new and overwhelmed

[TiredTickerInTx]

Hello all
I just found this site a couple days ago on a search and I must admit there is an awful lot of information here.
A brief history: In February of this year I had an echo done and was informed that I had an aortic stenosis that was considered moderate to severe (1.1) and was told to have it checked yearly for any changes.
Went to ER a few weeks ago with severe chest pain and trouble breathing.Kind of thought that it may be residual pneumonia from earlier in the summer. Admitted to hospital for tests and observation. New echo shows a considerable progression and is now considered severe to critical (0.6).
Set up a heart cath to be done which confirms progression of stenosis as well as an aortic aneurysm that as of now measures 4.6-4.9 cm. I have a bicuspid valve that I was not aware of until now.
I have been told that things are to the point that the valve needs to be replaced as well as the aorta repaired with Dacron. This is a bit much as I am still recovering from major abdominal surgery that was done this summer.
Heck I still have open wounds on my abdomen and now I need my chest cracked open.
Anyway,I have no idea where to begin on this. I am looking for resources on everything from which type of valve to get to finding the right surgeon and facility. As I said before there is a boatload of information here but I don't know where to begin. Is anyone familiar with surgeons in the central Texas
region? I have heard that Austin Heart Hospital is good. I am kind of looking at a tissue valve as I am 50 years old but I have an extensive surgical history and I am most certainly looking forward to more if things follow the pattern to this point. So I don't think coumadin for life is a very good option but then neither is another replacement in 10-15 years.
I know this is pretty vague but hopefully you all can start me in the right direction. Any advice or opinion would be appreciated and where else to start than with those that have been there.

Thanks
Kevin

 

[Lynlw]

Hi Kevin, Welcome, I can't imagine finding all this out while you are still recovering from another major surgery. One good thing is there are really good hospitals in Texas, I'm sure people that use hthem will give good advice.

 

[Danny]

Hello, and welcome to the site. Sorry you had to find us this way, but you found us. I just went to Texas Heart Institute in Houston...They have a list of heart surgeons on there website, and i would recomend THI to anyone...You will find alot of good advise here. Good luck.

 

[ShezaGirlie]

Hi Kevin ~~ just a quick welcome to you. I'm just down the road in New Braunfels, but there are several folks on here from Austin who come to mind - Louise and Spartanator to begin with who've had their surgeries in Austin and can fill you in on the local docs.

THI in Houston is a premier medical facility and Dr. Coselli there is the aortic valve man. Several of his folks on this website as well. Do a "search" and hopefully you can glean more information.

Your plate sure is full, but you've now found the best place to be..

 

[AgilityDog]

You have a pretty good choice of doctors. Dallas area, Houston area, and I'm sure there are some in Austin--someone will log in with names soon.

Doesn't sound like you have a lot of time to waste, if this little puppy is getting bad this quickly. I know it's gonna be rough, but you don't have a viable choice.

I don't know what kind of abdominal surgery you had, but if you still have an open wound, that might delay your heart surgery because of infection risks. Find a surgeon asap and discuss.

 

[Kathy McCain]

Hi Kevin

I had my surgery done at the Texas Medical Center, In Houston. St. Lukes Heart Institute to be exact. Dr. Ott did my AVR. I believe, if you live in Texas, that's the very best place to start. They have several great surgeons! Highly reputable.

Sorry you are having all these problems. As soon as the Dr's give an okay for the surgery, I would go for it! I'm sure they will advise, that you be sufficiently healed from you abdominal surgery though.

Good luck and keep us posted!

 

[MarkU]

Hi Kevin & welcome.

Sounds like you've had some tough things to deal with lately.

I've had my St Jude valve now for almost nine years. I picked a mechanical mostly to minimize the probability of repeat surgeries in the future ( I was 47 at the time).

Coumadin has really not been an issue with me. I get checked every six weeks, but not so bad with the cute redhead nurse at the Coumadin lab

I thought my choice was pretty clear nine years ago, but there have been a lot of improvements in both mechanical and tissue valves since then and I think I'd have a tougher time making a choice if I had to today.

I'm sure you will make the decision that is best for you.

Good luck,

Mark

 

[bvdr]

Hi Kevin. Welcome to this website. Even though you are recovering from major surgery it seems you are really thinking clearly on this issue. Whether or not it is a proven scientific fact, it seems that the worse valve issues get the faster they get worse. Maybe you don't really have the choice of waiting much longer to get your heart & aorta fixed. If the open area you are speaking about is open to heal from inside out, and not open because you have infection in a surgical wound then maybe you might just have to double up your recovery. Hopefully when you are recovered from your valve surgery your other issues will be over and you will be good to go! If you do have to delay your surgery then I think your job will be to put few other demands on your heart other than healing.

I don't know what your surgical history has been but it sounds like it has been quite extensive and you may have ongoing issues that will likely bring you to the OR again. This is an important thing to consider when choosing your valve. On a day to day basis, taking Warfarin is no big deal to most people. For some people it is. Warfarin and GI bleeding issues, Ulcerative colitis, CD, and other problems with the colon don't mix very well. This is my opinion. An unhealthy GI tract complicates not only bleeding issues but also makes it more difficult to regulate your INR (INR is the term used to state how much effect warfarin is having on delaying the clotting of your blood). One of the functions of a healthy gut is the manufacturing of vit. K to which warfarin(coumadin) is an antagonist.
I have a St. Jude mechanical mitral valve and have been on warfarin for almost 7 years. I have GI problems that have presented a real challenge to me at times. I'm not saying it isn't doable but it is a factor to consider. Know too that choosing a bio-valve is not a guarantee you won't still end up on warfarin because of rhythm issues such as the development of atrial fib.
It might sound a little overwhelming but although it will affect your life....and should improve it, the vast majority of people do well. A site like this will help because there are so very many people here who understand some of the issues you face.
Educate yourself enough to be an informed member of your health care team. Get copies of your test results, ask questions, and get involved. Welcome again and make yourself comfortable. You have a lot of reading to do!

 

[buncle]

Kevin sorry to hear about your difficult situation.Two excellent surgeons in the Dallas area are Dr. Michael Mack and Dr. William Ryan.They both work out of Baylor heart hosp. in Plano.

 

[Kevin]

Kevin, I'm sorry to hear of your sudden turn; particularly having to go through something like this right after another medical condition.

This is definitely a case where your surgeon will be able to help you weigh in on which valve to choose. You may be limited based on the dacron repair and your other health conditions and potential other forthcoming surgeries.

Take comfort in the fact that no matter if they recommend a tissue or mechanical valve - both will dramatically improve your situation!

Take your time and read up in this forum as much as you can.

There are no stupid questions here and like me, I guarantee you will find the most lovely helpful people here who will step up and support you whole-heartedly.
Kev

 

[TiredTickerInTx]

Thanks for all the replies everyone.
Right now, at this very moment, which I am getting the impression will change often, I am leaning on the side of a tissue valve.
The surgical recovery I am going through right now is from my 5th colon resection in the last 4 years. I had problems with fistulas that kept coming back about two weeks after each attempt to fix them. At one point I spent over a full year in the hospital without ever leaving. So you can understand why another procedure scares the crap out of me. Last resection done in July and so far no fistula. I do get some wound drainage on occasion so that is another strike against warfarin. I do not see the wound being completely healed before I need this done. I may not have a choice though.
Well lots of research to do so I best get after it.Thanks again for the replies and I'm sure that this site is going to be an invaluable tool to myself as well as others.

Have a great evening
Kevin

 

[Jkm7]

Just want to say Welcome, Kevin. You certainly have had more than your share but you seem to have a great attitude and that will help see you through.

One thing to think about when choosing tissue or mechanical valve is the bridging that needs to be done if you are on coumadin and require any number or procedures and even many tests. Some require you go off coumadin up to 5 days prior to the procedure and then must begin it again after and it sometimes is pesty getting back to your proper range. If you anticipate having a number of procedures in the future, you may factor that in your discussions with your doctors.

All of us who have been through this surgery, either ourselves or with our loved ones, experience that anxiety and stress until we choose which valve we think is best for us.
There are a number of very knowledgeable people here who are generous in sharing their information and time and we all are here to help each other in any way possible. Only those who have been where we have walked can fully understand.

Welcome to VR.com. Ask any and all questions. Someone usually can help out with most of the questions.

 

[Guest]

Cardiothoracic and Vascular Surgeons

Cardiothoracic and Vascular Surgeons

You cannot go wrong with Austin Heart. The cardiologists are outstanding. I had my surgery at Seton on 38th.

My surgeon is part of Cardiothoracic and Vascular Surgeons, you can check their site: Cardiothoracic and Vascular Surgeons

If memory serves me, Spartangator's surgeon was Dr. Oswalt.

I'm close to my 2nd valversary. Everything is great, no issues with coumadin, I home test, I eat and drink whatever I want, and I'm able to be as physically active as I was before.

 

[ctyguy]

Kevin....sounds like you have had a rough go of it so this news certainly doesn't help. You will find great feedback here on both tissue and mechanical valves. I went mechanical primarily due to my age when I had the surgery (43), and my desire to avoid future surgeries if possible.

Keep up the positive attitude, its going to serve you well on this next little journey you have in front of you.

 

[Bill B]

Kevin:

Find the best surgeon for you first. Others are giving you good advice on Central Texas. Don't worry about the pain. 13 days ago, I had what you are about to have done. Pain was not a significant problem, and my surgeon had told me it would not be. He was right. As to choice of valve, listen closely to the surgeon. At age 50, the usual choice is mechanical, but the main factor is your over all health (i.e., whether you have other significant diseases like coronary artery disease, kidney disease, lung disease, diabetes and others that can affect your life expectancy) or whether their might be some reason you cannot take warfarin. I did not want warfarin either and tried to find good justification for a tissue valve in my case, but ultimately the choice was clear and I went with mechanical as my surgeon had strongly recommended because I am only 61 with a long life expectancy (no other disease).

Best of luck to you!

 

[ALCapshaw2]

Kevin,

You may want to start reading through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of pertinent information on those related conditions which often are associated with Aortic Aneurisms.

My recommendation would be to find a Surgeon who has Extensive Experience dealing with Surgery of the Aorta (which is a step above 'normal valve surgery') and repairing Aneurisms.

Dr. William Ryan in DFW comes to mind. One of our former members credits him with saving her life after her First Valve replacement began to fail (due to stitching / tissue issues from another surgeon in another state).

Also some the surgeons at the Texas Heart Institute in Houston. They have Several Top Rated Cardiovascular Surgeons including Denton Cooley (is he still practicing?),
Joseph Coselli, ..... Duncan, ..... Gregaric, and David Ott. Several of our members have reported good results at THI.

A nurse friend in Austin gave me the names of the Local Surgeons in Austin. I've asked her about their experience with Aorta / Aneurism surgery to narrow the list. I will add those when I hear back from her.
http://www.cardiothoracicandvascularsurgeonstexas.com/physicians.html

'AL Capshaw'

 

[ALCapshaw2]

Kevin,

I talked with my Nurse friend in Austin about your situation and co-morbidities. Given your issues, she recommended Dr. Coselli (who she knows personally) and Dr. Ott at Texas Heart Institude as possibily the most experienced in your needs. She also said that Dr. William Ryan in Dallas is another good choice along with Dr. Steves ..... (sorry, I forgot his last name...I think he is an associate of Dr. Ryan's).

'AL C'