Aa
well i'm just goimg to take it as it comes.
well I guess I'm just not a good candidate for a transplant (did not pass the evaluation). I just don't see what it is that give them the right to play god. What my grandkids don't diserve a grandpa or my daughter or wife need to be with out! It just makes me angry!! vent,vent.
I have to agree with both Magnum and Livelife777, because it reads as if you may not be getting a proper evaluation or you're being evaluated @ one of the transplant centers in the USA that are very picky regarding who they choose to treat based on the overall condition of your health and being knit picking enough to exclude you in order to maintain their relatively high success rate outcomes stats which are always a misleading one if one becomes familiar with how the transplant allocation system really works within UNOS which is the agency that governs the national waiting list that is compiled from the local and regional organ allocation entities across the country...
It's a travesty that this sort of practice in selecting candidates is still around even after the improvements in the transplant allocation system that is based mostly on the MELD system which was primarily developed from the Mayo Clinic's model of organ allocation which I personally do not agree with because it doesn't consider enough about the patients overall health condition to include how sick the patient really is which sometimes cannot be as obvious when using the MELD system as the primary decision making tool for organ allocation because the MELD system is only a tool used to aid in evaluating a candidate instead of the deciding factor when evaluating a transplant candidate!
This was one of the primary concerns from the University of Pittsburgh's Thomas E. Starzyl Transplantation Institute's director of transplantation, Dr John Fung during the UNOS meetings in DC back in 1998 when the entire organ allocation system was overhauled in order to ensure that the sickest patients were put on to the top of the waiting lists based on many other factors besides the MELD system which was decided to be included as a mandatory factor amongst quite a few other factors to be used in deciding which candidate would receive the gift of life based on a multitude of factors and not exclusively one factor which would be exclusively the patients Meld score alone... I know this first hand because I attended those meetings back in 98 with many other transplant patients that were either still on the waiting lists or were post transplant survivors @ the NIH in Bethesda, MD...
Would you mind sharing with us the name of the transplant center that evaluated you? You don't have to if you're not comfortable... I will reiterate that there are still a minority of transplant centers, and even a University hospital or two that still uses the MELD system primarily to decide who will be a viable candidate in order to maintain there misleadingly high post transplant mortality rate percentages... And an obvious clue to help one narrow down the transplant centers that may be using this form of deciding candidates for their own waiting lists is to look for how many transplants do they perform annually when compared to another transplant center that is staffed with the same amount of surgeons and yet will list much less in the amount of transplants being performed annually compared to centers that have way more transplants annually and yet manage to maintain similarly high transplant mortality rate percentages compared to the centers that perform way less transplants annually...
There are other ways to show that this transplant system is being too selective in the choice of viable candidates based on their own proprietary method of screening candidates for transplantation. But I'll just use this example as one in order to avoid confusing you even more than you probably already are...
The major teaching hospitals will for the most part be less selective in deciding who gets listed in comparison... So look for one's that has been performing transplants for some time now, and teach other doctors transplant surgery via their own fellowship programs that have doctors come to their system from other systems who are chosen to a teaching fellowship @ the transplant center which will more than likely be a university based center of excellence in transplantation... Fortunately at the present time there are many more of these centers across the country than when I was a candidate so you have soooo much better of a chance to become selected as a viable candidate within their waiting lists!
Go to the UNOS website and look for the list they have of all the transplant centers across the country in order to find one closest to your area besides the one you have already dealt with in order to contact them by looking each one of them up also in order to get their contact information for those transplant centers...
You will notice that they usually have higher volume of transplants being performed because of the nature of being a teaching university hospital when compare to transplant centers that don't have a transplant surgery teaching program, and you'll also notice similar success rate when comparing the two despite the obviously higher volume of surgeries being performed by the teaching centers of excellence...
Do your homework or have someone do this for you if you cannot and please don't hesitate to continue to update us with your progress but make sure that you do not procrastinate on getting another opinion because it will be the difference to saving your life!!! and I cannot emphasize this enough as being a post liver transplant patient of 17 + years and counting!
So please keep us informed of your progress okay?
Respectfully,
Henry aka genotype1a
It's a travesty that this sort of practice in selecting candidates is still around even after the improvements in the transplant allocation system that is based mostly on the MELD system which was primarily developed from the Mayo Clinic's model of organ allocation which I personally do not agree with because it doesn't consider enough about the patients overall health condition to include how sick the patient really is which sometimes cannot be as obvious when using the MELD system as the primary decision making tool for organ allocation because the MELD system is only a tool used to aid in evaluating a candidate instead of the deciding factor when evaluating a transplant candidate!
This was one of the primary concerns from the University of Pittsburgh's Thomas E. Starzyl Transplantation Institute's director of transplantation, Dr John Fung during the UNOS meetings in DC back in 1998 when the entire organ allocation system was overhauled in order to ensure that the sickest patients were put on to the top of the waiting lists based on many other factors besides the MELD system which was decided to be included as a mandatory factor amongst quite a few other factors to be used in deciding which candidate would receive the gift of life based on a multitude of factors and not exclusively one factor which would be exclusively the patients Meld score alone... I know this first hand because I attended those meetings back in 98 with many other transplant patients that were either still on the waiting lists or were post transplant survivors @ the NIH in Bethesda, MD...
Would you mind sharing with us the name of the transplant center that evaluated you? You don't have to if you're not comfortable... I will reiterate that there are still a minority of transplant centers, and even a University hospital or two that still uses the MELD system primarily to decide who will be a viable candidate in order to maintain there misleadingly high post transplant mortality rate percentages... And an obvious clue to help one narrow down the transplant centers that may be using this form of deciding candidates for their own waiting lists is to look for how many transplants do they perform annually when compared to another transplant center that is staffed with the same amount of surgeons and yet will list much less in the amount of transplants being performed annually compared to centers that have way more transplants annually and yet manage to maintain similarly high transplant mortality rate percentages compared to the centers that perform way less transplants annually...
There are other ways to show that this transplant system is being too selective in the choice of viable candidates based on their own proprietary method of screening candidates for transplantation. But I'll just use this example as one in order to avoid confusing you even more than you probably already are...
The major teaching hospitals will for the most part be less selective in deciding who gets listed in comparison... So look for one's that has been performing transplants for some time now, and teach other doctors transplant surgery via their own fellowship programs that have doctors come to their system from other systems who are chosen to a teaching fellowship @ the transplant center which will more than likely be a university based center of excellence in transplantation... Fortunately at the present time there are many more of these centers across the country than when I was a candidate so you have soooo much better of a chance to become selected as a viable candidate within their waiting lists!
Go to the UNOS website and look for the list they have of all the transplant centers across the country in order to find one closest to your area besides the one you have already dealt with in order to contact them by looking each one of them up also in order to get their contact information for those transplant centers...
You will notice that they usually have higher volume of transplants being performed because of the nature of being a teaching university hospital when compare to transplant centers that don't have a transplant surgery teaching program, and you'll also notice similar success rate when comparing the two despite the obviously higher volume of surgeries being performed by the teaching centers of excellence...
Do your homework or have someone do this for you if you cannot and please don't hesitate to continue to update us with your progress but make sure that you do not procrastinate on getting another opinion because it will be the difference to saving your life!!! and I cannot emphasize this enough as being a post liver transplant patient of 17 + years and counting!
So please keep us informed of your progress okay?
Respectfully,
Henry aka genotype1a
Magnum is right. Seems to me your current Dr is not advocating for you.
If at all possible seek a 2nd opinion. You may have a few unresolved issues, but you cannot be denied treatment.
I know when I as diagnosed with cancer, I had not only 1 opinion but 3.
You deserve someone that will be in your corner to overcome this disease.
They do exist.
.....Kim
If at all possible seek a 2nd opinion. You may have a few unresolved issues, but you cannot be denied treatment.
I know when I as diagnosed with cancer, I had not only 1 opinion but 3.
You deserve someone that will be in your corner to overcome this disease.
They do exist.
.....Kim
I went through the same thing. I was evaluated in Los Angeles at the UCLA Medical Center and they told me to go back home to Las Vegas because I was not meeting the MELD score. Then, my doctor in Las Vegas (where I was living), said to try again elsewhere. My brother lives in Chicago and he suggested Northwestern Memorial hospital. I flew there, went through two days of testing, and they decided I was sick enough to be "considered" for a transplant.
At that time my MELD score was 20. As a few more months went by, they realized my MELD score did not represent how sick I really was. so I was put on the transplant list. Within three weeks I received a liver. In other words, a MELD score does not always represent how sick you really are. I suggest a trip to Northwestern hospital if your insurance will cover the evaluation...
Magnum
At that time my MELD score was 20. As a few more months went by, they realized my MELD score did not represent how sick I really was. so I was put on the transplant list. Within three weeks I received a liver. In other words, a MELD score does not always represent how sick you really are. I suggest a trip to Northwestern hospital if your insurance will cover the evaluation...
Magnum
I have mental health issues and have had them for about 16 years now my meld is 17 but I can not stay out of the hosp, I just got banded (6) and I seem to have one symptom after the other I still have hep c and my doc wont start treatment till I'm better I'm draned (about 5 to 7.5 lieters) at leest ! per month or I can't breath and when I go inpatent I am so week that I cant hardly walk. I do feel better now that I have vented all of my stats are about a year old
Aritzr. Can you tell us why they excluded you from a transplant. Perhaps we can help.
....Kim
....Kim
Venting is good for the soul.
But it helps to learn how to become your own advocate.
Learn as much as you can about your illness.
Find a good team of medical staff to be a part of your team
Not giving up
The people on this forum are an incredible resource
But it helps to learn how to become your own advocate.
Learn as much as you can about your illness.
Find a good team of medical staff to be a part of your team
Not giving up
The people on this forum are an incredible resource
Venting is what this site and we all are here for! And glancing at your bio for info makes me confused. What exactly disqualifies you? And where do you stand health-wise currently, MELD score, etc?
You are young, 48 years old, and yes, your grandkids deserve a grandpa. It looks like you have a stable relationship with your wife who's by your side and should be able to handle any "mental" issues that need dealing with.
Can you provide more info? Lots of great people here that can help for sure.
You are young, 48 years old, and yes, your grandkids deserve a grandpa. It looks like you have a stable relationship with your wife who's by your side and should be able to handle any "mental" issues that need dealing with.
Can you provide more info? Lots of great people here that can help for sure.
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