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D

Dawn-Marie

Hi ~ Dr. Strzalka had called Dr. Lars Svensson at Cleveland Clinic and asked him if, even though i don't qualify for The Partner Study due to my having a Bicuspid Aortic Valve, he could possibly do a minimally invasive surgery to replace my aortic valve. I heard back from his nurse, Barbara May, that he denied me too, since he said my pulmonary function is so bad i would not get off the ventilator (same thing Dr. Strzalka had thought would happen). He suggested that i have a Valvuloplasty to open my aortic valve temporarily as he said that they hope that sometime in 2009 they will not be governed as much by the FDA and that they will be able to do it on people with Bicuspid Valves. But then the Finance Counselor called me and told me that i wouldn't be eligible to go there since i have New York Medicaid (as a secondary insurance...Medicare is my primary insurance). She said NY Medicaid won't pay for people in NY to go out of state anymore. I called my caseworker and she said that that is not true ~ that the truth is that Cleveland Clinic won't take anything but Ohio Medicaid anymore. They also called my former neighbor's son (the one i've talked about that has Marfan's Syndrome) and told him that if he hadn't been a patient there previously he wouldn't be allowed to go there anymore, but since he's had surgery there, they will still accept his NY Medicaid. So, now i have to see if they will pay for me to go to Columbia Presbyterian Hospital in NY City. It is more than twice the distance of Cleveland, so i'm not sure. I should have an answer sometime mid-week. I'm not even sure what to do. I originally was going to have a Valvuloplasty several months ago, but the Cardiologist, Dr. Ferraro, told me my valve was so calcified he said he wasn't sure he would be able to open it up all that much, plus he was very apprehensive about doing it since he said it could send plaque to my brain and cause a major stroke (just what i need on top of being paralyzed already). But i need to have a Colostomy done because of my bedsores and they cannot do this surgery unless my valve is opened up with the Valvuloplasty, because they are afraid i won't survive the Colostomy, because of my valve. I feel stuck and don't know what to do! At least i had the woman at transportation pre-approval laughing. Dr. Strzalka had the bright idea to somehow get my flown to France where they are doing the percutaneous valves and are not governed by the FDA so that i could get it done now. She said it will be hard enough to get me to NY, let alone France!!!! They do it in Canada too, but they do it in Vancouver, BC, which is way over on the other side of the country (i think). Plus i'm quite sure Medicare and Medicaid will not pay my bills for outside the country...it's hard enough when you go outside your state.

Would any of you go through with this Valvuloplasty? I'm dead for sure if i don't do anything, but it's going to be dangerous to do. Plus Dr. Svensson's nurse said there are no guarantees they will be able to do the percutaneous valve surgery on bicuspid valves next year...they are just "hoping" they can. But i have to get something done soon or my bedsores will get so bad i'll end up getting major sepsis from them. It's just been one thing after another lately, and i'm getting to the point where i just don't know what to do anymore!

Thanks again for letting me vent. I hope you truly don't mind. I don't have any family and my friends don't really want to listen to my problems, so i really need to come here and see what you all have to say about what you would do in my situation. I hope it's not too much of a burden to you all to have me tell you my medical problems.

Dawn-Marie
 
My dear Dawn,

Please don't EVER think that you are being a burden by sharing your medical situation with us! (and I'm saying this w/tears in my eyes & gut wrenching agony for you!) If I had a magic wand, or if just by thinking of you I could make you well, then my friend you would have been healed months & months ago because you're NEVER far from my thoughts & prayers!

I don't know what the answer is. I would love to say to you, go ahead & have the Valvuloplasty but your condition is so delicate I don't know whether this is the right thing to do! But then again, everything is a gamble; we never know what's going to happen to us or why. In any given moment, a life-changing event could happen to anyone of us!

You just have to go w/what your mind & heart are telling you to do & then don't look back & just go with it & let God take care of the rest!

My prayers & love are with you & like I said, I'd give anything in my power to make you better if I only could!
 
One of my neighbours had a valvuloplasty on her PV, she already has an AVR with a St.Jude after a failed Ross procedure. She is doing well, sorry I don't know the details of it. I'm not much help, but I wish you well.
 
I'm sorry things keep getting more complicated. I agree with Norma - do what your mind and heart are telling you to do. Please vent here anytime. You remain in my prayers.
 
Please continue to come over here to post, rant or whatever it takes. You are certainly never a burden.

Like Norma I so wish I had a magic wand to make you better.

I just don't know what I would do in your situation. I will continue to pray for you.

Earline
 
Dawn-Marie,
I also cannot tell you what is right or wrong to do. I am not in your space. But one thing I can say is that you need to follow your heart. Just don't stop talking to us. I have been following your post's for the short time that I have been part of this group, and every night when I say my prayers, I always include a request to the Lord to bring you blessings. And like Norma and Earline I cannot find my magic wand, otherwise honey this situation would have been taken care of a long time ago. You may not have physical family present, but you have your valve family who is always here to listen and love you.
 
Dear Dawn-Marie,

Like Chris I have also been reading your posts in the short time I have been part of this group. Although I don't have any advice on your actual medical problem, I want to say that you are such a strong person, and amazingly caring (you always write a reply to everyone with a word of hope), and I can only hope that things will somehow work out for you.

Hugs and really hoping there is a way to have the surgery you need...

Nupur
 
I have heard of screens being placed in the great vessels to capture any clots or plaque in the bloodstream. Could you ask about that? Maybe if they inserted them before valvuloplasty then any particles that break free would be caught by the screens rather than float to where they would do damage.

I keep good thoughts going out for you.
 
YES! Keeping going Dawn! Don't settle for anything but the best possible solution.

Me personally, I'd go for Svensson and the minimally invasive route. I think the risk of the calcification flaking off and hitting your brain is a legitimate concern. I wouldn't want valvuloplasty with a heavily calcified valve.

There's a vena cava filter they can place in the arteries like someone mentioned earlier if you do go for the valvuloplasty. I think there's another called a Greenfield filter. They might be the same thing under different names. It's important to know that they are not infallible.

I wanted to mention that my grandmother in law just had a procedure done where her lungs were filled with fluid because of pneumonia so they had to suck all the fluid out. Her vitals and overall feeling of wellness improved dramatically immediately after the procedure. I think this was one of your main concerns about the general anesthesia, so I wanted to let you know that it can be done and it's apparently pretty effective.

Perhaps Svensson and a pulmonary specialist can team up for your procedure.
 
It seems that the most difficult decisions in life are the decisions
that no one can make for us.
From what you have said, it sounds like even if the surgery
is risky, it is even more dangerous to do nothing.If it were me, I would be
indecisive also. But if you can go to N.Y Presby., this would make your
odds much better. My husband had a work related fracture in his arm
that needed surgery. They are very thorough from surgeons to the aides.
The nursing staff is of a caliber that you rarely see in NYC these days,and
I think this the level of attention you need to recover.
I continue to think of and pray for you.
My best wishes-Dina:)
 
Dawn,

No answers here either but the only thing I can say is that I also would follow my heart and go with the decision that you feel lead to - please continue to share everything with us - we are here for you and always willing to listen and pray for you - Jeanne
 
Dawn,

I am sorry you are faced with such tough decisions and I hope you find an answer that works for you.

I think your statement that you will die if you do nothing kind of provides at least a guide towards your answer. It's really just timing and whether you want to take control instead of waiting.

I wish you all the very best.
 
No wise words from me either Dawn-Marie...I just want to send you some cyber-hugs and let you know I am thinking of you and praying that somehow someone will come up with the perfect solution to your dilemma.

Dont ever forget that you are most welcome to whinge and whine as often as you need.

love and prayers

ton
 
Hi everyone ~

Thank you for caring and for your prayers. Yes, my doctor did want Dr. Lars Svensson to see if he could do a minimally invasive surgery on me since because of my Bicuspid Aortic Valve i'm not currently a candidate for the Percutaneous Valve. But Dr. Svensson denied me for it since he is certain i'll not get off the ventilator, and will also probably get pneumonia and die from an infection. So, he said he would do the Percutaneous Aortic Valve on me next year IF they opened up the study, but then the Finance Counselor said since i have NY Medicaid i can't go there. So, they do the same study at Columbia-Presbyterian in NY state and i would have to go there, but Medicaid might not pay for wheelchair transportation that far since it would be $2,000 each way. I'll find out the middle of this week if it would be covered. Ideally, Dr. Strzalka would like to see me go to France or Canada, but Medicare and Medicaid don't pay for surgery outside the country. All i know is my skin is going to break down completely if i don't get the surgery i need (about a 4 hour surgery) and i can't have the surgery if i don't have the Valvuloplasty and if it doesn't have it good result and open up the valve quite a bit. Otherwise, i won't survive the surgery i need to have soon. So, i hope Dr. Ferraro at Hamot Hospital in Erie, PA will do it and that it will work. I know it will be very risky, since he already told me i could have a major stroke during it, but i don't know what else to do. I feel stuck between a rock and a hard place. I am having symptoms again from the valve being worse...i'm swelling more every day, getting dizzy and one day i had chest pain and it went up and down my left arm into my wrist and hand and kept up for almost 4 hours off. I've told my doctors about this, but they just brush it off and say it's normal for critical aortic stenosis. I have chest pain every day, but not to that extent. To be honest, even though they said i have a 95% chance of getting stuck on the ventilator and probably dying, i would go ahead and give the surgery a shot. It's just that i can't talk them into doing it. I just know that if something isn't done soon, my bedsores will get bad enough to kill me. I've had 2 friends die from them and so did Christopher Reeve (what happens is you get sepsis and then a heart attack from the sepsis). I think the problem is, like Dr. Strzalka said, i'm a very complex case and they don't know what to do. Sometimes i guess there is just no solution for everything. So, i guess for now i just enjoy every day i have and keep trying to get someone to help me. I know doctors don't always know all the answers, because they told me i would be dead for sure back when i was 29 and got paralyzed from the bone cancer of my spine (since the cancer kept coming back so many times). Back then they told me i would be dead and didn't want to keep operating, and now i'm 57 and still alive. Lucky for me i talked my doctor into operating one more time and the cancer never came back again. Dr. Strzalka said he was not being my executioner, but in a way he is by doing nothing. Well, to be honest, he isn't doing nothing in that he's trying to find a better solution for me. It's just that they are HOPING the study will open up to include Bicuspid Valves, but they are not sure. It's just that i may not have that much time to waste waiting since my valve is so bad.

Please keep praying for me. I pray all the time and hope God will hear what is in my heart and help me. Sometimes, i'm afraid, his answer won't be the one i want though. But i still keep praying and hoping.

I'll let you know what happens with everything. Hopefully, i'll get some answers soon as this waiting is driving me crazy!!

Dawn-Marie
 
Dawn-Marie, With tears in my eyes for you,i know God is
listening and i know he has a good plan for you,it's test and trial
time first and you are soooooooo strong and the wailtings hard
Your post makes me feel terrible as i've been waiting impatiently
for my date and when i spoke to my surgeons office Fri,i made clear
i need to get this over with and they are gonna call me this comming
week with a date,I know if you had something definate for getting
this done or at least started,you would feel more like they are doing
something,but i know God's listening,maybe hes testing all of us
prior to answering our prayers.But he hears you,and is with you
and all of us in this delima and i feel your prayers and the waiting
will be answered in his time........nothing is too late in the strenght
of prayers,the board is full and the strenght we all have for you
in this,Theres been alot of miracles through God on this vr com
but we each wait our turn and that i believe is where we grow our
strenght and believe me the strenght i,ve endured for myself has
come through your posts.....you are a miracle Dawn-marie in my
eyes.I am so happy we have you and i thank God everyday for
your strenght and your posts. We luv you ((((HUGS))))
Vent all you want we enjoy hearing from you!!!!

zipper2 (DEB)
 
Dawn, this is an interesting reply. Joe had to have surgery to make a fistula for dialysis, and because he had so many co-morbidities, including severe lung issues, the head of anesthesiology came in and went over every inch of his chart which was extensive.

He told Joe that he would not give him general anesthesia, but would be able to give him local pain medication and some twilight stuff to get him through the surgery.

And that is what happened, and he came through it just fine. And he never complained about any pain during surgery.

Maybe there would be something along this line that could be done for you.
 
Not exactly UIHCCHI. Aortic valve bypass surgery rarely requires the heart lung machine. This procedure has been done for awhile, but it's fairly rare, and is mostly used on older patients. They go through a keyhole incision and insert a replacement valve. It doesn't actually replace your current valve, but makes another pathway so most of the blood "bypasses" the diseased valve. Dr. Gammie at University of Maryland does them. I'm not sure what kind of anesthesia is generally used, but it might be an option for Dawn-Marie.
 
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