Valve with cathater

[Cecily]

Hello I am about to receive a new pulmonary valve and maybe maze procedure my date is December 1st. I have been lurking in the shadows and now have decided to join in. I had tof as a child my last surgery was in 1971 I was then 21 am now 53. About four years ago I noticed problems with exercise, the Dr. diagnosed asthma then ran an echo and the rest is history you know the story. So now the shock is over and I sit in wait. And now suddenlyI hear maybe a light in the tunnel. Stanford seems to be inserting valves by way of cathater (spelling?). So I get excited OhBoy! no chest opening, no sore bones and muscles and I would imagine not much recuperation. Since I am self employed and work with my upper body this is great news I hope. Anyway I have emailed Stanford and my Cardio at UCSF. what do you guys think?? have you heard of this new technique. Any info would help. Am I grabbing at straws?? Thanks Cecily By the way nice to meet you all.

 

[geebee]

Welcome

Welcome

Cecily - welcome to VR.com. I am sure you will be happy to get all this surgery stuff behind you.
I have read (somewhere) about valve work via catheter but it was valve repair that I read about not replacement. I do not know if anyone is doing actual replacement that way.
However, if it is "out there" you will hear about it from someone on this website.
Communicating with the docs and hospitals is defintely the route to take. The more questions you ask, the more you will learn how much there is to learn.
Keep plugging away and I am sure you will end up with the information and answers you seek.
Take care and keep smiling,
Gina

 

[RayinSF]

Hey Cecily,

I thought I read that valve replacement via cath was still a few years away. I could be wrong though. I had an aortic valve replacement at UCSF in July, an niether my cardio or surgeon mentioned it as an option. Welcome, by the way, and if you have any questions about UCSF, please let me know!

 

[Cecily]

Thanks for the info. But yes I do understand they are now doing a few valve replacements at stanford. They have only done a few. I may be wrong but I do believe it was a valve replacement nor repair. I will let you know if I am wrong or just what I found out.
To Rayin in SF.. what was your experience at UCSF? I did have one mishap occur. But I do like my Doctor Elyse Foster, I have not met my surgeon yet. But apparently he has done quiet a few tof patients. His name is Dr. Tom Karl anyway, I have not been in the hospital in 30 years. how did it go for you. Thanks for the info. Cecily

 

[bvdr]

I did read something about it but I believe it was only being done on a few patients that were judged medically unable to withstand a more traditional type surgery. The results I read were not real encouraging although the population involved was definitely a much higher risk group. I don't know if it was Stanford or somewhere else but you are right, valve replacement has been done via catheter in certain cases.

 

[Mary]

Cecily,
I think Betty is right. The procedure was done on a just a few patients that had a poor prognosis of surviving traditional repair and or replacement.
You probably shouldn't put much hope into having it done via catheter. It sounds like the process is still experimental and would be risky.
Mary

 

[Cecily]

Well my Dr. got back to me. She checked with the pediatric heart surgeons at UCSF and as far as they know it is only happening in Europe. One Dr. is doing it. I havent heard from Stanford yet. Oh Well! was worth a try but still my friend on another board said her Dr. offered it to her so I'll let you know. But it does sound risky!! I go in for Surgery Nov30 and would do just about anything to get out of it as I guess we all would. This is all I think about. But I guess it is better to go with the old standard way than the not so polished new way. Thanks for the posts. I'll let you know if I hear any thing new. Cecily

 

[tobagotwo]

Here's a link to a recent post about catheter-replaced valves. Of all the valves, it would seem to me that the pulmonary has the highest probability of success with this type of approach, as it tends to be a more forgiving position, and doesn't deal with the higher pressures of the aortic valve or the complexity of the moon-type valves.

http://www.valvereplacement.com/forums/showthread.php?t=7969

Unfortunately, it is not in any kind of regular use yet, and is probably effectively in mercy use, or at best in clinical trials.

The more standard surgery is no fun, but you should consider that it is most likely the best option currently available for your continued health. For what it's worth, pulmonary valve surgery is generally considered the least dangerous and most often successful of the valve procedures. (Not that it would feel that way if you're the one who's about to have it done...)

Best wishes,

 

[Gemma]

Hello Cecily,
Maybe if it isn't possible to have the valve replaced via catheter a minimally invasive (ie not "full" open heart surgery) operation may be a possibility? I'm not sure what the correct name is for the procedure but there are some members who've had it done this way.
The other thing is you mentioned the Maze procedure, which I thought was an open heart surgery procedure in itself and done to cure arrhythmias (AF mostly I think) in that way if the surgeons are going in to do something like a valve replacement anyway - it presents the opportunity to do the Maze procedure at the same time. Just something to think about. Of course if they're not set on the Maze then maybe the minimal/catheter option is still a possibility.
Good luck - and welcome to this wonderful forum .
Gemma.
Oh, and PS - there will come a day when you can think about something else instead. Promise .

 

[Diane]

Hello, I am new to this forum. I just found this site last night as I was researching pulmonary valve replacements. If I am not mistaken, I am the friend that Cecily is referring to.

Let me breifly tell you my history. I was born with ToF and had corrective surgery in 1959. I grew up believing that I was "fixed" so there was nothing to worry about. Now, earlier this year (45 years after my surgery), my routine echo to "monitor" the situation revealed possible pulmonary hypertension. I was not feeling bad at all, in fact I felt perfectly fine. My PCP was going to put me on Tracleer but referred me to the cardio first. The cardio said that since I was not having any symptoms, he thought we should just "leave it alone". I have always been my own watchdog, and, as such, I researched PH and discovered that I should be fully evaluated at a PH Clinic. So I requested a referral to the PH Clinic at Stanford. Several trips to Stanford (and LOTS of tests) later, I was ultimately placed with an ACHD specialist in their ACHD Clinic. He presented my case to the ACHD patient management committee this past week. He called me on Thursday and told me that the committee believes that it is time to do a pulmonary valve replacement.

The Dr. told me that they wanted me to consider this new procedure where they insert the repacement valve via catheter. He said that the procedure is really new and that they have only done 2 or 3 of them. He said that they had done one on a 2-year old little girl about a week ago and she is doing well. He is setting me up consultations with both the surgeon that would do the traditional surgery and the cath team that would do this new procedure. He told me that the committee thought that I would be a good candidate for this cath procedure. I thought that was probably because I am in overall good heath ("clinically stable" is the way I believe he phrased it). I hope to heck that they aren't wanting me to consider this procedure because they don't think that I would survive the tradional surgery!

I do want to talk to the cath team because, like everyone else, I would really like to avoid OHS. I have the same concerns about the procedure being new as most of you have said you do. However, it is not my first "new" procedure. When I had my ToF correction in 1959, the particular procedure that they did on me was new and even still experimental. It is my understanding that I am the only one that even survived the procedure. My parents were told that the other children that had the procedure after I did so well did not make it. At that point, they stopped doing that procedure until they worked on it and refined it some more. Anyway, I am not sure that I want to tempt the fates with my life on a new procedure a 2nd time around.

Cecily, who did you contact at Stanford....Dr. M? If so, he told me when I talked to him on Thursday that he was getting ready to go out of town and would be gone through Tuesday. So, you might not hear back from him until after that.

Since I am new at even THINKING about a pulmonary valve replacement, much less having one done, what types of things should I ask about? At this point, I don't have a clue what I need to be thinking about (except "how do I get out of doing this?") I would welcome any sugestions from those of you that have already been though this can give me.

Diane

 

[Cecily]

Hi Diane, I just found this board myself, via Karen. I would just like to find out more about this way of inserting the pv by cathater I don't know if I would go for it either but if safe it sure would beat having OH surgery. I have been in touch with Dr. Hanley at Stanford he is a surgeon (supposedly one of the top for surgery on adults with tof). I was having my records sent from UCSF for a second opinion and then I heard about this cathater thing from you. So I emailed his secretary thursday. I am still waiting to hear. I also emailed my DR. at UCSF. They interminge with the DRs from STanford from what I understand, but she only knew of a DR. in Europe that is doing it. which seems odd if they were doing it at Stanford I would think she would know. She said she also asked the surgeons at UCSF. So I don't know?? Seriously I would not do it unless I was pretty sure it would be safe but it sure beats the hell out of being opened up. Anyway Iwill let you know if I hear from Stanford. Let me know what comes up for you. You have my email if you want to use that. Take care, I know things are not easy for you. Cecily

 

[tobagotwo]

I think you should ask if the procedure and product are FDA approved, or if they are in clinical trials.

That doesn't mean you shouldn't do it. It just means you should be fully aware of the circumstances and whatever track record there is before you go ahead. (One recipient with a week or two behind her isn't a track record. I believe most patients not in dire straits should [theoretically] be able to survive much longer than that with no pulmonary valve at all.)

Clinical trials sometimes provide people with an opportunity to move ahead in time and advantage themselves of technology that others will have to wait years for. However, when you enter them, remember that clinical trials are also where the manufacturers find out what it is they may have forgotten or failed to consider in the product's development.

I will certainly be rooting for you either way you go, and I hope you will let us know how well it works for you. If it goes well, it could be a great boon for many. There are a number of VR members who are looking at pulmonary replacement, including some Ross Procedure recipients who may well have it in the future.

Did they say whether you would require permanent anticoagulation therapy with the catheter-introduced valve?

Best wishes,

 

[Diane]

Well I finally got to go back to Stanford.....between my schedule and theirs, it has taken a long time to get coordinated.

Unfortunately, I did not really find out anything on this new valve replacement via catheter procedure. After looking at my CT Scan, they said that the opening in my pulmonary artery is too large for the valve that they can thread through the catheter. So they told me that they could not offer me the procedure after all and that was that.

They did tell me that the baby that they did the procedure on a couple of months ago is still doing well. While I was waiting to speak to the doctors, I was reading an interesting article on the procedure in the December 1st issue of JAMA. According to the article, there have been several success stories throughout the world. But the article states that it is still too early to say if the procedure is really successful because a real success story is not 3 - 6 months or even a year but 10 years or more. So, time will tell.

Sorry I don't have more info to share.

Diane