25 years old and confused

[kfay]

I would recommend a tissue valve if you are going to have children. I am 37 and am done having children and still opted for a tissue to prevent being on anticoagulants for the rest of my life. Anticoagulants for the rest of my long life could cause many problems down the road plus by the time we have to have ours redone it will most likely not be open heart surgery anymore. So many advances are coming when it comes to this type of thing. Good luck with your surgery and decision.

Laura, Tissue valves in the pulmonary position typically last much longer than they do in either the aortic or mitral. Plus, you would probably be hard pressed to find a surgeon who would even recommend a mechanical valve for the pulmonary because of clotting issues.

 

[bugchucker]

Hi there, late to the discussion here. Just wanted to add my hello, welcome and that I am 37 and had no choice but to go with a tisue valve. Almost 8 weeks later it is ticking great. I do not look forward to my future surgeries, but in 20 years who knows what they willl be able to do??? I did not see (though may have missed) mention of the ONX Valve. Is that an option in Italy? It's a lot to deal with, prayers to you!

 

[cuoricino]

ok, now I'm REALLY confused.

Met with surgeon number 3 yesterday. And he seemed pretty set on "saving the valve!" (makes me think of "save the whales" campaign for some reason. ...I digress) He was adamently against the Ross procedure, even though he performs them regularly, mainly for kiddies. He said it would cause me more problems than advantages. So at least I'm narrowing my choices here.

He has scheduled me for a TEE for next Tues. to see if my valve is worth saving (most likely he will at least repair it while he's in there), and then we'll meet again.

In the meantime, I had sent my docs to a different cardiologist in Bologna who happens to work under the "most talented aorta specialist in Italy". He discussed my case with the surgeon and he also believes saving the valve is worth it. I'm sending him the results of the TEE and we'll see from there. There is a bit of a catch in this whole "most talented".... He would be ideal for the replacement of my ascending aorta (at 4.9cm), but not the absolute best in valve repair. So it's propsed a different problem for me now.... WHICH SURGEON!? I know none of you can answer that for me... just venting a bit.

Either way, every surgeon I've met with so far considers the tissue valve the way to go. Phew. At least that decision is made.

 

[Ross]

He has scheduled me for a TEE for next Tues. to see if my valve is worth saving (most likely he will at least repair it while he's in there), and then we'll meet again.

Umm, he's not going to fix anything doing a TEE, just looking. See! Now your confuzzling me.

 

[MissMelis]

For what it's worth, I opted against mechanical for the time being for the same reasons as you. And if it weren't for the aneurysm that developed, I'd say I'm at 100%. Both valves are doing really well, with just trace leakage. I'm hoping they'll last me a while yet - at least until I'm done popping out tots.

You are asking all the right questions, and I hope you'll get to a decision you are comfortable with.

Melissa

 

[cuoricino]

Umm, he's not going to fix anything doing a TEE, just looking. See! Now your confuzzling me.

touche'

"in there" was suppose to mean while he's operating, on OHS day... not during the TEE. i seem to be having little control over how all the different thoughts that are frantically bouncing around my brain come out and in what order. should go to a shrink while I'm at it with all these dr's appointments to keep me from going completely insane before I hit the operating table!!!!

Melissa got your email THANK YOU.... you have answered so many questions and opened a door to many an email to come. Prepare yourself ;p I'll respond as soon as I get a chance!

Thank you again to everyone for your responses!! I'll keep you all posted

 

[StephR]

I was in a similar situation... 35 yr old female, wanting kids, BAV, 5.1 Aneurysm, root fine and slight leak of BAV. I opted for a valve sparring aorta and arch replacement. Before surgery, the surgeon thought my valve would last 10 years. After my surgery, my surgeon said that my valve was in too good of shape to replace. It now only has a trace leak and could last 20 years. A couple weeks after the surgery I had some remorse on my decision as I was struggling a bit with my recovery and did not want to go through another OHS. However, I know now that I made the right decision for ME. I seem to forget my early struggles a little more as each week passes. I am optimistic that I'll hit the 20 year mark before I'll need a replacement and hoping for significant medical advancements for a less invasive procedure.

 

[Ross]

touche'

"in there" was suppose to mean while he's operating, on OHS day... not during the TEE. i seem to be having little control over how all the different thoughts that are frantically bouncing around my brain come out and in what order. should go to a shrink while I'm at it with all these dr's appointments to keep me from going completely insane before I hit the operating table!!!!

Melissa got your email THANK YOU.... you have answered so many questions and opened a door to many an email to come. Prepare yourself ;p I'll respond as soon as I get a chance!

Thank you again to everyone for your responses!! I'll keep you all posted

NEWS FLASH! You sound like someone about to undergo heart surgery.

Perfectly normally abnormal.

 

[Kathy McCain]

Cuoricino,

Hello there. I think you are right on target with your thinking! Seems like you have a very well thought out plan! You have interviewed some of the best physicians. You just have to go with the right one, and trust his judgment. In the final analysis it is the surgeon, that will make the decision.

Good luck, and please keep us updated. You have a lot of friends here!

 

[Jessie316]

When I was first diagnosed 12 years ago or so I was told I was a candidate fro th e RP. Very soon after being told that I found out the success rate was not hat good. I am 32 years old. and totally understand. My husband and I have decided on no kids prior to me needing surgery so my decision of going mechnaical was easy to decrease the amount of times having to be opened up. My surgery is 7/6. But isf you are planning on or would like to have kids then your plan sound well founded.

 

[Lisa in Katy]

I was 14 when I had rheumatic fever and my doctor said I would need surgery within 4 years so I faced a similar dilemma except at that time most surgeons wouldn't replace valves damaged by RF with tissue. They told me there was a good possibility I wouldn't ever have children. Well, my heart adjusted better than they thought, technology progressed, and at 26 when I began seriously considering kids, my cardiologist wanted me to go to Johns Hopkins where they were just beginning to repair valves damaged by RF, but he warned that if they weren't able to repair it I'd come out with a mechanical valve. I didn't follow his advice and 12 years and 2 kids later I did have a mechanical valve put in. However, if I had been in your shoes, I would go for repair if possible, a standard tissue valve for now if not and replace with mechanical later. I've never understood the benefits of the Ross procedure, and I've heard of many failing as early if not earlier than standard tissue.

 

[KWRice]

I am so happy to find someone on here in the same age group. I am 26 and had AVR on 5/8/09 and I also had a root replacement. I too faced the decision of a tissue or mechanical valve and I chose tissue to avoid coumadin. The final decision was up to the Dr as I had infection in my heart so we were not sure what we would be able to use. I ended up with a valve and a root from a donor heart, I consider myself very lucky for this however my recovery has not been so great. When is your surgery scheduled? I would like to compare some things with you if that is OK, I fear I am not on the right track with my recovery.

 

[Megan]

hi! i had valve saving first, then tissue when I was 29 so i could have kids- and i had two! beautiful boys. the baxter bovine pericaridal valve lasted 10 years and i just had it replaced with a mechanical at age 39. now i knock on wood with my coumadin and pray that I am done with surgeries! and even still, even though I know i made the right choice - well i think- i still "miss" my quiet cow valve and no meds. its hard to describe and its very individual but hope this helps you!

 

[cuoricino]

Hi KWRice, ask me whatever! Here on the forum, or private message, or whatever. I'm scheduled for surgery on the 23rd of this month, so can't help YET with recovery questions. But very soon, I'll be itching to compare and contrast. You are very lucky to have had donor "parts" so to speak. What beats the real thing? Sorry to hear you're not doing well with recovery, but venting and asking on the post-surgery forum could help you out a lot.

Hi Megan, thanks for sharing your experience! I'm hoping to be able to save the valve. It may buy me the time I need to have kids, and if it's beyond repair, I'm going tissue. Like you mentioned, having kids isn't the only benefit. Coumadin all my life seems like a ball and chain I'm not ready to get tied you just yet. Not to mention the ticking of the mechanical valve! Although I'm sure anyone on here would tell me that you get used to it.

Ciao

 

[sknydave]

Hi, I was also apprehensive about having to take coumadin for the rest of my life, but I can tell you that it really isn't that big of a deal. Other than being a bit of an annoyance, I really don't even notice it anymore. The only real downside for me was never being able to box again, but I'll just live with it. Emphasis on the living part

 

[bodman25]

I am another 25 year old and I have two mechanical valves in the aortic and mitral positions. I am male so I didnt have to worry about having children. You are not crazy at all if you decide to go with a tissue valve. You should have children and then see what happens.

 

[cuoricino]

thanks for the input, guys.

we're down to the wire and in just 5 short days I'm being admitted to the hospital and in 6 days it's operation time!!

just a question, david: why did you have to stop boxing? did it have to do with the coumadin, the heart surgery itself or both??

 

[sknydave]

Because of the coumadin. Being hit in the head often and at the possibility of big cuts is not a good thing. I guess I could just do everything but spar, but there's no fun in that

Good luck!