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METLove2008
LIF Adolescent
Member since 5/08 541 total posts
Name:
Ellie
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Re: Woman dies waiting for marrow transplant
Posted by Cacarina
That is so sad!!!
I will say though that I remember when they were on the news trying to get ppl to go out and get tested to see if you were a match. They were selling people saying, "It is no big to deal to get tested, it is quick and it doesn't hurt a bit." While the testing doesn't hurt and is no big deal, a bone marrow donation is a pretty big deal and is very painful. Maybe these people were not informed on what was involved if they were actually a match.
It is sad! Your totally right, they tell people it isn't a big deal. They say "just join the registry, it's painless". So, I think that's why there are a lot of donors that back out. If you've read about the whole process... it's scary. When someone that is pressured into joining the registry cause "it's no big deal" finds out that it is a really big deal... I can see why they'd back out.
The most common procedure these days is a PSBC donation:
For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
So, you have to go to the donation place everyday for 5 days to get injections. The injections make your bones hurt really really bad. Then for 2 days in a row, for about 5 hours at a time your 1 arm is hooked up to a machine that filters your blood and returns it to the other arm... so for 5 hours (each day) you can't move (not even to go to the bathroom) cause you have needles in both arms.
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
ETA: People don't realize it wouldn't just be a 1 day thing... it's at least 2 and depending on how much pain your in, you could end up having to take a whole week off of work or more. If they explained the whole process to these people who backed out, I bet they never would have signed up.
Message edited 11/9/2010 9:00:14 PM.
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Posted 11/9/10 8:48 PM  |
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Long Island Weddings
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eddiesmommy
best buds!
Member since 5/09 11524 total posts
Name:
Melissa
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Re: Woman dies waiting for marrow transplant
Posted by METLove2008
Posted by Cacarina
That is so sad!!!
I will say though that I remember when they were on the news trying to get ppl to go out and get tested to see if you were a match. They were selling people saying, "It is no big to deal to get tested, it is quick and it doesn't hurt a bit." While the testing doesn't hurt and is no big deal, a bone marrow donation is a pretty big deal and is very painful. Maybe these people were not informed on what was involved if they were actually a match.
It is sad! Your totally right, they tell people it isn't a big deal. They say "just join the registry, it's painless". So, I think that's why there are a lot of donors that back out. If you've read about the whole process... it's scary. When someone that is pressured into joining the registry cause "it's no big deal" finds out that it is a really big deal... I can see why they'd back out.
The most common procedure these days is a PSBC donation:
For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
So, you have to go to the donation place everyday for 5 days to get injections. The injections make your bones hurt really really bad. Then for 2 days in a row, for about 5 hours at a time your 1 arm is hooked up to a machine that filters your blood and returns it to the other arm... so for 5 hours (each day) you can't move (not even to go to the bathroom) cause you have needles in both arms.
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
ETA: People don't realize it wouldn't just be a 1 day thing... it's at least 2 and depending on how much pain your in, you could end up having to take a whole week off of work or more. If they explained the whole process to these people who backed out, I bet they never would have signed up.
IMO, small potatoes if you save someones life. I still think its disgraceful and be fully able to donate and then dont if you are found to be a match for someone.
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| Posted 11/9/10 10:27 PM |
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sunnyplus3
:)
Member since 11/05 8749 total posts
Name:
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Re: Woman dies waiting for marrow transplant
This lovely, sweet woman was my neighbor. The news cameras were on my block all day yesterday.
Her beautiful little girls are now without their mother. Her terrific husband is now without his wife.
She was much loved by all of the kids on our block and even as she became more ill, she would smile & wave at everyone.
I hope her story brings awareness to people that go to donor drives but then do not follow through.
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| Posted 11/9/10 10:34 PM |
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gina409
TWINS!
Member since 12/09 27635 total posts
Name:
g
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Re: Woman dies waiting for marrow transplant
Posted by eddiesmommy
I dont think you should put yourself into the registry unless you are willing to donate. Thats just awful.
I understand there are things that could prevent them from donating, but ALL 5, I doubt it.
thats what i was just going to say
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| Posted 11/9/10 10:55 PM |
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Re: Woman dies waiting for marrow transplant
Posted by KellyFG
This lovely, sweet woman was my neighbor. The news cameras were on my block all day yesterday.
Her beautiful little girls are now without their mother. Her terrific husband is now without his wife.
She was much loved by all of the kids on our block and even as she became more ill, she would smile & wave at everyone.
I hope her story brings awareness to people that go to donor drives but then do not follow through.
I am so sorry for the loss of your friend. This is so upsetting. I don't think I could ever live with the fact that I "backed out" of something as crucial as this. I could not live with myself knowing there are 2 young girls who have to go on with out there mother by their side.
I hope that when everyone was backing out they recontacting them hoping they had a change of heart. Yeah...some heart. So sad.
Shame on those people.
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| Posted 11/9/10 11:11 PM |
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sweetie101
you make me smile :o)
Member since 5/08 4419 total posts
Name:
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Re: Woman dies waiting for marrow transplant
thats so sad.
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| Posted 11/9/10 11:25 PM |
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METLove2008
LIF Adolescent
Member since 5/08 541 total posts
Name:
Ellie
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Re: Woman dies waiting for marrow transplant
Posted by eddiesmommy
Posted by METLove2008
Posted by Cacarina
That is so sad!!!
I will say though that I remember when they were on the news trying to get ppl to go out and get tested to see if you were a match. They were selling people saying, "It is no big to deal to get tested, it is quick and it doesn't hurt a bit." While the testing doesn't hurt and is no big deal, a bone marrow donation is a pretty big deal and is very painful. Maybe these people were not informed on what was involved if they were actually a match.
It is sad! Your totally right, they tell people it isn't a big deal. They say "just join the registry, it's painless". So, I think that's why there are a lot of donors that back out. If you've read about the whole process... it's scary. When someone that is pressured into joining the registry cause "it's no big deal" finds out that it is a really big deal... I can see why they'd back out.
The most common procedure these days is a PSBC donation:
For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
So, you have to go to the donation place everyday for 5 days to get injections. The injections make your bones hurt really really bad. Then for 2 days in a row, for about 5 hours at a time your 1 arm is hooked up to a machine that filters your blood and returns it to the other arm... so for 5 hours (each day) you can't move (not even to go to the bathroom) cause you have needles in both arms.
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
ETA: People don't realize it wouldn't just be a 1 day thing... it's at least 2 and depending on how much pain your in, you could end up having to take a whole week off of work or more. If they explained the whole process to these people who backed out, I bet they never would have signed up.
IMO, small potatoes if you save someones life. I still think its disgraceful and be fully able to donate and then dont if you are found to be a match for someone.
I feel the same way... which is why I am on the registry. My point was that if people were informed of everything before signing up, they probably wouldn't have registered at all. Which means less time and resources wasted on people that back out. For me, saving a life would be worth it, but once the whole process is explained in detail... a lot of people do back out and that could be avoided.
It's not right that people back out... but if the registry wasn't so vague and gave people all the details... it wouldn't happen nearly as often.
Message edited 11/9/2010 11:33:05 PM.
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| Posted 11/9/10 11:27 PM |
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sleepie76
enjoying every minute
Member since 12/07 3881 total posts
Name:
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Re: Woman dies waiting for marrow transplant
I cant imagine being one of those people that said no and now see on the news that she died.
My brother did bone marrow testing when his gf had leukemia. He wasn't a match but received a call he was a match for a mother in her 50's of 3 girls.
He went and donated.
He said, " how can I say no?"
He did say it was pretty painful.
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| Posted 11/10/10 6:57 AM |
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Re: Woman dies waiting for marrow transplant
Posted by sleepie76
I cant imagine being one of those people that said no and now see on the news that she died.
My brother did bone marrow testing when his gf had leukemia. He wasn't a match but received a call he was a match for a mother in her 50's of 3 girls.
He went and donated.
He said, " how can I say no?"
He did say it was pretty painful.
 to your brother!!!
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| Posted 11/10/10 6:59 AM |
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dpli
Daylight savings :)
Member since 5/05 13973 total posts
Name:
D
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Re: Woman dies waiting for marrow transplant
Posted by METLove2008
It is sad! Your totally right, they tell people it isn't a big deal. They say "just join the registry, it's painless". So, I think that's why there are a lot of donors that back out. If you've read about the whole process... it's scary. When someone that is pressured into joining the registry cause "it's no big deal" finds out that it is a really big deal... I can see why they'd back out.
The most common procedure these days is a PSBC donation:
For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
So, you have to go to the donation place everyday for 5 days to get injections. The injections make your bones hurt really really bad. Then for 2 days in a row, for about 5 hours at a time your 1 arm is hooked up to a machine that filters your blood and returns it to the other arm... so for 5 hours (each day) you can't move (not even to go to the bathroom) cause you have needles in both arms.
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
ETA: People don't realize it wouldn't just be a 1 day thing... it's at least 2 and depending on how much pain your in, you could end up having to take a whole week off of work or more. If they explained the whole process to these people who backed out, I bet they never would have signed up.
I just went through this with a loved one. It is a big deal and if they are telling people it's easy and painless, they aren't correctly representing the facts.
What you have written is a pretty accurate representation of a stem cell transplant using stem cells from the blood, but I also saw them take a sample from the hipbone in the doctor's office. To be honest, I would rather them take the sample from my hipbone. It is painful, but it's a fairly quick procedure and the pain following days is more of a soreness.
We were told that the reason they use the stem cells from the blood is that recent studies have shown those transplants to have better long term results.
The drugs have lots of side effects, and as I said before, I would never say it isn't a big deal. Having said all of that, I am thinking about registering myself because I know that it can save someone's life. As others have said, though, I would never register if I weren't 100% prepared to go through with the donation.
Kelly, I am very sorry for your loss. 
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| Posted 11/10/10 10:06 AM |
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NoStressMom
My Heart and Soul
Member since 5/05 11122 total posts
Name:
D
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Re: Woman dies waiting for marrow transplant
Posted by KellyFG
This lovely, sweet woman was my neighbor. The news cameras were on my block all day yesterday.
Her beautiful little girls are now without their mother. Her terrific husband is now without his wife.
She was much loved by all of the kids on our block and even as she became more ill, she would smile & wave at everyone.
I hope her story brings awareness to people that go to donor drives but then do not follow through.
so sad a good friend of mine her daughter is really good friend with this womans girls it is heartbreaking I kept reading my girlfriend FB page for updates!! Really sad!!
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| Posted 11/10/10 10:27 AM |
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NoStressMom
My Heart and Soul
Member since 5/05 11122 total posts
Name:
D
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Re: Woman dies waiting for marrow transplant
Just a heads up this story will be on CNN tonight the husband is speaking about this 10pm
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| Posted 11/12/10 9:40 AM |
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DWKS810
LIF Adolescent
Member since 3/09 554 total posts
Name:
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Re: Woman dies waiting for marrow transplant
Posted by METLove2008
Posted by Cacarina
That is so sad!!!
I will say though that I remember when they were on the news trying to get ppl to go out and get tested to see if you were a match. They were selling people saying, "It is no big to deal to get tested, it is quick and it doesn't hurt a bit." While the testing doesn't hurt and is no big deal, a bone marrow donation is a pretty big deal and is very painful. Maybe these people were not informed on what was involved if they were actually a match.
It is sad! Your totally right, they tell people it isn't a big deal. They say "just join the registry, it's painless". So, I think that's why there are a lot of donors that back out. If you've read about the whole process... it's scary. When someone that is pressured into joining the registry cause "it's no big deal" finds out that it is a really big deal... I can see why they'd back out.
The most common procedure these days is a PSBC donation:
For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
So, you have to go to the donation place everyday for 5 days to get injections. The injections make your bones hurt really really bad. Then for 2 days in a row, for about 5 hours at a time your 1 arm is hooked up to a machine that filters your blood and returns it to the other arm... so for 5 hours (each day) you can't move (not even to go to the bathroom) cause you have needles in both arms.
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
ETA: People don't realize it wouldn't just be a 1 day thing... it's at least 2 and depending on how much pain your in, you could end up having to take a whole week off of work or more. If they explained the whole process to these people who backed out, I bet they never would have signed up.
There are a couple of inaccuracies in here. My father donated stem cells when he came up as a match for an older woman who needed bone marrow. Yes, it's a bigger commitment than people think. Yes, it can be painful. It hurts some when the bones are overproducing marrow after you get the injections, and you get the injections in the stomach generally (at least he did). He said it wasn't terrible though. But the organization really does whatever they can to minimize the inconvenience on the donor. For instance, a nurse from the blood center came to my father's home or work every day to administer the injections and do all of the pre-care. He really only had to go to do the donation at the center and the initial visit there. Just wanted to clarify in case someone might be considering donating stem cells in this way so they're not scared off by what's involved. I *think* there are laws that protect your job if you need to miss time due to making a donation like this as well, but I don't remember specifically.
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| Posted 11/13/10 10:07 AM |
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Goobster
:)
Member since 5/07 27557 total posts
Name:
:)
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Re: Woman dies waiting for marrow transplant
OMG, that's awful. That poor woman. But in the end, donating marrow still is a personal choice and you never know what the reasons are that someone might decide it's not for them. So sad.
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| Posted 11/13/10 11:29 AM |
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Goobster
:)
Member since 5/07 27557 total posts
Name:
:)
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Re: Woman dies waiting for marrow transplant
Posted by METLove2008
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
.
Well said. It is NOT the same as donating blood. Not at all. I can imagine it would be scary for many people.
Message edited 11/13/2010 11:32:16 AM.
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| Posted 11/13/10 11:31 AM |
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iamme
LIF Toddler
Member since 6/10 495 total posts
Name:
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Re: Woman dies waiting for marrow transplant
i am already an organ donor, (living donor liver transplant for my son) but i don't think i am on the registry in question. can someone please tell me how i join it? i really want to be available to help in any way i can. being that i have already gone through crazy testing for donation before, i would gladly do it again. especially for bone marrow. can anyone direct me to a website or phone number where i can sign up?
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| Posted 11/13/10 12:48 PM |
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LoriH
There's no place like home
Member since 8/07 4110 total posts
Name:
Lori
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Re: Woman dies waiting for marrow transplant
Posted by iamme
i am already an organ donor, (living donor liver transplant for my son) but i don't think i am on the registry in question. can someone please tell me how i join it? i really want to be available to help in any way i can. being that i have already gone through crazy testing for donation before, i would gladly do it again. especially for bone marrow. can anyone direct me to a website or phone number where i can sign up?
This is the foundation that ran the drive I joined at.
Icla Da Silva
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| Posted 11/13/10 2:38 PM |
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PrincessP
Big sister!!!!!!!!!!
Member since 12/05 17450 total posts
Name:
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Re: Woman dies waiting for marrow transplant
Posted by Goobster
Posted by METLove2008
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
.
Well said. It is NOT the same as donating blood. Not at all. I can imagine it would be scary for many people.
ITA!!!
All can agree to judge these people that "backed out" but the lack of info provided is evident. I am sure not everyone on LIF knows what a bone marrow test entails including myself.
I dont think these people went into this with a bad heart. Who does that? So shouldnt more of the people on here judging these people look at the fact that they even stepped up to the plate to possibly do such a heroic thing? I mean if you are judging then you were on the list to be a donor, right? You dont know others circumstances. I imagine they have valid reasons that it fell through that we dont know of. I am not for the "if you arent going to follow through dont put yourself out there". Thats just lazy in itself.
Message edited 11/13/2010 5:05:48 PM.
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| Posted 11/13/10 5:03 PM |
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METLove2008
LIF Adolescent
Member since 5/08 541 total posts
Name:
Ellie
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Re: Woman dies waiting for marrow transplant
Posted by DWKS810
Posted by METLove2008
Posted by Cacarina
That is so sad!!!
I will say though that I remember when they were on the news trying to get ppl to go out and get tested to see if you were a match. They were selling people saying, "It is no big to deal to get tested, it is quick and it doesn't hurt a bit." While the testing doesn't hurt and is no big deal, a bone marrow donation is a pretty big deal and is very painful. Maybe these people were not informed on what was involved if they were actually a match.
It is sad! Your totally right, they tell people it isn't a big deal. They say "just join the registry, it's painless". So, I think that's why there are a lot of donors that back out. If you've read about the whole process... it's scary. When someone that is pressured into joining the registry cause "it's no big deal" finds out that it is a really big deal... I can see why they'd back out.
The most common procedure these days is a PSBC donation:
For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
So, you have to go to the donation place everyday for 5 days to get injections. The injections make your bones hurt really really bad. Then for 2 days in a row, for about 5 hours at a time your 1 arm is hooked up to a machine that filters your blood and returns it to the other arm... so for 5 hours (each day) you can't move (not even to go to the bathroom) cause you have needles in both arms.
I'm not saying it's right for people to back out... I'm saying it's wrong for them to tell people it's no big deal to join the registry.
ETA: People don't realize it wouldn't just be a 1 day thing... it's at least 2 and depending on how much pain your in, you could end up having to take a whole week off of work or more. If they explained the whole process to these people who backed out, I bet they never would have signed up.
There are a couple of inaccuracies in here. My father donated stem cells when he came up as a match for an older woman who needed bone marrow. Yes, it's a bigger commitment than people think. Yes, it can be painful. It hurts some when the bones are overproducing marrow after you get the injections, and you get the injections in the stomach generally (at least he did). He said it wasn't terrible though. But the organization really does whatever they can to minimize the inconvenience on the donor. For instance, a nurse from the blood center came to my father's home or work every day to administer the injections and do all of the pre-care. He really only had to go to do the donation at the center and the initial visit there. Just wanted to clarify in case someone might be considering donating stem cells in this way so they're not scared off by what's involved. I *think* there are laws that protect your job if you need to miss time due to making a donation like this as well, but I don't remember specifically.
I don't think what I said was inaccurate at all. Everyone's experience is different and a good friend of mine was in a lot of pain and missed more then a few days of work because of it. I never said people at the donor center were terrible. They were very nice, every step of the way, but she did have to drive there everyday.
I think anyone dedicated to saving someones life wouldn't be scared off by what I say. I just think people should know exactly what to expect before signing up. If this scares someone out of signing up... then they probably would have backed out when the donor center contacts them and explains it all in more detail. In any case, I think saving someones life is well worth it.
ETA: Here's the site I used to sign up:
Be The Match
Message edited 11/13/2010 7:21:48 PM.
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| Posted 11/13/10 7:19 PM |
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