2nd OHS in the same year

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L

lgurevitch

Member
Joined
Mar 24, 2009
Messages
24
Location
Atlanta, GA, USA
Hello Friends,
I just found out that I will need another surgery to replace my aortic valve and root.

A little background: I had my aortic valve replaced on July 8, 09 (freestyle pig valve). At the time my surgeon (Dr. Edward Chen at Emory) noticed that my aortic root measurements were very unusual. The way he explained it to me is that for most people (actually all people he has seen except for me) the difference between the size of the top of the root and bottom is about 10%. Well, for me it's about a 60 or 70% difference. So, the valve he used is not an exact fit. Since they did not know about this prior to my surgery (even with all the tests I had), Dr. Chen had to make a judgement call during my surgery to go ahead and do the valve replacement (and not the valve and root replacemenet). So the new valve was leaking after the surgery, only a little bit. He told me that they didn't know what would happen with the leakage over time and we would just have to "keep an eye on it".

Well, here I am 9 months later and I just had another echo. The valve leakage is getting worse and I was told by Dr. Chen that I would need to have surgery to replace my root and valve within 3 to 6 months.

As you can imagine I have a million thoughts going thru my head. My feelings range from denial, anger, frustration, fear, etc.

My initial question to this awesome group of people...is there anyone else out there who has experienced something similar to me or am I the only one in this world that has this situation. BTW, I was told by Dr. Chen that my aortic root was probably due to a birth defect, not some type of change over time. I was also born with a bicuspic aortic valve.

Any help, input, support, etc. would be appreciated.

I have an appointment scheduled with Dr. Chen for June 1.

Thanks,
Liz G
 
Liz I don't about you being the only one with an aorta like that, but I do know your not the only one that's had to have surgery twice in one years time. No one can blame you for being angry. We know this surgery is a big deal and gets tougher each time it's done. Randy had to have his replaced within a week of his first. Now that was a mind blower. Think this through very carefully. 3rd surgeries can be life defining.
 
So sorry to read your post Liz & that you will need to have yet another OHS in such a short time! But there are a few of us here, me included, that have had to face the knife yet again & again.

In 1975 I had my aortic & mitral valves replaced, (or what was left of my natural valves due to rheumatic fever & endocarditis), with mechanical valves. A short time after returning home, I started showing signs of CHF & six months later had to be rushed into emergency surgery in Houston to have the prosthetic mitral valve re-sewn because the sutures had worked themselves loose! The surgeon said that he had never encountered a situation such as mine on and any of the hundereds of patients he had operated on, & that I was very lucky to be alive!

So rare cases such as yours, mine & others, do happen unfortunately & the only thing left to be done is to have it corrected as soon as possible!

Wishing you the very best & try to stay optomistic & focused on what you need to do. I have a feeling you will do just fine the 2nd time around too! :)
 
Joe had to have his mechanical mitral sewing cuff resewn within a couple of years of it being implanted. He had a nasty fall right after it was first implanted, landed flat on his chest w/o breaking the fall. I believe this tore loose those stitches since they had now healed in yet.
 
Without question, this is very, very hard for you to contemplate.
It was barely two years after my first surgery when I learned my mitral valve was leaking. It took my breath away to think of going through another OHS. My doctors watched it and just about exactly 2 years later, I had it replaced.... my second OHS. My second surgery was very much easier on me and I recovered faster and more strongly right from the start from my second surgery.
When we learn such awful news, we have no choice but to just do what we have to do. It's not like there is any viable option but to submit to another surgery.
The best thing you can do for yourself is maintain a very healthy diet and keep your body in the best condition you can. If you are able to exercise, do so. If you can walk, it makes a huge difference. All my doctors told me the fact DH and I walk for exercise all the time, kept me in good condition and helped me through the surgery more easily.

Sending warmest best wishes to you. This is rough news to get.
 
I also have had two valve replacements, but I had a five-year rest between them. Like Jkm7, my second went well, and was actually easier than the first.

I know there are a number of people here who've visited the Forum who've had multiple surgeries within days, weeks, and a few months of their original. Often, it's due to a valve repair attempt that didn't work out or a rip that might dissect in the aorta or aortic root adjoining the surgical site. Like you, they were very unhappy and somewhat terrified (I would be too!). However, people not in dire shape to begin with seem to pull through pretty well, from the postings over the years.

Are you certain that you want to stick with the same surgeon? I'm not trying to create discontent, but it's always an option to seek out someone who has a great deal of specific surgical experience with congenital malformations.

What you are going through right now is very difficult and scary, but I know that you will do well, and come out with the new valve and root that you need.

Very best wishes,
 
Hello Everyone. My husband and I had a long discussion with my cardiologist yesterday. Here's what we found out:

My valve is leaking a little worse than what showed up on my echo in early December, the cardiologist classified it as "moderate" leakage (as opposed to right before my surgery, he classified it as "severe" leakage). He also feels that the progression of the leakage is "very slow" and he is being "overly cautions" about when the surgey needs to be done. I am having a few "minor" symptoms similar to what I was experiencing prior to the surgery (heart palpatations and minor pain)

I will need both my valve and aortic root replaced and both he and the surgeon recommend I do this sometime in the next 3 to 6 months. It is not an "emergency" situation by any means, but is something I need to take care of "sooner rather than later". The surgeon (Dr Chen) is absolutely the right "man for the job", he is considered one of the top surgeons in the country dealing with the aorta. We feel very fortunate that he is here in Atlanta and at Emory (and BTW lives in our neighborhood).

Regarding why this was not caught prior to my surgery, not to get too detailed but based on what the cardiologist said, my particular situation (with the enlarged root) is very difficult to detect on an x-ray/cat scan etc and is often missed. He also told us that my situation is probably due to a (somewhat rare) congenital birth defect and was not due to some other underlying problem that caused it over time.

I feel slightly better after talking with him and I am starting to "get used to the idea" of having to endure surgery again. It really comes down to the fact that this is a fixable thing and really, I have no choice so I might as well try to remain positive and get it over with.

Other than that, I have an appointment with the surgeon on June 1 (we may try to do it sooner) and will know more at that time.

Thanks to you all for your support and words of encouragement.

Liz G
 
Liz, I am very sorry you have to go through this again. At least it sounds like your Doctors are on top of it and you can get some comfort out of that. A lot of folks here say that the waiting is the worst part of the whole thing. Try to stay strong and positive and know that after its over you can get your life back to normal without this hanging over you. My thoughts and Prayers to you and your family..... Daren
 
Hi Everyone. My surgery is scheduled for July 12 with Dr. Chen at Emory. This is 1 year and 4 days after my (first) OHS (Aortic Valve Replacement). This time I wll be having a prostetic (dacron) root and pig valve replacement. The surgery itself is more involved than the last, but they expect my recovery to be "about the same" as last time. At least I know what to expect (for the most part) this time. Thanks to everyone for your kind words and support. I'll be in touch over the next few weeks and after as well.
Liz G (Atlanta GA)
 
Liz,

that is disheartening news indeed and sad that you need to go through OHS again, but you seem reconciled to getting it done, because it is must.

All the best with the process and wishing you godspeedfaith wih the pre op and post op, hoping all goes well, darn that must be tough,,feel for you
 
Liz, I'm sorry you have to go thru this, Thanks for the update. I was wonderring how things were going with you. Hopefully like many others you will have a better time with your 2nd surgery than first
 
So sorry you have to go through this again. I had two OHS in the same year, 7 months apart. Had my Mitral valve repaired and three months later found out it was leaking just as much as before (never even got to feeling better). As scared as I was before the first one, I was even more so before the second because I knew what to expect and my first one had not gone so well. In the end, the second one was actually easier on me, plus I got better, which was the best part! It took me a long time to heal completely from two so close together, but I am doing really well now. I saw you are in Atlanta, too, and for a second wondered if we had the same surgeon! (we don't, I went to Piedmont) Before my second I got 2 other opinions but ended up going back to the same surgeon and thankfully it went well.
Wishing you the best of luck and at least this time you will get fixed and then get on with life! It is not an easy thing to go through at all.
 
Liz,
I empathize with you a whole bunch. I know it's got to be tough to face again; however, the ultimate goal, for you to feel well will be worth it. Keeping you in my prayers, and wishing you all the best for a very uneventful recovery.
 
Liz, Its good to hear from you. I too was wondering how things were going for you. I know its horrible news to hear you need another OHS. I am right on your heels getting my 2nd one dialed in. Please try to stay calm and positive and know that we are all pulling for you. I will keep you in my Prayers... Daren
 
Sorry to hear that you will need a second operation.

I met with Dr. Chen today for my 2 month follow-up. Before my AVR, I felt better after meeting Dr. Chen. His demeanor is compassionate and caring and it helped put me at ease.

My surgery was on April 26 and consisted of AVR with St. Jude Regent mechanical, root and aortic replacement up to below the arch, and a by-pass using a chest artery.
 
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