posted on May 30, 2001 07:15:48 PM new
nettak and bela, I can only imagine what you must both be going through. My family knows that I want everything usable donated when I die. I like the idea of doing one last good deed on the way out.
posted on May 30, 2001 08:37:59 PM new
Velma and nettak, my prayers are with you both. People need to hear these stories, to understand the importance of donation. This is a subject I have 'preached' to my students every year.
Something was said earier about the donor being in good health. That's true. But it's also true that tissue and organs are used for research, regardless of the health of the deceased. One of our teachers died of a brain tumor compounded by breast cancer. Her body was donated to Texas Tech Medical School. These bodies are used in their teaching hospital. I can remember when I was working on my paramedic liscense being concerned that I might get her body in my gross anatomy class-and then realized that it would probably have pleased her to know that she was still teaching!
posted on May 30, 2001 09:11:04 PM new
I see several sides.
It seems harsh to put a dollar value on life but the reality is that medical technology has gotten to a stage where you have to consider the benefit level before automatically treating. No doctor is going to
spend millions of dollars for multiple exotic treatments to an a very old patient who has a very low quality of life already and has little chance of recovery. Say a bed ridden nursing home patient of 90 who has cancer and needs a multiple transplant. There comes a point it is not reasonable.
It is expecting a lot to ask a person living in poverty to give away the one thing of value they have for altruistic motives. That is really no boost to human dignity.
On the other hand when the organ becomes a commodity how do you screen out the person who may carry a virus and won't tell because they want the sale?
You already have the possibility of people being pressured by family or at work to sign up as a donor who don't want to reveal they could be HIV positive or have hepititus.
Studies have shown that doctors work longer and try harder to save people in an emergency situation who are attractive in appearance.
It is a real concern of mine that if I am laying on the table dying I may not get that last try at defib. or shot to try to save me if the doctor is looking at my ugly face and in the back of his mind he knows he has a big sack of spare parts here the hospital needs and the longer he works on me the less usable they are.
posted on May 30, 2001 09:41:06 PM new
I do not pretend that I know how things work in America, but I think Gravid that you will find that there is a cut off age for transplantation, I know there is here in Australia, and at 90 you would not be in the running for a donor organ. Sad as the facts are, it is usually not viable to give a healthy organ to someone of that age.
Now as for the study on attractive people getting more attention and doctors' working longer and harder to save them in an emergency situation, I am not sure about that at all.
I am not a doctor or a nurse, but over the last 18 years I sure have spent a heck of a lot of time in hospitals' with doctors' and nurses' and I do believe that they give the same level of care to everyone. These people train for a lot of years to become medical professionals and I just would never believe for a minute that if I was taken into a hospital and there was a young pretty 20year old taken in next to me, that they would care for the young pretty 20Y.O. any better than they would care for me.
The other issue that was brought up is how do they know if an organ is diseased by HIV or Hepititus and the likes. Well tissue is screened and tested, the days of untested blood and organs being donated are gone, everything gets screened these days.
posted on May 30, 2001 09:52:49 PM new
Hello, Bela 143
Yes, you have definately found the right place here. I doubt you will find a more caring group of people anywhere.
I do not know where you are but I am near Pittsburgh, which is tops in organ transplantation. I recently talked to a friend of mine who is a recipient. She said along with the coal miners and sales clerks princes and politicians await their turn on the list.
Your husband is very young to be in this predicament. I will add him to my prayers - in the meantime please take care of yourself. He needs you to stay healthy to take care of him.
Please vent as much as you need. We will listen. And even try to help. If you want a little boost, read my last thread. It might help you in your time of need.
My thoughts are with you and your family. Take care
posted on May 31, 2001 03:22:00 PM new
HI GRAVID,
I DO UNDERSTAND WHAT YOU ARE SAYING. MY MOTHER LIVES WITH US ALSO, SHE
IS
90, HER QUALITY OF LIFE IS VERY LITTLE, AND I AM SURE WHAT YOU SAY IS
TRUE,
SHE ALSO HAS HEART FAILURE, I KNOW IN MY HEART NO MATTER WHAT I WOULD
WANT
IT WOULD NOT BE UP TO ME, ON THE OTHER HAND MY HUSBAND IS ONLY 56, AND
HAS
WORKED VERY HARD ALL OF HIS LIFE. HE WAS NEVER SEDENTARY, I THINK THERE
IS
NO PROBLEM TO RECEIVE THE TRANSPLANT, JUST NOT ENOUGH . THE MATCH HAS
TO BE
SO CLOSE AND AT THIS POINT I JUST WANT HIM TO GET HEALTHY AGAIN, HAVE A
FEW
MORE YEARS. I MUST ADMIT MY VIEWS ON A LOT OF THINGS HAVE CHANGED
DRASTICALLY, WE MUST REMEMBER WE ARE NOT INVINCIBLE, I AM A CANCER
SURVIVOR
AND I KNEW MY LIFE WAS INTENDED FOR SOMETHING MORE, I THINK I KNOW
NOW...
THANKS TO ALL YOU GUYS,
THIS IS A GREAT RELEASE,
KINDEST REGARDS,
VELMA
posted on May 31, 2001 05:47:23 PM new
HI GRAVID,
I DO UNDERSTAND WHAT YOU ARE SAYING. MY MOTHER LIVES WITH US ALSO, SHE
IS
90, HER QUALITY OF LIFE IS VERY LITTLE, AND I AM SURE WHAT YOU SAY IS
TRUE,
SHE ALSO HAS HEART FAILURE, I KNOW IN MY HEART NO MATTER WHAT I WOULD
WANT
IT WOULD NOT BE UP TO ME, ON THE OTHER HAND MY HUSBAND IS ONLY 56, AND
HAS
WORKED VERY HARD ALL OF HIS LIFE. HE WAS NEVER SEDENTARY, I THINK THERE
IS
NO PROBLEM TO RECEIVE THE TRANSPLANT, JUST NOT ENOUGH . THE MATCH HAS
TO BE
SO CLOSE AND AT THIS POINT I JUST WANT HIM TO GET HEALTHY AGAIN, HAVE A
FEW
MORE YEARS. I MUST ADMIT MY VIEWS ON A LOT OF THINGS HAVE CHANGED
DRASTICALLY, WE MUST REMEMBER WE ARE NOT INVINCIBLE, I AM A CANCER
SURVIVOR
AND I KNEW MY LIFE WAS INTENDED FOR SOMETHING MORE, I THINK I KNOW
NOW...
THANKS TO ALL YOU GUYS,
THIS IS A GREAT RELEASE,
KINDEST REGARDS,
VELMA
posted on May 31, 2001 05:50:11 PM new
HI NETTAK,
THANK YOU SO MUCH, I AM AFRAID THIS IS GOING TO BE SO TUFF. MY HUSBAND
DOESN'T WANT TO ACCEPT IT, THE DR TOLD HIM TO PUT HIS DUCKS IN A ROW,
AND HE
IS NOT READY.. IT IS SO NEW TO US WE HAVEN'T FOUND SUPPORT YET BUT WILL
AS
SOON TIME PERMITS. HE IS ON A DRUG STUDY FOR THE NEXT 8 MONTHS THAT IS
NOT
FDA APPROVED AS YET. HE HAS TO GO TO THE DR EVERY WEEK. HE IS STILL
TRYING
TO WORK BUT I DON'T SEE THAT FOR TO LONG. EVEN WITH THE MEDS HIS BLOOD
PRESSURE IS STILL SOARING.
IT REALLY HELPS TO KNOW I WENT TO THE RIGHT PLACE AND I HAVE YOUR
SUPPORT. I
HAVE AN EXTENDED FAMILY AND IT IS REALLY TUFF TRYING TO BALANCE
EVERYTHING.
THANK YOU FOR CARING, I WILL KEEP YOU POSTED ON OUR OUT COME. WE SEE
HIS DR
NEXT WEEK & I WILL ASK HIM ABOUT THE FAMILY SUPPORT.
WITH KINDEST REGARDS,
VELMA AKA BELA143
posted on May 31, 2001 05:55:16 PM new
HELLO BEARMOM,
THANK YOU SO MUCH FOR YOUR KIND WORDS AND PRAYERS. I AGREE 100%+, I AM
HAPPY
TO KNOW THAT NO MATTER HOW SMALL OR BIG, I WILL BE OF SOME USE TO
SOMEONE,
THAT MAKES ME HAPPY TO CONTINUE ON IN THIS LIFE. MY GRAND DAUGHTER IS
THE
ONE THAT TALKED MY HUSBAND & MYSELF INTO BEING A DONOR, SHE IS ALSO A
DONOR.
SMART GIRL, I HAVE A LOT OF PEACE KNOWING I WILL DO GOOD IN MY FINAL
STATE .
THANKS GUYS, YOU ARE THE GREATEST..
WITH KIND REGARDS,
VELMA
posted on May 31, 2001 05:59:03 PM new
HI DECEMBER,
I APPRECIATE YOUR COMFORT, I FEEL THE SAME WAY, THE BODY IS OF NO USE TO
ME
AFTER I AM GONE, EXCEPT TO MAYBE HELP THE LIVING IN SOME WAY.
WITH KINDEST REGARDS,
VELMA AKA BELA143
posted on May 31, 2001 06:04:43 PM new
SO SORRY TO MAKE SO MANY MISTAKES, I APOLOGIZE, I AM LEARNING, PLEASE BEAR WITH ME, I AM TRYING REAL HARD.
I APPRECIATE ALL OF YOU GUYS, YOU ARE THE GREATEST..
THANKS SO MUCH,
WITH WARMEST REGARDS,
VELMA AKA BELA143
posted on May 31, 2001 06:45:42 PM new
Hi Bela 143 - I am glad you understand I was speaking in generalities. I sure understand your husband is a younger person who has a lot of living to do yet if he can get his problems solved. I am 53 myself. That is marvelous he has been trying to work as long as he can because that tells me he is a fighter. A lot of healing and recovery is effected by your will to live. It would be great if this experimental drug helps. If you take the all caps off it will make it easier for us to read. Thanks ....
posted on May 31, 2001 09:48:57 PM new
Thank you Gravid, I feel we can get through this situation, it is just thet it was thrown at us so fast, hard to understand what will really happen. yes he loves to work but I can see he is a little slower and has to sit. He works offshore as a superintendent but they won't take a chance now, and he can't stand being in the yard. Maybe something will happen soon and he will be his old self again. I am praying for that for he is my ROCK!!!!
Thanks for answering, I have really been down today, the first time since we found out. you ALL DO help...
THANKS GUYS,
sTAY WELL,
posted on June 1, 2001 12:46:50 AM new
Hi Velma, your typing is going great guns and don't stress over any mistakes because we all make them, and those you say they don't are telling you great big whoopers. LOL
I think you are going to have to be the strength in this partnership for the time being and that my be hard to start with if your husband has always been a strong person. Men are such babies when it comes to accepting reality about there own health. What your husband is going through is a very traumatic time for him and I know it is for you as well, in some ways it is probably worse for you because you have to be the leaning post all the way down the track. You will be the one he takes his anger out on, you will be the one he will want to confide his fears in, and you will still have to hold everything in the normal position for him at home. I think the sooner you can get into some sort of support group the better for your own peace of mind. But until then or even after you find a support group, we will give you whatever support we can. There are a lot of lovely people here on this board and some people with medical knowledge you could ask for advice if you are unsure about anything.
We will all be wishing you and your husband the very best of everything.
posted on June 2, 2001 03:16:26 PM new
Something needs to be done about transplants because the system we use doesn't work.
Anyone who thinks that we have a "fair" waitlist system is wrong.
Ever notice how quickly celebrities move to the top of the list for transplants and adoptions ?
Doctors and hospitals know that they will get publicity if they cater to the celebs.
So who gets the liver or heart - the nobody or the celeb that will get you $1,000,000 of free publicity ?
I can think of 2 rock stars that got transplant livers after intentionally destroying their own, and they got them quickly. Everyone swore that they didn't get special waitlist treatment, but nothing supports that conclusion.
Selling organs will yeild the same results.
I believe the state of Texas considered making it a presumption that organs were to be donated, and you must opt out of donation on your drivers license.
posted on June 2, 2001 03:40:05 PM new
HI REAMOND,
YOU KNOW I AGREE WHOLE HEARTED. YOU NEVER THINK OF THESE THINGS UNTIL THEY HIT HARD. I ALSO THINK IT IS NOT A FAIR PRACTICE, AND I CAN'T FEEL THAT IT WILL BE ANY TIME SOON. KNOWING MY HUSBAND NEEDS A HEART IS SO HARD, YOU KNOW IT HAS TO COME FROM SOMEONE AND YOU HATE TO THINK OF IT , BUT I WOULD ONLY PRAY MORE WOULD THINK OF DOING THIS, WE HAVE COME A LONG WAY WITH THIS PROCEDURE AND ISN'T IT WONDERFUL YOU GO ON LIVING WITH SOMEONE, AND YOUR LOVED ONES WILL KNOW YOU ARE STILL LIVING. I THINK THAT IS GREAT, ALTHOUGH I KNOW IT IS NOT FOR EVERYONE, THINK ABOUT IT. THE MORE PEOPLE THAT SIGN TO BE A DONOR THE MORE FAIR IT WILL BE, AND LESS OF A WAITING LIST. MY HUSBAND MAY NOT MAKE IT TIL THEN.. AS FOR MONEY, WE HAVE NONE, SO YOU KNOW WHERE THAT WILL PUT US.. GOD HELP US..
THANKS FOR LISTENING,
GOD BLESS MY FRIEND,
VELMA
posted on June 2, 2001 03:47:45 PM new
Actually there is no evidence that either John Phillips or David Crosby received a liver any more quickly than anyone else with their degree of illness, their HLA factors and their blood type within their region would have.n The "waiting" list as such does not exist. There are many factors that enter into who gets the limited number of transplantable cadaver organs...and ability to pay for immunosuppressive meds post-op, the ability to follow the difficult medical regimen, other medical conditions, the size and age of the donor and the recipient are also factors.
So one never knows their position on "the list"...there are far too many variables. I know of one female that received a kidney less than a week after she was approved...she had Medicaid for an insurance. I know people who have great insurance or large amounts of money that were not approved for transplants or who died before they received them.
Ideally everyone could get an organ as soon as they needed one...but reality does enter in. There is merely one way that is fairly uniform of determining who gets the limited organs available. Currently the Dept of health and human services is attempting to change the guidelines for prioritizing, but it will also mean that some are left out...there simply is not enough resources.
KRS brought up a couple of extremely interesting points...
1.) Why shouldn't the donor family receive a stripend to help with burial costs?
At least one region in Pennsylvania is giving this a shot for a year. I think it is $300, so certainly no large amount. Overall, the biggest problem with this is it will add cost to an already very expensive procedure. There are limited funds for healthcare...it will mean more hard choices about who gets what is available.
2.) It is now possible for living donor hepatic (liver) transplants for adults as well as children. The liver repairs it self allowing for this procedure.
posted on June 2, 2001 04:16:37 PM new
Here are a few online sources for articles regarding human organ transplantation within the USA. There are many such sites...
posted on June 2, 2001 04:59:30 PM new
If memory serves me, didn't "Sweet" Walter Payton die while awaiting a liver transplant?
Don't you think that he, or at least his moneyed friends and admirers (many are celebrities themselves), would have bought him a fighting chance if all it took was to fork over some money?
It made me ill to learn of his death when I can only imagine how many healthy livers were placed in a casket or cremated.
It always makes me ill to think how many people on wait lists pass away waiting for the ultimate gift one human being can give to another human being.
Don't think me judgmental. We all do what we have to do. But, it's good that we discuss this on occasion.
If you are currently opposed to becoming a donor, for whatever reason, at least give it some thought and really listen (read) what Bela, Nettak,Granny Fox and others are sharing with you.
"Minds are like parachutes...They only function when open" (Author unknown to me).
posted on June 2, 2001 06:13:41 PM new
You make some good points femme. For those who don't agree with organ transplants, could you tell me how you came to thinking that? No judgement; I'm just curious about your thoughts.
bela143 - you are a lot stronger than you can ever imagine. I think nettak said it best.
posted on June 6, 2001 04:41:48 PM new
This thread is getting fairly long but I thought I would respond because:
I had a double transplant from a non-living donor. Even thought the donor had wanted to be a donor his family still had to give concent so make sure if you are a donor that your family knows that this is what you want.
I am not sure where I stand on someone selling their organs. I think in someways I agree and in others I DO NOT.
I am so glad that I had a transplant on February 22, 1999. If anyone is facing a transplant or wants to email me they can just click to the left on my name to get my email address.
posted on June 7, 2001 12:03:05 AM new
I just wanted to add a litle something concerning a recent experience about organ donation. My father passed away last week and while he'd been ill for a long time and on many drugs, they were still able to use his corneas. They couldn't use anything else, but we were happy to hear he may be able to help someone. So even though someone may be very ill, they can still be an organ donor. And yes, make sure your family knows because they will ask the family if it's ok as well as a lot of personal questions about the donor (illness, meds, past history, drug use, sex, etc.)
Good luck bela, and my thoughts are with you and your family.
posted on June 7, 2001 07:02:59 AM new
Good on your family Mouse I know it was hard for you, losing your dad but now your family has given a wonderful gift to someone, could be the gift of sight or at least partial sight.
Velma how are you and your husband doing? I am thinking of you.
Sweetstuff, it is wonderful to hear about your transplant and know you are doing so well after it.
Yes you are very right about the family having to give consent before the donor harvesting can begin. This is the reason that everyone should make there feelings very clear to there loved ones. If you die suddenly and it shows on your records that you wish to donate your organs that is one thing, but your family can override this decision and say no.
If you have spoken to them and let then know that your wishes are for your viable organs to be donated at least they have been forwarned and it is not such a big shock when the time comes.
This is such an important issue and you know none of us ever knows just how important an issue it is until we or a loved one may need a transplant. That is when it truly hits home in a big way.
posted on June 7, 2001 07:14:43 AM new
GOOD MORNING NETTAK,
THANK YOU FOR ASKING, HE IS NOT ANY STRONGER BUT HOLDING ON. TRYING TO WORK ON LIGHT DUTY BUT APPOINTMENTS DOESN'T ALLOW MUCH WORK, THAT IS BAD FOR HIM SINCE HE WANTS TO WORK.
THANK YOU FOR THINKING OF US, MAKES ME FEEL SO GOOD TO KNOW THAT.
GOD BLESS,
KINDEST REGARDS,
VELMA
posted on June 7, 2001 07:24:07 AM new
THANK YOU MOUSESLAYER,
I AM SO HAPPY TO HEAR YOUR KIND WORDS, IT IS GOING TO GET A LOT TOUGHER I AM AFRAID I NEED ALL THE STRENGTH I CAN MUSTER UP FROM EVERYONE. GOD BLESS YOUR LOVED ONE. YOU ARE SO RIGHT..
GOD BLESS,
WITH KIND REGARDS,
VELMA
The wait is difficult as is adjusting to all of the changes. Does your husband (and you) have a hobby that you enjoy and can fit in around the trips to doctors, labs and etc.?
MouseSlayer...great point! I cannot donate some of my organs, but others I can. In addition I can donate skin, bone, and corneas (but sincerely hope it is not for awhile).
posted on June 7, 2001 08:15:34 AM new
GOOD MORNING BITTYBUG,
ACTUALLY NO WE DON'T HAVE HOBBIES, SINCE OUR LIFE IS FILLED WITH DEPENDENTS. WE HAVE A LARGE POOL AND TAKE THE LITTLE ONES IN FOR SOME STRESS RELIEF. MY HUSBAND IS TO TIRED TO DO MUCH ACTIVITIES. THE 4Y BOY IS LEARNING TO SING ELVIS & COUNTRY MUSIC, HE IS BECOMING QUITE THE ENTERTAINER. HE SINGS AT FESTIVALS & KAREOKE CAFES, WE TAPE HIM SO HIS GR GRANDPA CAN FOLLOW HIM WITHOUT GOING OUT. HE LOVES WATCHING HIM.
I LOVE THE FACT THAT WHEN I GO SOMETHING OF MINE CAN BE OF GREAT HELP FOR SOMEONE ELSE.
THANK YOU FOR THINKING OF US, WE ARE JUST WAITING FOR THE NEXT STEP, ONE DAY AT A TIME..
BLESSINGS & KIND REGARDS,
VELMA
Taking life one day at a time and savoring every second is what will take you through this difficult time. Your grandson sounds delightful. I have three (and 3/4) grandchildren and I just love spending time with them.
Life is wonderful and full of surprises
Hippy wannabe 
~^~