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njean

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I just got off the phone w/Dawn-Marie & the poor lady is still waiting.....

She is having other bleeding issues right now & her doctor is now recommending sending her to New York instead. She says it appears to her that he is having second thoughts of performing her operation but has not come right out & said it.

He told her that she would probably be better off w/ a percutaneous valve http://my.clevelandclinic.org/heart/percutaneous/percutaneousValve.aspx but she is very uneasy with this because this valve and/or procedure is in it's experimental stages. And too, Medicare & Medicaid wouldn't pay for her surgery in Cleveland so she's sure that they wouldn't pay to have it done in New York. She's very much against these new valves not too much is known about them.

I tried to reassure her that everything in this life is a gamble & if she in her mind could visualize what it must have been like for the first patient of the first St. Jude or On-X valve must have felt like. :eek:

This goes for every type of valve and/or every type of procedure ---- the first patient will inevitably always be the gineau pig (? spelling please!)

Dawn has a very tough decision to make & I wish I could be there to offer my support in person but I can't so, I will just pray that God will lead her to that decision & I know you will do the same.

She sends everyone her well wishes & prays for everyone that is having surgery.

Until I hear further from her....... (I'm kind of a wreck right now!)
 
Last edited:
Thank you Norma for the update on Dawn-Marie I have been wondering how she is. My heart goes out to her and like you I would love to be able to support her during his awful time.

Keeping her in my prayers.
 
Oaktree said:
Thank you, Norma.

If Dawne-Marie can get the percutaneous valve, I think from what I have read that it actually probably does give her the best chance of being able to return to her prior quality of life. Because she is young, I doubt she will meet criteria for the clinical trials, but maybe she can get it on a compassionate basis. The anaesthetic would be lighter and shorter, meaning she would have a better chance to avoid being put on a respirator.
Surely Medicaid and Medicare have provisions for out-of-network care for a case as special as this one. This is the type of situation where one is tempted to get the news media involved.

Since you asked, it's "guinea." You got all the letters.
Click to expand...

Thank you Oaktree & that (The anaesthetic would be lighter and shorter, meaning she would have a better chance to avoid being put on a respirator.[/ ) is one and perhaps the primary reason her doctor is leaning towards this type valve/procedure. And you mentioned two very important points too, "compassionate basis" & getting the media involved. I hadn't thought of this but you're absolutely right so I plan to get back to Dawn w/as much positive feed back as I can gather.

So if any one else has any reassuring feedback, let me hear it so I can give this to her & perhaps help her in any way possible. :)

Thank you!
 
I have an acquaintance who was born with lung problems (I don't know what kind, in detail). There was a surgery that she had at about 7 years old, recommended for under-5s; neither she nor her parents were told until later (tht's how it was done in Britain at the time, docs called the shots and patients did what they were told )that she was the 2nd child to have this operation. She is now a great-grand-mother in her 80s, and complains more about her stiff joints and her battle with her weight than anything else - sounds about normal to me :D

My thoughts are with Dawn-Marie, and percutaneous does sound like a good option, with all her other problems. Less anaesthetic, no cracked sternum, apparently not much worse than angiogram.
 
I believe the percutaneous route was originally designed for patients like Dawn-Marie. If I were in her position, I would go for it.
Please relay my best wishes, Norma.
 
Mary said:
I believe the percutaneous route was originally designed for patients like Dawn-Marie. If I were in her position, I would go for it.
Please relay my best wishes, Norma.
Click to expand...

Thank you Mary ---- In my heart I think I would take this route too. I will convey all this feedback to her.

We are the nearest thing to family this woman has, other than us, she has nothing! :(
 
WE actually were talking about this for Justin, last year at Boston Childrens, but he ended up needing his conduit replaced and not his valve. IF it helps the way WE looked it it was a cath is so much less invasive easier to recover from ect than surgery and if it didn't work out, then he would have surgery that we planned on needing, but best case, he could have avoided his 5th surgery and the risks associated with opening his chest with all of Justin's scar issues,. IF New York says she is too young, I would suggest contacting Boston Childrens, since they have been using them on children/young adults.
As for experimental, I know it is scarey, but Justin has had a few experimental surgeries, newer products, actually his conduit last year was a newer material they special orderred in hopes it would be stronger than the one he got 2 years earlier. and the way they did his Rastelli was an experiment in hopes it would avoid replacing his conduit as often growing up. It is hard, but I try to look at what would be most benifical to Justin if it worked and pray alot.
I know for Dawn Marie a big concern is coming of the vent, I agree with Mary that she is probably the kind of person this replacing by cath holds the most promise for. I would seriously consider avioding surgery if possible.
I will keep Dawn in my prayers, that she is able to come to a decision she is at peace with. IF she senses the surgeon does not want to operate, I honestly would think about that alot, Since Justin has had so many surgeies and complications ect, I personally want a surgeon that has ALOT of confidence he/she can handle the surgery and has alot of experience with complicated patients, so knows how to handle different problems that may come up.
 
I think it's a wonderful idea for Dawn-Marie. Percuntaneous valve surgery has been said to be for the very senior but also for those too sick to have routine valve replacement. It is for patients like Dawn-Marie this surgery can be a blessing. Her surgeon's reluctance for regular valve surgery may be the best thing he has, thus far, done for her????


Please tell her she is in my prayers and have such a good feeling about this suggestion for her. If only she can get a surgeon/her insurance to agree to it. This could be a blessing.
 
Norma, thank you so much for letting us know what is going on with Dawn Marie. I know she is so grateful to you for reaching out to her.
I actually saw an article when I was researching options for my surgery that a surgeon had performed this type of valve replacement on a 6 year old boy who had had so many surgeries that it was his only option. He did very well.

My first surgery I had was a new surgery and I was in the original group that was followed for 20 years thru Duke. That surgery is now what they use to do ablations on extra pathway conduits in the heart. I wouldn't be here if I hadn't been part of that original guinea pig group.

There are surgeons out there who have some experience with this surgery and if she goes to one of them she won't be the first. I think it sounds like a fantastic idea for her.

Please tell her that we are all here for her. I really wish there was something more that I could do to help her.

Thanks again Norma for keeping us updated and being there for her.

Kim
 
What an ordeal for her. Thanks for the update, Norma.

But I think I recall reading that she said that she'd checked with Cleveland months ago and they couldn't/wouldn't consider her for the PVR?

Edit - Here's the post I was thinking of:

May 7th, 2008
Dawn-Marie
Registered User Join Date: Mar 2008
Location: Jamestown, New York
Posts: 116
--------------------------------------------------------------------------------
My doctor wanted me to go to Cleveland Clinic for the percutaneous aortic valve, but when i called there they said the way the FDA study is set up the guidelines call for people to have to be 70 or older and with 30 days or less to live. She said my dr. could call the dr. and beg him to have me be part of the study, but my cardiac surgeon said he will definitely not call and beg for anything. Plus, anyway, transportation to Cleveland is near impossible for me. From what i've read about it though, it looks as though it will be a viable option down the road in 10 years, or so. The nurse at Cleveland Clinic told me it still is so new that they can't guarantee it's success at all. She said basically people are just guinea pigs and it's still in the investigational stage.
 
On CNBC this morning there was a representative from Edwards being interviewed about percutaneous valve replacement. MY husband called me in to catch part of it. The procedure has been being used more extensively and for a longer period of time in Europe. It was estimated that the time of general use here in the USA was about 2011 and that interventional cardiologists were the ones doing the procedures. There is a clinical trial that Dawn Marie might investigate. If I find a link I'll add it later. My prayers are with you, Dawn.
 
I certainly think that she should not disregard the percutaneous route because she will be a "guinea pig". There may not be any alternative and worst case she has the surgery that she is prepared to have now.

I faced the same kind of decision when I asked the doctors to take out my son's LVAD (heart pump for left ventricle). He was one of the first in the world to have the pump taken out without getting a heart transplant. I knew that if his heart failed, they could put the pump back in and get him on the transplant list. Luckily for us, it has been 16 months and his heart is stable.

Let her know that we are all pulling for her and sending her positive thoughts and prayers.
 
Just adding my prayers for Dawn-Marie...

If this current Doctor is recommending the Percutaneous option for Dawn-Marie then it sounds as if he would/should be able to organise of this procedure for her.

and Norma....Thanks for checking in on Dawn-Marie for us.
 
Count me in with those who are thinking and praying for her. I might be overseas, but my heart with my leaky valve are with her.
 
Dawn-Marie ,i hope you are doing fine and just a reminder you
are in our prayers here everyday,every minute((((HUGS))) to
you and thinking about you soooo often,had to stop and send a hug:)
for you.Tell you we miss you while your away,praying for progress
and lots of knowledge for your Dr's and chin -up,were all here for you.


zipper2
 
Just spoke to Dawn!

Just spoke to Dawn!

Dawn-Marie is home & will post as soon as she is up to it.

Apparently all the medical records, films, etc., that her doctor sent to Cleveland was lost & they have to resend all the information so in the meantime, they have sent her home because they can't do anything more for her there.

She says she feels very dizzy which is probably due to de-hydration so I advised her to drink gatorade if she can. She said her aide would probably pick her up some later.

One of her kitties keeps looking at her as if though she's in a dream & can't believe his eyes that she's really there! :) Bless her heart!

So like I said, she'll post when she's able to & let everyone know the scoop!
 
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