3rd Valve Replacement stories please

[mom2angel]

I would love to hear stories of people's third open heart surgeries. I know there are quite a few of you out there. I will be having my third this year. Still waiting on a date. We are guessing it will be early December. I would love to hear how your third OHS went. Thanks

 

[mainframe]

I've only had 2 OHS but want to wish you the best of luck.

 

[pellicle]

Hi
I'm not sure if I "properly" meet your criteria for a open heart 3rd valve valve operation because I was 10 or so on my first and don't really remember it well. None the less ...

I had my 3rd in 2011 (2nd in 1992) and things have gone fairly well (from a cardiac perspective) since then. I felt a bit blase about it going into the pre-surgery and was more concerned about my wife who was totally new to this (she knew of my surgeries, but had not been with me through them).

I noted some differences in how they do things now (like I was up and shuffling around the nurses station in ICU).

Aside from the infection from propioni (which took a year to surface) I have had no post surgical issues Sternum healed well (thank the gods) and I just took it one step at a time with a clear focus on "I want to get better for our life together"

I did my exersizes as told and waited to do things till I was told was OK.

It really was "by the numbers" with everything except the surgical infection.

I was told (pre surgery) that there was a lot of scar tissue around my heart from previous surgeries (which didn't surprise me in the least) and that was re-iterataed to me post surgery too (from the operating surgeon). They missed the AV node nerve (a good thing) and so I didn't end up on a pacemaker.

For all those reasons I steered towards a mechanical valve on this operation.

Recovery seemed "textbook" and actually gave me some reminders of what the previous one had been like (I'd not thought much about it after having it done, went straight to Uni and then into job hunting in 1993 so I'd pretty much only paid attention to what as in front of me not behind.

Nothing was "worse" than I remembered.

I think you'll be fine

What is the "driver" for this latest operation?

 

[mom2angel]

Thanks pellicle. I read your story of your surgery and infection awhile back. Very interesting. My last one was when I was 13, so like you, I didn't think too much about it. I'm 37 now. They also told me they plan to have me up walking that day or the following morning. I do not remember being up walking that fast in '93. Things have changed since then. I'm excited to be getting this done, so I can feel better again. The driver of this surgery is my insistence. By all of my symptoms, I would say I'm in congestive heart failure, and I'm assuming the mechanical valve is the cause. It's almost 24 years old. They have agreed to replace it with an Onx valve. Still waiting on the surgery date. Hope to hear from them this week.
In '93, I remember having a fever after surgery and having to take a Tylenol suppository. I was so thirsty, but they wouldn't take the breathing tube out and let me drink water until the fever was gone. That was the only complication I remember, and that was very trivial.

 

[mom2angel]

Pellicle, if you were asking about the "last" operation, it was done to put an adult sized valve in. I was showing heart failure symptoms then too. They were going to wait until the following summer, but my symptoms got too bad, so they did it over Christmas break from school. I had been hospitalized for pneumonia, but they ended up thinking it was my heart and not really pneumonia.

 

[pellicle]

Hi

... Things have changed since then. I'm excited to be getting this done, so I can feel better again. The driver of this surgery is my insistence. By all of my symptoms, I would say I'm in congestive heart failure, and I'm assuming the mechanical valve is the cause.

ok, well if its thrombosis congestion (rather than panus) have you looked at getting a tPA done prior to surgery and see if that "cleans things up"?

https://en.wikipedia.org/wiki/Tissue...ogen_activator

It's almost 24 years old. They have agreed to replace it with an Onx valve. Still waiting on the surgery date. Hope to hear from them this week.

I'll see if I can fish out an older article from here on VR where it was successful

found:
http://www.valvereplacement.org/for...s-valve-repair-or-replace?p=850389#post850389

I hope you can perhaps try this and see if its a way to avoid (defer?) surgery. If its not pannus then this should work

 

[mom2angel]

Thanks pellicle. I will read up on all of this in the morning.

 

[mom2angel]

pellicle, Does tpa work for an older clot or only a new clot? The kids have not allowed me the time to read everything yet. Thanks

 

[pellicle]

pellicle, Does tpa work for an older clot or only a new clot? The kids have not allowed me the time to read everything yet. Thanks

to my understanding it does, it just may take a little longer. However I am certainly no expert in this field, I simply know of its existence. There may also be risks if a big chunk were to break off ... but to a lesser extent that risk is ever present with you now.

I encourage you to seek more experienced (with tpa) medical opinions, and indeed more pre-surgical investigation too.

In medicine (and indeed many walks of life) each knows their own field and sees the answers through that. A carpenter will see work with wood, a boilermaker with steel, a surgeon with a scalpel.

 

[mom2angel]

I've been reading many articles lately on my symptoms. Everything suggests that I may have a clot on my valve. I suspect it's been there for several years and has finally gotten large enough that it's causing problems. Pellicle pointed me in the direction of tpa treatment for clots. This morning I am calling to get a referral to the Mayo Clinic in hopes that they will perform tests to find a clot. Then we can try tpa to save this valve. Hopefully we can hold off on surgery. I would love to keep this valve longer.
Does anyone have experience with the Mayo Clinic? I would love to hear stories or advice. I had my brain surgery there in 2002 and they were wonderful.

 

[jwinter]

Second valve replacement November 1, 2016 at Mayo Clinic, Rochester MN. Dr. Richard Daly was recommended to my by cardiac surgeon in Billings, MT that had worked at Mayo before moving to Montana. Mechanical ON-X and all went well. Great care.

Since you have already been there I won't have to tell you that I felt like I had a bad cold compared to others that come in there from around the world as a last resort. I did try to "give back" and signed up for some studies and had blood drawn for them.......oh that and over half million in bills.

 

[mom2angel]

Completely understand that. My brain surgery was an elective surgery to remove scar tissue to try to stop having seizures. The day of my surgery, I was bumped back because of an emergency case. I was definitely much better off than many. Thankfully my surgery worked. 15 years seizure-free here!

What was the reason you were referred there?
I am still toying with just letting my local surgeon do this surgery. My doctor acts very scared of the surgery and the risks involved, but the surgeon acts more confident. He is the one that did my second valve replacement in 1993. 80% of the surgeries he does are redos, because he's been doing this so long.

 

[Agian]

I'd go with the surgeon's view m2a. We try really hard to avoid re-ops, just like we do with the initial one.
My surgeon tells me that he's done five in one person. It's not ideal, but the majority do ok.
There are some kiddies out there who have had a bunch. We don't tend to hear from them, because the forum addresses different issues from the really complex congenital stuff.

You may not need a re-do, anyway.

 

[mom2angel]

Agian, thanks. My surgeon says he expects to find tissue growing on the valve when he takes it out. He has explained how risky it is and how I may end up with a pacemaker if they cut into the conduction system while cutting through scar tissue. He said if he did 10 surgeries like mine, 4 to 6 would end up with a pacemaker. I have great confidence in him, as he is the surgeon who did my 2nd MVR in 1993. However, I also realize how risky this third MVR is, and that makes me want to look for other options first. If I could get a doctor to do a TEE or flouroscopy, maybe they could see what is on my valve. Then we could try tpa treatment first, and hope it works. That's my thought, but of course I'm hoping for the best outcome for myself.
I'm not impressed with my cardiologist at all. I had been telling him that I was having heart failure symptoms for at least a year, and he had been blowing me off and telling me I was fine. I had two episodes that matched symptoms of a TIA. I've had dizziness, chest pains, confusion, numbness in my right arm, weakness, etc every day for at least a year. The right arm numbness doesn't happen every day anymore. It was mainly happening after my last TIA in April. My cardiologist has never done any tests to check for a clot or investigate anything after I reported my symptoms.
My gradient has been 8-10 for at least the last 11 years. It is now 10-12. The gradient should be 2.5 (+-1) I don't know
why there wasn't more investigation done when my gradient got so high. But, I do not know which year it became that high.

 

[mom2angel]

Agian, my iPad was messing up and not letting me type anymore. I don't have a great feeling about my cardiologist. I am now in congestive heart failure. I have fluid in every part of my body. My cardio blew me off for a year. I had to call a lady that was my nurse for 33 years, until they switched me from pediatrics to adult congenital last year. My old nurse, Cindy, bypassed my doctor and made an appointment with the surgeon for me. I met with him Nov 9th. He seemed more confident about this surgery and said they would schedule it for the 1st or 2 nd week in December, or possible the week after Thanksgiving. They want to do a CT scan first, and want me to do an EEG with neurology. The EEG is because my cardio passed me off to neurology when I reported my TIA symptoms. He said that can't be heart related so I need to see neurology. I still haven't heard from my surgeon's nurse about any upcoming appointments. It's now Nov. 27, and the Monday after Thanksgiving. My gut is telling me to get a second opinion with the Mayo Clinic 1st, and UNMC is giving me plenty of time because they aren't calling me with any schedules. So I guess I'm venting and trying to sort it all out. I've had this cardio for 2 years, and I'm less than impressed. I do plan to switch cardios as soon as this ordeal is over.
I am not afraid of surgeries. I think I've had about 13 surgeries over the years. But, my cardio is not making me feel very confident about this one. If I had a better doctor that handled my symptoms better, I probably wouldn't have given this surgery any second thoughts.

 

[Agian]

He sounds like a tosser. Get a second and, if needed, third opinion.
My surgeon told me that the cardiologists here hate each other. They claim to be experts about things they have no idea about. I'm happy with the guy I've got now. Took a while to warm to him, but he's ok. If you're not happy, take your custom elsewhere.

 

[mom2angel]

Thanks agian. There's an excellent doctor at the same place who was there for my first MVR in 1982. He wrote articles about my case in medical journals. He's a very intelligent man. Fingers crossed that I can get him to be my doctor. That would be amazing. I may call and ask today or later this week, if I don't hear from them first, or if my condition worsens.