Teddy's surgery

[Ross]

Also, I did a google search for warfarin + skiing - and found loads of pages saying what you shouldn't do while taking warfarin - avoid shaving for example! I think everyone here knows that's a load of rubbish!!
Gemma.

Lord forbid if you knick yourself with a razor. Did you know that you'll bleed to death? If this were true, I'd be dead 3 times a week, maybe even more. The crap that is spread about Coumadin never ceases to amaze me. I still loved the last INR draw at the lab. "Oh your taking coumadin? Well I have to apply this pressure bandage to the puncture site and don't remove it for at least 20 minutes." I took it off in 3 minutes and there was no bleeding whatsoever. Oh yeah, my buddy came to visit my wife and just had his checked at a fingerstick clinic. They wrapped his finger in gauze!

 

[ALCapshaw2]

Cindy -

WHY did he choose a Porcine Valve instead of a Bovine Pericardial Valve? While the Bovine Valve will also deteriorate in time, data I have seen suggests that the Bovine Valves last from 50% to 100% longer than Porcine Valves. Of course ANY tissue valve will deteriorate more rapidly in younger recipients than older patients.

Another option I'm surprised wasn't mentioned / offered by the surgeon is the On-X Mechanical Valve. Studies are currently underway in Europe to see if Aspirin Therapy is sufficient for patients with these valves due to their improved design which reduces turbulence and therefore has a lower risk of clot formation. Even for patients taking Coumadin with this valve, it would 'seem' to me that a lower dose might be possible (i.e. lower INR ) than for the standard mechanical valves.

Finally, I agree with Ross (and others) than there is a LOT of MISINFORMATION about the realities of living with / on Coumadin. Your son's notion that Coumadin is a "life ending" event needs to be 'adjusted'. Of course he will need to take into consideration how often he gets 'banged up' in his active lifestyle and how Coumadin might 'complicate' recovery from those injuries. Bruising is more common and bleeding may last longer, but they are not 'life ending' events (with the possible exception of internal head / brain bleeding). Hopefully a good helmet would prevent the latter.

'AL Capshaw'

 

[PJmomrunner]

My first reaction was that it may be best not to let Teddy who is one week away from surgery see how many think it takes a year to recover, but the more I thought about it I decided it makes the reality of having another surgery in less than 5 years seem that much more horrific. I agree with Gemma that he should not worry about the restrictions with the Coumadin and live his life and not have to worry about re-surgery in a few years. I think the surgeon is quite relaxed about the restrictions. Teddy is also not factoring in the gradual deterioration of your health as the valves start to give out. He is due home tomorrow, he?s currently driving through Nebraska while we speak. Hopefully I can get him on here for some support, info and advice. Thanks for all of yours.

Is he just finishing up his second year in a plastics engineering program? Sounds like he needs a too-good-to-pass-up job opportunity in the flatlands of the midwest!

 

[tobagotwo]

The use of a valved conduit in the aortic position removes the ability to use the top-contender tissue valves, either porcine or bovine. The valved conduit is a special assembly made in a different way, in which the valve is incorporated into a prefashioned tube.

This is difficult enough that Medtronics doesn't certify their VCs for aortic replacement. They have a different assembly, the Freestyle, which includes portions of the descending aorta and uses the new technologies. However, Ted requires replacement of part of his ascending aorta now, so that would not fill the entire need. The other surgical option for tissue is to piece things together (valve and Dacron) during the surgery, which is done fairly often in the US.

I will not be here during Ted's surgery, but I want you to know that on Tuesday the 10th, I will take the time to ensure that he is in my thoughts, and you as well, Cindy.

Very best wishes,

 

[gijanet]

Cindy

Cindy

As usual, I have no valuable input..............sigh! But did want to send my love, prayers, and support. I did e-mail Katie's surgeon about a tissue valve and he said it was not a good option for us - that they just don't last in children in the mitral position and we would be lucky if we got five years out of it. 'Course Katie is much younger than Teddy is and he's not having his mitral valve (in Katie's case, common AV valve) replaced. Okay, I told you I didn't have any valuable input.................sigh! But from one mother to another, I am sending lots of love and prayers. I know you know to keep us posted. Hugs. Janet

 

[Phyllis]

Best wishes to Teddy. You will all be in our thoughts and prayers on Tuesday.

 

[bvdr]

You and Teddy will be in my thoughts and prayers on Tuesday. Even though he is 20 the feelings of wanting to protect and shield him are no less strong. I hope all goes well and he lives happily into old age.

 

[Wise]

Best wishes for Teddy's surgery and recovery. You and your son will be in our prayers.

 

[skimomck]

Thanks so much for all your thoughts and prayers. Teddy arrived home from college two days ago and hopefully I can get him to log on ask some questions he may have. We are flying out on Saturday for the Mayo clinic and want to thank everyone for all your love, support and valuable information. I will give you an update as soon as I can.

 

[Karlynn]

Continuing to keep Teddy, you and your family in my prayers. It truly stinks that he must go through this. It took me a long time to stop feeling cheated. I was 27 years old and had a young family with baby and toddler. I wasn't supposed to be having to go through that.

But the good news is, you do get through it. You make the best decisions you can based on what you know and you go forward trying not to look back with any regrets. We learn valuable life lessons that many people don't ever catch on to. We just wish they were a little easier to learn.

 

[Glenda]

Teddy and your family will be at the top of my prayer list. He is so young to have to go through this, but that is a plus. Hugs for Teddy. Be sure and let us know how he is doing.

 

[skimomck]

Thanks for all your best wishes, we appreciate all of you and can't thank you enough. This has been such a beneficial place for us. Just an update-We leave for the Mayo tomorrow. Teddy met with our local cardiologist to discuss his valve choices and options. The cardiologist called us back to inform us that even though at this point he may not totally agree with Teddy's choice, he is one of the most informed patient he has seen prior to surgery. Teddy had done extensive studying and research about the possible valve options, risk factors of the different valves as well as the risks of re-operation. The surgeon had provided Teddy with a newly published article on Valve Replacement Surgery (39 pages) he just presented at a conference at Cornell. He said Teddy?s figures were accurate and he showed the maturity of someone well beyond his years. He quoted multiple statistics and percentages from several studies, which he later learned, were very accurate once he saw the article. He said he also educated him about a few things. He has synthesized and analyzed the statistics and showed him how and why he has made the choice he has at this point He explained that Teddy was optimistic yet realistic about his upcoming surgery and recovery. His decision is an informed decision and is not an emotional or impulsive choice. It is a decision that he has decided is best for him at this stage of his life and he is willing to face any negative consequences that may result from it. It may not be what many of us would choice but most of us are not 20 years old. Teddy also explained last evening that he has not made a final decision and will not do that until he sees the Mayo cardio and surgeon on Monday. As his mother, I am now at peace with this. Even though I am a nervous wreck at this stage I am so proud of him. His cardio told us we should be extremely proud of our boy because he has become a man. We feel very blessed and want to thank all of you again. I will post as soon as I can and look forward to being on the other side.

 

[geebee]

Cindy,

I will be praying for Teddy and your family. Thanks for the update and I am happy that you have found peace with the choices.

In many ways, I was more mature at 20 than I am at 53. There is no reason that a 20 year old cannot be informed enough to make such a decision and, as you realize, has every right to do so.

I will also pray that he gets a long life out of whatever valve he chooses.

Best of luck.

 

[Gemma]

Well, it certainly sounds like he's done his homework . I'll be thinking of you next week, and hoping that whichever option Teddy finally decides on, he gets a good long life out of his new valves.
Gemma.

 

[Phyllis]

You must be so proud of Teddy! Best wishes for your travel to Mayo tomorrow and tell Teddy we will be thinking of him on Tuesday and look forward to a great success story!

 

[Granbonny]

I will be thinking of you and Teddy next week.. Bonnie

 

[hensylee]

for Teddy and family: GODSPEED!

 

[Karlynn]

Glad to read you post. Will be thinking of Teddy a lot in the coming days. You have my prayers.

 

[ALCapshaw2]

Cindy - As you and his cardiologist have noted, he made an "informed decision". That's probably as good as it gets. Best wishes for a successful surgery and recovery.

Your statement "The surgeon had provided Teddy with a newly published article on Valve Replacement Surgery (39 pages) he just presented at a conference at Cornell." caught my eye. Sometime later when you have a moment, can you give us any more information on where / how to find that article and possibly obtain copies?

Thanks and Good Luck!

'AL Capshaw'

 

[PapaHappyStar]

All the best Teddy ... go get 'em buddy ... Burair.