Please Help-Hubby has endocarditis now! Needs to choose valve!

[Debrinha GT]

Three surgeries so far!

Three surgeries so far!

Hi, I'm Débora from Brazil! I'm fourty years-old but have been having mitral valve replacements since I was ten. I had rheumatic fever at seven and was the first child in the country to have survived this kind of surgery. The two first times I had dura-mater valves put in, but last time I got bovine. I've already been told I'll need surgery again within the next couple of years, and I've chosen tissue again! Will I make it? Well, only God knows but I sincerely hope I do!! Whatever your husband choses, there will be pros and cons, but only he can make the final decision in the end. Best of luck!
Débora

 

[MelissaM]

What about repair?

What about repair?

You might also inquire about the possibility of repairing the valve.

After a bout with endocarditis, neither the mechanical nor the tissue valve seemed like a good option for me. Repair seemed the only viable direction. The first surgeon I spoke with gave me a 65% chance of repair, the second gave me an 85% chance of repair, the third gave me a 95% of repair. I went with the third surgeon.

The thing with endocarditis is the vegetation can eat away at the valve causing holes. The holes can often be patched or closed, and depending on what caused the murmur, that can be fixed as well. Explore your options. The good thing is you have some time to do research while the IV antibiotics do their thing.

 

[Natanni]

We are HOME!

We are HOME!

We are BACK!

Nathan came home Saturday with a PICC line that so far we have been managing okay. We are going back down on Wednesday for a repeat TEE and if his valve remains clear, he will continue with his antibiotics w/PICC at home here for 4 weeks, then cultures X 2 weeks w/one more TEE and then he will have his surgery. So he may have a few more weeks to muddle through this. I think he is going to attempt to find out if any surgeons where he is doctoring at the Mayo are using the ON-X, and see if he can have consult while down on Wed for his TEE.

And about the repair, the surgeon said due to the bicuspid nature of his valve, he felt Nathan wouldn't be a good candidate for repair (and I think he did ?63 repairs in 2004).

Thanks for all the replies, and he is here now reading!






After a bout with endocarditis, neither the mechanical nor the tissue valve seemed like a good option for me. Repair seemed the only viable direction. The first surgeon I spoke with gave me a 65% chance of repair, the second gave me an 85% chance of repair, the third gave me a 95% of repair. I went with the third surgeon.

The thing with endocarditis is the vegetation can eat away at the valve causing holes. The holes can often be patched or closed, and depending on what caused the murmur, that can be fixed as well. Explore your options. The good thing is you have some time to do research while the IV antibiotics do their thing.[/QUOTE]

 

[Hank]

Natanni

Natanni

Your husband's story sounds very similar to mine.

I started this website when recovering from my aortic valve replacement surgery when I was 32. (mechanical St. Jude valve - no regrets)

I wanted people to have a place to discuss questions such as these.

I am so happy to see that you and your husband are receiving valuable input regarding your valve decisions...

 

[Natanni]

Simiar

Simiar

We were reading your story Hank and the endocarditis symptoms were incredibly similar. Nathan would shake so bad at times, and then he also had this roaming calf pain that was odd. One day this leg, the next day the other, then the next it was the elbow. One week later now, he is feeling much better. He didn't know how sick he was until he started getting better.

Your husband's story sounds very similar to mine.



I started this website when recovering from my aortic valve replacement surgery when I was 32. (mechanical St. Jude valve - no regrets)

I wanted people to have a place to discuss questions such as these.

I am so happy to see that you and your husband are receiving valuable input regarding your valve decisions...

 

[OldManEmu]

Natanni

Natanni

My story is similar to your husbands (endocarditis) just a little more protracted.
I can understand the magnitude of his choice regarding valve.
If a repair can be done that is obviously the best outcome.
I only had a choice between a Ross procedure and a mechanical valve
when surgery was first proposed, I wasn't offered a tissue valve.
I was scheduled to have a Ross Procedure however my condition
deteriorated and a Ross was considered to risky >10%.
I was left with a choice while in hospital of a mechanical valve or tissue,
I elected tissue and do not regret my choice even though I know there will
be at least 1 repeat surgery in my life maybe more.
I had no other health issues other than the valve so had no lifestyle restrictions.
I was 41 at the time of surgery last year.
The surgery was no where near as bad as I imagined, if it wasn't for the scar,
I wouldn't know it happened 8 months on.
I am back riding my motorcycle and looking forward to going skiing in the next couple of weeks.
What ever you husband decides it will be the best decision for him.

 

[twinmaker]

Everyone and their situation is different, but I got my St. Jude mechanical mitral valve back in 1981 (I had just turned 29) and come this August, we will be celebrating 24 years together. I got my valve before it had been approved by the FDA and I remember feeling like I was signing my life away the day before the surgery when I had to sign all the paperwork for a "yet to be approved" valve, but my surgeon convinced me that this was the way to go, and so far I feel he's been "right on the money". I have had some ups and downs with the Coumadin but I truly don't feel like I've changed my life at all. I've raised three children (a girl and twin boys) while my husband traveled extensively with his career and I just returned from babysitting for our grandchild (one year and crawling) for the last two weeks. I play tennis, work in our jungle (I mean yard....we live in FL), ride my bike, swim...you name it. The BEST is that I haven't had to have another OHS. After having had two (a repair the first time around), I was ready to TRY to never have to have a third if there was a possibility of that. Like I said at the beginning, everyone has to make their own decision based on their situation. Get as much info as possible and make your decision and don't look back. That's what I did, and I've been happy with my decision for the last 24 years. Linda

 

[901]

I begged the surgeon to repair my valves. He told me he would if possible. I also told him that I didn't want him fiddling around inside my chest more than once. He was OK with that as long as we were talking mechanical valve replacement. I had two leaking valves, so repairing one and replacing the other didn't make sense. So, I opted for a pair of St. Judes valves. I've read somewhere (maybe on this site) that the St. Judes valves are the "gold standard" that all other mechanical valves are measured against. The surgeon also told me that the St. Judes valves would last longer than I would. I'm 48 and will be severly depressed if I ever have to have OHS again!I was already on Warfarin because of AF, so there wasn't any adjustment after surgery, except that I no longer have AF! I don't do anything differently than I did before Warfarin and I'm always getting nicked up while working on cars or equipment in the garage.
When it came down to it, the only decision was which mechanical valve. I chose the St. Judes because of a longer successful track record than the other models available (just because it has been around longer).
I was back to work in two weeks and three days. I still have some chest pain and SOB issues but they are getting better. I'm starting rehab later this week.

 

[ClickerTicker]

Chalk up another one for endocarditis...
Yes, the shakes and the night sweating were very pronounced - still took my local surgery a week or two to diagnose.
As it happens, I was scheduled for what was planned as a Mitral Valve repair about a week later. I was called in early, started on a six week course of heavy-duty intravenous antibiotics (great way to lose weight - but I'll not make my fortune marketing it as a slimming plan ).
I had my op a few days later, unfortunately there was no choice but to do a mechanical replacement as the valve was too badly damaged by the endocarditis.
Don't be frightened by warfarin - I'm very active, breaking up concrete, use heavy power tools, etc. On the odd occasions when I've been careless and cut myself the bleeding has stopped by itself fairly quickly.
I have been self-testing for over 18 months and it's been a &Deity.send - have travelled extensively and feel very confident with my own dosing.
Very best of luck to you both, Nathan will probably be in hospital for quite a while getting over the enocarditis - I was in for a total of about seven weeks.

 

[rottrod]

Same boat as qtson

Same boat as qtson

I'm in the same situation, same age. I know that the surgery is imminent because I'm having more symptoms now, I thought it was stress so I quit my job, I get plenty of rest and am still tired all of the time, and my feet and ankels swell so bad I have to wear sandals most of the time. I'm waiting for my records to be transferred to Austin from Tulsa so I can find a cardio here. In Tulsa my Dr. said he recommended a Ross procedure for me. I'm leaning that way. I'll just have to see what the new Dr. says. I also have the issue of finding a surgeon who does the Ross and is in my insurance network. At this point, what ever I choose I just want to get it behind me. My husband and I have been married for only four years and this has been hanging over our heads the entire time. Keep us posted.