Hi Dawn-Marie,
I am so sorry to hear your news. I have send you a PM.
Love and prayers,
Wanda
I am so sorry to hear your news. I have send you a PM.
Love and prayers,
Wanda
Help Support Valve Replacement Forums:
ctyguy
Well-known member
Dawn-Marie...
Im bummed to read your post. I don't have any wisdom to offer, only prayers and support. And as far as this site goes, your family. I don't have to say more than that I think.
Im bummed to read your post. I don't have any wisdom to offer, only prayers and support. And as far as this site goes, your family. I don't have to say more than that I think.
Dawn-Marie,
We need you here. You have so much to give to help others going through this journey. Please stay.
Love and prayers,
John
We need you here. You have so much to give to help others going through this journey. Please stay.
Love and prayers,
John
Dawn-Marie,
I just wanna give you a hug,and please your kitties
are telling you as i am here DON"T GIVE UP
We are your family as well you are ours,nothings gonna ever change
the warmth you have instilled in us,sending you this biggest,tightest
hug....here it goes catch it and and leaving the site....silly girl
we won't allow it and thats final!!!!We need you here.
So now thats settled,and god has a good plan for you with this
surgery,obviously the other plan wasnot accepted by his approval
not for us to know,but things happen for a good reason,like i'm
missing out on my beds for surgery,theres a reason why not today
We don't get answers right away so we continue our prayers and
patiently wait and see,....Did you catch that hug????? Theres
alot of love here in the posts and we care so much about you.
Zipper2 (DEB)
T
The English Patient
Hi Dawn-Marie
Reading your news is saddening and it must have come as a massive blow but don't give up on anything. Certainly not the support that is available on this site.
What a game it all is...just carry on doing your best.
Reading your news is saddening and it must have come as a massive blow but don't give up on anything. Certainly not the support that is available on this site.
What a game it all is...just carry on doing your best.
hensylee
Well-known member
Hi everyone ~ Sorry i've been gone for a few days...i was having computer prolems and they just got fixed yesterday when my friend's husband came during his lunch hour...he's a computer whiz and had the computer fixed in 45 minutes. Then i was so busy with various things (including a trip to the oral surgeon who decided not to pull my tooth).
I talked with one of the Percutaneous Aortic Valve study nurses around 1:15 today. I knew it wasn't good news when she started out with "take a deep breath". Apparently, nobody had really looked at everything that was sent to them closely because the doctors hadn't realized i have a bicuspid aortic valve, which automatically excludes me from the study. They can only do a transcatheter valve on a tricuspid aortic valve. So, to make a long story short, they said "sorry, we can't help you". Basically, they said i'll die as there is nothing to do to help me. So far i'm not dealing with this too good...i've sobbed so hard i have a MAJOR headache. I wanted to thank you all for your support...am i allowed to still come in here to say "Hi" and support other people even though i'm not having a valve replacement anymore? I'm not sure since this is a valve replacement site? Right now i think i'm going to go back outside and feed the birds...it helps to calm me down. I feed them so much that they know me)).
Thank you again for all your support!!
Dawn-Marie
I am so sad to hear this news. It is devastating and I don't know how you handle it, but please know that we are here, dear Friend - to talk, to visit, to do whatever you like - any time, any hour. Please don't leave us. You need us; we need you.
over eight years ago when I joined VR, I was trying to find out what had happened to me when I had quad bypass. It took me a long time to figure out I was an imposter in valve replacement since I never had a valve replacement. I volunteered to leave, but by that time, I was kinda implanted here and was told that I could/should stay and contribute - so there you have it, you are implanted, too. A real part of VR - so you have to stay now. No further discussion on that subject.
May God be with you during your time of need.
geckley
Well-known member
Dawn Marie
Please don't give up. With what is going on in science anything can happen almost overnight. Doctors told my Grandmother in 1984 if she didn't have OHS she wouldn't make it 6 months. She refused it and we just celebrated her 96th Bday. Like she says and my new motto is It's not the size of the dog in the fight. It's the size of the fight in the dog. Keep a positive attitude. You're in my thoughts keep the faith
Please don't give up. With what is going on in science anything can happen almost overnight. Doctors told my Grandmother in 1984 if she didn't have OHS she wouldn't make it 6 months. She refused it and we just celebrated her 96th Bday. Like she says and my new motto is It's not the size of the dog in the fight. It's the size of the fight in the dog. Keep a positive attitude. You're in my thoughts keep the faith
Dawn Marie, I am so sorry to read your latest news, but don't give up and please stay with us here on VR. The doctors don't know everything, they're not perfect, and I've read about a lot of so-called "hopeless" cases that turn out fine when people find the right doctor willing to help them. Keep your chin up and keep searching and asking for help. And, keep posting here because we're on your side.
Jim
Jim
D
Dawn-Marie
Hi to all my VR family ~ Thank you so much for all the words of encouragement and for saying i can stay here. I'm glad, as you truly have become family to me. Luckily, i've been busy today so i haven't been able to sit home and dwell on my problems. I had to go grocery shopping and stock up on things since i'll be staying home and not going into the hospital, and then i'm on the Board of Directors of our local Independent Living Center (an organization that is a referral agency for the disabled) and we had a 3 hour board meeting. Then, i fed the birds again. It's just sparrows that come here now, thank goodness. It used to be pigeons and they knew me so well that one day they followed me downtown and kept trying to land on my head, shoulders and feet...so embarrassing, like the "Home Alone" lady, lol!
Yes, it was a big blow when i talked with the Percutaneous Aortic Valve Study Nurse. Mostly because a couple weeks ago they had called me and told me they wanted me to come down for 3-4 days of tests and had got approval for me to stay in the hospital (rather than at a motel) and that they were sending papers for me to sign. But she did ask if i had had a TEE done and i told her yes and that it should be with Dr. Stewart, and they found it there. All i can think of is that once they reviewed the TEE they found i was ineligible. I had told them previously, from the start, that i had a bicuspid valve and i had read on the internet that that disqualified you, and they said then that was not necessarily true. Now they say it is...confusing! I did ask her if i would qualify for a minimally invasive aortic valve replacement, but she didn't think so. She said, like Dr. Strzalka in Erie had told me, that i would probably not get off the ventilator because of my high level of paralysis.
One ray of hope...Dr. Strzalka's surgical coordinator, Linda, e-mailed me around 3:30 PM today and said she had told Dr. Strzalka what had happened (i had called her since i knew Dr. Strzalka wanted me to keep him up to date on what transpired with Cleveland). She said Dr. Strzalka was going to contact Columbia-Presbyterian in NYC and see if they could offer me anything. He was also going to talk with the other doctors in his practice and see if they had any ideas. I called my cardiologist yesterday and told him what happened with Cleveland (he wanted to know too) and they had suggested i take medicine to strengthen my heart (which they said they could tell from the tests is working very hard to pump the blood through my aortic valve since it's almost closed). They said the best medicine for me to take would be an IV medicine that i had to have a port in my chest for, but my home health agency said it is such a strong medicine that needs careful monitoring that they would not authorize their nurses to do it. I didn't get on my computer and tie up my phone today in case the cardiologist called and left a message on my answering machine, but he hasn't called. I'm mostly hoping now that someone at Columbia-Presbyterian will be able to help me. I also told Linda that i also need to be sure that the wheelchair van will be paid for to go that far away...it's a 7 hour drive from here. I worry, too, that if i have complications from what they do what will happen since we're a small town with IDIOT doctors who would have no idea what to do. Good grief, when i had bone cancer my doctor told me for 8 months that my back pain was due to my having a desk job...no, it was a cancerous tumor the size of a watermelon. It didn't get diagnosed until i fell down in the parking lot where i worked and my right leg wouldn't move! The cardiologists here are not any better, sad to say. That's why i've got one in Erie..hopefully, he's better.
Thank you again for everything...it's wonderful to have so many people supporting me!! Tomorrow, everything should be back to normal and i can get back to supporting everyone else. At least i haven't sobbed for hours like i did last night! I think i was in major shock yesterday after i talked with the nurse, as i didn't expect her to say i didn't qualify.
See you all tomorrow,
Dawn-Marie
Yes, it was a big blow when i talked with the Percutaneous Aortic Valve Study Nurse. Mostly because a couple weeks ago they had called me and told me they wanted me to come down for 3-4 days of tests and had got approval for me to stay in the hospital (rather than at a motel) and that they were sending papers for me to sign. But she did ask if i had had a TEE done and i told her yes and that it should be with Dr. Stewart, and they found it there. All i can think of is that once they reviewed the TEE they found i was ineligible. I had told them previously, from the start, that i had a bicuspid valve and i had read on the internet that that disqualified you, and they said then that was not necessarily true. Now they say it is...confusing! I did ask her if i would qualify for a minimally invasive aortic valve replacement, but she didn't think so. She said, like Dr. Strzalka in Erie had told me, that i would probably not get off the ventilator because of my high level of paralysis.
One ray of hope...Dr. Strzalka's surgical coordinator, Linda, e-mailed me around 3:30 PM today and said she had told Dr. Strzalka what had happened (i had called her since i knew Dr. Strzalka wanted me to keep him up to date on what transpired with Cleveland). She said Dr. Strzalka was going to contact Columbia-Presbyterian in NYC and see if they could offer me anything. He was also going to talk with the other doctors in his practice and see if they had any ideas. I called my cardiologist yesterday and told him what happened with Cleveland (he wanted to know too) and they had suggested i take medicine to strengthen my heart (which they said they could tell from the tests is working very hard to pump the blood through my aortic valve since it's almost closed). They said the best medicine for me to take would be an IV medicine that i had to have a port in my chest for, but my home health agency said it is such a strong medicine that needs careful monitoring that they would not authorize their nurses to do it. I didn't get on my computer and tie up my phone today in case the cardiologist called and left a message on my answering machine, but he hasn't called. I'm mostly hoping now that someone at Columbia-Presbyterian will be able to help me. I also told Linda that i also need to be sure that the wheelchair van will be paid for to go that far away...it's a 7 hour drive from here. I worry, too, that if i have complications from what they do what will happen since we're a small town with IDIOT doctors who would have no idea what to do. Good grief, when i had bone cancer my doctor told me for 8 months that my back pain was due to my having a desk job...no, it was a cancerous tumor the size of a watermelon. It didn't get diagnosed until i fell down in the parking lot where i worked and my right leg wouldn't move! The cardiologists here are not any better, sad to say. That's why i've got one in Erie..hopefully, he's better.
Thank you again for everything...it's wonderful to have so many people supporting me!! Tomorrow, everything should be back to normal and i can get back to supporting everyone else. At least i haven't sobbed for hours like i did last night! I think i was in major shock yesterday after i talked with the nurse, as i didn't expect her to say i didn't qualify.
See you all tomorrow,
Dawn-Marie
Nancy
Well-known member
I like it VERY MUCH that your doctors are in your corner and are getting creative and even proactive with your situation. That speaks very well of them, and I don't say this lightly.
I think there will be some solution available for you, whether it is that IV medication, or a great surgeon with some gifted hands.
I'll say some prayers that they stay on top of things for you and that a miracle happens.
Never give up!!!
I think there will be some solution available for you, whether it is that IV medication, or a great surgeon with some gifted hands.
I'll say some prayers that they stay on top of things for you and that a miracle happens.
Never give up!!!
I truely believe Dawn that something will happen for you in a very positive way. Like someone else mentioned before me, things happen for a reason --reasons that we don't necessarily welcome nor understand.
You're doctors have NOT given up on you NOR should you. You must keep believing that something good & positive IS going to happen for you! Believe me, it's not for lack of prayers on this forum --- we're all rooting for you & waiting with you! Hang in there my friend!
Luv you!
You're doctors have NOT given up on you NOR should you. You must keep believing that something good & positive IS going to happen for you! Believe me, it's not for lack of prayers on this forum --- we're all rooting for you & waiting with you! Hang in there my friend!
Luv you!
kfay
Well-known member
Dawn-Marie,
Well, I think all in all, you got good news today. It seems like you have a good medical team behind you who are willing to do their best for you. Not everybody can say that. At the end of the day, I believe that things are going to work out for you. Stay strong.
Kim
Well, I think all in all, you got good news today. It seems like you have a good medical team behind you who are willing to do their best for you. Not everybody can say that. At the end of the day, I believe that things are going to work out for you. Stay strong.
Kim
pamela
Well-known member
Hello Dawn-Marie, I wrote this poem for my son... It's helped a few others besides him.
Rebirth
I looked at all that you have lost, and in truth I somehow
know this heart, yet beating, should bear no more pain.
Though sky and ocean seem to flood the distance, like rain,
my eyes see a shore beyond this sea of blood that now,
high mountains frame. I pray the washes of grace and love endow
sweet peace upon your heart and though long, may journey's blessed end,
greet you in warm acceptance. It's said wounds heal and bones mend.
Lie here with me and wait as the sun sets and daylight takes a bow.
Cry no more and dream your hopes anew, my friend, don't show
your future that shattered past, begin to live again. It's not one
door closes but another opens. With hope's light, bright as the sun,
dry those tears, breathe again in sweet anticipation. Grow
high as treetops on mountain slopes just as summer becomes snow.
Fly your wishes into dawn, let life take you, let the wind blow.
Rebirth
I looked at all that you have lost, and in truth I somehow
know this heart, yet beating, should bear no more pain.
Though sky and ocean seem to flood the distance, like rain,
my eyes see a shore beyond this sea of blood that now,
high mountains frame. I pray the washes of grace and love endow
sweet peace upon your heart and though long, may journey's blessed end,
greet you in warm acceptance. It's said wounds heal and bones mend.
Lie here with me and wait as the sun sets and daylight takes a bow.
Cry no more and dream your hopes anew, my friend, don't show
your future that shattered past, begin to live again. It's not one
door closes but another opens. With hope's light, bright as the sun,
dry those tears, breathe again in sweet anticipation. Grow
high as treetops on mountain slopes just as summer becomes snow.
Fly your wishes into dawn, let life take you, let the wind blow.
L
Leah
My only other thought, especially if Dr. Strzalka is willing to contact Columbia-Presbyterian, is whether you might be able to get a phone consult with a surgeon at Columbia-Presbyterian or CCF or both. Even though you're not eligible for the transcatheter study, can you at least get the thinking of the best person CCF or Columbia has - directly, not translated by the nurse - on your options and reality?
I don't want to suggest anything that might be a wild goose chase, but it would seem that getting a phone consult with an excellent surgeon who can help talk through your options would be valuable if you can arrange it. I have no feel for the nurse you're dealing with at CCF, but is this something you can broach with her as well? CCF does long-distance record reviews, entirely unrelated to the transcatheter study.
I don't want to suggest anything that might be a wild goose chase, but it would seem that getting a phone consult with an excellent surgeon who can help talk through your options would be valuable if you can arrange it. I have no feel for the nurse you're dealing with at CCF, but is this something you can broach with her as well? CCF does long-distance record reviews, entirely unrelated to the transcatheter study.
netmiff
Well-known member
DawnMarie:
I also was devastated when I heard your news from Cleveland. I did some digging around today on the internet because I know they are doing percutaneous valve replacements in Canada, too. I could find nothing concrete, but from what I have heard, Victoria BC (possibly St. Pauls Hospital?) and Ottawa (maybe Ottawa General) are both doing them. I don't know names of hospitals or anything, but I also have a feeling that Edmonton is doing some, too. That one would be the University of Alberta Hospital in Edmonton. I am not sure if they would do be able to do it as part of a study or be willing to waive their fees in your case - our health care system is totally different from yours. Anyway, it might be worth mentioning to the wonderful doctors that are already doing so much for you. And the nurse at Cleveland might have contact info. I don't think they are part of the same study, so they might have different rules. If I find anything out, I will let you know.
I also was devastated when I heard your news from Cleveland. I did some digging around today on the internet because I know they are doing percutaneous valve replacements in Canada, too. I could find nothing concrete, but from what I have heard, Victoria BC (possibly St. Pauls Hospital?) and Ottawa (maybe Ottawa General) are both doing them. I don't know names of hospitals or anything, but I also have a feeling that Edmonton is doing some, too. That one would be the University of Alberta Hospital in Edmonton. I am not sure if they would do be able to do it as part of a study or be willing to waive their fees in your case - our health care system is totally different from yours. Anyway, it might be worth mentioning to the wonderful doctors that are already doing so much for you. And the nurse at Cleveland might have contact info. I don't think they are part of the same study, so they might have different rules. If I find anything out, I will let you know.
BDMc
Well-known member
Dear Dawn Marie, I sure like your fighting spirit! Sounds like you are doing what you can to try to get more help. I hope you can find some competent heealthcare providers to help you in the fight. Wishing you the best, with love, Brian
Hi Dawn , I just wanted you to know that Columbia-Presb is a great
hospital; they are knowledgeable and humanitarian. If you are going
to check out other NYC hospitals, don't forget Mount Sinai hospital
and Maimonades Hospital (I had my VR done at Maimonades) and both
of these have been pioneers in OHS and have good cardiac teams.
You are in my thoughts and prayers-Dina
hospital; they are knowledgeable and humanitarian. If you are going
to check out other NYC hospitals, don't forget Mount Sinai hospital
and Maimonades Hospital (I had my VR done at Maimonades) and both
of these have been pioneers in OHS and have good cardiac teams.
You are in my thoughts and prayers-Dina
C
Curtsmum
Just sending hugs and prayers, all the best.
Dawn-Marie, I don't think the issue is shelved yet so stay alert and tuned in to what is happening. I agree with the opinion that it seems you have a very supportive medical team,. Regardless of the final outcom,e you certainly are welcome here...remember we are a family of sorts. May God bless you and give the cecision makers wisdom.
AquaJeff
Active member
I'm so sorry to hear about your situation. I am glad you and your doctors are looking at alternatives. Keep feeding the birds! We get such a kick out of them too. Good luck and God Bless.
