4th surgery homograph redo

[haines75]

Hi, I am new to this site and let first off say I wish I would have came across it earlier in my life. I am 38 years old and am in the waiting room for my 4th OHS. To give you a little history I was born with coarc of the aorta and bicuspid aortic valve. At 2 I had the coarc repair and they went through my back for that surgery. At 12 I had a valvotomy and they went through the sternum. They said after that I should have no problems with my valve for 25-30 years. Unfortunately in 99 I ended up with endocarditis and had to have my valve replaced and due to my age they picked a homograph (I didn't get a say in what kind of valve because I was never even asked). When they sewed the homograph in some of the tissue was infected so I still ended up with a murmur and a rocky valve.

I have seen my cardiologist every year and did my yearly echo and I always have know that I would have to have the valve replaced and that do to my past surgeries there wasn't going to be surgeons lined up to do it but the plan was when it was needed to be done it would been done here. I ended up in the ER last month with acute heart failure, didn't have really any symptoms except I felt like someone was sitting on my chest. My cardiologist came in and said it was time to replace the valve again and that he was keeping me in the hosp. and that I would be meeting the surgeon in the morning. The next day came and I had a CT with contrast done and waited for the surgeon who didn't show, finally at the end of the day another doctor came in who I had never met and told me that they where going to refer me to Mayo in Rochester. Didn't explain why and when I asked my cardiologist all he would say that homographs to mechanical are a difficult procedure and Mayo has artificial heart available to them there. Now they have me worried I have been going to the same cardiologist for the last 10 years the surgeon who did the replacement is still at the hosp. No one will answer me on why things have changed, why all the sudden they can't do it and I need to go somewhere else.

Has anyone else had any experiences like mine?

 

[pellicle]

Hi

The next day came and I had a CT with contrast done and waited for the surgeon who didn't show, finally at the end of the day another doctor came in who I had never met and told me that they where going to refer me to Mayo in Rochester. Didn't explain why and when I asked my cardiologist all he would say that homographs to mechanical are a difficult procedure and Mayo has artificial heart available to them there.... why all the sudden they can't do it and I need to go somewhere else.

Has anyone else had any experiences like mine?

well my experience is not quite like yours but I did go from a homograft to a mechanical (homograft done in 1992, mechanical in 2011 ... with a first OHS done at about 9 to do a valvotomy {repair?})

I can only guess at what's happened but my guess is that they've found things in the scan which they feel makes the situation more complex and don't want the risk of you as stats on their list so would prefer to send you somewhere with more expertise.

As to why there is no information coming your way, well that's just rude and unethical if you ask me.

I went in for a ultrasound, which then percipitated a CT scan a few days later, which then had me booked in for an angiogram a few days later ... and they still didn't say what they were looking for .... it wasn't until the angiogra surgeon was still pulling the chords out of my femoral that a cardiologist came and spoke to me about the aneurysm.

nice ...

well that's all water under the bridge.

Personally I'd be asking if they've found scar tissue they don't like or if there is some problems with it all being too close to the AV node (under the Aorta).

I would also be asking further up the food chain at the hospital as to "why"

Best Wishes

 

[dornole]

I haven't had that, but I have had the experience of being taken from one hospital to a different one (via ambulance) when Hospital A decided they couldn't handle me. It's disconcerting to say the least. I hope they can explain it to you better exactly how your condition has deteriorated - that seems like a reasonable expectation - but to me, if somebody is saying "this is too much for me," that's definitely not the right person to operate on me. If they are saying instead "you need to go to the world-famous Mayo clinic in Rochester" - well no one wants to NEED that, but it's hard to imagine anyone more qualified to help you.

This was a month ago? What did you decide to do? Are you still in heart failure?

 

[river-wear]

I can understand your desire for answers, but regardless of what they tell you, I would go to Mayo for surgery #4. I don't know if you're in a large city, but there probably aren't high-volume surgeons in SD who have done a lot of challenging cases. The best course of action is to find a doctor who has seen many complications and will (hopefully) find that your surgery isn't on the list of their biggest challenges.

Best wishes for a great outcome!

 

[haines75]

Hi guys, first thanks for the input. Yes this all started at the beginning of April. They wanted to send me to Mayo right away but due to an issue my ins. Mayo would not take me as an transfer. So an appt was made for the 6th of May. They sent me home with instructions to take it easily and not work until seen by Mayo (I even had a CNP state that they where worried about my valve not making it tell my appt.) I just got back from my first Mayo visit yesterday I had echo, EKG, chest x-ray and blood work done. When I met with the cardiologist it seemed he really wasn't familiar with my Hx and we spent most of my appt talking about that. At the end of the appt. I started talking about surgery and my options (brand or valve and so on) and he through me off with the info that not only would I be having a new valve put in but they planned on replacing part of my aorta also. I asked why and he stated that it was the plan for the beginning. News to me. But I will say yes I am very impressed with what I have experienced at Mayo so far. I was to see a surgeon that afternoon but after meeting with the cardiologist he suggested they I have a different surgeon then the one that was set up because he wanted one who had more experience with redo's. So once again i am at home waiting, still have a lot of questions I want answered but feeling that I am good hands with Mayo.

 

[dornole]

That's got to be something of a relief and for your sake I hope you live in the eastern end of SD. : ) Tons of people here have had their aorta worked on and can answer questions you may have. I think reading a lot of the threads is a great thing to do. Keep us posted how it goes with you.

 

[Lad]

Don't be to worried. A homograft comes with the root and part of the aorta and this all has to be removed when they take the valve out. The new valve will come with a Dacron graft or the surgeon will make one. This is all pretty standard, in good hands you will be fine.

 

[haines75]

Well here I sit still in the waiting room for my "need to get done as soon as possible" surgery. I do finally have a date for my surgery and can start to see the light at the end of this tunnel. I will have my surgery on July 8th! It took what felt like forever to hear back from Mayo and have them even say they found a surgeon. But I can't complain because it has been a pretty nice summer here so far and I haven't gotten to spend this much time with my kids or in my yard in forever.

Well I will let you guys know here in a couple weeks how it all went!

 

[Debbrn]

Good luck to you.

I have a different defect than yours, but I have had 4 heart surgeries. All of mine have gone great.

Debbie

 

[spartangator]

Glad you've got a date set, and we look forward to hearing about the good outcome, Haines75. It sounds you're having a wonderful summer so far that's only going to get better.

 

[Lisa2]

Haines? How did your surgery go?