I am glad to hear you're back home my friend & I'll talk to you tomorrow.
Sweet dreams!
Sweet dreams!
Help Support Valve Replacement Forums:
ALCapshaw2
Well-known member
Dawn-Marie,
Please go back and read Oaktree's first reply (Post #3 in this thread).
It seems to me you could go through all the gates,
see if you are chosen to receive a cather-placed valve,
and if NOT, then just decide to 'drop out' at the last minute. Maybe it's 'not nice', but it's YOUR life.
I vote for doing what you've gotta do to get your best shot.
Best Wishes!
Please go back and read Oaktree's first reply (Post #3 in this thread).
It seems to me you could go through all the gates,
see if you are chosen to receive a cather-placed valve,
and if NOT, then just decide to 'drop out' at the last minute. Maybe it's 'not nice', but it's YOUR life.
I vote for doing what you've gotta do to get your best shot.
Best Wishes!
kfay
Well-known member
Maybe one of you can explain this to me...Can Dawn Marie just not choose to have this valve implanted this way? Is the way she describing it the only way to get the valve (i.e. it is chosen by a computer and she won't know until later )? I saw a news story early this year where a Dr. in Miami (Dr. Evan Zahn, I think) implanted a valve the same (?) way into a boy who has ebstein's anomaly because he had had so many surgeries it was his best chance. He obviously didn't have to go through some radom, computerized selection to make it happen. I actually contacted that Dr. and he said, for me, at the time, it would not be an option for me. Is there not some kind of compassion basis where she could just get it?
Kim
Kim
CJoelHenry
Active member
Quote from Ross: "Don't give up on Cleveland, they are the home of miracles."
Quote from me: The longer you stare into the Abyss, the longer it stares back into you.
I can testify that both are true.
I will pray for your resolution.
God bless.
Keep smiling!
CJ
Quote from me: The longer you stare into the Abyss, the longer it stares back into you.
I can testify that both are true.
I will pray for your resolution.
God bless.
Keep smiling!
CJ
So Dawne, when are we pickin you up to go to Cleveland?
I gotta be honest, your symptoms sound real bad. It needs to be done soon. Maybe I'm overstating or oversimplifying, but I needed to say it.
I gotta be honest, your symptoms sound real bad. It needs to be done soon. Maybe I'm overstating or oversimplifying, but I needed to say it.
D
Dawn-Marie
Hi again, my friends ~ I am leaning towards going to Cleveland, at least for the several days of tests. Then, after they decide for sure if i'm a candidate and the computer decides what i should have done, i'll make my decision. Dr. Ferraro (the doctor who told me the Valvuloplasty and the medicine will not work for me since my valve is way too bad for either one) is originally from Cleveland (in fact i had to wait to see him because he was at Cleveland Clinic to learn some new procedure). Doctors have been telling me since i was at Erie County Medical Center in November (when i had congestive heart failure) that i needed to get this taken care of immediately, but they have kept dragging their feet. Dr. Strzalka made my dentist rush to take care of a tooth i needed fixed in early May so he could operate (which he planned to chance doing until the day before surgery when i wouldn't agree to be on a ventilator for life). Then, after she fixed my tooth right away he took a 3 week vacation and then another 2 week vacation and then another 3 week vacation, so i couldn't get into him for the longest time. Then, he decided he wouldn't operate. He thinks the percutaneous valve is the only hope for me to lead a normal life afterwards and he's probably right based on all the test results. I just truly hope that the computer will choose the percutaneous valve. Even though there is a new valve that isn't causing as many strokes, it is so new the survival rate isn't as high. I think what i'm most scared of is the computer choosing just the valvuloplasty (which Dr. Ferraro is sure wouldn't work and most likely would cause a major stroke) or just the medicine, which i've been told won't help me long term either. It will be hard to deal with.
Yes, Oaktree, you're right. Medicare and Medicaid unfortunately will not approve and pay for anything that is deemed "experimental" or "investigational", so neither one will cover a thing. I did call Cleveland and they said that while it's true that i do have the option to drop out right up until after i have the tests and the computer decides what is to be done, that they strongly discourage patients to do this. I can see their point since it costs quite a bit of money and a lot of their time. Since i am paralyzed they have agreed to let me stay in the hospital the 3-4 days it takes for tests when normally they have people stay in a motel and shuttle them back and forth. Unfortunately, i need a special hospital bed, a hoyer lift and a personal care aide (none of which are available in a motel). It's nice of them to do this as it will be much more expensive.
I still have not received the paperwork to sign and send back. After they get it back they will give me a date for the tests. Aaron, i sure hope that they will get back to me soon as my valve is getting worse and if i keep waiting something may happen to my heart that will disqualify me for the transcathater valves. Like all of you have said, it's the waiting that can drive a person crazy and i've had to wait too long when i know that waiting is not good. Dr. Strzalka said i'm like a ticking time bomb and can have a heart attack or atrial fibrillation or go back into congestive heart failure anytime. All i know is it isn't good that i'm swelling again and having chest pains and SOB.
Al, you're right...i should give this my best shot. Especially if the computer chooses one of the transcatheter valves. If i didn't try, i'd always wonder if i made a huge mistake and could have many years of life (and that would be a shame as i think life is WONDERFUL despite everything i deal with)!!
Thank you all so much for caring and for your prayers!!
I'll let you all know as soon as i get a date to go to Cleveland.
Dawn-Marie
Yes, Oaktree, you're right. Medicare and Medicaid unfortunately will not approve and pay for anything that is deemed "experimental" or "investigational", so neither one will cover a thing. I did call Cleveland and they said that while it's true that i do have the option to drop out right up until after i have the tests and the computer decides what is to be done, that they strongly discourage patients to do this. I can see their point since it costs quite a bit of money and a lot of their time. Since i am paralyzed they have agreed to let me stay in the hospital the 3-4 days it takes for tests when normally they have people stay in a motel and shuttle them back and forth. Unfortunately, i need a special hospital bed, a hoyer lift and a personal care aide (none of which are available in a motel). It's nice of them to do this as it will be much more expensive.
I still have not received the paperwork to sign and send back. After they get it back they will give me a date for the tests. Aaron, i sure hope that they will get back to me soon as my valve is getting worse and if i keep waiting something may happen to my heart that will disqualify me for the transcathater valves. Like all of you have said, it's the waiting that can drive a person crazy and i've had to wait too long when i know that waiting is not good. Dr. Strzalka said i'm like a ticking time bomb and can have a heart attack or atrial fibrillation or go back into congestive heart failure anytime. All i know is it isn't good that i'm swelling again and having chest pains and SOB.
Al, you're right...i should give this my best shot. Especially if the computer chooses one of the transcatheter valves. If i didn't try, i'd always wonder if i made a huge mistake and could have many years of life (and that would be a shame as i think life is WONDERFUL despite everything i deal with)!!
Thank you all so much for caring and for your prayers!!
I'll let you all know as soon as i get a date to go to Cleveland.
Dawn-Marie
I had a thought though: Since it's a "blind study", will she or maybe even the doctor be able to know if it's a valve implant or valvuloplasty? I mean, will she be too sedated to make the decision to back out after she finds out?
Either way, free testing is free testing. I'd move heaven and earth to get there and get it done ASAP. Maybe it isn't free, but it's still cleveland clinic.
Either way, free testing is free testing. I'd move heaven and earth to get there and get it done ASAP. Maybe it isn't free, but it's still cleveland clinic.
L
Leah
My sense of CC (from one visit and by reputation) is that these are highly competent and committed people. I don't believe they can or would "flip a coin" if they already "know" that one of the alternatives "won't work" for you. They are licensed medical professionals, they have an obligation to "do no harm," and these are some of the best. I think it's extremely important, when you see the docs in person, to ask hard questions about what you've already been told about the consequences of the different procedures. What is CC's opinion about this previous advice? As to the nurse's saying it's a flip of a coin, her assumptions and yours may be different; for example she may assume that you know the doctors wouldn't and couldn't randomly assign you if they already "knew" the result. Again, it goes back to whether you do or don't know that the other procedures won't work or would be bad for you. You don't turn into an object to be experimented on just because you enter a study.
I suspect you'll have much more information once you visit CC - even though there will be huge uncertainties.
Good luck, and may you continue to have the persistence and grace you exhibit in these extremely difficult circumstances!
All the best,
Leah
pamela
Well-known member
I've been reading about the procedures most commonly followed in the implantation of the valve prostheses. A valvuloplasty is first performed to open the stenosed native valve and then the stented prosthetic is placed at the opening. I hope you have a chance to receive one of the two valves they're testing. They've had such fantastic results in Canada and abroad with these devices, sometimes I wish I could make you all honourary Canadians if only to take advantage of our accessible health care.
Take Heart everyone, the time will come when access to medical care for all citizens is going to be as inalienable a right as the right to a fair trial and a lawyer is.
Take Heart everyone, the time will come when access to medical care for all citizens is going to be as inalienable a right as the right to a fair trial and a lawyer is.
thenewmarket
Well-known member
Dawn Marie you are an incredible woman! Your life is such an inspiration and we only know you through the written word. How I pray that you are chosen to receive the percutaneous valve.
As one who has had the Cleveland Clinic experience with surgery, I think you will find total compassion once you pass through the doors and begin your testing. There is no perfect hospital or situation, but these folks are all about efficiency and quality care. My husband was the patient and I was the frightened spouse. We were both treated with respect and dignity. I just know this will be your experience while you are there.
Cleveland Clinic is a difficult place to navigate as a non handicapped individual. I am thrilled they are making a hospital room available for you during testing. I can only imagine how exhausting this experience will be for you.
Please know that we are ALL pulling for you as you walk this difficult road. You have cheerleaders all over the world on this forum!!!!
As one who has had the Cleveland Clinic experience with surgery, I think you will find total compassion once you pass through the doors and begin your testing. There is no perfect hospital or situation, but these folks are all about efficiency and quality care. My husband was the patient and I was the frightened spouse. We were both treated with respect and dignity. I just know this will be your experience while you are there.
Cleveland Clinic is a difficult place to navigate as a non handicapped individual. I am thrilled they are making a hospital room available for you during testing. I can only imagine how exhausting this experience will be for you.
Please know that we are ALL pulling for you as you walk this difficult road. You have cheerleaders all over the world on this forum!!!!
vprnet
Well-known member
Dawn Marie, I've been to the clinic recently for testing and I believe you will find them to be kind and receptive to your needs.
Best wishes and our prayers on your decision. Vi
Best wishes and our prayers on your decision. Vi
ctyguy
Well-known member
Dawn-Marie...
Stay strong and vigilant because C.C. is the right place for you to be and I beleive that with every ounce of my being. I had my surgery there and was impressed with just about every aspect of it. Probably the biggest impression that was made on me was the care I received in the ICU after the fact. Those nurses were simply incredible. They have a cardiac specific ICU and I remember the lady next to me who was probably in her early to mid-70s. I don't know what procedure she had but I remember she had some serious bowel issues. She was very upset that she couldn't keep "things" under control herself and the ICU nurse had to clean her up probably 3 different times that I can recall. Keep in mind I was in la-la land to a certain extent myself. But that ICU nurse who was all of 23 (I asked her) had a smile on her face the whole time. I could hear her next door talking to this women and you could hear the compassion in her voice. An absolute saint in my opinion, someone who has truely found her calling. I also found the rest of the staff absolutely top notch.
Given the complexity of your procedure do you know who your surgeon is going to be ? I haven't read this entire thread but I do understand the basics of the procedure your up against. They have alot of great surgeons, Im just curious as to who your dealing with.
Best of luck to you, you will be in my prayers....
Stay strong and vigilant because C.C. is the right place for you to be and I beleive that with every ounce of my being. I had my surgery there and was impressed with just about every aspect of it. Probably the biggest impression that was made on me was the care I received in the ICU after the fact. Those nurses were simply incredible. They have a cardiac specific ICU and I remember the lady next to me who was probably in her early to mid-70s. I don't know what procedure she had but I remember she had some serious bowel issues. She was very upset that she couldn't keep "things" under control herself and the ICU nurse had to clean her up probably 3 different times that I can recall. Keep in mind I was in la-la land to a certain extent myself. But that ICU nurse who was all of 23 (I asked her) had a smile on her face the whole time. I could hear her next door talking to this women and you could hear the compassion in her voice. An absolute saint in my opinion, someone who has truely found her calling. I also found the rest of the staff absolutely top notch.
Given the complexity of your procedure do you know who your surgeon is going to be ? I haven't read this entire thread but I do understand the basics of the procedure your up against. They have alot of great surgeons, Im just curious as to who your dealing with.
Best of luck to you, you will be in my prayers....
D
Dawn-Marie
Hi My Friends ~ Thanks for all your kind words and prayers. I don't really know how inspirational i am...i'm just trying the best way i can to live!
As far as the testing goes, the only decision the doctors can make based on the tests is whether i fit in one of two classifications: Operable or Inoperable. They will then tell me all the complications for each procedure i might have done. Then, the computer will randomly assign me to one procedure:
1. If i'm operable, the computer will choose either surgery or one of the two transcatheter valves.
2. If i'm inoperable, the computer will choose either medicine, valvuloplasty or one of the two transcatheter valves.
The computer has to choose randomly (the nurse said it's like a flip of a coin) because it's a blind study. The doctors can have no input except whether i'm operable or inoperable. That's all. Otherwise, it is not a blind study.
I just wish they would HURRY!! Still nothing in the mail today.
My thanks to all who have been to Cleveland Clinic for reassuring me that they are caring people. I just had reservations about Dr. Svensson since my ex-neighbor's son said he doesn't tell you very much about what will happen to you and i like knowing everything...then i deal with it better if i know what to expect. Dr. Charles Edwards (the surgeon i had in Baltimore when i had experimental spine surgery years ago) refused to tell me anything about the surgery back then or it's consequences and it was not easy. The residents never even called me by my name there...i was always "Dr. Edward's Spine" when they came on rounds. Back then i didn't have a computer so i couldn't look up anything and i knew nothing of what to expect. It wasn't an easy time...because of complications i was in the hospital and rehab. from early March until late November. I think that's why i have reservations about being a guinea pig again, but i'm getting past them since i know this is my only chance to live.
Well, i'm on my way outside...it's a beautiful day and i have a bunch of birds to feed. Hope you all have a nice Labor Day..i'm going to our annual city Labor Day Picnic. Lots of music and food and then in the evening there are fireworks and a laser light display (which i'll miss since my aide comes at 8 PM, but that's okay). I think the 10,000 Maniacs are going to perform (they're from our town and i love to hear them sing "These are the days"). Hope you all have fun too and thanks again for all your advice and prayers!!
As far as the testing goes, the only decision the doctors can make based on the tests is whether i fit in one of two classifications: Operable or Inoperable. They will then tell me all the complications for each procedure i might have done. Then, the computer will randomly assign me to one procedure:
1. If i'm operable, the computer will choose either surgery or one of the two transcatheter valves.
2. If i'm inoperable, the computer will choose either medicine, valvuloplasty or one of the two transcatheter valves.
The computer has to choose randomly (the nurse said it's like a flip of a coin) because it's a blind study. The doctors can have no input except whether i'm operable or inoperable. That's all. Otherwise, it is not a blind study.
I just wish they would HURRY!! Still nothing in the mail today.
My thanks to all who have been to Cleveland Clinic for reassuring me that they are caring people. I just had reservations about Dr. Svensson since my ex-neighbor's son said he doesn't tell you very much about what will happen to you and i like knowing everything...then i deal with it better if i know what to expect. Dr. Charles Edwards (the surgeon i had in Baltimore when i had experimental spine surgery years ago) refused to tell me anything about the surgery back then or it's consequences and it was not easy. The residents never even called me by my name there...i was always "Dr. Edward's Spine" when they came on rounds. Back then i didn't have a computer so i couldn't look up anything and i knew nothing of what to expect. It wasn't an easy time...because of complications i was in the hospital and rehab. from early March until late November. I think that's why i have reservations about being a guinea pig again, but i'm getting past them since i know this is my only chance to live.
Well, i'm on my way outside...it's a beautiful day and i have a bunch of birds to feed. Hope you all have a nice Labor Day..i'm going to our annual city Labor Day Picnic. Lots of music and food and then in the evening there are fireworks and a laser light display (which i'll miss since my aide comes at 8 PM, but that's okay). I think the 10,000 Maniacs are going to perform (they're from our town and i love to hear them sing "These are the days"). Hope you all have fun too and thanks again for all your advice and prayers!!
Try to put everything else aside for now Dawn & have a wonderful time at the fair. Enjoy the music, the food, the merriment.
Hopefully this coming week, you'll get the papers & you can start getting prepared for Cleveland where I have great faith that they will be able to do something for your situation. Hang in there my friend!
Luv,
Norma
D
Dawn-Marie
Scott ~ the surgeon is Dr. Lars Svensson and the cardiologist is Dr. William Stewart. I checked out his bio on Cleveland Clinic's website and he seems like a very caring individual who lectures about the importance of God in healing...my type of guy!! They say Dr. Svensson is one of the best in his field, so even though he may not talk much, maybe it won't matter as he's good. Hopefully, Dr. Stewart will let me know everything!
Thanks for the reassuring words about Cleveland Clinic!
Thanks for the reassuring words about Cleveland Clinic!
M
Mary
Enjoy the day and the rest of the week-end.
Dawn Marie
I am glad to hear that you are going to get out and enjoy the festivities for Labour Day. This will hopefully provide you with a little bit of a temporary "mental reprieve" from your difficult situation. I am thinking of you and keeping you in my prayers.
Wanda
It is encouraging to read other members' positive posts re: staff at CC and Dr. Stewart sounds like a caring doctor (my kind of doc too!)
I am glad to hear that you are going to get out and enjoy the festivities for Labour Day. This will hopefully provide you with a little bit of a temporary "mental reprieve" from your difficult situation. I am thinking of you and keeping you in my prayers.
Wanda
It is encouraging to read other members' positive posts re: staff at CC and Dr. Stewart sounds like a caring doctor (my kind of doc too!)
Andrew'sMom
Well-known member
Dawn, I am praying for you. You have such a great attitude & outlook on life. I wish you the very best outcome in this research study.
D
Dawn-Marie
Thank you for your prayers Andrews Mom ~ They help immensely! I'm still waiting to hear from Cleveland Clinic. I thought they were sending out the papers for me to sign right away, but i guess not or i would have got them by now. They found the CD of my TEE (which they had not been able to locate). I'm hoping they didn't find anything wrong with that which will make me ineligible for the study. You would think they would let me know that though. I try to keep a good attitude, but sometimes i don't...right now i'm going crazy waiting to hear from them..i'm about ready to give them a call this week if i don't get the papers to see what's happening. I don't want to be a pest, but i want to get there and get it done and over with because i'm having more symptoms now and my doctors said my valve is critical and needed to be taken care of months ago. Patience is not one of my virtues! Thank you again.
