Overwhelmed

[surfsparky]

Hi,
My last post was in the heart talk forum but now that I may be facing surgery again, I thought I'd skip over to this one. Thanks to those who replied last time, I really appreciated it. My visit to the cardiologist revealed that my homograft valve on the pulmonary (I'm 31 years old and I had the ross procedure 10 months ago) is showing signs of stenosis. It has now jumped up to 42mmHg (last month's tests were 35mmHg), and if it continues they will need to reoperate at around the 50 level. I thought that stenosis was a collapse but my cardiologist said that in my case, my body's immune system is attacking the pulmonary homograft and it is "scarring" on the inside. I'm hoping that it will not continue to scar but the cardiologist doesn't seem confident. I could go on immune suppressants which would stop the valve from continuing to scar but apparently the side effects of being on these for life is not good (more prone to sickness and infections, blood sugar problems, weight gain, etc) So the cardiologist and surgeon feel it's best to just wait and see what happens to the valve (which is sometimes easier said than done!) If surgery is needed apparently I am not able to have a mechanical valve on the pulmonary as they do not exist - does anyone know about this? So my only options would be to have another homograft (although, if my body's immune system is reacting to this one , they think that it would do the same next time), or to try a bovine or porcine. Does anyone have any thoughts on any of this? Have I got all the information right? Dr's visits are a bit of information overload. I'm feeling quite well at the moment, just experiencing a bit of breathlessness when I'm pushing our doubler jogger pram when we go for a walk at night as a family. Other than that, I feel quite okay...apart from a bit of shock after yesterday's appointment!
Thanks for hanging in there and listening to my woes!
Cheers,
Chris

 

[Nancy]

Oh Chris-

What a situation! I'm sorry to hear that you are going through this. I'm not up to speed on pulmonary valves, but there are several other here who have had replacements and I hope they will come along to help you out.

We don't hear too much about rejection symptoms, but it's always a possibility.

You'll be in my thoughts and prayers.

 

[Kevin M]

Chris, I'm sorry to hear that you are having these problems. I don't know anything about pulmonary valves either. I'm sure some of our pulmonary friends will be by shortly to provide some useful information.

I'm sorry you have to go through this. I am hoping someone will pop in and say that there are other alternatives for you.
Kev

 

[ALCapshaw2]

Hello Chris,

It sounds like you need to consult with some REAL EXPERTS on your valve rejection situation.

Are you aware of the 'second opinion' service offered by The Cleveland Clinic? I believe you can find information about it on their web site. I do not recall the cost of this consult, but it should be 'nominal' and can be done without actually needing to travel to Ohio. This may be a good option considering that you live in Australia.

Good luck in your quest for further information.

'AL'

 

[surfsparky]

Thanks Nancy, Kev and Al for your replies and encouragement. Al, my wife Yolanda, is looking up the Cleveland Clinic as I type - she's a "got to find everything out" type of woman! (Which I'm very glad about because I'm the relaxed, go-with--the-flow type!) Thanks for the advice ... it is good idea to have another opinion. Why is it that we (I) sometimes feel that we can't question our doctor's advice and seek a second opinion? It is our life afterall!
Regards,
Chris

 

[bvdr]

Chris,

I think sometimes that we worry more about being good patients and forget that the doctors are actually working FOR us. Someone else mentioned that a long time ago on this forum and it helped me. A second opinion should not bother a good PCP.

I am glad that your doctor seems to be carefully watching you and I will keep you in my prayers. Please let us know how you are doing.

 

[Missy]

I wish I knew more about pulmonary valves to help you out. I wish you the best. I would be interested in reading a follow up, with whatever you learn.

 

[Abbanabba]

Hi Chris,

Tried to send you an email, but wasn't able to.... Anyway, I was wondering where in Australia you are and where you have been receiving treatment?

I'll be facing a pulmonary replacement at some stage and being that our medical system is quite different to that in the States, I thought it might be good for us to share our common knowledge. I spoke to my surgeon last year and wasn't told that a mechanical valve wasn't an option for pulmonary replacements, so your post was certainly news to me!!

Anyway, if you'd like to get in touch either send me a personal message here, or drop an email to: [email protected]

Cheers
Anna : )

 

[Raverlaw]

Hi Chris,

I don't know anything about pulmonary valves either, but suggest that you check out the web sites of some of the valve manufacturers (carbomedics, St. Jude, On-X, etc.) see what they say. If I've got time, I'll go out and get links for you, but a Google search will turn them up right away for you.

By all means, inform yourself and don't hesitate to seek a second opinion. It's your body and life!

 

[Leighanne]

PVR just saw post

PVR just saw post

I am having PVR with bovine one week from today. I live in the Northeast US and go to Boston. My surgeon said they can use an ATS valve (FDA aproved here, being tested without coumadin in Europe) or a couple other mechanicals but said that within 10 years I have a 50/50 chance of needing a new one and in 5 years they will be able to replace the PV in the cath lab at the hospital I am going to. If you have a mechanical valve in the only way to take it out is with OHS. From what I understand I will not get a homograf, is becuase tissue tends to grow over that valve (may be same as rejection type issue) I am 32 and I dont think my surgeon would put in a tissue valve if he was not confident that he could replace it in a non invasive manner when it wears out, 8+ years from now. Hope this helps you, ask me anything else and I will try to remember what the doc told me and if you have not had yours replaced by the time you see this I will tell you all about it after surgery, so see, another reason to have to come out O.K., there are 2 people on list who need PVR so I need to be here for you cause there are not enough of us!
Leighanne
PVR with bovine and TV ring, full MAZE scheduled Dr. del Nido, Childrens Boston May 11th 2004

 

[Leighanne]

Leighanne comments again

Leighanne comments again

I just looked through my notes and wanted to clear up some of what I said. My memory is crappy. I need PVR and will get a bovine pericardium because, (this is from my notes from call with surgeon)
-with mechanical tissue can grow over valve and after 14 years >50% need a new valve, this = OHS
-A homograf can cause leaks in as little as 1 year, about 1-3 years you see leaks
-And I think he said that the bovine last longer in pulmonary position than porcine
These are his opinions, my not so great notes and not advice or medical knowledge of any sort, hope it helps some and others can clarify what I said.
Leighanne

 

[Karlynn]

-with mechanical tissue can grow over valve and after 14 years >50% need a new valve, this = OHS

This is a stat that I've never heard and I'd be curious to know where this came from. I don't think this doctor is speaking from a point of knowledge on this. If over 50% of those receiving mechanical had to have it replaced, I doubt that it would be so widely used. The biggest reason for using mechanical valves is that you shouldn't have repeat OHS to replace it. It's a given with a tissue valve. I'm into year 13 and my St. Jude mitral is singing along. Nancy's Joe has had a ball and cage valve for 26 years, and they apparently didn't feel a need to replace it when he had another mechanical put in for another valve.

Has anyone else heard this?

 

[Bryan B]

I think there is a bit of confusion about using a mechanical valve to replace the pulmonary valve. I did a (very) quick google and I think the mechanical valve is not normally used in the pulmonary position because tissue valves tend to last a long time in the pulmonary position. This valve is more of an "open and shut" valve to control blood flow and not a pumping valve like the aortic valve, therefore it tends not to wear out tissue valves at the same rate as in the aortic position. I was told to expect 20+ years from my homograft pulmonary valve barring complications.

 

[Karlynn]

I think the mechanical valve is not normally used in the pulmonary position because tissue valves tend to last a long time in the pulmonary position. This valve is more of an "open and shut" valve to control blood flow and not a pumping valve like the aortic valve, therefore it tends not to wear out tissue valves at the same rate as in the aortic position. I was told to expect 20+ years from my homograft pulmonary valve barring complications.

Bryan,
That's was my understanding as well. It was the greater than 50% of mechanicals that had to be replaced w/in 14 years that made me go

 

[surfsparky]

Thanks for your post Leighanne, I appreciate it. My visit to the surgeon is on the 10th of May- exactly a year since my Ross Procedure. I've got alot of thing to chat with him about - specifically things that you and some other members have shared. I'm really thankful for this site. I'll be praying for you next week....keep us posted.
All the best,
Chris

 

[Abbanabba]

Bryan -
I was told I could expect 10-15yrs from a porcine PVR. I didn't even get a say about which valve they would use (..although all of that seems moot for the time being..). They did advise that in rare cases, the valve could fail in 2yrs or less, but that was RARE. Mechanical valves weren't even discussed and I wasn't told they couldn't be used for a PVR -- I'll have to check that out more thoroughly.

Leighanne -
Thanks for your info. I'll be keeping you in my thoughts over the next few weeks and hoping everything goes well for you.

Chris -
I'll be keeping you in my thoughts right along side of Leighanne Hope all goes well with the surgeon.... keep me posted on how you go.
Meanwhile, I'm going in for further tests on the 11th (tilt-table), and 17th (stress echo) with an event monitor to follow. The fun just never stops!!

Cheers
Anna : )

 

[Les]

I don't know about 50% of mechanicals having to be replaced but yes, I have been told by my cardio that one situation causing mechanical replacement is the growth of your own tissue impeding the valve "flaps" or partially blocking the opening. My first mechanical pulled loose at the suture ring after just 865 days...This second one is clicking away nicely after almost nine years, but it was seen to be leaking at the suture ring in 2002. Thus far, the leak has not increased, but I still wait for the other "shoe to drop...". Mechanical valve materials last a lifetime...The implant site may not. There are no guarantees of not having future surgery...

 

[surfsparky]

Anna, what is a "tilt table"? It sounds like a health hazard?!!
Chris

 

[Abbanabba]

Chris,

From what I've gathered off the net, a tilt-table is a narrow table on an axis that they strap you onto (half-naked and wired up! - honestly, you think they'd buy you dinner and a couple of drinks first, wouldn't you?!! ..) before they tilt you at various angles to see how your BP responds.... kinda like when you stand up too fast. If that doesn't work then they inject you with a drug to simulate adrenaline, again, to see how it effects your BP.

If either of these things make my BP drop, then I'll probably be prescribed sodium tablets to increase my BP and hopefully reduce my dizzy spells and lightheadedness. If my BP doesn't react, then they will explore other reasons. Hopefully PH will be one of the things they finally check for!

Anyhoo, I'll keep you posted - as long as you promise to do the same!

Cheers
Anna : )

 

[johnbelloh]

Pulmanary homograft

Pulmanary homograft

Surfsparky

Who was the supplier of your homograft valve? Did it possibly come from Cryolife?

John