First-repair. now replacement

[blessed1416]

Hi all, I was informed 3 days ago that my mitral valve which was repaired 2 years ago(I was 44 @the time) now needs replacing due to severe leakage. My cardiologist came to this conclusion after an echo was done. I am having symptoms- difficulty walking up stairs, dizzyness, and tightness in my chest and stabbing back pain. He says the replacement isn't something I have to have done within the next few weeks. However, from what I have been reading in this forum, I might shouldn't put it off too long. My family has a long history of heart disease - both grandparents on father's side died of heart attacks, my father passed away because of heart failure, there were 13 first cousins of whom: 1 died when she was only 27 of heart-related problems, one has a heart transplant, and 5 others have had at least one OHS. Is it true that cardiologists tend to delay surgery, while surgeons prefer to do it prior to symptoms? Also, there seems to be a lack of communication between my cardiologist and my surgeon. They are in two different cities 150 miles apart. My surgeon- can we mention names- is Dr.Al Pacifico @UAB, my cardiologist is Dr. Michael Aikins in Opelika, AL. My cardiologist is wonderful! My surgeon is very busy and made it clear after my surgery that my cardiologist was my primary physician and that there wouldn't be any need to return to Birmingham. Well, 2 years later- there seems to be a need. So, should I return to Dr. Pacifico to replace the valve or should I have the replacement at Opelika where my cardiologist and surgeons are together and can keep a closer check on things? If I have the replacement at Opelika, I will be closer to home and family. I know many people who have had OHS there and did great, however they were all bypasses- I know of no one who has had a valve replaced there. So sorry to ramble! I am amazed at the support you all have for each other on this site- it is truly touching to see how close total strangers can become when we all have something in common. Thanks for listening!!

 

[Mary]

Hi and welcome!

As you probably know, there are many members who will be able to give you their own first hand experience and advice. Several have had their surgeries at UAB with the surgeon you named. I'm sure they will be along presently; in the meantime, welcome aboard!
Mary

 

[Karlynn]

Welcome to our family!

You are right, surgeons tend to act more quickly than cardiologists and the collective opinion here is to go by the recommendation of the surgeon. Cardiologists tend to want to wait until they see damage being done, while most of us feel it's better to operate before damage is done.

You are symptomatic due to the severe leak. In my opinion, there is no reason not to go ahead and get it done. Why put up with the symptoms and possibly decrease your physical fitness (which will help you recover more quickly)?

I'll let other's weigh in on your questions as to where you should get it done.

 

[catwoman]

Dear blessed1416:

Sorry to hear that the repair hasn't worked out. Your symptoms sound like mine before my MVR two years ago.

Cardios, PCPs and internists tend to try to buy time. Surgeons want you in at the best time possible to avoid permanent heart damage. There was a recent article in the New England Journal of Medicine about research determining actual numbers on when to do MV surgery. You may want to do a search here for that. I believe the researcher's last name is Serano and is from the Mayo Clinic in Rochester, MN, I think ranked the 2nd best heart hospital in the nation.

Choose the best surgeon possible, one who does a lot of valve replacements. I think others here have had Dr. Pacifico for a surgeon; his name seems familiar at first glance.

Decide which type of valve you want: tissue or mechanical. Each has its pluses and each has downsides. Do some research to determine which is best for you.
BTW, many people fear they will have to drop activities if they go on warfarin (required for a mechanical) but it's not true. A bicyclist friend went on a 41MI bike ride last Saturday around Sulphur Springs Texas and met a rider who has had a St. Jude valve (mitral) for some time. The man lives somewhere in northeast Texas and goes on a lot of rides, Debra said.

 

[Mary]

I reread your post, and I see where the cardiologist is saying replacement is necessary--just not in the next FEW WEEKS!
His advice seems pretty straight forward. Most cardiiologists don't recommend that quickly. Are you trying to decide whether to contact your surgeon or to go with a new one?
Either way, I wouldn't wait. The cardiologist is saying it needs to be done, so you should be making arrangements.
I would go with the very best surgeon I could get; one who has done many replacements. Although the surgery risk is relatively low, one thing I've noticed from postsurgery posts is there are typically fewer compllcations following replacement if the surgeon has done a high number.

 

[geebee]

Welcome,

I think seeing a surgeon in the next couple of weeks is indicated. Obviously you need surgery and I think the only thing the cardio was saying is that is it not an emergency.

My first surgery was done in NYC which was about 1 1/2 hours from my home. When I found out (interestingly 2 years later), I did not hesitate and returned to the same surgeon. I like the known rather than the unknown. The fact that you mention the local hospital is not known for valve surgery makes me concerned for you. I would want a staff that is familar with valve operations.

I think you should start with the surgeon who did your first sugery. If you are not comfortable with the distance, you could ask him for a referral closer to your home. There is a chance he may provide a recommendation.

As someone else mentioned, go in armed with information on the valve types so you can make your wishes known in advance.

Best of luck and please keep us posted.

 

[gadgetman]

As you can see from my "signature" I had my mitral valve "repaired" by Dr. McGiffin at UAB. He was straightforward in explaining that repair was an option and was the best thing for me and my heart but that we might eventually have to go back in and replace it. Some repairs "last a lifetime", others have the life span of tissue valves. My Cardio said he would not send me to any other Surgeon than Dr. McGiffin based on the complications I was facing. I was told by others (and by some of the nurses and staff at UAB) that Dr. Pacifico lacked a "bedside manner" that some of the others had. I was very pleased with Dr. McGiffin. He explained everything to me and answered any question, no matter how dumb they sounded, as well as he could. And Dr. Kirkland is the head of heart surgery there at UAB. You might see if either one of them are willing to give you a consult (sometimes they don't want to step on another Drs. toes). Karl recently had his surgery performed by Dr. Kirkland at UAB.

Good luck and sorry to hear that you are having to face all this again. Don't wait until things get really bad to follow up. Prayers and good thoughts are coming your way.

May God Bless,

Danny

 

[tobagotwo]

My two cents...

Yes, surgeons tend to move more quickly to surgery, mostly because the better condition the heart is in, the faster and more complete the recovery, and they see an enlargement-damaged heart as a major risk to successful surgery. The cardiologists tend to want to avoid the surgery, as they see it as the major risk.

As far as a surgeon, the smart advice is to go to the surgeon and facility that have the most experience and volume with the surgery you need. The numbers definitely lead to that conclusion. It needn't be Dr. Pacifico: there are many well-practiced, high-volume surgeons. The surgeon is not a continuing factor in your life or recovery after you leave the hospital anyway. In fact, he is hardly involved at all, once you've been sewn up.

That being said, if it will comfort you greatly to be within a sphere of people who you feel communicate well with each other, the extra risk is not all that high, as long as the surgeon is doing a respectable number each year. As you will likely receive a mechanical valve and be on Coumadin, you should ask about their experience level with ACT.

While things can go wrong afterwards, my own bent is to be most concerned about the surgery itself, as long as the facilities each have a decent nurse-to-patient ratio and good cardio coverage.

Best wishes,

 

[joy]

Hi, and welcome to the site! I guess my advise to you about the location of the surgery is, I would go to UAB, BUT I would try out a different surgeon, one who had a better bedside manner. My surgeon came up a lot during my hospital stay and when I finally woke up, he said, "good morning, sunshine!" The reason your repair failed? I can't answer that, I am sorry. Good luck!

 

[hensylee]

Welcome, Blessed, to a site that will help you all the way and answer all your questions.

UAB is an excellent hospital - teaching hospitals are usually great. Leaving your family behind would be ok for a week if it means better medical care - and if you can have a family member staying close during your hospital stay. Lots of VR members have long distances to travel to their surgeries and will probably tell you about it. Surgeons generally release you until needed again for their particular services. Mine did - I had bypasses. But he's always available should he be needed again.

I am sorry you are having to go through this, but you are among friends here.

Blessins......

 

[blessed1416]

Thanks for your reply Rachel, You brought up some important concerns I hadn't thought about asking. When I had the valve repaired, I was assured it would last a lifetime. I also was told there was only a one in 865 chance that the repair wouldn't be successful. My husband seems to think that the repair failed because of something that happened while I was still in CICU. I was taken off the respirator and the nurse put the oxygen tube at my nose. My husband could only visit me for 5 minute intervals, but while he was in there once, he said that there was some sort of problem and they ran him out. I can remember a nurse watching me with a puzzeled look on her face- how long this went on, I had no idea. I do remember thinking that something was wrong, but I felt fine so I didn't worry. When another shift nurse came in I remember something being said about the oxygen was not turned on. Now, I wonder if that perhaps had anything to do with why the repair failed.
I also thank you for bringing to my attention the fact that we are limited to the number of times we can be operated on any given anatomical part. That makes sense. It does seem that with each additional surgery, things get more complicated. Anyway, sorry to ramble. But you have given me a treasure of information. I will heed your advise and "shop" for the best surgeon. I wish for you the very best!! Gail

 

[Marty]

A vote for Dr. Kirklin

A vote for Dr. Kirklin

If you believe in genes as some do, Kirklin wins hands down. His Daddy was a
pioneer heart surgeon and most agree one of the greatest of his era :the grandfather who I was priveliged to know was Chief of Radiology at Mayo's and one of the best radiologists in the country.You will be better than ever after you get a good mechanical valve. You will need to learn about Coumadin and this website is here to help you.

 

[gadgetman]

As I said before, Dr. McGiffin was no stranger during my stay at UAB, especially while in CICU. My wife feels he was actually "surprised" that I came through the way I did.

Anyway, the wife said in passing one day when we were talking about Karl's pending surgery that we, as "old hands" at this, could travel up to UAB and lend some encouragement. We are about a 4 and 1/2 hour (less if no State Troopers ) and have somewhere to stay already. Just let us know if we can help in that way.

Good luck on your decision and, once made, don't look back. Hope I don't have to face any more surgery anytime soon but if I do I know God will help me through it too.

May God Bless,

Danny

 

[weekycat]

When I had the valve repaired, I was assured it would last a lifetime. Gail

Hi Gail, it seems we have a few things in common, I had my mitral valve repair almost 3 years ago at age 43, (almost 44). My surgeon told me ahead of time that with a repair, there is always a small chance that you will eventually need a replacement, but after the surgery he told me it would "last a lifetime".

I still worry about it though, especially when I have tightness or pain in my chest, but I had an echo a little over a year ago, and everything still looked good. I would like to have one done yearly, but the cardio has never ordered that...so I always feel like I'm begging them to do one.

Good luck with whatever decisions you make, and keep us posted here, okay?

 

[Debrinha GT]

Keep your chin up!

Keep your chin up!

Hi there Blessed, and I hope you're feeling better by now after having heard from the other members. I've never had a repair, but I have had three mitral valve replacements so far. I've heard about the increasing risks of reoperations, but well, I sincerely hope I have enough tissue left for my fourth surgery which will be in a couple of years. Again, I try not to think of it much, and just get on with my life instead of wondering when I'll have to go under the knife again., and I'm in favour of living it to its fullest, which's exactly what I've been doing. I'm very happy with my last surgeon, Dr. Francisco Diniz Costa who's also a scientist. I want to wish you good luck for your replacement and by what I've read in other posts here, people have given you very good advice. Take care and God bless!
Débora from Brazil