Bad News from Cleveland Clinic

[hensylee]

If you can't get your dr to call you, maybe going to someone specifically for the pressure sores might help? You must be in pain. Nancy is the one here in VR who has had much experience with these sores; her advice is always so welcome because we know she knows how it is. I am praying that you will get some answers really soon. Keep calling them, maybe? That squeaky wheel, you know.

 

[Dawn-Marie]

Hi everyone ~ Thanks for all your help. Actually, there really is nothing that can be done because of where the sores are unless i can have surgery and Dr. Strzalka said previously that my valve is so bad that i probably will die even during a minor surgery. I needed to have a minor surgery when i was at E.C.M.C. in Buffalo, NY when i had congestive heart failure in Nov., 2007 and they wouldn't do that surgery then either. So, nothing will actually solve my problem until i get my aortic valve taken care of (and i'm beginning to doubt that will happen). In the meantime, i do the best i can. I have to be up from the time my aide leaves in the morning until when my aide comes at night at 8 PM, since Medicaid will not pay for any more hours, and i couldn't do what i need to do from bed (cook my meals and eat, etc.). Also, i can't turn and position myself in bed every 2 hours to keep myself off the sores. I do have a special cushion i sit on that cost almost $800. So, unless i have the surgery i need nothing is going to clear them up completely. Odd...i put Bag Balm on them Saturday morning, Saturday evening and again this morning and they don't seem quite as bad and Bag Balm is meant for cows. Nothing will clear them up completely until i have the surgery though, so the best i can do in the meantime is try to prevent them from becoming infected or becoming deeper.

They did suggest going into a nursing home to try to clear them up, but our nursing homes in this area are so bad that two of my neighbors went in them to recuperate after surgeries and they ended up with pressure sores!! They have cut the nursing home staffs so bad that there are not enough aides to take care of people properly, sad to say.

I know Dr. Strzalka will be back in his office Tuesday so i'll try getting a message to him then. Since he's a Cardiac Surgeon, i'm not even sure he knows how bad bedsores are, or cares. Surgeons tend to only focus on their own specialty and not know much about anything else. This has been the case in my experience anyway. At least maybe i'll find out if he's had any phone calls returned by any other doctors yet. I hope he has, but i'm beginning to give up hope of finding anyone to help me. Sometimes, there is just not a solution for everything unfortunately.

I'll ask Nancy if she has a solution, but i don't think she will once she hears my problem. Thanks for suggesting her!

Dawn-Marie

 

[Nancy]

Do you have a case manager? Could you appeal to the case manager regarding the pressure sores? Since they seem to be getting much worse rather fast, it seems clear that you need to have more time with an aide. Even having someone come once or twice more during the day to care for your sores might make all the difference.

Would your doctor be willing to appeal for you?

Does New York State have any programs that could help you?

 

[Dawn-Marie]

Hi Everyone ~ I talked with Dr. Strzalka this week. He said he talked with Dr. Lars Svensson at Cleveland Clinic (who would have been my Cardiac Surgeon if i'd been eligible for The Partner Study). Dr. Svensson told him that sometime in 2009 they are going to relax the rules for The Partner Study and allow people with Bicuspid Aortic Valves (like mine) to be allowed back into the study. Originally they allowed people with Bicuspid Valves to be in the study, but the outcomes were bad due to the percutaneous valve not fitting right and the people were dying almost immediately. From my conversation with Dr. Strzalka i got the idea that they really haven't improved the method for people with Bicuspid Valves, but they are still going to allow it to be tried again. So, Dr. Strzalka said if i could somehow manage to stay alive until whenever they relax the rules (which might not be until the latter part of 2009) then i might be able to get a transcatheter valve. He said "might" because it would still be a computer that would choose what i receive (the valve, a valvuloplasty or just medicine). Since i now have critical aortic stenosis, i might not make it until then. I also have the problem of needing a operation that might take up to 4 hours because of the bedsores i got because they didn't take proper care of me when i was at Hamot Hospital. I asked him about that surgery (since i had already been told twice before i couldn't even have a different minor surgery i need because my heart wouldn't withstand any surgery until the valve was fixed). He said if i needed to get it done to go ahead and do it, but i could die during the surgery, but he couldn't say because he doesn't have a crystal ball. The problem is that he said since i have the bedsores, i probably won't be eligible for the valve surgery since bedsores can be a source of infection. I'm sort of caught in a Catch 22, if you know what i mean. Oh, he did ask Dr. Svensson if he would evaluate me for traditional valve surgery and he said he would. I talked with Dr. Svensson's secretary and she told me the first thing they have to do is find out if it will be paid for, since i'm in New York and have Medicare for my primary insurance, but NY Medicaid is my secondary insurance. She didn't think that they accepted NY Medicaid anymore. If that's the case, i won't be able to go there. Medicare doesn't pay all that great anymore, and i cannot afford to pay the copays, as they can amount to a small fortune. He already has all my medical information there since Dr. Strzalka sent it there for evaluation for The Partner Study. He talked with him on Tuesday, so hopefully i'll hear something back from him soon, as all this waiting is driving me crazy. I first had CHF in Nov., 2007 and they told me then not to wait very long as my aortic valve was .04 then (i don't know what .04 means, but it must not be good). I'm not sure if he'll be able to do traditional surgery on me though, as Dr. Strzalka said that i'm "inoperable".

Well, that's about where it all stands right now. So, everything is still up in the air. I'm not really sure i want to be a guinea pig, especially since they haven't perfected the Percutaneous Valve to work with Bicuspid Valves. Plus, they have to do a Valvuloplasty before they put the Percutaneous Valve in, and i've already been told previously when i was evaluated for a Valvuloplasty that my valve is so calcified that, more than likely, i would have a major stroke during or right after the Valvuloplasty, and since i'm already a C8 Quadriplegic i'm so scared of having a stroke on top of being paralyzed and losing the use of an arm and my speech. Plus, the long term outcome of the transcatheter valve is not known. I'd much rather give the traditional surgery a try, and if i can't get off the ventilator, i'd just ask to be taken off and die. But at least if it worked and i got off the ventilator, i would have a chance of many years of life. Do you know what i mean?

I'm sorry i rambled so much. Right now i'm just upset by everything. It really didn't help for them not to take care of me in the hospital and make me end up with bedsores that are causing me major problems. A hospital should make you better, not add to your problems. My problems with getting a new heart valve were enough for me to deal with and this added problem has been too much for me! Sorry to complain, but sometimes i just need to vent. As you know, i don't have any family, so i vent to all of you. I hope you don't mind and thank you so much for taking the time to read my posts and lend a listening ear. I'll let you know if i hear anything from Dr. Svensson. He may be able to let me know his decision from looking at the information and CD's of my tests that he has. His secretary said he may want to see me though and do further tests, but she said that will all hinge on whether Medicaid will pay, or not.

 

[Dawn-Marie]

Hi Everyone ~ I talked with Dr. Strzalka this week. He said he talked with Dr. Lars Svensson at Cleveland Clinic (who would have been my Cardiac Surgeon if i'd been eligible for The Partner Study). Dr. Svensson told him that sometime in 2009 they are going to relax the rules for The Partner Study and allow people with Bicuspid Aortic Valves (like mine) to be allowed back into the study. Originally they allowed people with Bicuspid Valves to be in the study, but the outcomes were bad due to the percutaneous valve not fitting right and the people were dying almost immediately. From my conversation with Dr. Strzalka i got the idea that they really haven't improved the method for people with Bicuspid Valves, but they are still going to allow it to be tried again. So, Dr. Strzalka said if i could somehow manage to stay alive until whenever they relax the rules (which might not be until the latter part of 2009) then i might be able to get a transcatheter valve. He said "might" because it would still be a computer that would choose what i receive (the valve, a valvuloplasty or just medicine). Since i now have critical aortic stenosis, i might not make it until then. I also have the problem of needing a operation that might take up to 4 hours because of the bedsores i got because they didn't take proper care of me when i was at Hamot Hospital. I asked him about that surgery (since i had already been told twice before i couldn't even have a different minor surgery i need because my heart wouldn't withstand any surgery until the valve was fixed). He said if i needed to get it done to go ahead and do it, but i could die during the surgery, but he couldn't say because he doesn't have a crystal ball. The problem is that he said since i have the bedsores, i probably won't be eligible for the valve surgery since bedsores can be a source of infection. I'm sort of caught in a Catch 22, if you know what i mean. Oh, he did ask Dr. Svensson if he would evaluate me for traditional valve surgery and he said he would. I talked with Dr. Svensson's secretary and she told me the first thing they have to do is find out if it will be paid for, since i'm in New York and have Medicare for my primary insurance, but NY Medicaid is my secondary insurance. She didn't think that they accepted NY Medicaid anymore. If that's the case, i won't be able to go there. Medicare doesn't pay all that great anymore, and i cannot afford to pay the copays, as they can amount to a small fortune. He already has all my medical information there since Dr. Strzalka sent it there for evaluation for The Partner Study. He talked with him on Tuesday, so hopefully i'll hear something back from him soon, as all this waiting is driving me crazy. I first had CHF in Nov., 2007 and they told me then not to wait very long as my aortic valve was .04 then (i don't know what .04 means, but it must not be good). I'm not sure if he'll be able to do traditional surgery on me though, as Dr. Strzalka said that i'm "inoperable".

Well, that's about where it all stands right now. So, everything is still up in the air. I'm not really sure i want to be a guinea pig, especially since they haven't perfected the Percutaneous Valve to work with Bicuspid Valves. Plus, they have to do a Valvuloplasty before they put the Percutaneous Valve in, and i've already been told previously when i was evaluated for a Valvuloplasty that my valve is so calcified that, more than likely, i would have a major stroke during or right after the Valvuloplasty, and since i'm already a C8 Quadriplegic i'm so scared of having a stroke on top of being paralyzed and losing the use of an arm and my speech. Plus, the long term outcome of the transcatheter valve is not known. I'd much rather give the traditional surgery a try, and if i can't get off the ventilator, i'd just ask to be taken off and die. But at least if it worked and i got off the ventilator, i would have a chance of many years of life. Do you know what i mean?

I'm sorry i rambled so much. Right now i'm just upset by everything. It really didn't help for them not to take care of me in the hospital and make me end up with bedsores that are causing me major problems. A hospital should make you better, not add to your problems. My problems with getting a new heart valve were enough for me to deal with and this added problem has been too much for me! Sorry to complain, but sometimes i just need to vent. As you know, i don't have any family, so i vent to all of you. I hope you don't mind and thank you so much for taking the time to read my posts and lend a listening ear. I'll let you know if i hear anything from Dr. Svensson. He may be able to let me know his decision from looking at the information and CD's of my tests that he has. His secretary said he may want to see me though and do further tests, but she said that will all hinge on whether Medicaid will pay, or not. Dawn-Marie

 

[escargome]

Dawn-Marie,
I am still praying for you on a nightly basis. I ask St. Jude to intercede on your behalf. I certainly hope that you will not give up. I know at this point everything seems like a dark tunnel, but I have faith that there is light at the end of the tunnel (And no I don't think the light is a train)
God Bless You Always

 

[hensylee]

Your news just doesn't get any better, does it? I am so glad you are here in VR where you can talk with us any time you want to. Your life must be pretty hard right now with all this extra stuff. Certainly you are angry with the carelessness that has caused you so much trouble. I truly hope that something can be worked out and you don't have to wait a very, very long time to get what you need. Surely they can find something to make a difference, esp the sores. Thinking of you.

 

[Jkm7]

Dawn-Marie. My heart aches reading all you are coping with and only can send loving thoughts and best wishes. You are such a strong lady and keep on keeping on. Your VR.com family is grateful you share with us. You add so much to this community and we worry about you.

We are always here for you..... you spout off whatever is on your mind. Everyone here would do everything possible to help you even if it is only listening and caring.

 

[zipper2]

Dawn-marie,just catching up on your posts
Oh it certainly is difficult now with your bedsores
another challenge to partake for us together here.
Remember never given any more than each can handl,
and God has made you a hero with these challenges.
Dawn-marie,you have every reason to vent,and you
vent all you want,thats why we are here for you and i'm
sooooo glad you are here for each of us individually,your
posts brighten our days with the warmth of your strenght.
sending (((((HUGS))))) out to you today along with Gods
blessing and further continued prayers each day your in my
thoughts and prayers continually.

zipper2 (DEB)

 

[Dawn-Marie]

Hi ~ Thanks everyone for caring and for your prayers. I'm hoping that Dr. Svensson will be able to perform some sort of surgery on me. If not, i won't have any choice but to give up. Medicare and Medicaid, unfortunately, only pay for a second opinion, and not any more. I just honestly don't know what to do anymore but to pray to God too. So far my prayers are just not being answered though for whatever reason God has. I just wish Dr. Strzalka had at least tried to operate. My doctor told me back in 1983 that the bone cancer i had was going to kill me for sure and didn't want to operate because he said it was useless since it kept coming back every 3 months, or so, but i talked him into operating once more and it never came back again. So, i don't see how they can say 100% that i will not get off the ventilator. If my breathing was so bad, you would think that my oxygen level would be bad too, but it was always 98 to 100% in the hospital and my blood gases were perfect too. But i can't make him do the surgery. I just wish he hadn't wasted my time from November until July saying he would do it, and then changed his mind 2 days before the scheduled date.

I'll let you know when i hear something from Dr. Svensson in Cleveland. I'm not going to hope to hear anything good though, since i somehow don't think he will be able to help me either, especially with the bedsores i have now.

Bye for now,

Dawn-Marie

 

[deek]

Hi Dawn-Marie. My thoughts and prayers are with you. Please don't give up!!!
D

 

[Jackie]

Dawn-Marie, You have my thoughts and prayers and (((HUGS)))

 

[Dina]

My surgeon did not want to operate on me at first. He kept using the
the phrase "high risk" to me but wouldn't really qualify it. I kept going
back to him because I knew of his great track record and I had a positive
feeling regarding him,which I feel is important...to rely on our instincts in
addition(and at times instead of) any facts we have.
It turned out that he considered me a risk simply since I had had endocarditis.
It seems to me that he wanted to create a reason to not operate
on me. I don't think he knew how bad my symptoms really were and since
I was young(30's then)thought that it should be put off. Had I not been
so symptomatic and close to heart failure he would have been right. On his
defense I will say that initially he was working with an old echo report.
So I kept going to him(though I went to others and got same response)and
on my 4th visit in 3 and1/2 years he sceduled my surgery that day for 2 wks
later. He asked me if I was ready,and I said YES, I have BEEN ready.
I did not know that medicaid only gave one second opinion
but if this is true, it doesn't mean you have no other alternatives. You
do not have to accept their opinion as final. With the way the system is,
I believe in us patients having full pestering privileges,and to make full use
of this when needed. The fact of your pressure sores does complicate things,
but if this is a life-saving surgery, alot of doctors may and should be more
likely to help you.
Are your pressure ulcers any better? They are notorious for healing slowly,
as I remember seeing a couple of patients with them. I'm sure that you are
doing everything you can for them and anything I tell you will be unhelpful,
but if I find anything useful, I will PM you with it.
Know that you are in my thoughts and prayers.
My best-Dina

 

[hall]

Dawn-Marie, you are in my prayers.

 

[aussiemember]

Dawn-Marie I just said a prayer for you that you could get some answers and some healing - I can't imagine what you are going through but please feel free to vent whenever you need and we count it a priviledge to be able to listen.

 

[Andrew'sMom]

{{{{{{{{{hugs}}}}}}}}}}} to you dawn-marie. hang in there & keep fighting!