Some questions?

[ILoVeNY25]

Hi my fellow heart buddies,
I have a few questions I would hope anybody could answer for me. The first one is What are the symptoms of A-fib? I had 4-5 echoes since surgery due to the bout of pericarditis, Haven't had one since July. I also have not had one EKG, I was hooked up to heart monitors during sternal wire removal. Heart rate reached 120 at sometimes. I was taken off Toprol XL in July and when I saw my surgeon last week he asked why I was taken off it by my cardiologist. I will see her in beginning of Oct; I also wanted to ask people's opinions, To recap...I had misdiagnosed rheumatic fever ( I'm in the middle of talking to a lawyer about the misdiagnosis by my pedictrician when I was 13), And had 2 mechanical valves AVR/MVR and tricuspid repair. As you all know I'm only 19 and worry that 30+ years I'll only be in my 50's, They say the valves will "last a lifetime" but being so young I fear I'll have to do this again. 30+ years isn't good enough for me. And also I have fears that my tricuspid valve repair will not hold for my lifetime. I know I'm the young'un and most of you don't have to worry about having 2nd surgeries after having the mechanicals put in, But this worries me. I was also wondering is there anyone on this site, who got pregnant while having a mechanical valve, Not that I'm thinking anytime soon, But it's a big part of my dreams is to have a child. But from what I've read it's not impossible but very risky??!! Anyone here have any advice, support or information for the young'un? Thanks so much, Sorry for the long post. But once again I want to thank you all for the support and comfort you've given me and others. We very much appreciate it, I know I do. Thanks!

 

[sonya489]

Hi,
I have a question it seems to be common for people to have had rheumatic fever which I understand is caused by streptocholi(SP) bacteria correct? Well how do you find out if you ever had it is it a blood test? I have twins boy/girl that are your same age you are so young to be going thru this.
C-YA
Sonya

 

[hensylee]

Mornin Nicole - It breaks my heart that you are having to deal with these sorts of problems when you ought to be out roller blading, going to college and all that stuff young'uns do, without having to worry about 30+ years from now and whether you can ever be a Mommy. And you are doing it with such maturity. I cannot answer your questions, but I sure can empathize with you. There is such combined experience here that I am sure you will find some good answers coming your way. God bless, Child

 

[Stevo]

I could write you an answer on the Atrial Fibrillation issue, but it's very long winded and I'm lazy, so I've found this for you instead!

Atrial Fibrillation FAQ

As for the other questions, afraid that that is pharmacology, on which I wouldn't really like to comment.

Regards,
Steve

 

[sscholz]

Hi Nicole...

I too had Rhuematic fever twice in my youth... Once when I was in 4th and the next year when I was in 5th grade... Needless to say, I did not know I had it. Needless to say my aortic valve was toast with the mitral needing repair. I had my aortic valve replaced in 1976 with a porcine valve. 8 years later another porcine. That one lasted 16 years, til 2000 when they put in a St. Judes Aortic and repaired the mitral. I must say the third time was not as bad as the first 2. I can't say I am really worse for wear and tear, other than having the surgeries I have had no other maladies, and have lived a fairly normal life, interupted of course by the surgeries. I find that I plan my life between the surgeries, kind of like the 20 year plan. Hopefully I won't need any more, but like yourself, it does cross my mind. As far as having kids, there are inovative OBGYN;s out there, but it is also one of the most litigated fields for malpractice. So finding a doc to help you out may be difficult.

 

[ALCapshaw]

Hello Nicolle,

I infer from your comments that you have not had a A-fib event before so I'm wondering why you are concerned about A-fib now.

I had an A-fib event while still in the hospital following my AVR which resolved after a few hours (and their A-fib protocol of digitalis) and two events around 12 weeks post op. These were characterized by a very high Heart Rate (150 to 200 beats per minute) and an irregular beat (skipped beats, extra beats). It saps your energy and the first time or two can make you rather 'apprehensive'. I went to the ER
for the first one where they basically put me on a monitor and waited for it to convert, which it did after a couple of hours. Two days later I had another one, took an extra dose (25 mg) of Toprol XL and waited for it to convert, which it again did after a couple of hours.

What dose of Beta Blocker are you on? I was on 100 mg of Toprol before surgery but got 'tired of being tired' so my cardio weaned me from it, dropping down to 50 mg for two weeks, then 25 mg for two weeks, and finally going 'cold turkey'. Ten days later, I had PVC's
(skipped beats) and he put me back on 25 mg which prevented further occurances.

What valves do you have? Check the manufacturers website for durability information. I believe the St. Jude Mechanical Valve is rated for several lifetimes. Even if you need a second surgery in your 50's, that isn't a 'horrible' risk. Most people that age do quite well although there is a slightly higher risk due to it being a second surgery. I realize this may not be very comforting. Since your valves seem to be working well for you, I think the best thing would be to put those concerns (and anxiety) out of your mind for awhile and enjoy life.

Best wishes for a happy and healthy life,

'AL'

 

[Nancy]

Hi Nicole-

Your post makes me feel so sad. Rheumatic fever is such a devastating disease. Joe also had it when he was a teenager. He was in the hospital for a year. Penicillin was just starting to be used and not the common antibiotic. He was on sulpha drugs, They didn't work as well, and his heart was damaged.

He's had quite a struggle for many years, but he's 71 years old, and in spite of all his medical problems, he's still alive and doing OK. Several of his friends have passed away from sudden cardiac events. It always freaks him because he can't believe that he's still here.

I think the fact that he has been monitored very carefully over all these years has allowed him to live a long life. He was not supposed to make it beyond 50. He has excellent doctors and they really care about him. They all work well together in a sort of loose network to help him. He also is totally unafraid of having interventional procedures because basically without them, he wouldn't be here. The other thing we do to assure that he gets the help that he needs is to be very proactive with his care. If he presents with any unusual problem, he calls the doc ASAP, or goes to the ER. We just don't wait around. I recommend this for you also. Your conditions will complicate even minor things.

So I feel you will have a long life. Just be extra, extra careful with yourself and get the best docs you can.

Wishing you all the best from one of the old "uns".

 

[Gnusgal]

I can relate, sort of...

I can relate, sort of...

Hi, Nicole (that's my name too! ).

I thought I'd write and let you know that I can relate in many ways to what you are going through. My heart problems aren't due to damage done to my heart from an illness, I was born with them. So I probably had more time to adjust to the idea than you have had, but I don't know that I'll ever be fully adjusted.

When I was growing up I always imagined myself having kids. I'm a teacher now, and around kids all day that I call "mine" but aren't really. When I was 20, and wanting to go on birth control a doctor told me "No doctor would want to touch you with a 10 foot pole if you got pregnant." I was devistated and in a deep depression for several months afterwards (and never went to that doctor again). I wasn't asking him if I could have a kid, I was wanting to prevent it, but it opened my eyes to the fact that I may not get to have the life I had originally envisioned. But when I was 21 I had surgery to correct some of my heart defects. After the surgery I asked my cardiologist what he thought the likelyhood of my being able to have a baby in the future looked like and he said he was "cautiously optimistic". I got my hope back, but was afraid to ask the question again when I got married for fear the answer would go back to the one I didn't want. Then my tricuspid valve became a problem and we were looking into valve surgery. I did my research and know that pregnant women should NOT take coumadin. I know it is possible to use other forms of anticoagulants, but I didn't want a mechanical valve because I wanted to be able to have children. Unfortunately, I wasn't given a choice. My surgeon decided for me (didn't even ask my opinion) and I got a mechanical valve. I've been on coumadin for two and a half months now, and I can't say that I've fully accustomed myself to the idea that having my own children won't be a possibility (not necissarily the case for you), but my husband and I are dealing with it slowly. Please contact me if you would like to talk about this issue.

Also, being quite young when I recieved my VR, there is the fact that another surgery is in my future. Unfortunately, I don't imagine it will be as easy as just getting another VR. I know that someday I will have to have a heart (probably heart/lung) transplant. This is not something I've completely accepted yet, either. It is something I think about, but I don't let it dominate my thoughts. If I did I don't know that I would be doing half the things I do. I know I would be in another deep depression, so I don't let myself think of the negative aspects. Yes, I tell myself I will need a transplant. But I only allow myself to think about the fact that it is quite a ways away and technology is leaping farther every day. I tell myself that by the time my heart needs replacing they will have this whole thing figured out to the point that it will be the LAST surgery I'll ever need, and may even be to the point that I wouldn't need meds (one can hope). Having had seven heart related surgeries (two open heart) in my 25 years, I'd say one more wouldn't make much difference, but it's difficult just the same.

Please feel free to write me personally if you want to talk about anything at all. [email protected]

 

[Christine]

to both nikki's - being young and having a AVR and coumadin... at 35, living with a 45 yr old who has 2 daughters of his own (not living with us) i pretty much accepted the fact that i would not have my own, and was ok with it.. but now that i had my AVR 3 months ago and now on coumadin, i went thru a brief morning process that now i know i won't be having any kids.. before there was always that possibility.. i'm ok with it now.. everyone once in a while it creeps up in my mind, but then i pray and move on..

as far as another surgery.. being only 35 i too am looking at the possibility of a replacement.. i simply don't dwell on it. i know that sounds easier said then done.. but my faith has gotten me thru all this and it's my faith that will continue to do so..

to nikki whose 25.. do you go to that labcorp on 15th? i do and hate it.. slow and rude - was just courious..

christine

 

[Jessica_B.]

On the pregnancy issue

On the pregnancy issue

After an extensive history with heart disease, including two valve replacements, I had a heart transplant a year ago. Now in my mid-20s I would really like to have kids but I early on got the impression that it would just be impossible. My regular ob/gyn said no way! with the drugs I take no child in this world would be born healthy by me. The immune suppressive drugs cause birth defects, impaired immune systems along with other horrible things. I was also led to believe that the regimen could not be altered for the duration of a pregnancy. Or so they said. At the insistance of myself, and my regular OB/GYN offered, I was sent to a ob specialising in high risk pregnancy. She said it can be done; I could get pregnant I carry full term but it would take some effort. The jury (my husband) is still out on whether we should and will try to conceive a child naturally.
Try to get a referral to a high risk ob/gyn and take it from there. If the high risk doc says cannot be done... well, then you just have to find a fulfilling life without kids, soooo totally unfair I know, but well, you have to play the hand you've been dealt. I hope that that does not sounds too perky because I have been anything but perky about the risk that we would remain dinkies for the rest of our life!

/Jess