Bad News from Cleveland Clinic

[Dawn-Marie]

Hi everyone ~ Sorry i've been gone for a few days...i was having computer prolems and they just got fixed yesterday when my friend's husband came during his lunch hour...he's a computer whiz and had the computer fixed in 45 minutes. Then i was so busy with various things (including a trip to the oral surgeon who decided not to pull my tooth).

I talked with one of the Percutaneous Aortic Valve study nurses around 1:15 today. I knew it wasn't good news when she started out with "take a deep breath". Apparently, nobody had really looked at everything that was sent to them closely because the doctors hadn't realized i have a bicuspid aortic valve, which automatically excludes me from the study. They can only do a transcatheter valve on a tricuspid aortic valve. So, to make a long story short, they said "sorry, we can't help you". Basically, they said i'll die as there is nothing to do to help me. So far i'm not dealing with this too good...i've sobbed so hard i have a MAJOR headache. I wanted to thank you all for your support...am i allowed to still come in here to say "Hi" and support other people even though i'm not having a valve replacement anymore? I'm not sure since this is a valve replacement site? Right now i think i'm going to go back outside and feed the birds...it helps to calm me down. I feed them so much that they know me )).

Thank you again for all your support!!

Dawn-Marie

 

[Superbob]

Dawn-Marie,

I am very sorry the news was not good. Of course you are always welcome here! As for what's next, there must be other options -- never give up. Maybe someone more knowledgeable than me will come along and suggest what to do next.

As for the birds, they really come to expect those daily feedings, don't they? I have some that practically land on my shoulder.

All best wishes....

 

[Cooker]

I'm sorry to hear your news ... but as Bob said, never give up!! ... You are part of this forum, part of the family ... you are needed and we would not have you leave us for anything in the world!! (((((HUG)))))

 

[Jackie]

So sorry to hear your news, prayers and (((((HUGS))))) being sent your way.

 

[Susan BAV]

...I talked with one of the Percutaneous Aortic Valve study nurses around 1:15 today. I knew it wasn't good news when she started out with "take a deep breath". Apparently, nobody had really looked at everything that was sent to them closely because the doctors hadn't realized i have a bicuspid aortic valve, which automatically excludes me from the study. They can only do a transcatheter valve on a tricuspid aortic valve. So, to make a long story short, they said "sorry, we can't help you". Basically, they said i'll die as there is nothing to do to help me. So far i'm not dealing with this too good...i've sobbed so hard i have a MAJOR headache. I wanted to thank you all for your support...am i allowed to still come in here to say "Hi" and support other people even though i'm not having a valve replacement anymore? I'm not sure since this is a valve replacement site? Right now i think i'm going to go back outside and feed the birds...it helps to calm me down. I feed them so much that they know me ))...

I'm very sorry for what you are going through, Dawn-Marie. I find great happiness in feeding our wild birds also .

I hadn't heard this before in regard to bicuspids and I just did a brief web search in regard to percutaneous valve replacement and bicuspids and found the following information, bolding mine:

http://content.onlinejacc.org/cgi/content/full/51/2/170

CORRESPONDENCE: LETTER TO THE EDITOR - Percutaneous Aortic Valve Replacement With the CoreValve Prosthesis
Rachid Zegdi, MD, PhD*, Ghassan Sleilaty, MD, Antoine Lafont, MD, PhD and Jean-Noël Fabiani, MD
* Hôpital Européen Georges Pompidou, Service de Chirurgie Cardiovasculaire, 20, rue Leblanc, 75908 Paris, France (Email: [deleted]).
--------------------------------------------------------------------------------
We read with interest the recent article of Grube et al. (1) dealing with percutaneous aortic valve implantation. They reported the experience from 3 centers using the second and third generations of the CoreValve prosthesis (CoreValve Inc., Irvine, California) in 86 consecutive patients. The acute device success was high (88%), and the 30-day mortality was low (12%) in these surgically high-risk patients with mean pre-procedural logistic Euroscores of 21.7%. Hemodynamically, the mean transvalvular gradient dropped from 43.7 to 9.0 mm Hg with a concomitant improvement in the New York Heart Association functional class.
We would like to comment on these results and also ask for some clarifications regarding their data.

When reporting data after aortic valve implantation, one would expect to have information regarding the aortic prosthetic valve area and the rate of prosthesis–patient mismatch. One cannot be satisfied by the transvalvular gradient alone, knowing that a high proportion of patients with left ventricular systolic dysfunction were included in the study. These data are important because they will allow comparison among percutaneous valves themselves and with the surgically implanted prosthetic valves, thus improving the information given to patients.

In the same way, we regret that the post-procedural incidence and severity of perivalvular leakage were not detailed as was the case for the pre-procedural intravalvular regurgitation.

We were surprised that exclusion criteria did not include bicuspid aortic valves. In our experience, stent deployment may be impaired in bicuspid aortic stenosis (2), a condition with an incidence that can reach 50% of the surgically operated patients (3). Furthermore, in the series of Cribier et al. (4), all of the native aortic valves were tricuspid...

 

[marie]

I'm sorry to hear that but just don't give up. Keep searching.
Certainly we want you to stay. You are needed and wanted here.
Earline

 

[njean]

Dear Dawn,

You must never, ever give up! So long as there's life, there's hope!

And don't even think of leaving this forum --- your bravery, your dignity & the way you reach out to others in need is truely an inspiration to behold!

Go on with your life & take pleasure in all the wonderful things you're still able to do each day!

You remain in my prayers always!

 

[Nancy]

Don't you ever give up on anything. No one knows what lies ahead at any time. Perhaps your cardiologist can treat you medically and keep things under control for a very long time.

And don't you dare leave here. We love you and want to hear about what is going on with you good and bad.

We are your friends. And we love you.

Goe Bless.

 

[Mary]

Dawn,
This is disappointing news.
I don't have any advice other than to take each day as it comes.
And forget leaving . . . you are family and are thereby stuck with us!

 

[Freddie]

Don't you ever give up on anything. No one knows what lies ahead at any time. Perhaps your cardiologist can treat you medically and keep things under control for a very long time.

And don't you dare leave here. We love you and want to hear about what is going on with you good and bad.

We are your friends. And we love you.

God Bless.

Ditto and just in case you missed Nancy's reply here it is again;

Don't you ever give up on anything. No one knows what lies ahead at any time. Perhaps your cardiologist can treat you medically and keep things under control for a very long time.

And don't you dare leave here. We love you and want to hear about what is going on with you good and bad.

We are your friends. And we love you.

God Bless.

 

[CThrock]

Dawn Marie,
So sorry to hear the news, but like everyone has said don't give up!! Will keep you in my prayers.

 

[kfay]

Dawn-Marie, I'm sorry for the news. I wish there was something we could do to help. Have you gotten in touch with your cardio to share the news with him? Like Nancy said, hopefully he can manage you well with meds and give you a decent quality of life for a while to come. Don't think for one minute of going anywhere...we would miss you terribly.

Kim

 

[Phyllis]

Dawn, as everyone else has said, don't ever give up. We expect to hear from you on a regular basis- once a member, always a member! My prayers will be with you.

 

[Harrybaby666]

I am very sorry for your news Dawn-Marie....

I am very sorry for your news Dawn-Marie....

And I join the others in saying "Don't you dare even think of leaving Valvereplacement.Com. Yes, VR.com is about Valve repair/replacement, but it is also about friendships and support for whatever ails ya...LOL I have been here 5 years, and even though I have yet to have valve surgery, everyone here has been very supportive and become a second family to me.

Please know that I am routing for you, and sending up prayers that they will fix you up good. ((((((((((((((((((((((Hugs))))))))))))))))))))))))) Harrybaby

 

[Duff Man]

So, to make a long story short, they said "sorry, we can't help you". Basically, they said i'll die as there is nothing to do to help me.

What happened to the Hippocratic Oath they took?? Surely they can't deny you a life saving procedure such as a traditional AVR... I'm blown away.

Did you decide against the traditional AVR? There isn't someone even at CC that can perform it without doing damage?

 

[Jkm7]

So disappointed to hear this news, Dawn, but echo the others in saying that you don't dream of giving up. Fight on with CC. You are family here and, of course, you stay with us. Sending you the very best wishes, Dawn. You are so supportive of all of us and such an inspiration.

 

[Wise]

I'm sorry to hear your news. Prayers and best wishes being offered. You certainly do belong here; don't let that enter your mind.

 

[Andrew'sMom]

Oh Dawn-Marie! I am so sorry to read your update tonight. My heart just aches for you & this situation you are in. Please don't leave VR.com, and please don't give up your fight. Keep calling CCF and other major teaching hospitals to see if you can find someone to help you. Never give up. Sending hugs & prayers to you each day.

 

[Karlynn]

You have my prayers. Keep on fighting. This world is full of stories of people proving doctors wrong.

 

[aussigal]

I am so sorry to hear this latest instalment in your efforts to get your valve fixed.

Like everyone has said, don't go anywhere, you are a valued member of our family.