Re-operation.. should it be a deal breaker?

[Alerion]

Well, I would like to respond to everyone individually but I'm afraid Heidi is going to start throwing my things out on the sidewalk if i don't leave the computer for a while!

I just want to say the point of this thread is not to have someone make the decision for me. That's absurd.

My point was (and thanks Nupur for putting it so concisely) to try and get an idea of how bad one of the variables in the decision making process is. That variable is re-op, and I felt it is under-explained/represented as a major factor, despite the fact that so many folks refer to it as THE deal breaker, as in "your first consideration should be to avoid having anymore surgeries, regardless of what it entails"

I think we're all familiar with the general thrust of this side of the discussion - re-op is risky so why risk it?.
I sure as sh*t respect that philosophy but I'm not so sure I won't trade one risk I'm uncomfortable with for another that I'm more comfortable with.

Jeez! I am a wordy S.O.B.! Sorry all.

Anyway, everyone's experience is important to me, good and bad. Not because I value anecdotal info above the stats I read on medical websites or the advice of my PCP or Cardio or surgeon, but because when making this kind of decision, more information is always better.

I sense some are sick of this noob topic, as it's been worked to death here (I've been checking the archives - Yikes!) but I'm sure most of you can appreciate the fact that some of us are still in shock from the DX let alone news of impending OHS and after 4-6 hours researching online, we naturally will start asking questions of the pros.

Mary makes the point that this is, in the end, not as big a decision for her as it might be for me or someone else. That's good to hear, but it doesn't apply to me until I have her perspective, that is until I've made my choice and there's no going back.
I think it's a big deal now because it's really the only control you get over you own situation. YOU decide what valve you get (Unless other medical factor influence the decision yada yada yada) and that's a big responsibility.

Mary, did you have the same view about your decision before your surgery - that this decision was no big deal?
If so, you have stones, madam, that I cannot match.

I happen to be a fervent adherent of Pamela's idea that -

"Sh*t happens and when it does, be close to a toilet and not a fan...."

I think I've settled on a valve, mostly due to the discussions I've read here, the support I've gotten here and from my wife, and the advice of an experienced surgeon.

So this thread has been an important one for me. I'm sure other trembling newcomers are reading it with interest as well and I hope your contributions help them as they have helped me.

This thread will die and another version will appear, as has happened so many times in the past. I hope you all keep the incredible patience and generosity that's been so forthcoming on this forum. Thanks again.

Now, I have to go get my clothes out of the yard.

 

[tobagotwo]

What is the risk associated with re-ops? So far I have heard mostly about the pain and trauma but what about Geckely's point, how is the heart impacted. We know you will likely need a pacemaker. What else?

We know no such thing. That's a misinterpretation. It's not that it's impossible with any OHS, but there's no track record of pacemakers being commonplace because of reoperations.

The surgeon said that the chance goes up 30%. The initial chance is very small. 30% more of very small is still very small (for a round example: 1% vs 1.3% - 30% of 1% would be .3%). If you doubt that, go back through all the postings of folks who have come home from the hospital, and see how many mention getting a pacemaker. It's not 30% of the people who get the operation or reoperation.

Because of where it's situated, there is a somewhat higher risk of electrical issues for those with mitral replacement or repairs. It's still quite small.

Best wishes,

 

[pamela]

With the latest generation of tissue valves being new-comers to the market, we don't know that re-ops are a certain eventuality for 100% of the valve recipients. There are still many people out there with co-morbidities that give them a worse prognosis than, say someone who is simply having a bad valve replaced.

In the case of BAV disease, some of us need a second OHS to replace dilated aortic roots and aortas, many people also suffer pulmonary hypertension because of the problems associated with hemodynamics and heart remodelling. It's a variable symptom problem that carries unique risks for everyone. I don't think there's a human alive who could accurately pick people who'll recover from replacement surgery without any significant difficulties or those who'll never end up on ACT.

I didn't think the re-op risk was as negative in my situation as dealing with Coumadin as a life-preserving drug. I am terrible at ALWAYS remembering my medication, maybe if I knew my chances of heart attack or stroke were extremely high if I forgot to take it then I'd be more consistent, but if I wasn't... ? ACT was a higher risk IN MY VIEW than chancing an indefinite number of re-op surgeries.

 

[Bridgette]

David

You originally asked us about our thoughts on the operation and our individual experiences with it - I assumed you meant everyone's initial operations, not just those who have had reoperations?

"My point was (and thanks Nupur for putting it so concisely) to try and get an idea of how bad one of the variables in the decision making process is. That variable is re-op"


In any case I think you have had a very good range of responses and I sense that you have made the decision to get a tissue valve.
I wish you all the best for your surgery and recovery.

Bridgette

 

[Ross]

Ross, don't you think your ongoing lung condition is another reason why you fared so poorly after your second surgery?

It played a part, but what really wiped me out was the Staph infection from the IV line. Yeap, that can happen too.

 

[Mary]

Mary makes the point that this is, in the end, not as big a decision for her as it might be for me or someone else. That's good to hear, but it doesn't apply to me until I have her perspective, that is until I've made my choice and there's no going back.
I think it's a big deal now because it's really the only control you get over you own situation. YOU decide what valve you get (Unless other medical factor influence the decision yada yada yada) and that's a big responsibility.

Mary, did you have the same view about your decision before your surgery - that this decision was no big deal?
If so, you have stones, madam, that I cannot match.

I originally planned to have Dr. Stelzer in New York City perform my Ross Procedure so I was more concerned with the logistics of the operation than anything else. When events transpired that accelerated the timing of replacement, I decided to scrap my plans in favor of a "simple" replacement closer to home.
I had been a member of VR.com for more than a year and had read ALL the forums and posts. I had my own practice run with anticoagulation therapy after spending several days in the hospital due to a TIA. That experience supported my belief that I would be one unhappy camper with a mechanical valve. The valve decision was an easy one for me to reach.
Someone mentioned worrying about a reop all the time if you had a nonmechanical; all I can say is that's not been my experience. I think my personality type is such that I'm confident of my decision making process, and I don't spend time second guessing myself.
I don't know about the accuracy of your "stones" comparison, but as a former skydiver, I may be a little more nervy than the next person..
Best wishes,
Mary Stone

 

[Alerion]

Hey Mary,
I've always wanted to try skydiving but never got around to it. My cousin did it for years and I never got a chance to join her. Now I'm afraid I would have to land directly onto the operating table if I wanted to survive the experience.
Do you think after I get my new valve, this kind of adrenaline rush (which I get often , to a lesser extent, while sailing) will be something that will be open to me? That would be so cooooool!!

"I think my personality type is such that I'm confident of my decision making process, and I don't spend time second guessing myself."

I hear you.I don't second guess myself either, but that's because i tend to research the hell out of my decisions.
Tip: Never go car shopping with me.

Thanks for your perspective.

I am feeling less and less like a babe in the woods every day. We are now shooting for an early February operation date so I'm pretty stoked.
My surgeon emphatically insisted that I not do anything strenuous, so Heidi's had to shovel all the snow we've been having while I grow soft and weak. However, I've had to do all the web-surfing and napping, so I feel we're kind of even.
She gets uncharacteristically hostile when I mention this.

We're both ready for this operation!

 

[Herburban1]

I have always wanted to sky dive too. Now I think I will settle for the fake one with the big fan in the chamber you get the same feeling (so they say). It's on my bucket list, but I'm not sure if there is one in New England.

 

[Ross]

Hey Mary,
I've always wanted to try skydiving but never got around to it. My cousin did it for years and I never got a chance to join her. Now I'm afraid I would have to land directly onto the operating table if I wanted to survive the experience.
Do you think after I get my new valve, this kind of adrenaline rush (which I get often , to a lesser extent, while sailing) will be something that will be open to me? That would be so cooooool!!

Hey dude, check this out. It's our very own site founder with mechanical valve doing exactly what your asking about! Notice the Coumadin users helmet also.

http://www.youtube.com/watch?v=MGS4DVpi1xY

 

[Karlynn]

That's awesome - don't think I've ever seen that. Yes - loved the "helmet" Hank!! I knew he went - just never saw the video.

 

[Woodbutcher]

Well posted Ross ! 7 minutes to dispel years of Warfarin worry !!

 

[Herburban1]

This is more my speed. http://www.youtube.com/watch?v=Q1GaZDODvzY&feature=related

 

[Alerion]

Ross -
That ...is.... AWESOME!

Man, I wanna Do that!

 

[Alerion]

Herburban1 -
I would want to do that as a practice for the real thing. Looks like a blast!
They should have pix of the clouds on the wall or video or something. Get you in the mood.

 

[Alerion]

Well posted Ross ! 7 minutes to dispell years of Warfarin worry !!

Woodbutcher -

Unless I mistake your meaning, this doesn't dispel Warfarin worry for me in the least. You hit the ground at 180 and Warfarin doesn't even enter into the equation!

We need some videos of ACT people sword fighting or maybe those folks who climb mountains or do extreme sports.

Ah ... My friend here says to put some vids up of someone on ACT getting hurt and dealing with it (He's an EMT so he's been there and that stuff doesn't bother him) but I don't think vids of people getting hurt is what we need to see!! EMTs are crazy like that!

I just wanna see folks dealing with camping, fishing, hiking, offshore sailing, etc. Those are things we pre-op undecideds are worried about.

Anyway, I wanna do what Hank did regardless of my valve choice just because it such a RUSH!!

David

 

[Nupur]

So, what valve did you decide on?

 

[Alerion]

I'm leaning heavily, very heavily , towards a bovine valve from Carpentier-Edwards. I have a few more peeps I'm going to talk with this week and then I call the surgeon and let him know what valve to have ready.

I have to say it's a really close call and this choice has been the most difficult part of the pre-op phase of this glorious adventure.

 

[geebee]

There are probably a few things to think about other than just whether it is difficult to make it through multiple surgeries. The first one is that a tissue valve does not just fail one day and you have another surgery. It fails just like your original valve and, if you were symptomatic prior to your replacement, you will go through that again. I was so sick prior to my first surgery that I never want to repeat that experience.

I can tell you that multiple OHS takes something out of you (or at least it did with me). Each surgery was harder to recover from than the one before. I have been told surviving a fourth OHS may be highly doubtful due to scar tissue and the condition of my heart (enlarged, etc.) due solely to multiple surgeries.

You also need to consider your loved ones. It is my opinion that OHS is much easier on the patient than the loved ones. How tough will it be for them to watch this over and over?

Now, I am one of those unfortunate folks who has had multiple surgeries despite a mechanical valve. I grow a lot of scar tissue and that has created the need for repeat surgeries. Even if I need another surgery down the road, I will go mechanical again because I cannot face a valve failing again.

The other thing one might consider is finanicial. Will you be in the same situation as today or will money be a factor down the road. May not be something anyone cares to think about but it should be in the mix somewhere.

BTW - if you have read any of my prior posts, ACT has been easy for me even with having had multiple major and minor surgeries after going on ACT in 1980. I have not altered my life one bit due to coumadin, Over the last 28 years I have raced sailboats, rode motorcyles (on and off road), gone diving, traveling, camping, etc.

All that being said, we all do what is needed to try and stay alive. I think the only bad choice is no choice so go with what makes you the most comfortable today if you have considered all the pros and cons. You are the one that has to live with your choice.

 

[Woodbutcher]

Alerion "I just wanna see folks dealing with camping, fishing, hiking, offshore sailing, etc. Those are things we pre-op undecideds are worried about."

I wouldn't think twice about doing any of those things anyway ? Warfarin dosn't i dont think mean wrapping one self up in cotton wool ?

I've an old Moto Guzzi which along with 5 other bikers am going to be riding across France and camping every night this spring. I go sea fishing all the time anyway. My yacht racing has taken a step down and now I'll only be racing my old Gaff cutter in the old Gaffers class, but it's still pretty competative and cut throat ! Up until my op I've always raced in motorcycle enduros, my next big one is not until May now, but the bike is ready and hopefully I will be too.... The only difference is I dont think I'll win... maybe next year !
Last summer my nephew tried to row a boat from New York back across the Atlantic to here ! Sadly got capsized in a massive storm and couldn't right the boat again.. Ended up getting plucked out of 30' waves onto a container ship ! Not bad for an 18 yr old ? We're a competative family and I'd never have gone with the mechanical if I thought it would have stopped me being so active. Infact it's one of the things that put me off Tissue as I read time after time that youger more active people wear them out much quicker ?

 

[Mary]

Alerion, you could probably jump tandem post replacement with either type of valve.
Hank did the tandem jump while at the 2008 VR reunion in Orlando. When you're jumping tandem, you are relying on the expertise of a very experienced skydiver to bring you down safely and with little risk of injury. For example, former President Bush also celebrated his 80th birthday with a tandem jump. Coumadin usage shouldn't be an issue with tandem skydiving.

However if you're taking lessons to skydive solo, many dropzones will not allow you to jump if you're taking coumadin. Until you get the hang of landing, your lower body and limbs are more apt to be injured. My first landing resulted in my breaking my ankle. My toe got jammed in the loose dirt while the wind pulled the canopy and the rest of my body, along. That same day, another first time jumper hit a power line and knocked out power to the airport and left the field in an ambulance. Skydiving can be a dangerous sport and is usually off limits to those on anticoagulation therapy.