AVR 16 Years Later

[flex131]

Hello

I ran into this forum doing some search about AVR and Low heart Output. I had my valve replaced when I was 22 (St. Jude Mechanic Valve). Now I am 38 doing real well. I never really looked into it just went with the flow. My parents did all the talking and selection and I just went along for the ride. (Being young and naïve I was not that scared) Now a father of two, I wanted to know more. (Pretty scary what you can read in the internet.) I know my Aortic was replaced because one of my leaflets was crooked causing my heart to get large because of the leakage. It was found by luck, I had chest pain caused by a pulled muscle. Well 6 month ago I have my yearly echo when my cardiologist told me my output had drop from 55% to 43% this scared me, but told me not to worry and see him in 6 months (I always see him every 6 months and yearly echo.) Well it was the longest 6 months of my life. I had many sleepless nights and really scared. Well finally I saw him last week, we went ahead and did a stress test; this was my first stress test ever. Well I got good news. At rest my heart output went up from 43% to 48-50% after the stress test it was at 55%. I hope this continues to go up and back to normal.(Still a bit worried I wish it was at 55% at rest but i have to let it go) I was also sent home with a 24hour monitor, waiting on the results. I will post whenever my doc tells me his findings. I guess that is all I have to say for now. If you need to ask me anything, go ahead. I will be reading other post maybe I can give some insight from experience.

Thanks

 

[JeffF]

Thanks Flex for sharing. Let us know how the results come out.

I am going in for AVR in 2 weeks and have been going back and forth on which valve I want to go with. How has the warafin regimen been? Anything that you can't do? In a few months my wife is having our 2nd child so it sounds we have a lot in common.

Thanks,
Jeff

 

[flex131]

Coumadin is not as bad as you might think but you have to be careful. Your dosage will change allot at the beginning until you get stable. I have been steady with 6mg and 7mg alternating daily for 4 years. My monthly PT/INR level should between 2.5 – 3.5, I always shoot for 3.0. Important don’t change your diet this affect the level.
I have had real close calls too, from a clot that I lost temporally vision from my left eye to massive hematoma that almost needed surgery to remove the blood, all of this because I did not check it monthly. Both times I came out fine but I learn this is not something to play around with. You have to do monthly blood work, not a big deal you get used it. Everyone at the lab knows me so I go in and out quicker than an appointment LOL. Keeping your Coumadin under control and at the correct level you will have no worries.
Look, I did not stop playing sports. I play Volleyball indoor and beach every week. I play flag football, softball, spearfishing and scuba dive for a couple of months every year.(don’t do contact sports) In two month I am doing an 8 mile obstacle race called Spartan here in Miami looks like fun but I have to be careful. When I play sport I have a bag with me with compression bands and instant ice stuff, ready to go. What I am trying to tell you is that you can still do pretty much anything just be careful. I want my heart to stay strong so I stay active. I am not going to lie if you get hurt its three time as bad because the internal bleeding but I have my bag ready

Let me know if this helps or have more questions.

sorry left out congrats on your second child. My daughter Amanda is 10 and my son Matthew is 8.

 

[scott.eitman]

Wow! This is the kind of stuff people need to hear. I was actually told by a Cardio (not mine) while in the step-down unit that I should no longer ride my bicycle. He was old and should retire (or be fired). Yes it is a risk, but I would think that your sports are just as risky, if not more.

How does the bag (or stuff in it) get used for internal bleeding?

 

[flex131]

You do cycling, that is a great workout. I do it once in a while with my wife, she does Tri-Athlons so I join her group on shorter rides 30-40 miles. I took a nasty fall once, we were going around 20mph I was not paying attention and rubbed another riders back tire with my front tire and you know what that means, real quick fall. Luckily I was in the back of the group drafting (because I cant lead) so I didn’t take anyone down. I got a nasty road burn on my hip and shoulder but my calf took the worst of it. I think when I unclipped I hit the pedal bad. My whole calf was bruised. I wish I can post pick so you see. LOL

In the bag I have like 5 ace elastic bandage different sizes also 4 instant cold packs that you break and get real cold quick. I’ll give you an example that has happened to me allot. I turn my ankle playing (game over don’t keep playing) I quickly bandage it and ice it, rest it and keep it elevated. I will ice it for 24 hours and use crutches. This will help greatly in reducing the amount of internal bleeding. Now for serious falls don’t risk it go the hospital and tell them you are Coumadin. Sometimes even with bandages the swelling will get bad, you will have to go to hospital to get pain medication. I have hospitalized a couple of times because of bad injuries. FYI on vacation never play sports. I ruined a week cruise playing basketball; I turn my ankle the first day in the ship. I spend 3 days in the cruise hospital being inject with pain killer and the other 4 drugged up I had so much pain. I could have prevent allot of it if I quickly wrapped my ankle and ice it right away.

I don’t want anyone who reads this to think that Coumadin is not big deal, because it is. Injuries hurt ALLOT and can be dangerous. I have cried allot at night because the pain is beyond explanation. I am willing to take certain risk and yes I have been lucky too. Now 38 years old I don’t risk as much but I am still having fun. Remember everyone body is different and react to things different.

 

[scott.eitman]

Thank you. this is some great advice for those of us on Coumadin and more importantly for those looking to take the plung.

I have always assumed that when I go down (and I do) that I will be heading to the ER...at least for the first couple times

 

[flex131]

Not a problem, I am glad I can help others feel more comfortable about taking it or going to take it.. If you keep it in the range you should have no issues.

 

[flex131]

Sorry I have been out for a long time (busy). I wanted to update everyone... My doc put me on Lisinopril for two reasons, one for hypertension and two for low output. Well the good news my last echo my resting I was back to my norm 55%... On Feb 7, I made 17 years anniversary...

Still play sports but not as frequent. I have beat up my body pretty bad playing Semi pro Volleyball. My joints are not the same LOL.. But now I got into coaching volleyball on the side for Voliemiami. My Daughter now 11 is taking after dad..

 

[The mail man]

Hello Flex. I have a question if I may. Your cardiologist said your heart output is low, what is the reason for this? Congrats on the good news about your last echo, that's great news. Just a little advise, don't blink your eyes, before you know it your 11 year old daughter will have graduated college and be starting her first job. Ask me how I know. Tempus fujit my friend.

 

[flex131]

Hello Mail Man. This is going to sound weird but I didn't ask, I was scared of the answer. When I first got the results I was super scared knowing this could just go down hill. I was very depressed for a month until I snapped out of it and never looked back.. Don't get me wrong no matter what my valve always pops in my mind but I don't stress like I used too. . He always tell me not to worry and I trust him. He has been there since I was 18, he was a young up and coming cardiologist and now one of the best here in Miami. If anyone is interest his name Dr. Jorge Pastoriza, MD. He also recommend my surgeon and up and coming too LOL. His name is Dr. Joseph Lamelas, MD now the Chief of Cardiothoracic surgery, Mount Sinai Medical Center. He hinted my blood pressure being in the 130 and mech valve puts allot of stress on the heart, but that was not a direct answer. I just know he didn't look worried that day and said the same thing he always says, see you in 6 month. I figured if it was bad he would have requested it sooner. Anyways he put me on blood pressure pills only 5mg but still took a while to get used too. Like in 3 month I was back to full energy. I will see him in November maybe I will ask.. You know that saying The less you know, the happier you are...

Time is flying so lets make the best of it... Good Night bud..