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I have always gone to Mayo Clinic. My mother made the decisions when I was a child and now that they know my anatomy so well I continue using them. My surgeon was the president of the Thoracic Society of Surgeons and is very good at what he does . My previous surgeon Dr. Puga was pioneer in my...

I have undergone 7 open heart surgeries, I had a unifocalization and non valved conduit placed when I was 6 months old, then a closed heart surgery where a BT shunt was placed by thoracotomy, I had a VSD closure, 4 pulmonary valve redo's ( one due to fungal endocarditis), my tricuspid valve...

I too have a long history of OHS and scar tissue and keloids. My scar tissue around my last valve was so bad they had to remove a portion of rib just to get my old valve out. I am only 25 but scarring and wound healing are both big issues for me.

I am 25 years old but sometimes I feel quite a bit older! :)

It really sucks since with right sided valves replacement it ends up being a lifetime of surgeries if you are very young when the pulmonary valve has to be replaced. I am "hoping" to get at least 15 years out of this one since I am finished growing it should hopefully last a bit longer!

I think you are right about mechanical being the go to for endocarditis but because of my defect being right sided I don't think there are any medical centers currently doing right sided mechanical valves. I could be wrong but I know Mayo Clinic and Cleveland Clinic do not. Fungal endocarditis...

Thanks for your input! One thing that gives me a bit of hope is the transcatheter valve replacement for pulmonary valves. I know several others with defects like mine that have underwent transcatheter placement with great results. I was not a candidate this last time due to the fact they had...

Not debating but wondering something, I have NEVER been offered a mechanical valve. Always either a homograph or animal tissue valve. My defect is right sided ( pulmonary valve to be exact and a tricuspid repair last surgery). Does anyone here have a mechanical valve on the right side...

I have a few things that help with my nosebleeds. First I use Ayr no drip saline nasal gel to keep my nasal passages moist. I use oxygen at night so that coupled with the dry air and Warfarin and aspirin combo does not help. When I do get a nose bleed putting ice on my upper lip helps and I...

I wear one of those every year. I am at high risk for sudden lethal arrythmias due to my particular heart defect and the surgeries I have undergone to correct it. So they like to keep an eye on my rhythm in case the time comes for a pace maker. Did they give you a journal to fill out? Normally I...

Wow I remember nothing, but I was much younger than 8 years old for mine. My 4 heart surgeries I was 5 or younger so I don't remember a thing. I do remember my ones at age 12 and after.

What I meant was I don't remember the recovery or the hospital or any of it from when I was a young child and had the first 4 surgeries. I was too young to remember the recovery which may be a blessing because the ones I do remember are not that fun!

They have slowed it down now to once a week, I think they were being very cautious with the transition to Fluconazole. I went last Monday and go again this coming Monday so I am hoping my INR is between 2-3 but I would take anything below 3.5 at this point.

Not an award I wanted to win!! I also had one closed heart surgery a thoracotomy to place a BT shunt. Most of these surgeries I either don't remember or don't remember well other than the last 3.

Unfortunately yes 7 OHS to date. One silver lining is I don't remember some of them as I was quite young. First OHS at 2 months, 2nd 18 months, 3rd 3 years, 4th 4 years. 5th 12 years, 6th 14 years and this one at 25 years old. I remember my mother telling me "Son everyone has a burden in life to...

Sorry total mistake! I have been suffering from some "brain fog" since surgery!

The Fluconazole is a fixed dose of 400mg per day. I started out on the IV Caspofungin and my INR was low and they had me on a dose of 2.5mg warfarin. After starting the Fluconazole and stopping the Caspo my Warfarin climbed from 1.8 to almost 6 in a week and a half. I should add I don't weigh...

I know this sounds terrible but I literally do not eat leafy green vegetables at all and I really should! My diet is pretty steady to the point where I will eat the same thing for months. Most of my friends make fun of my "food jags". I really appreciate the advice and offer of assistance with...

My doctor did suggest I get a home monitor and warned me since I would only be on it for 3-6 months they have had little to no luck getting insurance to cover it. I have just purchased one on EBAY and am awaiting it's arrival. The reason for the swings is due to the fact I was put on IV...