Hypothyroidism and Coumadin

[JodyC]

So what do you mean 'the medical community needs to get on board?' For those of us in the waiting room to get our mechanical valves what do we need to be successful in maintaining our INR? Is home testing the answer? What do I need to be sure my regular doctor knows so I am safe? I worry about mine being stable more because of taking a thyroid replacement drug which I have read will affect the coumadin. My TSH or thyroid levels are not ususally stable either. I am trying to be positive but I am also very concerned. Any advice would be greatly appreciated.

 

[Ross]

Jody what I mean is, there are some darn poor managers out there that really don't know what they are doing. If you want to know how it should be done, go to www.warfarinfo.com and beginning reading or order Al's book.

In short, it's hard to find good managers to manage the Coumadin. Most of us got feed up and self test and self dose.

 

[JodyC]

overwhelmed

overwhelmed

Ross


I am starting to get really overwhelmed with everything. I am not sure what a Kono procedure is but I am getting one in a couple of weeks. The surgeon Dr. Bove is not able to meet with me before my surgery but might be able to talk to me over the phone. I don't even know what valve I am getting anymore. I am really starting to loose it. I am now worried that if I make it through all this how will I keep my INR under control when I can't even keep my TSH under control?? It will be 2 months or more before I can get a home testing machine after my surgery so will I be safe until then? I found out today I will be in the childrens hospital for surgery and recovery which may include sharing a room with a child. I feel like everything is completly out of my hands and that is scary for a control freak like me. I don't know what my life expectency is after a procedure like this and as I am a single mom of an eight year old that is a pretty big concern for me. I plan to at least try to talk to my surgeon over the phone but I have to wait till tomorrow to try to schedule it. Thanks for any advice/support.

 

[Ross]

"Ross/Kono Procedure, which is the
moving of the pulmonary valve to become the aortic valve, replacing the pulmonary with a donor valve."

So it sounds to me like your going to have a Ross Procedure done, if I'm reading correctly. If this is the case, you need only to choose a valve as a back up plan.

First things first, you gotta calm down. All of this is speeding at you, but your going to be alright. Once your calm enough, look into valve choices. Mechanical will give you the best chance at not having to have this surgery again, but if your female and plan on kids, tissue would be a better route to choose. With mechanical, you'd require lifetime Anticoagulation therapy with Coumadin. It's not a bad thing, but many of painted horrible horrible pictures about it. Most of it's from old school days when people didn't know any better, but over the last ten years, things are changing. Tissue valves don't require ACT and some of the newer valves are lasting up to 20 years, but then need replaced. The question you have to ask yourself is, do you want to go through it again later in life? Now mind you, having a mechanical valve does NOT guarantee that it won't need replacing, but it's vary rare that it needs replaced.

Your next step should be making sure it's a Ross/Kono your having and then making a back up plan incase that one falls through. Go no farther then this for the time being.

 

[JodyC]

Kono

Kono

Supposedly it is just the Kono which from what little I can find is just widening the aorta and adding flaps to put in a larger valve. My current valve is only 16mm which is the size normally found on the heart of an 8 year old child. My heart size is normal. It is just a lot to take in and every time I think I have things planned out EVERYTHING changes. I don't mean to complain I just am really stressed out and needed someone to talk to.

Thanks

 

[Ross]

Supposedly it is just the Kono which from what little I can find is just widening the aorta and adding flaps to put in a larger valve. My current valve is only 16mm which is the size normally found on the heart of an 8 year old child. My heart size is normal. It is just a lot to take in and every time I think I have things planned out EVERYTHING changes. I don't mean to complain I just am really stressed out and needed someone to talk to.

Thanks

I'm sorry Jody, I saw a reference to that also in another article. If that's indeed the case, the next step is to decide on what type of valve you want. It's your right to choose or you can simply leave it up to the surgeon.

You should go to www.warfarinfo.com and learn all you can about Coumadin, then look into mechanical and tissue valves. You already know the preliminary stuff, so it's a matter of choosing what's best for your circumstances.

 

[briansmom]

Hang in there Jody. As Ross said, take it one step at a time and everything will resolve itself. It is not nearly as bad as it seems right now and you should be around to babysit your grandchildren.