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[Nancy]

Well, how about valvuloplasty that her doctors were talking about to open up the valve as a short term solution to give her some help until the other surgery might become available for her.

Does that need full anesthesia?

 

[Lisa in Katy]

UIHCCHI - Do you know what kind of anesthesia is used for aortic valve bypass? The U of M site doesn't mention anesthesia, at least that I can find. Since it is a keyhole incision, no sternum split, no heart-lung, and used primarily for frail elderly, I would think they could do it without general. The only place I know that advertises that they do them is the University of Maryland.

There are no guarantees for anything in this life. You just have to get the information you can get and go from there. Good luck Dawn-Marie. Your situation is tough, but it sounds like you are very strong.

 

[Dawn-Marie]

Hi everyone ~ Thank you ever so much for all your support!! The reason Dr. Strzalka talked with Dr. Svensson was to ask him if i could have the minimally invasive surgery, and he said that i would end up on the ventilator from that too. I don't think i would have to be put out for the Valvuloplasty...i think they just sedate people for that. I'm not really sure. I'm hoping to hear from Dr. Ferraro that he will be able to do the Valvuloplasty. At least it's a temporary measure to give me more time and, hopefully, make my valve open enough that i can have the surgery i need for my bedsores (which will be a 3-4 hour surgery under anesthesia).

I'm really hoping they will approve transportation to New York City for me too. That way, if they open up the Percutaneous Aortic Valve study to include the Bicuspid Valves, i can go there and get it done. The only thing i didn't think to ask Barbara May (Dr. Svensson's nurse) is if it will still be a computer that will choose if i even get it if i'm eligible, or if i will just be able to have it done for sure.

I agree with you Lisa in Katy, there are no guarantees in life. In the last 3 weeks I've had 2 friends die from heart trouble (one who was 55 and was very athletic and did lots of mountain biking and jogging, who died from a heart attack in his sleep, one who was 60 who went to our local hospital and they sent her home and told her she had the flu and what she really had was really bad Congestive Heart Failure and she died 2 days later at home). My friend called me yesterday and told me that another high school friend just had a heart attack and she just had to have a quadruple bypass out at Hamot. She wasn't taking care of herself though...she is a diabetic and won't eat properly and she also wouldn't take her medicine for high blood pressure. Ruth said that she just doesn't care what happens to her...i truly hope this was a big wake-up call for her!!

Thank you again everyone. I hope to get some good news soon about the transportation and the Valvuloplasty...I'll let you know if i do.

Dawn-Marie

 

[njean]

Saying prayers for you my friend! I hope you hear something good very, very soon!

There's still hope......you've got to believe that!!!!

 

[Nancy]

Dawn-Marie

Joe was the last person surviving in his close group of friends from high school. Like you, he watched them drop dead one by one. They were all supposed to be healthy, and possibly got too smug about their health. I know one man was too afraid to have necessary surgery.

Joe was the sickest of them all, and he lived a very long life with all of his problems.

I think it was because he was under such a spotlight medically, and things got taken care of one way or another, not always in the traditional way. And we both advocated for him STRONGLY .

So, always keep that hope alive. There has got to be a way to get you some help.

 

[escargome]

Dawn-Marie,
You are still in my prayers. Sometimes when God has to close one door on us, he will open a window. I pray that window is open for you. Even though we have never met in person, I believe your strength and courage is an inspiration to us all. Keep up the fight. There must be a doctor out there who is willing to give you a shot at life after all they don't all know everything....

 

[hensylee]

Dawn-Marie, just had to check into wish you well and let you know I am hoping you can get your doctors to work together to come up with a good treatment for you. You seem to be following through on everything that you can. Maybe one of those things will just fall into place. Keep asking.

 

[Lisa in Katy]

15 hours? Wow! I wonder why it's so much longer than after more invasive heart surgery? That's definitely not an option, Dawn-Marie, sorry. The valvuloplasty sounds good. Now you just need to find the doctor who is the expert who will do it.