I'm so confused

[donnamarie]

I have an appt on Friday (9/21) to meet my surgeon for AVR. I am so confused as to what type of valve to get. I am 50 years old and had breast cancer when I was 35. I had a mastectomy at the time - which means I only have use of one arm for bloodwork, etc. My veins are shot - I have a difficult time when I need to get any bloodwork and I understand that monthly bloodwork is required when on coumidin. So, sometimes I think a bovine valve is the way to go, but then when I think about the possibility of another surgery in the future, that makes me sick and I want to do the one-time surgery with a mechanical one.
Thoughts on questions for the surgeon?

 

[mntbiker]

I have an appt on Friday (9/21) to meet my surgeon for AVR. I am so confused as to what type of valve to get. I am 50 years old and had breast cancer when I was 35. I had a mastectomy at the time - which means I only have use of one arm for bloodwork, etc. My veins are shot - I have a difficult time when I need to get any bloodwork and I understand that monthly bloodwork is required when on coumidin. So, sometimes I think a bovine valve is the way to go, but then when I think about the possibility of another surgery in the future, that makes me sick and I want to do the one-time surgery with a mechanical one.
Thoughts on questions for the surgeon?

You should post this as a separate thread, it will get more attention.

I discussed the choices with my surgeon and ultimately let him make the decision on what he felt was best based on my lifestyle and preferences. You have to trust your surgeon to do this though.

It seems you have made your decision and would prefer a mechanical, you are certainly justified to want to avoid a second surgery, it's no fun the first time. If the only hang up is INR testing you can do that with a finger stick on a home testing machine. My surgeon was going to send me home with the unit if I went mechanical, yours could probably do the same. That is one of the questions I would ask, will they support your decision to home test and make sure you are sent home with a unit.

Good luck with your decision.

 

[Karlynn]

If the only hang up is INR testing you can do that with a finger stick on a home testing machine. My surgeon was going to send me home with the unit if I went mechanical, yours could probably do the same. That is one of the questions I would ask, will they support your decision to home test and make sure you are sent home with a unit.

And many doctor's offices have the "finger stick" machine as well. As far as going home with a machine, it will depend on your doctor and your insurance, but it sounds like you have a very good case for one. I would certainly push for one (and would regardless of your issues with drawing blood).

Best wishes.

 

[Kate]

Dear Donnamarie,
Valve choice can be very confusing - there are many considerations to take into account, and no one valve is best for everyone. I'd encourage you to go to the Valve Selection section of the forum and read through Tobagotwo's writings on valve choice (it's second from the top). He does a great job of providing a balanced, readable overview of the positive and negative aspects of both mechanical and biological valves.

Although it is important to trust your surgeon, it also makes sense to be well-informed because for someone your age, the long-term survival rates with both types of valve are very similar (although your cancer history may make a difference.) Still, if the medical outcomes are similar, the decision becomes more about what you are more comfortable with. To make that determination, it really helps to have a clear understanding of all that is involved with both types - then you can be confident that you've made the best possible decision for you. I wish you the best of luck. Kate

 

[catwoman]

Donnamarie:

Perhaps you could make a list with each type of valve, tissue (porcine and tissue, and which type of maker) and mechanical (there are several companies making mechanicals), listing pros and cons. Leave all emotions out of the + and - list at this point.

Talk to a cardio and surgeon about your options. Then go back through and rank what's important to YOU.

BTW, many doctors' offices now use finger-stick INR machines. Since leaving the hospital after my surgery, I've only had finger-sticks for my INR tests. I **have** had lab draws for blood cultures or CBC's, but not for INRs.
I have my own INR machine and test every 2-3 weeks at home.

 

[donnamarie]

I discussed the choices with my surgeon and ultimately let him make the decision on what he felt was best based on my lifestyle and preferences. You have to trust your surgeon to do this though.

Good luck with your decision.

I'm inclined to do this too- trust the doctor. I haven't met him yet, but heard lots about him. Unless he really turns me off, I'll go with him and ask his advice - but I want to be as informed as I can be. This site is great - thank you all for your help and concern!

 

[donnamarie]

So - below are my sources so far (they may have been listed in other spots so I apologize if these are duplicates):


This may seem a bit much but for me, I want to review the studies, results, recommendations & details around all the options.

Hope this helps & wasn't too lengthy or repetitive. While there is tons of good information here & real world experience, I want to absorb as much as I can from as many different sources as I can. There are also good heart clinics in North America with good information as well.

Good luck with your appt.

B

B - thanks so much for sharing your research! I checked out a few of them - still confused! LOL I guess when I see the doctor he'll have more specifics on what he thinks would be good for me. I feel like I am at least going in pretty informed.
Good luck at your appt too.

 

[donnamarie]

And many doctor's offices have the "finger stick" machine as well. As far as going home with a machine, it will depend on your doctor and your insurance, but it sounds like you have a very good case for one. I would certainly push for one (and would regardless of your issues with drawing blood).

Best wishes.

Karlynn - that would be wonderful if I could use a machine myself. I don't know how long my arm would last if I had to get tested every month!

 

[Karlynn]

Karlynn - that would be wonderful if I could use a machine myself. I don't know how long my arm would last if I had to get tested every month!

Any doctor who would require you to get a venous draw to check your INR when you have the issues with available veins does not know warfarin (Coumadin) and it's current protocol. The finger stick machines are just as reliable as the venous draw (and in my opinion more reliable since we don't know just where that tube of blood goes after it's drawn and how long it sits around) and those that home test are more stable than those that go to labs.

 

[don_from_carrollton]

It is all in the Education!

It is all in the Education!

After studying the choices for 3+ months, discussions with the Doc and prayers it came down to the fact that the surgery team should have the flexibility to use the valve that the feel will work best at the time that the were in my chest.

 

[donnamarie]

After studying the choices for 3+ months, discussions with the Doc and prayers it came down to the fact that the surgery team should have the flexibility to use the valve that the feel will work best at the time that the were in my chest.

Thanks, Dan. That sure is common sense thinking. I always feel that the doctors went to medical school for alot longer than I did! LOL I just can't wait to see what he has to say. 48 hours to go. That's just for the surgeon appt - I can't imagine how nervous I'll be waiting for the surgery!

 

[Karlynn]

On the surface - trusting your surgeon's decision sounds like great advice - and maybe it is the way to go when all is said and done. But I would also strongly recommend asking them what their personal statistics are on what valves they implant as well as the age of the patients involved. If you see that they weigh heavily to one side, that demonstrates a bias that may not be totally based on individual patient need.

We've had reports of cardiologists and surgeons telling their patients that they recommend tissue because there's no way they would want to be on Coumadin themselves. This demonstrates a big bias based on old, outdated or mythical information on the drug. Maybe a tissue would be the best choice for someone - but the statement just shows the patient that this particular doctor may not just be outdated in their warfarin knowledge, but also in other areas.

I think your best sign is a surgeon who is willing to implant the valve you want, but also tells you they will wait until they get in there to make the final choice. This may demonstrate that they are comfortable with all valve choices and truly are looking for the best possible solution for the patient. The majority of patients will get their choice, but we have had several members who came out of surgery with Plan B.

 

[ALCapshaw2]

After studying the choices for 3+ months, discussions with the Doc and prayers it came down to the fact that the surgery team should have the flexibility to use the valve that the feel will work best at the time that the were in my chest.

That sounds logical ASSUMING that the surgeon is trained and skilled in ALL of the options. That is RARELY the case.

That is especially true if you are interested in one of the less common procedures such as a HomoGraft (human tissue valve from a cadaver) or the Ross Procedure (swap your pulmonary valve for a diseased aortic or mitral valve).

Even with the more common Mechanical Valves and Tissue Valves, your choices may be limited. Large hospitals are sometimes known to put the valve business up for bid and only offer 2 mechanicals and 2 tissue valves of THEIR choice. Smaller hospitals may offer only one of each.

SO, if you have a preference for the type and make of valve you desire, it is wise to Select a Surgeon who uses those valves and has a good track record with that valve.

It is also wise to have a Back-Up Plan 'just in case' your first choice is not viable. (It's happened to several of us).

'AL Capshaw'

 

[lance]

It's strictly a personal choice ..................

It's strictly a personal choice ..................

which valve tissue or mechanical you decide on.

Should your doctor recommend a mechanical ask who/what/where will monitor your ACT and is there training for yourself. Home monitoring is the best and I couldn't do without my "XS". That's the most positive statement I can make about ACT.

Now more than ever you need to be an informed consumer.

 

[Susan BAV]

While this is my first post, I too have a similar situation with an appt on Friday. As someone who is new to this, I can only tell you my approach. Since I found out 2 1/2 weeks ago of my bicuspid aortic valve & mild stenosis / rheumatic fever, I've been combing the net for information. Luckily I stumbled onto this site - thanks to all who run the site, post replies & otherwise reassure the stunned newbies looking or answers - it's very comforting having a forum to read experiences & connect with others in a similar situation...

Welcome to the site, BMac. Glad you found it. Thanks for posting your research links also.

 

[marie]

keep us posted

keep us posted

I too am new to this site so please keep us posted as to what you decide and what your surgeon recommends and most certainly on your progress as you go through this.

Earline