New member, set to go May 25th.

[Destinova]

Hi everyone. I just found this site today when looking around for information on my upcoming surgery. Having lived with this issue since birth I was actually surprised to find a forum like this, but happy it's here.

First off, my name is Rob, I am 30 years old and I am currently living in Edmonton, Alberta, Canada. I was born with a bicuspid aortic valve and had a valvulotomy at age 3 in my hometown of Winnipeg. I nearly didn't make it through surgery, they had a tough time getting my ticker to get back to work, and then I developed a clot on my venial line and turned a nice shade of blue. The surgery left me with moderate aortic regurgitation and stenosis. I was initially told I would likely have to have the valve replaced by the time I was 18.

I had a scare with some Endocarditis at age 16, but came through ok. I had it again about 2 years later but again, no damage was done.

My 18th birthday rolled around and I was in shape, and felt great. So I would have to probably have it replaced at 25. Well 25 rolled around and no changes. At 30 everything fell apart though. I had another round of Endocarditis in January of 2005, and felt a noticeable difference in my cardiac capacity after that. My last echo also showed a small tear or bump on my Mitral valve.

So, time for my aortic valve to be replaced. I met my surgeon today, Dr. Roderick MacArthur at the University of Alberta Hospital here in Edmonton. I feel really comfortable with him. I am scheduled for May 25th, and I will be having my aortic valve and aortic root replaced, with the possibility of a mitral valve repair.

Dr. MacArthur believes the St. Jude Mechanical Valved Conduit will be used, and it should last my lifetime. The obvious downside is the Coumadin, but at 30 I don't want to have several reoperations. He is getting a consult however to see if I am a candidate for the Ross Procedure.

Anyway, I am looking forward to reading through the forums and your stories and thanks for taking the time to read my story.

Cheers,

Rob

 

[geebee]

Welcome, Rob.

You have found your way to the best place for information. I cannot help much with the specifics of BAV but I have been through OHS as an adult. It is scary but so great that things can be fixed the way they can these days.

I am sure others will be around to say hi. In the meantime, look around, post questions and get comfortable. You are in good hands.

 

[Georgia]

Hey, Rob - welcome to the site. Since you've lived with this hanging over your head your whole life, I presume you're not shocked at the news, as some of us were. But it can be pretty frightening; and you have months to think about it. Argh.

Feel free to look around and read various threads. And please join our discussions and ask any questions you might have.

 

[sue943]

I'm impressed

I'm impressed

Hi Rob

Three bouts of endocarditis, I am impressed. Welcome.

 

[OldManEmu]

Rob welcome aboard. I must say I am impressed 3 bouts of Endocarditis and only now requiring an AVR. I had to have my AVR after only 1 bout however I had it for 8 months before they worked out what it was. Anyway stay calm and learn what you can over the next 3.5 months and investigate all your options. If you are suitable for a Ross I suggest you get a surgeon experienced in Ross's as they are a technically demanding operation.

 

[Ross]

Hi Rob, if you stay on the current path, Coumadin is not a big deal. I'm sure you've heard lots of tales, many of which are not true. Swing by Al Lodwicks site at www.warfarinfo.com and get some education there so that you know when your hearing a tale from the truth. He is a member here and is a certified anticoag expert and pharmacist who also runs a Coumadin clinic, so he's well qualified with his opinions.

I know they told me all sorts of crazyness when I started on it. I've found it to be no big problem at all and still do everything I love to do and eat anything I want too.

 

[Gemma]

Hi Rob,

Wow! Sounds like you've had a lot to get your head around.

Like Ross said, coumadin (warfarin) isn't really that big a deal. My boyfriend's been on it for over 2 years with no problems (touch wood!) Find out the options about the Ross procedure as well though.

One thing it might be worth discussing with your surgeon if thinking about the Ross is what happens if he can't repair the mitral and that needs replacing too - if you did that and the Ross you'd end up with 3 replaced valves (and therefore potentially more problems especially if you were ever unlucky enough to get endocarditis again). If you opt for a mechanical aortic valve and the mitral turns out to be unrepairable, by getting 2 mechanicals put in you'd at least leave your pulmonary valve alone and have the "advantage" of hopefully not needing any more surgery down the line.

OK, that was a slightly wordier explanation than I intended, but hope it made sense!

Take care,

Gemma.

 

[Destinova]

re: Triple Endocarditis

re: Triple Endocarditis

I've been very very lucky with the Endocarditis, definitely.

When I first got it when I was 16, my mother was a nurse and figured I had the flu, so it was fluids and bed rest. After about a week, knowing first of all that the flu does not typically last that long, and secondly that I have a heart condition, that it was time to see my doctor. He also knew my complete history and got a blood culture done right away. 2 days later I was in the hospital on IV Pen and Gent for 6 weeks. No damage to the heart, strictly because of the fast diagnosis.

2 years later, as soon as I felt those symptoms again, there was no waiting around. I was in the hospital the same day, culture done, and IV meds, 'just in case'. When the culture was positive, 6 more weeks of IV antibiotics, and close monitoring my Cardiology showed (again) no damage or vegetation on the heart.

2 years later a buddy of mine whom I grew up with got 'the flu'. He had no cardiac history, but 6 weeks later he had a new Mitral valve, and called me up to tell me he had joined 'The Zipper Club', referring to our matching sternal scars.

Last year when I felt symptomatic again it was a simple decision, I had my doctor draw a culture right away, and got some antibiotics. I was able to do homecare this last time, with a portable IV pump, and a central IV line, so that was a lot better than 6 weeks in the hospital.

Cheers,

Rob

 

[DinahS]

Welcome

Welcome

Hi and welcome.

3 times with Endocarditis...That is so scary, but PRAISE GOD you made it through ok! I have only had it once and man ole man that is something I NEVER hope to get again. I have never been so sick in my life. Mine was caught after about a month and was oddly on my Mitral Valve instead of the Aortic Valve, but it was a very very tiny veg and so I didn't need surgery then either. But I think all the stress on my heart and fever did cause my stenosis to progress faster than it was. I did have surgery on 12/28 to replace the aortic valve, but the mitral is ok. Thank God again!

The Infectious Disease doctor couldn't explain where or why I got the strep bacteria in my blood. Just happens he said. I still wonder everyday about that. I get lost in all the information on the internet about it. Most of the time it doesn't apply to Endocarditis.

Anyway, I know now that if I get chills and a fever, then my butt is going to the hospital ASAP!! That is something to never play with.

I wish you well and I hope you NEVER have Endocarditis again and pray that your surgery goes well. God Bless!