New to the City/Country - planning for the surgery in March 2012

[Vidhya]

Hello All,

I am so glad to find this forum. My husband, Rajesh(32) needs a Aortic valve replacement surgery. We are quite new to this city/country and thus looking up to you all for help in finding the right surgeon. I may not be posting this in the right thread, but i would be happy to repost it if you can direct me to the applicable thread.

Rajesh has a Bicuspid Aortic valve (the docs found that when he was a year old) We have been doing Echo and other tests regularly like suggested by the doctors. Until 2010, the doctors did not talk about surgery and said that his heart is perfectly fine. However, when we went for the regular check ups in NOv, 2011, the doctors are strongly recommending a surgery within 6 months. I do not understand what went wrong in just one year that the gradient went up like 30 units! Quite scary. Although, he does not have any symptoms as of now. Now, we are planning to get the surgery done by March, 2012 and are keenly working on finding the right surgeon.

We live in Houston, Texas and as far we have researched, St. Lukes is the best hospital for such a surgery (Right?) Can you please suggest best surgeons in Houston, Texas? We are so fortunate to have Texas Medical Center right next to us. But, we are not able to figure out a way to narrow into one Hospital, one surgeon. Is there a reliable comparison database that I can look at?Is it true that we cannot consult with different surgeons working in the same hospital? My husband fears that there will be internal communication and it does not "look good" if we consult with a different surgeon belonging to the same hospital as of the previous one.

My husband and I will be glad to meet with people living in Houston who recently underwent Aortic Valve Replacement surgery to learn more about it. Please let me know if you know somebody who will be willing to meet us.

My husband is just 31 and I am worried if he will have to undergo another sugery after 25 years. Do you have data points supporting this?

The thought of dealing with Insurance People itself is scary. Any suggestions, precautions that we should keep in mind?
I would truly appreciate any and all suggestions from you. This forum has helped so many people like us and looking forward to hearing from you all.

Vidhya

 

[dick0236]

My husband is just 31 and I am worried if he will have to undergo another sugery after 25 years. Do you have data points supporting this?
IVidhya

Hi Vidhya and welcome to the USA and to this forum. This group will be able to give you and your husband a great deal of information and support. I don't know much about specifics of OHS in Texas, but I do know that many hospitals in Texas are well known and respected for their expertise in this kind of surgery. One of my surgeons, Dr. Richard Wood, who was on my surgical team at the UofKy hospital went on to become Chief of Cardiothoracic Surgery at Baylor University Med Ctr....so these Texas doctors know what they are doing

I was also 31 when my valve was implanted and I still have the original valve almost 45 years later. Your husbands valve life will depend on the type of valve chosen as well as other medical issues that can cause replacement of an implanted valve. Spend some time reviewing the pros and cons of the various valves available....make an informed choice and go on living a normal life. This surgery, while scary, is reasonably routine.

 

[Ovie]

Welcome. I'm not familiar with anything in Texas, other than they are not to be messed with

I can't speak for all St. Luke's hospitals, but the one where I live is where they first found my heart murmur at 22. However I was told it wasn't a murmur, but none other than a missing heart valve, that was the exact diagnosis I was given by the doctor. Now that seemed impossible to me, and I hope that "doctor" was eventually let go for being a <explicit>, I ended up going to Mercy Medical center who gave me a proper diagnosis. Granted I live in a smaller city, and I'm sure each SLH is different, but other than attractive nurses, I've had nothing but trouble with that chain of hospitals.

THAT IS NOT TO SAY THE ONE IN HOUSTON IS BAD, just my personal opinion.

Good luck on finding the right surgeon.

Also as far as consulting different surgeons in the same hospital is a bad thing, I disagree and don't understand that as a problem, if a surgeon is going to be bitter because you consulted another one you probably don't want that surgeon anyways.

 

[Mentu]

Vidhya & Rajesh, welcome to our community here in VR. As Dick has told you, open heart surgery is serious but has become much safer for the patient. St Luke's Hospital and the Texas Heart Institute are among the best cardiac centers in the world. The hospital is rated so highly not just because of the quality of the surgeons but also because of the excellent care the supporting staff provides. One of the things you might consider is to request a tour of the hospital so you can see the facilities that are available. This is the kind of thing that can boost your confidence as the date for surgery approaches. Feeling anxiety is very normal at this point in your progress but always try to keep in mind that valve replacement is performed so many times across the world because of the great benefit it offers in restoring health. Again, welcome to VR.ORG.

Larry

 

[Vidhya]

Thank you all so much for the warm welcome.

Dick - I am sooooo glad to know that your valve is doing great even after 45 years. My husband is so relieved that it is possible to avoid another OHS! BTW can i know what type of valve do you have on you? Can i get more details on that, please?

Ovie - "Also as far as consulting different surgeons in the same hospital is a bad thing, I disagree and don't understand that as a problem, if a surgeon is going to be bitter because you consulted another one you probably don't want that surgeon anyways" - That s an amazing logic and will to stick to it. thanks again. here in Houston, the Texas heart Institute is associated with the St. Lukes Hospital and they have the best ratings. ( I dont know if that is the same with other branches)

Larry - Thank you for the suggestion. we will surely request for a tour around the hospitals.

Again, if you know anybody who has just gotten their surgery done in houston, please let me know. We ll be glad to meet them. My husband is terrified about the pain and recovery process that he is having sleepless nights. i believe he will feel better if he meets somebody who has recently recovered.

Thanks again for all your help and looking forward to learning more and a smooth surgery experience.

Vidhya

 

[Vidhya]

Also, is it important to have a cardiologist and a surgeon? Or the surgeon will himself refer us to a cardiologist?
Please explain the procedure and importance of having a cardiologist.

thanks again

 

[sarahsunshine]

Hello Vidhya,

Fear, at this stage, is perfectly reasonable. I would recommend that you go through the “what to expect post heart surgery” thread in the “post op” forum (http://www.valvereplacement.org/forums/showthread.php?36996-PDF-from-STS-What-to-expect-after-OHS) and read through the various .pdf files that you’ll find in that thread. Each has different information, but helps understand what to expect.

In terms of pain, I have not had heart surgery (my step-son has and is why I’m here), but many people range on the spectrum of “minimal pain”. Pain management is a very important part of healing and there are all sorts of good drugs to deal with that short term. On person said that the pain associated with heart surgery was minimal compared to surgery on his broken arm.

Another thing to know is that fear is usually related to the unknown. I would recommend that you help Rajesh with putting together a book where you write down those fears. Once you have them written down, you should try to find more information about those things. Truth be told, most people around here have researched and gone through these things, so don’t feel shy. Ask away. You may want to post those questions in the “Heart Talk” forum, though, since it has the most traffic. Also, try using the “search” function, and you will likely find a lot of those questions in past threads.

In terms of finding a surgeon, and doing surgery, I would recommend that you look into health insurance ASAP (I sure hope you have some). It may be expensive, but it probably beats paying for the surgery and such out of pocket. Others can probably help more than me since I’m in Canada.

Also, in terms of why one year can have so much change, who knows? Sometimes things just happen, but when it comes to your heart, they tend to happen quickly when they do happen. My step son went years without needing surgery – 9 years past what they thought (they thought 3-4, he was 12.5). Then suddenly, they wanted him to have surgery with 4 months. If they say it is time, you can get a second opinion, but likely, it’s time. There’s enough people requiring open heart surgery that they don’t need to make it up.


Best!

In terms of the cardiologist and surgeon – The cardiologist, in our experience, is a permanent doctor who does annual exapms, and follows your progress. The cardiologist generally refers you to a surgeon (or you get a referral sent to the surgeon you choose from your cardiologist). The surgeon may do some follow up themselves depending on how closely they work with your cardiologist.

I guess that’s a long way of saying – get a cardiologist. Then speak to the cardiologist about a surgeon. Likely your husband has a cardiologist back home. Likely, your new cardiologist in Texas will want to run a bunch of tests to confirm the tests done back home, so in essence, you will get a second opinion in that way.

Also, you seem to be quite fluent in English, but if your spoken English isn’t as good, you might consider bringing someone with you who can translate for you (both directions). Many hospitals have someone to help out that way, but you may need to contact them ahead of time.

 

[dick0236]

Dick - I am sooooo glad to know that your valve is doing great even after 45 years. My husband is so relieved that it is possible to avoid another OHS! BTW can i know what type of valve do you have on you? Can i get more details on that, please?
Vidhya

Mechanical valves have a design life well beyond a human life span. If there are no other problems, there is no reason that the valve will not last a lifetime. That's what my docs told me in '67. I really didn't believe them, but it appears they were right. My valve is considered the "granddady" of all valves, Starr-Edwards Ball Valve. Unfortunately, it was taken out of production about five years ago, in 2007....after nearly fifty years of use. Edwards Lifesciences was the manufacurer and they are still a leader in valve technology, although they no longer manufacture mechanical heart valves.

 

[sarahsunshine]

Just to give you the heads-up, if he indeed needs his

valve replaced and not repaired, the big question is going to be “Tissue or Mechanical”. There are costs and benefits to both.

Most people with tissue valves only need anticoagulation drugs for a short period of time (3-6 months), and then go on to live a completely normal life. Most people with tissue valves need re-operation between 7-20 years down the road. The younger you are, the shorter a valve tends to last.

Mechanical valves are supposed to last a lifetime (or more). Unfortunately, with a mechanical valve, you need to be on anti-coagulation medication as long as you still have your mechanical valve. Anti-coagulation is usually controlled with warfarin (or Coumadin – same thing different name) by measuring your body’s INR (measure of anticoagulation). Warfarin can interact with many things, and your INR level needs to be kept constant. For many people, this initially sounds very scary. In my experience (and most other people here), it is actually a piece of cake, and simply required you to take a couple pills at the same time every day. Once you get back in your typical routine, then everything stabilizes itself and there is rarely a problem (we’ve never had a serious problem over 12 years with my step son, and he’s a growing kid requiring changes in dose as he grows). Considering your husband’s age, most surgeons will highly recommend a mechanical valve to decrease/eliminate the chances of requiring later surgery.


My step-son (12.5 years old), just had 2 mechanical heart valves implanted in late November, 2011. His surgeon thinks they should last until he is in his 90s.


As with most other things, there are many different types of mechanical and tissue heart valves. Many people on this forum have done their research and come to different conclusions on what is best for them. The mechanical valve that is most commonly referred to these days is the “On-X” valve. If you look through people’s signatures, you will likely come across many valve types and sizes. You don’t need to worry about size. That is the surgeon’s job once he is inside.

 

[Vidhya]

Sarah,

thanks for all your suggestions. we have scheduled an appointment with a cardio in St. Lukes and are going to request him to refer us to the best surgeon. Rajesh has been scheduled for a CT scan on monday.

It seems Mechanical valve is the only choice available for rajesh's condition. Hoping to narrow down to a surgeon/schedule a date by the end of the month.

Thank you all for your suggestions.

I shall keep logged in for more information.
Vidhya

 

[Vidhya]

when we try for a baby???

when we try for a baby???

Hi all,

I have this question that i cannot take out of my mind and also not very sure if i should ask. I am going to ask anyway. As i told you, my husband and i are married for the past 3 years now and do not have a child yet. we were planning on having one this year, but now with the surgery coming up, i don't think it is possible anytime soon!!

So, will being on coumadin have side effects when we try for a baby? is the heart condition genital? will My husband being on coumadin affect the chances of pregnancy or cause difficulties for the baby? Is there any other alternative?

Please let me know if there is something that we should do before the surgery to reduce difficulties(if applicable at all)

Thanks again for helping us out in this time.
Best,
Vidhya

 

[Greg a]

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future ..... as to your last post sexual activity is not hampered but rather only delayed a few a weeks


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[sarahsunshine]

If it was you having the surgery and on life-long anticoagulants, then it would be a problem. However, the problems related to men's fertility are hardly mentionned. There are a couple studies that suggest that congenital heart defects do have a genetic component, however they do not seem to be obligatory and frequently skip generations. As much of a consideratino as it would be, I wouldn't make it a large one. There are several dads on this site who have healthy children despite being on warfarin at the time of conception.

Have fun!

And as much as it may be a consideration in terms of timing, it would be nice if dad could be post-surgery after baby is born!

 

[tom in MO]

I have BAV and no one else in my extended family or my two children have the problem. Warfarin has been around for years, if there was a male fertility problem, they would know by now.

 

[Vidhya]

Thank you all again. That clears a lot of tension.

 

[Jkm7]

Without getting into conversation about anyone's thoughts on the matter, I just want to mention your DH could save sperm in advance of his surgery prior to being on anti-coagulants if that is something that worries you. That sperm could later be implanted.

 

[enkaynj]

Welcome to the forum and to the US.
I had my surgery in Plano TX at the Baylor Heart Hospital even though we live in New Jersey. Of course, you have great heart hospitals in Houston as well but I chose my surgeon based on the recommendation of a relative who is a cardiologist in Dallas. Good Luck with your husband's surgery. All the best. If you need more specific information, feel free to send me a private message. I don't want to promote any particular cardialogiist or surgeon. I went with a tissue valve and I was 50 when the operation was done.

 

[Mom2izzy]

Welcome! I have been in your husband's situation very recently. I had a valve issue for 40 years, and then one day it was just time for surgery. I still had no symptoms. (or at least nothing I recognized as a symptom), so it was very scary. This forum helped ease A LOT of my fears. I recommend reading the sticky discussion in the post surgery forum about what surprised people most about their surgeries. Many indicate pain is not too bad (as long as you don't sneeze) and many are up walking within 24 hours and home in less than a week. My surgeon expects that I should be able to return to work after 4 weeks (which I think is totally unfair because I just had one of my employees out for 6 weeks with a BROKEN FINGER...). My surgeon was also very helpful in calming my fears, he is very confident, almost to the point of arrogance...which is a quality I may not appreciate in random people I meet, but EXACTLY what I want in a surgeon.

As for the cardiologist question, I will just mention that some cardiologists still wait longer than they should to send patients to surgery. My surgeon would have recommended surgery for me much sooner than my cardio did. The way my sugeon feels is that you never know when a "failure" will occur and it is best to do the surgery before that. Surgery is generally easier on a healthy body. I researched and chose a surgeon that I wanted to see and asked to be referred there. Then I asked my surgeon about 2nd opinions...they understand this is a big decision especially for people like us with no real symptoms yet. My surgeon recommended several others that he felt would also be experts in the surgery I needed. Actually, I saw a local surgeon first just to get a feel for what was coming and without me evn having to ask him to refer me to the larger facility he recommended it...That made me feel great...these people really seemed to be most concerned about my well-being rather than some misguided competitive spirit amongst themselves. It's important to feel comfortable and confident in your choice because a positive attitude will go a long way.

My surgery is 10 days from now...3months ago, I was a basket case...so many decisions and fears...now I'm feeling pretty calm and just can't wait to be on the other side! It takes a bit, but you and your husband will get there too.

 

[onset]

Another good resource for finding best doctor is Adam's database http://www.heart-valve-surgery.com/surgeon-database/home.php

 

[Vidhya]

Tasks to complete before surgery

Tasks to complete before surgery

I am amazed how helpful you all are. I have been doing a lot of reading and feeling confident already. I might not have searched properly, but is there a list of tasks that need to completed well before surgery to make sure everything goes well?

Like, 1. Making sure the cars work perfectly fine!
2. informing friends and family
3. taking a weekend visit etc

would love to learn more.
thank you for all your wonderful support.

We will have a date by the end of the month.
Thanks and shall keep you posted.
Vidhya