When should i plan for surgery?

[Paleowoman]

Hi Vivekd - I would think personally it is better to forewarn your mother that surgery may be in 2016 rather than spring it on her just before it happens !

As for symptoms, I never had any at all. I mean that ! I was really fit right up to the day I had surgery (did a six mile walk and weight lifting the day before admission to hospital) but it was, apparently, time to do it. I would let your cardiologist know your symptoms asap just in case as things can deteriorate suddenly.

 

[epstns]

Vivek, although I would not recommend that you prepare a complete "end of life" plan, some advance prep may help you to remain calm. Advance medical directives and establishment of medical power of attorney may help you to ensure that your family understands your wishes and can communicate (legally) for you in the event that things go very badly. I prepared these documents, submitted them, then promptly stopped even thinking about them. They were there in case I no longer could manage my own affairs, but I had NO intent that they be called upon.

On the other hand, prior to my surgery, I did make sure that my wife had all of the account numbers at banks, brokers, or any other assets that she might not actually see in the home. I also made sure she had the relevant contact and policy information for my life insurance and medical insurance. Obviously she did not need to use this information, but she knew that should I become incapacitated, she had all the important financial information readily at hand.

I most definitely would not pay off all outstanding debts, loans, mortgages, etc., as I had every intent of continuing to meet my responsibilities. I did not tell bankers, insurance agents, or anyone else about my pending surgery - except for my employer and my immediate family. The others just do not need to know. You can choose who, among family and friends, you wish to tell, but you do not "owe" it to anyone other than immediate family and employer. Also, I would not sell stocks, bonds, mutual fund shares, etc., as this may cripple your accounts' ability to protect your assets' value and, depending upon the structure of your accounts, may trigger tax "events" that could needlessly cost you money at tax time.

Family generally understands all this. At work, I was pretty open about why I was going to be away for a while. I told my work friends and my staff what was coming up, as I wanted them to understand my viewpoint of how long I thought I would be off, and also I wanted them to know that when I first returned I would not be "at my best" but that was expected and I had no reason not to expect a full recovery. I did not want my staff to think that they would have to get used to a new boss at any time soon.

It is all rather personal. We all have different levels of comfort with sharing our situations. I shared facts, not so much feelings. To everyone aside from immediate family, I put on the strong, confident face that was just planning my return date. At home, I could share my fears, if I needed to. Most importantly, by the time I had my surgery, I knew full well that I could always come here and talk with others who had been down the same path I was facing. The advice and support here made it all a lot less scary.

 

[vivekd]

Thanks Steve and Anne

 

[Protimenow]

I had pre-syncope a couple times when I was in my early teens. I felt tingling in my legs after certain exercises, but didn't know the cause. They concerned me, but didn't particularly worry me me. When I was an undergrad at UCLA, one of the doctors heard the murmur - others also listened to it. I was in my early 20s at the time, and was told that I'd need surgery 'in about 20 years.' When I was 41, I had a good job and good insurance. I was somewhat symptomatic. There was, apparently, some enlargement of my heart because of the bicuspid valve not working properly.

I finally asked my doctor 'how sick do I have to be before I need this operation?' That was enough. The doctors realized my willingness to fix the thing. I was referred to an excellent surgeon, and had a St. Jude aortic valve implanted. Less than a year later, I was no longer working at the same job, and had no medical insurance.

My timing was good. I got the surgery that I knew I would need, reduced any further damage to my heart that can result from the heart not pumping properly, and was ABLE to get it paid for. Had I waited, the surgery may have been put off, or not done at all. Today's valves are probably improvements on the 24 year old valve clicking in my chest. Although it isn't routine, the operation is being performed by experts in this procedure. To my mind, other than the heed for lifelong anticoagulants (not much of a deal, once you're used to it), you have to question what you would gain by waiting? Are you certain that waiting won't cause damage to your heart? Are you certain that you'll have medical coverage that would take care of most of the costs?

I'm not trying to advise you, but it seems to make sense that you'll probably do better at recovering from a major surgery like this when you're still strong, than you would if you wait until you're not as strong, and wait until your heart is weakened.

 

[AZ Don]

Not sure, how to compare different cardiac surgeons.

Here's a good free site: http://www.healthgrades.com/
A good free site with info on hospitals: http://health.usnews.com/best-hospitals/rankings
And a good low cost site that identifies top Dr's by specialty: http://www.castleconnolly.com/doctors/

While recommendations can be helpful, often people simply recommend people that they know. That's not a qualification to me.

Re. your questions about things to do before surgery. It is good to have plans in place, especially if you have dependents. This is not something you need because you are having surgery. It is something you should have because we don't live forever and we don't how long we have.

 

[vivekd]

My cardiologist ordered 24hr holter monitoring test to monitor dizziness symptoms with heart rate ranging from (38-sleep, 48-resting, 150-during workout), with nothing maoe except One comment "Reported symptoms of lightheadedness correlate to bradycardia (48-51bpm)."

Then he ordered stress test Bruce Protocol. I lasted 16+ mins.As per those result, I'd ST depression
1. Normal baseline EKG.
2. Excellent exercise tolerance, 16.8 METs, without chest pain but with 1.5 mm of rapidly upsloping ST depression in the inferolateral leads.

He asked me to talk to Cardiac Surgeon again. I'm scheduled to talk to the surgeon on 2/15 and get his feedback on stress test results

I think that I should get ready for 2nd opinion and had few questions for fellow members:

1) Should I go to a cardiologist or cardiac surgeon for 2nd opinion?
2) Does it matter if I choose the doctor from same hospital? Currently my cardiologist and surgeon are from WellStar. If i choose a doctor from Wellstar, I would not have to worry about transferring my health records.

3) Has anybody tried myConsult services at Cleveland clinic for 2nd opinion? More details are available @ http://my.clevelandclinic.org/online-services/myconsult

 

[Zeke]

Hey cldlhd, Dr. Singh is 71! He replaced my grandmothers mitral valve in the 80' s. I was in good hands. I can say already ( 8 weeks post surgury) that I feel better. I am tall and slim, 6'4" 200lbs and before the surgery my arms would fall asleep any time they were over my head when I was lying down! I used to have to sleep on my back with my arms on my belly or by my side. I used to love to sleep with my arm over my eyes resting on my cheek because i have a diviated septum and this would open my nose so i could breath better. I remember many times waking up and I couldn't feel my arm, and had to use my other one to move it! Thought this was normal but since the surgery I haven't felt this once , not even the tingling that used to preseed it.
Just accually realized that. I am already doing more cardio than I was before and feeling better . I used to have to rest acouple days between workouts because i was tired and sore. Now I am up to the same levels but 6 days the last 2 weeks. Can't wait to get the okay to start lifting.
Point is I was in denial about how bad I felt . Still told the Doc I had no symptoms up to the day of surgery. Now I look back and say "wow I really didn't feel good alot. ". Surgury wasn't that bad at all for me, just a blip on the radar now. Good luck

 

[vivekd]

Update:

Had meeting with my surgeon, and now getting ready for surgery. Scheduled another appointment with my surgeon after 3 months
Finally told my mother about it.
Scheduled for another ECHO first week of march 2016.
Scheduled for 2nd opinion appointment with Dr. Ed Chen @ Emory St Joseph
Surgeon will like to do a Cardiac Cath, before surgery to look for artery blockage.

 

[vivekd]

Tissue or Mechanical?

I thought I madeup my mind to go with Onyx mechanical valve, but today i went to Wellstar Hospital Cardiac 10 yr anniversary in Cobb, GA, there I talked to few cardiologists/surgeons, abd now I'm not sure.

Now, I will need to do more research on tissue valves, before deciding.

 

[JulienDu]

What is on your mind and what did your surgeon and cardio told you to convince you to go for tissue ?

You are 49 right ?

 

[vivekd]

Hi Julian,

You're right, I'm 49.

Today Wellstar @ Cobb had 10 yr cardiac anniversary and therefore had few cardiologists, surgeons and vendors like St Jude, Medtronics etc.

Talked to 2 surgeons and asked their opinions about mechanical vs tissue valve.

Here is the gist:

Mechanical Valve:
blood thinner
If i fall or have internal bleeding, things could get complicated since i can't get out of warfarin (because of valve) and it could complicate internal bleeding.
TAVR is getting better. FDA may be getting ready to start recommending it for younger patients as well.

So if i go for tissue valve, i would need TAVR at least once, but less complications of bleeding/clotting, but tissue valve usually lasts longer, so 1 TAVR may be enough and i may not require any more surgery.

I'm surprised that none of the surgeons (at least the one I've talked to) have not heard of mechanical valves without thinner like http://www.triflomedical.com/
-- Vivek

 

[vivekd]

Has anybody compared different tissue and mechanical valves (pros and cons)?

 

[JulienDu]

That Swiss valve seems impressive but they did not do any clinical trial for now so it might be a while before FDA approves it

Do they know when FDA will approve TAVRs for young patient or they just guess ? This is important to take a decision upon facts rather than hope. Also with TAVRs, you keep your older valve and the calcification with it. I read that this could also be an issue, because at 49 you could possibly look at 2 TAVRs (though more likely one) . Ask your surgeons about that.

 

[JulienDu]

I found one of my readings about TAVRs http://circinterventions.ahajournals...002801.extract

You can read that the risk of stoke with TAVR is 2 times higher than normal tissue valve with OHS and also higher than a Mech Valve with AC. Talk to your surgeon about that see what he thinks

 

[vivekd]

I plan to talk to Dr Chen about it, when i go for 2nd opinion. One of the surgeon told me that FDA is planning to approve / recommend for younger patients. Not sure, if it's fact or rumor.
Also, lot of this is based on advancements with TAVR/TAVI in next few years.

As per this surgeon:

Patients < 40 yrs ----> Surgeons usually recommend Mechanical valves
Patients > 60 yrs ----> Surgeons usually recommend Tissue valves
Patients 40 - 60 yrs -----> Either options are valid, but usually patients decide the valve.

 

[epstns]

Vivek, I suggest that you have an in-depth conversation with some of our experienced mechanical valve members (pellicle and Dick0236 both come to mind). The "dangers" of anticoagulation therapy are often over-stated by doctors who do not work with warfarin patients on a daily basis. **** is one of our "elder statesmen" and has lived his long life almost entirely with warfarin as his partner. He can probably explain a lot about how much or little it affects his everyday life. (From what I've read, it wasn't a big impediment in his life.) Pellicle is a bit younger, and has endured multiple heart surgeries, and is also a warfarin patient. He can not only fill you in on why you do or do not want multiple surgeries, but he can also speak as a world traveler regarding the impact warfarin has had on his life and career.

I have a tissue valve, and do often speak out in support of tissue valves for patients younger than the former "age 60 or older" guideline -- BUT you are quite a bit younger than 60, and I would bet that your immune system is younger as well. This could mean that for you, a tissue valve might not last as long as the manufacturers forecast. Most of the data I've seen published speaks about average service lifespan of tissue valves among average patients. Not much is published about patients around the age of 50. Don't forget that the valves implanted via TAVI are, IIRC, also tissue valves, so they may have a relatively short lifespan in younger patients. That might mean that you would need this replacement, and then 2, 3, or more subsequent TAVI replacements over the rest of your life.

I received my cow valve when I was aged 63. I was diagnosed with aortic stenosis, though, at around age 51. For the first 10 year or so, my cardio and I were in agreement that a mechanical valve would be the way for me to go if I needed replacement. Once I passed the milestone of age 60, though, the current opinion trends toward the use of tissue valves. I would not, and do not myself, make any plans based on the assertion that TAVI "will be there when you need it." We've seen things like that before - they look really great during development and early testing, but then are proved to not be the great solution we thought they were. I instead suggest that you make your choices and plans based upon what is available today. Then in the future if something great really does come to be available, you can choose it then. I realize that this may seem odd -- a tissue valver suggesting that you go with the mechanical, but IMHO that is the closest thing you have to a "sure-thing, only one valve surgery" option available.

 

[Warrick]

"That Swiss valve seems impressive but they did not do any clinical trial for now so it might be a while before FDA approves it"

seen the Swiss valve website, how long does it take for FDA approvals?? I'm guessing years... do they do the trials first before they tell anyone they are doing trials in case it goes pear shaped??

 

[vivekd]

Thanks Steve

I'm scheduled for another ECHO on March 3rd 2016 and then 2nd opinion from Dr. Ed Chen @ Emory.
Hopefully things will be more clear after that and should help me make a decision.

 

[vivekd]

My wait s finally over. I'm scheduled for Cardiac Cath on 6/13, and Open Heart Surgery on 6/21 @ Wellstar Kennestone hospital by Dr. William A Cooper. I plan to get mechanical On-X valve. My surgeon told me to stop all the supplements and only take baby aspirin (81 mg) every day.I'm planning to get one more dental cleaning before the surgery (just to be lil bit more safe and less bacteria/infections etc). My surgeon plans to make around 5 inch cut for the surgery.

Are there any specific things I need to do (or not do) as i count down for the surgery?

I plan to stop working out and reduce work load.

Thanks

-- Vivek

 

[pellicle]

Hi

Are there any specific things I need to do (or not do) as i count down for the surgery?

I plan to stop working out and reduce work load.

you'll be fine

follow directions about recovery (like lifting) and you'll be fine

also, take some Korean kimchi along with you to eat after you get back to the ward (if you can leave it in a fridge somewhere) ... it'll help to get things moving again, and have you avoid the potential for a suppository (or worse) in the ward if you don't go #2 soon

see ya on the other side