"there is really no good solution" :confused: help!

[Beha]

Thats what my cardiologist has told me "there is really no good solution"
I am having OHS on January 20th. At first we thought it would just be a pulmonary valve replacement. I had decided on a tissue valve (pig) because
1. tissue valves are recommended in the pulmonary position because the low pressure increases the risk of clots if a mechanical valve is used
2. tissue valves last longer in the pulmonary valve (15-30 yrs) than elsewhere
3. I am a young (24), very active (well i was) female and I would like to keep the possibility of having children open.
4. thats what my surgeon recommended.

But now after further testing it looks like my Aortic valve may very well need replacing as well- apparently the surgeon won't know until he gets in there.

so now what? If I choose tissue for the AV it likely wont last nearly as long as the PV replacement. I would like to have kids at sooooome point but more like 10 yrs than 5 (haha I dont even have a boyfriend right now!-im a ways from kids!). and that would likely be near the end of my AV valve life or maybe even past the end...

if I choose mechanical for the AV valve then I will have to be on coumadin...should I just go ahead and get a mechanical valve for the PV? But what about the increased risk of clots?

It seems kinda silly to me to get 1 tissue valve and 1 mechanical valve.

my doctor is leaving it up to me, he doesn't really have a good solution.

anyone have any ideas? comments? suggestions?
anyone have any VR's on both sides of the heart?

 

[Ross]

If you want children later, go tissue all the way around. It's possible to have children with you being on Coumadin, but it is HIGH RISK and definately not recommended. You'd have to find a specialist that dealt with these types of pregnancies.

 

[nickd]

Beha,

I'm in a similiar situation with coumidin, I can't be on it for my job. My AV needs to be replaced most likely this January also. I spoke with a great surgeon, Dr. Girardi Cornell Medical NY, and he suggested going with the tissue because of my situation. He told me that there is no guarantee on the life of the valve, but in my case he thinks it should last 12 years or so without replacement. I really don't want surgery again, but I'm hoping that by time I need to have it replaced again there will be something new out, either procedure wise or valve wise. On a lighter note, I can let you spend a weekend with my kids, after that you would probably go with the mechanical.

Nick

 

[kfay]

Beha, At this point, I would probably go tissue if kids are really something you want. Even if you got a mechanical valve for aortic now, then decided you were going to have kids and did not want to have the high risk of doing it on Coumadin, you'd have to have another surgery anyway to replace that mechanical with tissue. I have a tissue because it was my tricuspid that needed replacing and they told me the same about clotting on the right side. I do know a few who have a mechanical on that side, but only after a tissue didn't work there. I personally wouldn't want the risk of a clot on that side versus reops. Everyone is different and has their own thresholds for what is acceptable to them.

Not to throw another wrench into the works, but have you checked with your Dr.'s about you being able to carry a baby? Will your heart be able to handle the extra stress? I was able to carry two just fine, but last year before my surgery, my Dr. told me that it wouldn't be a good idea for me to get pregnant anymore (I can't anyway!).

Whatever you decide, I'm sure in the end it will all be fine. Good luck to you.

Kim

 

[Beha]

having biological kids isnt really that big of a deal to me. It's more trying to decide if I go mechanical on the aortic valve should I also go mechanical on the pulmonary valve- If I am going to have one mech valve I'd rather have 2 and hopefully be done with surgery for a long time (if not ever)... but then there is that increased risk of clots on the right side of the heart.

hmmm

 

[ALCapshaw2]

VR.com Member "MNmom" received a Bovine Pericardial Tissue Valve in the Aortic Position at age 20 and had 2 kids. By age 30, her valve was in need of replacement (after 10 years).

You may want to look into the On-X Mechanical Valve which has been approved for NO and LOW Anti-Coagulation Studies by the FDA (with Plavix and/or Aspirin or reduced Warfarin dosing).

See www.heartvalvechoice.com and www.onxvalves.com

Their Manager of Education, Catheran Burnett, R.N. has extensive knowledge and experience in the Valve industry. Her contact information is [email protected] or 888-339-8000 ext 265.

 

[Ross]

Beha,

I'm in a similiar situation with Coumadin, I can't be on it for my job.

Nick

Nick I'll never understand why some umm, employers won't allow it. They are listening to myth and reasoning in the dark ages. Anything your likely to come up against is going to be serious whether your on Coumadin or not. People need to learn about the drug and stop this nonsense. Just like in your case, your better off with a mechanical valve, which would be the best idea to hopefully evade another surgery, but you have to go tissue to keep the job and risk more surgery later. It's just crazy, but some umm, employers still do it. We have another member that ran into the same problem, but got hired into another employer not far away from home.

 

[Ross]

having biological kids isnt really that big of a deal to me. It's more trying to decide if I go mechanical on the aortic valve should I also go mechanical on the pulmonary valve- If I am going to have one mech valve I'd rather have 2 and hopefully be done with surgery for a long time (if not ever)... but then there is that increased risk of clots on the right side of the heart.

hmmm

If it's not a concern, then go mechanical. In the end, it's your choice.

 

[Karlynn]

If you're thinking of going mechanical for the AV, it does seem to make more sense (for me) to go mechanical for the PV. Choosing mechanical is basically saying - I'm trying to put as many years between me and another valve surgery as possible - maybe even forever. So I don't quite understand a doctor signing you up for additional surgery with one valve, while putting in another valve in another position who's main reason is to forestall or totally prevent additional surgery.

If you are thinking you want the option to have bio-children - I'd go tissue and hope to get as many years as possible out of the valve. If it's low on your priority, I'd go mechanical and just figure that by the time the desire for children arises there will be other options for becoming a parent. (We have a member know who is having twins through surrogacy. The babies are hers and her husbands, she just not cooking them.)

 

[Bridgette]

There is always the option of adoption too. My sister couldn't have children for a particular medical reason (not heart related though) and she and her husband have adopted a beautiful little baby boy this year.
Just another thought anyway.
I am sure you'll come to a valve choice decision that is right for you and that you are comfortable with.

Bridgette

 

[Beha]

no no they are TOOO dilated-that's the problem. I have regurgitation in both valves not stenosis. It just seems kinda silly to me to get 1 tissue valve and 1 mechanical but that may be the best solution.

 

[ALCapshaw2]

The relatively new (1996) On-X Mechanical Valves have a reduced propensity for Clot Formation compared with older Mechanical Valve Designs due to their technological improvements in several areas.

The surgeons at Emory Hospital in Atlanta are quite familiar with the On-X valves as they are the lead sponsor in the FDA approved Low/NO anticoagulation study.

 

[Dina]

It sounds like a hard decision. I guess what you would like to have is
the option to have a baby within the next 10 years,and you just
aren't sure how important this is at this point..? Atleast this is how I
see it. If it were me, I would probably talk to as many surgeons/cardios/
and perinatals about it,research it(as you are) and do some soul-searching
about the possibility of children. The only thing you can't figure in is what
possilble relationship you may have in the future and how your feelings
may change because of it. It seems like the toughest decisions need to
be made on our own,atleast this is what my mom always tells me
Best wishes-Dina

 

[Lynlw]

The relatively new (1996) On-X Mechanical Valves have a reduced propensity for Clot Formation compared with older Mechanical Valve Designs due to their technological improvements in several areas.

Have they used them in the Pulm position? I haven't seen that on their site.

 

[sparklette77]

sounds like a pretty difficult choice but if you do want to leave open the idea of children i would say tissue all the way and by the time you potentially need another ohs there is likely to be much more advanced ways of dealing with these issues.

one thing i didn't understand in this thread is why an employer would have an issue with someone's personal use of coumadin for their heart? why would any employer have any kind of say in this issue? I think i am missing something.

 

[ALCapshaw2]

It is my understanding that *some* Law Enforcement Agencies have policies regarding being on anticoagulation. I think this varies from department to department / agency / locale.

Commercial Pilots may have some issues also
(I'm not sure about this one)

 

[Beha]

From my understanding there isnt an On-X valve available for the pulmonary position. does anyone know otherwise?

 

[ALCapshaw2]

From my understanding there isnt an On-X valve available for the pulmonary position. does anyone know otherwise?

I don't know of any mechanical valves made specifically for the Pulmonary position BUT, since they use the natural pulmonary valve to replace the Aortic Valve in the Ross Procedure, I'm wondering if they couldn't use a Mechanical Aortic Valve in the Pulmonary position.

That would be a good Question for your Surgeon and/or someone from On-X such as Catheran Burnett, their Manager of Education (and former Surgical Nurse). I think she is on vacation until Jan. 4 but maybe she will check her e-mail at [email protected]

It would also be interesting to know how long a Bovine Pericardial Tissue Valve might be expected to last in the pulmonary position of a young female recipient.

'AL Capshaw'

 

[Lynlw]

I don't know of any mechanical valves made specifically for the Pulmonary position BUT, since they use the natural pulmonary valve to replace the Aortic Valve in the Ross Procedure, I'm wondering if they couldn't use a Mechanical Aortic Valve in the Pulmonary position.

That would be a good Question for your Surgeon and/or someone from On-X such as Catheran Burnett, their Manager of Education (and former Surgical Nurse). I think she is on vacation until Jan. 4 but maybe she will check her e-mail at [email protected]

It would also be interesting to know how long a Bovine Pericardial Tissue Valve might be expected to last in the pulmonary position of a young female recipient.

'AL Capshaw'

I just posted a long thing but lost it, so short version is most valve companies do not make a pulm valve, they use the aortic valve (except for contegra conduits that are made of a cows juglar just are for pulm posistion) BUT most surgeon will not use a mech for the pulm postion because the pressure going thru it is sooo much lower that even with prob]per anticoagulation the chances of clots forming are way too high.
I have not heard of anyone getting the ON-X valve in the pulm postion and would imagine it would need a sperate trial because of the problems associated with mech in the Pulm spot.

again short versoin so I don't loose this and in a hurry , the bovine valve SHOULD last much longer in the pulm postion because of the lower pressure not as much wear and tear so to speak. Even in the older model 15-20 or more years were not uncommon in adults that got the pulm valves as children and teens. Justin was told by 3 leading CHD centers his boving pulm valve would probably last longer than his gortex conduit on either side of it.

Hopefully by the time Justin need his conduit valve replaced he can get a tissue engineerred valve, but maybe next time you talk to catherine you can ask if they've done any Pulm replacements.

 

[nickd]

No to distract from Beha's original thread, but wanted to answer sparklette77 about her question:
"one thing i didn't understand in this thread is why an employer would have an issue with someone's personal use of coumadin for their heart? why would any employer have any kind of say in this issue? I think i am missing something. "

Alcapshaw hit on it, I'm in law enforcement, and you really can not be a police officer while on coumadin. It's not so much the employer, as the profession. Almost (and I say almost, because I'm sure there is a few out there) all doctors would not give a person the ok to go back on active duty.

Nick