Bad News from Cleveland Clinic

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Hi friends ~

Yes, Dr. Strzalka is a really good doctor who cares about his patients. Since he is not operating he will not make a lot of money taking care of me, yet he still cares enough to try to find a solution. I know that one of his associates, Dr. Fitzgibbon, is from Pittsburgh so he may know a surgeon there who can help me...they have top heart surgeons too. I aksed the nurse from the Percutaneous Valve Study if i would qualify for any other surgeries or procedures. She wasn't sure, but she said she would ask Dr. Svensson. I'm still waiting to hear back. I was hoping that a minimally invasive aortic valve replacement might be easier on me and make it easier to get off the ventilator. I have no idea though.

I'm trying to stay positive. I just don't want to get my hopes up again to have them shattered. Thank you again for all your prayers...i need them! I pray several times a day myself. I just hope God hears them and chooses to heal me. Unfortunately, sometimes his decision and ours are different. Then, i'll just have to pray to be able to handle whatever his decision is with grace.

Well, i'd better get going...i thought i'd have the whole day to be here reading people's posts and replying, but i had bloodwork done this morning and my nurse thinks i have low potassium and she said she will be calling to let me know the results and if my doctor wants me to take more potassium. So, i had better get off the computer for now...i just have dial-up and people just get a busy signal when they try to call me.

Thank you again,

Dawn-Marie
 
So sorry to hear this Dawn-Marie, I know you have already had other opinions but there are still other centers with reputations as good as CC and they may have different opinions. I am talking about places like Johns Hopkins, Brigham and Womens and Mass General and Mayo Clinic. You are in my prayers. Barbara
 
I just wanted to let you know that you will be in my prayers Dawn-Marie. Keep being positive and keep looking and searching with other hospitals and doctors. And we'll be here for you. LINDA
 
Dawn,

Thoughts/prayers continuing for you.....



Cort:34swm."Mr Monte Carlo.Mr Road Trip".pig valve&pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Waiting to be mended like a potter would mend a broken vase" ... Larry Gatlin & The Gatlin Brothers ... 'Broken Lady'
 
Dawn-Marie,
Wanted to let you know my prayers are with you and even though I just joined I sure have appreciated your advice to me. But the way, I feed and watch hummingbirds to calm me down.
 
NEVER GIVE UP!! I am pretty sure that Emory University Hospital in Atlanta GA is also doing this type of surgery. I would have your doctor fax a letter to Dr Stephen D. Clements (cardiology). His fax number is 404 778-5299. He is a wonderful doctor. Last October my Atlanta cardiologist had me visit him. He is a professor and the top cardiologist in Atlanta. The surgeon name is Dr. Paul Kirshcum and his number is 404 778-5040

Emory Healthcare web page:
http://www.emoryhealthcare.org/departments/cardiology/interventional_cardiology/cath.html

I am praying that our GOD may open up some doors and that he leads you to the right surgeon.

Rebecca
 
Hi friends ~ Thank you for your advice, but i'm positive that Medicaid will not pay for a wheelchair van for me to go far away. They hesitated at first about sending me to Cleveland (3 1/2 hour drive). Dr. Strzalka will have to make sure they will pay for NYC before he even talks to a dr. there. I don't want to have one say they will take me and then not have them pay the $2,000 each way that the wheelchair van costs. Just like Ross with his teeth, the cost of a wheelchair van is ridiculous...anything medical is. My new wheelchair costs $24,867.00...more than a car!!. It took over 2 years to get it approved, but it finally happened. Now it's stuck in limbo because i had a special high tech back made that is made of memory foam and the man who made it has to do a final fitting and he had a heart attack and a quintuple bypass and he's at one of his kid's homes recovering. He is the only person in the country who knows how to do this back, so i'm stuck waiting until he comes back to work. Anyway, i don't think i will be able to go anywhere i want to. From what i've heard, Dr. Lars Svensson at Cleveland Clinic is one of the best there is as far as aortic valve replacements are concerned. If he can't offer me anything, i'm not sure anyone else can either. To be honest, i think it's in God's hands now.

Thank you for your continued prayers...you are all so kind to me!

Dawn-Marie
 
Dawn-Marie said:
Hi friends ~ Thank you for your advice, but i'm positive that Medicaid will not pay for a wheelchair van for me to go far away. They hesitated at first about sending me to Cleveland (3 1/2 hour drive). Dr. Strzalka will have to make sure they will pay for NYC before he even talks to a dr. there. I don't want to have one say they will take me and then not have them pay the $2,000 each way that the wheelchair van costs. Just like Ross with his teeth, the cost of a wheelchair van is ridiculous...anything medical is. My new wheelchair costs $24,867.00...more than a car!!. It took over 2 years to get it approved, but it finally happened. Now it's stuck in limbo because i had a special high tech back made that is made of memory foam and the man who made it has to do a final fitting and he had a heart attack and a quintuple bypass and he's at one of his kid's homes recovering. He is the only person in the country who knows how to do this back, so i'm stuck waiting until he comes back to work. Anyway, i don't think i will be able to go anywhere i want to. From what i've heard, Dr. Lars Svensson at Cleveland Clinic is one of the best there is as far as aortic valve replacements are concerned. If he can't offer me anything, i'm not sure anyone else can either. To be honest, i think it's in God's hands now.

Thank you for your continued prayers...you are all so kind to me!

Dawn-Marie
Click to expand...

Dawm-Marie,
I have been reading you recent posts and am so heartbroken that you are having so many stumbling blocks placed in your way. I will pray to St. Jude, Patron Saint of Impossible Causes to intercede on your behalf so that a solution will become available. I swear if I lived near you I would drive you to whatever hospital could help you. I shall keep you in my prayers every night.
 
excellent suggestion ross with angel-flight! dawn-marie, you mentioned pittsburgh in one of your previous posts. if you end up being able to have surgery there, please PM me. i am very close and would love to offer help/support. always remembering you in my prayers. i hope you will be able to find someone who can help you.
 
Ya know, I don't think you should stop with Lars' opinion. I definitely wouldn't condemn yourself, but instead slowly work at getting more opinions from the best valve surgeons. I've got to believe that if there's only one or two surgeons that you can find in the US that can do the procedure, and it's agreed by all of the surgeons you absolutely need this surgery, medicaid would fry for not paying for you to go anywhere to have it done. That's a case any attorney would salivate over.

If I stopped with Lars' opinion, I wouldn't have known that surgery is a legitimate option for me right now. Lars said 4.9 cm is go time, but I'm at 4.2-4.5ish. That's not to say I'm going to do it, but I at least have a multitude of opinions that serve as a way to judge whether or not to go ahead with the surgery.

It just seems like some surgeon should be able to do this if they try hard enough, think about it enough, and have the skills to back it up.
 
Sorry to hear about your bad news. But maybe something as good or better will come up in the future.
 
From Pairodocs-Laura

From Pairodocs-Laura

Dawn-Marie,
I had a good friend who was able to go via AngelFlight to the Mayo Clinic from here. And no, Medicare/Medicaid wouldn't pay a cent, so we had a fund-raiser through our church and AngelFlight kicked in the rest.
As far as ventilators go-I can't tell you the number of times I have had to say the very same thing to my patients or have heard it said to me regarding family members. I am delighted to be wrong in a number of cases, and my mother , who has every ailment known to mankind, was even able to get off the ventilator. If it ends up being permanent-look at Christopher Reeve and Stephen Hawking. There are a few places nationwide that do rehab on ventilator patients.
Never underestimate the power of prayer. It's the only reason my husband is still alive. So...we'll be praying for you.

Thunderstorms in Idaho,
-Laura
 
Hi ~ A BIG thank you Ross for thinking of Angel Flight. I've heard of it, but didn't even think of it now, but then i'm not thinking right all that much lately..my mind is as foggy and numb the last few days as my body! I can contact them and ask them if they would be able to do me...i flew in an air ambulance to Baltimore once for surgery, so i think i could fly, as long as they are capable of getting me on their plane.

Thank you all for your continued support and prayers. I haven't been doing all that great emotionally the last few days. It doesn't help that the nurses at Hamot Hospital didn't give me the greatest care (they were wonderful but they have had staff cuts and just didn't have the time. It's not easy when you have 15 patients per nurse for complete care). So, i ended up with a bedsore that has progressively got worse since my Cardiologist upped my potassium to 40 MEQ twice a day and that wrecks havoc on my stomach. He needed to, unfortunately, since my blood work showed my potassium level is really low due to the diuretics i take. It's hard to balance out. The doctors are just worried that if it gets infected the infection can go to my heart, but they can't let me have a potassium level of 2.3 either, as that's bad for my heart. I can't win either way, lol!

Hopefully, i'll hear from Dr. Strzalka on Tuesday (the day he's in the office) and maybe he's come up with something. Linda said he was busy making phone calls and consulting other doctors. If a doctor in Pittsburgh can help me, i don't see why Medicaid won't pay for the transportation there as it's about the same distance from here as Cleveland. My friend's father had successful open heart surgery there and he was very pleased with the care he got. Several hospitals now are doing the transcatheter valves, so maybe not all of them require that a valve is tricuspid to do it (i hope)!

Please keep praying (as will i) and maybe a miracle will happen and some doctor will be able to help me :eek:)))!

Hope you're all having as beautiful weather as we're having here...lots of days of sunshine and 70's, with low humidity. All next week is supposed to be the same....lots of nice days for me to be outside. I've always been an outdoor person ~ seeing all the beauty in nature makes me feel closer to God! Have a wonderful weekend everyone! Dawn-Marie
 
I know they say you must be ambulatory, but I can't picture them not having someone with an aircraft that can accommodate your needs. They have all types of pilots and aircraft. Worth checking into if all else fails.
 
I just wanted to add one more set of thoughts and prayers. I am holding in my mind the thought that you will make your way to the right doctor--the one with the skill and heart for the job. My prayers continue.
 
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