Newbie with many questions

[GSman]

Hi All,
End last year I (46 years old) was diagnosed with a bicuspid heart valve (minor regurtitation and calcification) and aortic aneurysm. The aneurysm was confirmed with a CT scan: 4.9 cm. the surgeon I am seeing recommends aortic root replacement surgery soon.
Reading all the messages here is really helpful, still I am scared. I have a little baby boy and want to be around for him and his mother.
Any recommendations for an experienced good surgeon in Sydney, Australia? I am currently with Dr. Michael Wilson. Is it worthwhile to consider having surgery in one of the top clinics in the US?
How long does recovery take? When can one return to an office job with travel and long working hours?
I am also still struggling with the choice mechanical vs bio prosthetic valve.
What a mess.

 

[Ola Thoresen]

Re: Newbie with many questions

It might not be the most reassuring to say, but remember that if they recommend an operation, it is because they believe that to be the safest alternative. In other words, you take a greater risk not doing it, than going through surgery.
The risk of complications is really, really small, especially if you are an otherwise healthy person.

I had my aortic valve replaced Jan 3. this year, and had my last regular checkup at the hospital today - less than 2 months after. I'll continue to do INR testing once a month or maybe bimonthly, and I have one last ultrasound check to attend, but other than that, they now said they consider me as recovered.

I have been working 50% for the last two weeks, and will get back to 100% on Monday.

I started exercise carefully after about 4 weeks, and played my first squash session this Tuesday. Feeling in better shape than ever before.

The whole thing was also much less painful than I thought. It hurts, of course, and it is hard to sleep on the sides for a few weeks, but I never experienced any real pain.

Of course everyone is different, and complications can happen, but I hope my story at least take away some of the fear.

 

[Mom2izzy]

Newbie with many questions

A little over a year ago I was told that I needed valve surgery. I was 40 with a 3 year old daughter. Leaving my child without a mother was my BIGGEST concern as well.

Talking to my surgeon, reviewing information I could find on-line, and talking to people here helped me a lot. The surgery has become pretty routine for our surgeons (even if it is not routine for our bodies).

I managed to stay positive and make the most of my pre-surgery time with my little girl. Worrying about it wasn't going to change the outcome, and in the very very very small chance the outcome wasn't positive, I didn't want my girl to remember her mom as a big ball of stress.

Pre surgery, it was hard to believe that everything would get back to normal so quickly afterwards, but it did. I was back at my desk job after 2 months (surgeon said I could have gone back at 5 weeks...physically, I was ready, but not mentally).

I think having a child around helped my recovery a lot. She gave me a reason to want to get better more quickly and gave me that extra push to get me going with my walks and exercise.

The very worst parts I remember are:
- 1 day of really bad muscle pain in my neck, back and shoulders (I couldn't tolerate the "good" drugs.). They had a massage therapist at the hospital that helped a lot.
- Some dizziness and nausea as they tried to find the best combination of meds for me...I ended up with just Tylenol and Motrin for pain management. The dizziness was really only a problem because it made it tough to do the walking. I still had some dizziness when I went home...It ended up being a side effect of the Lasik (sp?), so I got off that drug ASAP.

Yep, that's it...a little pain and some dizziness...not nearly what I expected...

For question regarding US vs. Australia... I think there are members here who will tell you about good facilities and surgeons in Australia. I don't think I would want to be that far from home for surgery. Also, I wouldn't have wanted to fly that far very soon after surgery, but that's just me.

I can't be much help on valve choice since I ended up with a repair. I had chosen bio prosthetic as a back up plan only because my eating habits are inconsistent and I've never been great at remembering meds every day. However, the benefit of "no more surgery" (hopefully) with a mechanical valve was tempting.

Hope some of that is helpful to you...

 

[epstns]

I think Ola hit an important point. When the docs say it is time for surgery, they have reviewed the probabilities and concluded that your chances of living are better if you go through surgery now than if not. This may sound cold, but they have calculated that your chances of dying are higher if you do nothing than if you have surgery. That's what it all boils down to, and I would trust in them. If you want to, get a second opinion, but IIRC most docs start to push for surgery when aneurysms get to 4.8 or 4.9.

Yes, the surgery is a pain, but the mortality rates are less than 2% - and that 2% includes the very elderly, weak patients as well as patients who are very, very sick. You are still young and healthy, so your chances of getting through this are probably above 99%. I'm not a doc, but that's what my doctors told me, and I'm still here to tell you about it.

 

[dick0236]

How long does recovery take? When can one return to an office job with travel and long working hours?
I am also still struggling with the choice mechanical vs bio prosthetic valve.
What a mess.

Hi GSman. We understand your fears since we have all been there....and done that. The surgery, while serious, is not a "game changer" for most of us and we continue to live a nearly normal life.......altho it may take a little while to realize that. Read all you can, but be watchful of some of the "crap" you find on the internet.....but seldom on this site LOL.

 

[themalteser]

...... Read all you can, but be watchful of some of the "crap" you find on the internet.....but seldom on this site LOL.

That is very well said! Educate yourself, here is a fantastic place to discuss your concerns, but be very careful what you read on the net... Missing pieces of the jigsaw can leave you with lots of anxiety for no reason at all... I "learnt" the hard way! And the more crappy things you read, the more of a habit it becomes, as if like you're testing how worse can it get! ....

"Be strong and take courage...."

 

[VegasBAV]

I'm 41, I returned to my office job part time in 3-4 weeks and full time after about 5 weeks. I don't work long hours. Heart surgery is a very good excuse to just skip out of work early for the first few months after surgery.

You'll probably want to avoid travel for 4-8 weeks after surgery, because it's hard to carry luggage and you don't want to be on a germ filled airplane and get a cold. Sneezing and coughing are not fun right after surgery. I did fly 4 hours from Cleveland to Las Vegas a week after the surgery. If you flew from Australia to the US for the surgery, I'd say you'd be able to fly back 1.5-2 weeks after surgery, but it wouldn't be enjoyable.

I got a tissue valve, and I'm glad I did. I don't fear the next surgery.

I hope this helps.

 

[GSman]

Thanks to all of you who shared their stories. This helps taking away the fear ( a little bit at least). I see a several of you choosing a bio prosthetic valve, even though this means another surgery. I still a haven't made up my mind, as it is difficult to predict how life quality will be affected by warfarine.
Thanks again to all of you!

 

[ramjet]

Dear GSman,
Your choice of valve has more to it than just the potential issue of warfarin. As your surgery involves the aorta as well, it might also depend on your exact anatomy and exactly what needs to be repaired or replaced, and it may just be that there is no real choice of valve, it just depends on exactly what teh surgeon needs to do, and so a mechanical valve might be the way to go...in fact you might decide on a tissue valve, but during teh surgery it may become very clear to the surgeon that a mechanical valve is the only real option because a re-operation may be too tricky, and it would be negligent of the surgeon to then palce a valve that put you at unnecessary risk in teh future...so keep an open mind and seek the advice of your surgeon. There are many very good surgeons here in australia, so you won't have a problem getting referred to a very good surgeon. Best wishes and don't be fooled, there are many very very good, world class surgeons here in Australia.

 

[dick0236]

............ as it is difficult to predict how life quality will be affected by warfarine.
Thanks again to all of you!

I have never understood where this "concern" come from. Warfarin is manageable with just a little "extra" effort and most of us who have been on the drug for a long time agree that warfarin "management" is NOT a big deal.......now excuse me, the rainbow trout are biting and I'm "goin fishin".........right after I leave the gym.

 

[Heart Of The Sunrise]

GSman: Much of what you will go through is very personal as are the choices. I can relate what worked for me. Shock & denial and sleepness nights got me nowhere. Being blessed with a great family doctor who discovered an abnormal EKG, which ultimately lead me to a great cardilogist and world-class surgeon were truely gifts. My key to acceptance and making my choice was learning as much as I could about my condition and my surgeon. I was lucky that what I felt was best for me, my surgeon does all the time. I describe it as a virtuoso guitar player playing guitar behind his back. Dr. Bavaria and Penn do many of these procedures a week. Piece of cake for them. I am in good hands. I am sure you will be too. Just do your homework and get the best care you can find!:thumbup:

 

[ramjet]

I agreee wholeheartedly with Dicko and sunrise, it absolutely is an individual (ie you and your surgeon) choice regarding your valve type etc etc, because circumstances and conditions etc are all somewhat unique, and whilst warfarin for me was a piece of cake for the 3 months i had it, and the same for dicko, ..but for a small number of people it can be a real challenge or even a "no no"...eg if you have a particular medical condition or if you have a malformation in your brain or a particualr cancer or whatever, warfarin can be a real problem due to the increased bleeding risks, so unfortunately, on a forum like this you can't get the precise advice you need, because there may be something else "behind the scenes"...and dicko, for a small number of people, warfarin is a really big issue...the problem is that some people hear or read about that small number of people (many of whoom have a very different medical background or medical issues along with their heart valve) and they start to worry unnecessarily about warfarin, and mostly its unwarranted...and for some poeple having blood tests regularly is a big issue, but for most of us we just take that in our stride..etc, so we are all different, our situation is different, or our complete medical picture is different, and we all wish you well, and thank you for sharing your situation, because at at least we get to hear and share real experiences and concerns, and that way we can at least ask the right questions of the professionals who are caring for us...and thats the key, asking lots of questions directly to your specialist and surgeon, as they have the full picture. Also, something else to always keep in mind, no one gets to be a cardiac surgeon without having to jump through so many hoops they feel they have been in a circus for years before they let them loose, so it can be just as good, if not better, having what appears to be a more junior surgeon (who has trained recentl;y with a wide number or senior experts) rather than a surgeon who has done lots and lots and is maybe just a fraction out of the loop when it come to your particular situation, so, what I am saying, is please be careful if you start "doctor Shopping" based on what you read...younger or older and more experienced, rest assured they are highly trained, they are reviewed and reviewed again, and sometimes the very best surgeon can have some bad outcomes because they take on the very hardest cases that some others have refused to operate on, and the seeming best surgeons have concentrated on doing many of the so called less challenging cases...and besides, some people will have no choice about what surgeon they have...theya re all well trained, and its all about the actual surgical and operating theatre team, because successful heart surgery is very much a "team sport"...and it starts with asking your sugeon the right questions, take care GSman

 

[Lauberth]

hello gs man, i understand how u r feeling cuz i also felt the same way, and i also have a little on (15 month old girl) my surgery was almost 11 weeks ago and i just started cardiac rehab. like u my main worry was to b able to be arround for my child. recovery is about 2 month...but really dont feel 100% until after a year. as far as returning to work i'd say about the same time, it really depends on how you r feeling, but that is usually the average. im 31 years old and went for mechanical and u r still pretty young and i feel u should go mechanical as well. tissue valves dont last as long..(8 to 10 years. 15 at most), and mechanical last 30 to 40 years mor even longer. the new mechanical valves they use now like the on-x which is what i have they say can last a lifetime. the thing with the mechanicals is that u have to be on blood thinners for the restg of your life and a lot people dont wanna deal with that...but if you r able to manage your inr...you get used to it eventually. so i recomend mechanical..but is ultimately your decision....good luck!...everything well be ok...god is with u and your family.

 

[carlosmontero]

Recent AVR with Dr Wilson

Recent AVR with Dr Wilson

Hi GSMan,

My name is Carlos. Twelve days ago (Thursday) Dr Wilson told me I should consider having the operation done as soon as possible. Today is my seventh day after the operation and I am at home, feeling better every day. I would recommend you not to doubt having the operation done by him at the RPA Hospital. If you have a look at his resume, you'll see he's been doing this for more than 25 years, and he and his team are excellent. I wouldn't spend money going to the U.S. or anywhere else to have this operation. The care you will receive at RPA through Dr Wilson is world-class. Save that money to go on holidays with your daughter when you are recovered.
And I tell you this, because I'm 33 years old and they offered me to have the mechanical one or the tissue one and when they told me they don't know how long the tissue one will last (maybe 5, maybe 10, maybe 15 years), and also, the increasing risk anytime you will have to change the valve, for me it was clear. I thought of my (future) child and I thought I wouldn't like to go through it again and leave him/her alone even for one or two days. With the mechanical one, I have to take warfarin for the rest of my life, but having spoken with other people who had or are still having warfarin, their quality of life didn't really change. I hope this message helps you with your doubts. Otherwise, I am happy to meet you and talk about it (and choosing the surgeon) whenever you want. I will pass you my contact number by private message.

Best wishes to you.

Carlos

 

[Agian]

Travelling overseas for cardiac surgery would be a big deal and very expensive. It would be extremely anxiety-provoking to have to organise such a trip. You would have to spend an extended period of time post-op in the US, otherwise risk having a problem on the plane. Australia has good surgeons, and valve replacement is pretty routine nowadays.