[skeptic49]

Symptoms Big Time

Symptoms Big Time

"can't imagine feeling anymore fatigued, lightheaded, and short of breath than I am now"

Dear Sharon,

So sorry to read of your situation. I'm relatively new to all of this and I hope you can arrive at a real helpful strategy soon. Best wishes,

Jim