Transplant Costs

[Emily65Roses]

I don't mean to scare you or anything, but our Allan here had Medicare and they wouldn't cover a tx for him because he had cepacia. So you'll have to check into that. I hope it works better for you than it did for him.

 

[Emily65Roses]

I don't mean to scare you or anything, but our Allan here had Medicare and they wouldn't cover a tx for him because he had cepacia. So you'll have to check into that. I hope it works better for you than it did for him.

 

[Emily65Roses]

I don't mean to scare you or anything, but our Allan here had Medicare and they wouldn't cover a tx for him because he had cepacia. So you'll have to check into that. I hope it works better for you than it did for him.

 

[Emily65Roses]

I don't mean to scare you or anything, but our Allan here had Medicare and they wouldn't cover a tx for him because he had cepacia. So you'll have to check into that. I hope it works better for you than it did for him.

 

[AllansGirl]

Actually, Allan had Medicaid, not Medicare. A friend of his (some of you may remember him--James Binegar) had b. cepacia also, but had both Medicare and Medicaid, and his transplant was covered. (Sadly, James passed away a few weeks after transplant). I'm not sure whether it was covered under Medicare, Medicaid, or a combination of both.

North Carolina State Medicaid (at the time, anyway) didn't have a specific policy against transplanting Cepacia patients. Medicaid cited low weight, osteoporosis, and b. cepacia in combination as making him a poor transplant candidate. James's weight was better, and he had osteopenia, so they weren't exactly comparable.

What will and will not be covered will vary widely by state. Allan's parents were trying to get it covered by NY state Medicaid, and they claim that a couple of days after his death, they received a letter indicating there was a chance that would have worked. I haven't seen the letter, so I can't exactly vouch for it (and the fact that we may have been so close really depresses the hell out of me, so I'm not sure if I want to see it, anyway).

I guess what I am trying to say is that just because he may have been royally screwed over, doesn't mean you will be. There were too many other factors involved, and your case may not bear so many resemblances to his.

As for foundations that will help you out, we didn't find much in our search that would cover a substantial portion of the cost if transplant wasn't covered by insurance. However, the best fundraising site we investigated for organ transplants was the Children's Organ Transplant Association. ( www.cota.org). Don't be put off by the "Children" in the organization's title. It covers CF patients, since they consider it a "childhood disease". If you look through the patient's campaigns, you'll actually see quite a few adults. COTA appeared to be better than the other transplant associations that we looked at because they'll match contributions up to $10,000, and their operating costs runs off of interest from contributions, rather than them taking a small percentage of what you raise, as some of the other organizations do.

Best of luck at your Dr's appointment tomorrow, Rochelle. I hope that everything becomes clearer, and that they'll be able to answer many of your questions.

 

[AllansGirl]

Actually, Allan had Medicaid, not Medicare. A friend of his (some of you may remember him--James Binegar) had b. cepacia also, but had both Medicare and Medicaid, and his transplant was covered. (Sadly, James passed away a few weeks after transplant). I'm not sure whether it was covered under Medicare, Medicaid, or a combination of both.

North Carolina State Medicaid (at the time, anyway) didn't have a specific policy against transplanting Cepacia patients. Medicaid cited low weight, osteoporosis, and b. cepacia in combination as making him a poor transplant candidate. James's weight was better, and he had osteopenia, so they weren't exactly comparable.

What will and will not be covered will vary widely by state. Allan's parents were trying to get it covered by NY state Medicaid, and they claim that a couple of days after his death, they received a letter indicating there was a chance that would have worked. I haven't seen the letter, so I can't exactly vouch for it (and the fact that we may have been so close really depresses the hell out of me, so I'm not sure if I want to see it, anyway).

I guess what I am trying to say is that just because he may have been royally screwed over, doesn't mean you will be. There were too many other factors involved, and your case may not bear so many resemblances to his.

As for foundations that will help you out, we didn't find much in our search that would cover a substantial portion of the cost if transplant wasn't covered by insurance. However, the best fundraising site we investigated for organ transplants was the Children's Organ Transplant Association. ( www.cota.org). Don't be put off by the "Children" in the organization's title. It covers CF patients, since they consider it a "childhood disease". If you look through the patient's campaigns, you'll actually see quite a few adults. COTA appeared to be better than the other transplant associations that we looked at because they'll match contributions up to $10,000, and their operating costs runs off of interest from contributions, rather than them taking a small percentage of what you raise, as some of the other organizations do.

Best of luck at your Dr's appointment tomorrow, Rochelle. I hope that everything becomes clearer, and that they'll be able to answer many of your questions.

 

[AllansGirl]

Actually, Allan had Medicaid, not Medicare. A friend of his (some of you may remember him--James Binegar) had b. cepacia also, but had both Medicare and Medicaid, and his transplant was covered. (Sadly, James passed away a few weeks after transplant). I'm not sure whether it was covered under Medicare, Medicaid, or a combination of both.

North Carolina State Medicaid (at the time, anyway) didn't have a specific policy against transplanting Cepacia patients. Medicaid cited low weight, osteoporosis, and b. cepacia in combination as making him a poor transplant candidate. James's weight was better, and he had osteopenia, so they weren't exactly comparable.

What will and will not be covered will vary widely by state. Allan's parents were trying to get it covered by NY state Medicaid, and they claim that a couple of days after his death, they received a letter indicating there was a chance that would have worked. I haven't seen the letter, so I can't exactly vouch for it (and the fact that we may have been so close really depresses the hell out of me, so I'm not sure if I want to see it, anyway).

I guess what I am trying to say is that just because he may have been royally screwed over, doesn't mean you will be. There were too many other factors involved, and your case may not bear so many resemblances to his.

As for foundations that will help you out, we didn't find much in our search that would cover a substantial portion of the cost if transplant wasn't covered by insurance. However, the best fundraising site we investigated for organ transplants was the Children's Organ Transplant Association. ( www.cota.org). Don't be put off by the "Children" in the organization's title. It covers CF patients, since they consider it a "childhood disease". If you look through the patient's campaigns, you'll actually see quite a few adults. COTA appeared to be better than the other transplant associations that we looked at because they'll match contributions up to $10,000, and their operating costs runs off of interest from contributions, rather than them taking a small percentage of what you raise, as some of the other organizations do.

Best of luck at your Dr's appointment tomorrow, Rochelle. I hope that everything becomes clearer, and that they'll be able to answer many of your questions.

 

[AllansGirl]

Actually, Allan had Medicaid, not Medicare. A friend of his (some of you may remember him--James Binegar) had b. cepacia also, but had both Medicare and Medicaid, and his transplant was covered. (Sadly, James passed away a few weeks after transplant). I'm not sure whether it was covered under Medicare, Medicaid, or a combination of both.

North Carolina State Medicaid (at the time, anyway) didn't have a specific policy against transplanting Cepacia patients. Medicaid cited low weight, osteoporosis, and b. cepacia in combination as making him a poor transplant candidate. James's weight was better, and he had osteopenia, so they weren't exactly comparable.

What will and will not be covered will vary widely by state. Allan's parents were trying to get it covered by NY state Medicaid, and they claim that a couple of days after his death, they received a letter indicating there was a chance that would have worked. I haven't seen the letter, so I can't exactly vouch for it (and the fact that we may have been so close really depresses the hell out of me, so I'm not sure if I want to see it, anyway).

I guess what I am trying to say is that just because he may have been royally screwed over, doesn't mean you will be. There were too many other factors involved, and your case may not bear so many resemblances to his.

As for foundations that will help you out, we didn't find much in our search that would cover a substantial portion of the cost if transplant wasn't covered by insurance. However, the best fundraising site we investigated for organ transplants was the Children's Organ Transplant Association. ( www.cota.org). Don't be put off by the "Children" in the organization's title. It covers CF patients, since they consider it a "childhood disease". If you look through the patient's campaigns, you'll actually see quite a few adults. COTA appeared to be better than the other transplant associations that we looked at because they'll match contributions up to $10,000, and their operating costs runs off of interest from contributions, rather than them taking a small percentage of what you raise, as some of the other organizations do.

Best of luck at your Dr's appointment tomorrow, Rochelle. I hope that everything becomes clearer, and that they'll be able to answer many of your questions.

 

[AllansGirl]

Actually, Allan had Medicaid, not Medicare. A friend of his (some of you may remember him--James Binegar) had b. cepacia also, but had both Medicare and Medicaid, and his transplant was covered. (Sadly, James passed away a few weeks after transplant). I'm not sure whether it was covered under Medicare, Medicaid, or a combination of both.

North Carolina State Medicaid (at the time, anyway) didn't have a specific policy against transplanting Cepacia patients. Medicaid cited low weight, osteoporosis, and b. cepacia in combination as making him a poor transplant candidate. James's weight was better, and he had osteopenia, so they weren't exactly comparable.

What will and will not be covered will vary widely by state. Allan's parents were trying to get it covered by NY state Medicaid, and they claim that a couple of days after his death, they received a letter indicating there was a chance that would have worked. I haven't seen the letter, so I can't exactly vouch for it (and the fact that we may have been so close really depresses the hell out of me, so I'm not sure if I want to see it, anyway).

I guess what I am trying to say is that just because he may have been royally screwed over, doesn't mean you will be. There were too many other factors involved, and your case may not bear so many resemblances to his.

As for foundations that will help you out, we didn't find much in our search that would cover a substantial portion of the cost if transplant wasn't covered by insurance. However, the best fundraising site we investigated for organ transplants was the Children's Organ Transplant Association. ( www.cota.org). Don't be put off by the "Children" in the organization's title. It covers CF patients, since they consider it a "childhood disease". If you look through the patient's campaigns, you'll actually see quite a few adults. COTA appeared to be better than the other transplant associations that we looked at because they'll match contributions up to $10,000, and their operating costs runs off of interest from contributions, rather than them taking a small percentage of what you raise, as some of the other organizations do.

Best of luck at your Dr's appointment tomorrow, Rochelle. I hope that everything becomes clearer, and that they'll be able to answer many of your questions.

 

[AllansGirl]

Actually, Allan had Medicaid, not Medicare. A friend of his (some of you may remember him--James Binegar) had b. cepacia also, but had both Medicare and Medicaid, and his transplant was covered. (Sadly, James passed away a few weeks after transplant). I'm not sure whether it was covered under Medicare, Medicaid, or a combination of both.

North Carolina State Medicaid (at the time, anyway) didn't have a specific policy against transplanting Cepacia patients. Medicaid cited low weight, osteoporosis, and b. cepacia in combination as making him a poor transplant candidate. James's weight was better, and he had osteopenia, so they weren't exactly comparable.

What will and will not be covered will vary widely by state. Allan's parents were trying to get it covered by NY state Medicaid, and they claim that a couple of days after his death, they received a letter indicating there was a chance that would have worked. I haven't seen the letter, so I can't exactly vouch for it (and the fact that we may have been so close really depresses the hell out of me, so I'm not sure if I want to see it, anyway).

I guess what I am trying to say is that just because he may have been royally screwed over, doesn't mean you will be. There were too many other factors involved, and your case may not bear so many resemblances to his.

As for foundations that will help you out, we didn't find much in our search that would cover a substantial portion of the cost if transplant wasn't covered by insurance. However, the best fundraising site we investigated for organ transplants was the Children's Organ Transplant Association. ( www.cota.org). Don't be put off by the "Children" in the organization's title. It covers CF patients, since they consider it a "childhood disease". If you look through the patient's campaigns, you'll actually see quite a few adults. COTA appeared to be better than the other transplant associations that we looked at because they'll match contributions up to $10,000, and their operating costs runs off of interest from contributions, rather than them taking a small percentage of what you raise, as some of the other organizations do.

Best of luck at your Dr's appointment tomorrow, Rochelle. I hope that everything becomes clearer, and that they'll be able to answer many of your questions.

 

[coltsfan715]

I am not sure about what Medicare will cover - though I have Medicare it is NOT my primary insurance, so I have not dealt with that issue.

I did want to put this out there though.

One - there are several Transplant Foundations that will help out with Fundraising for transplant and transplant related expenses. IF you ask the social worker at your center when you go or ask the doctor or nurse they should be able to give you information about it.

Two - By looking at the EOBs (Explanation of Benefits) I have gotten from my insurance and the statements that have shown up at the house from the hospital. My surgery and hospital stay totaled about $200 thousand. The Evaluation was roughly $40 thousand and I have had probably $40 thousand more in different charges since being home - be it lab work, xrays, docs appointments, rehab or the extra stuff I have needed like the CT scan of my sinuses and endocrine appointments.

I am not trying to freak you out with the expense - but figured I would put that out there since I had been looking at those numbers as things have come in to the house. Also to add the $200 thousand was EVERYTHING from the admit pre-Tx to the surgery and all the stuff they used, the ICU stay, the regular hospital stay and the discharge. It was NOT JUST the surgery, and it was actually about $191 thousand.

We did not have to relocate, so I can not say how much that would cost on top of that. Though I am sure it would depend on the center and the location you would be relocating too.

Take Care,
Love Linds

 

[coltsfan715]

I am not sure about what Medicare will cover - though I have Medicare it is NOT my primary insurance, so I have not dealt with that issue.

I did want to put this out there though.

One - there are several Transplant Foundations that will help out with Fundraising for transplant and transplant related expenses. IF you ask the social worker at your center when you go or ask the doctor or nurse they should be able to give you information about it.

Two - By looking at the EOBs (Explanation of Benefits) I have gotten from my insurance and the statements that have shown up at the house from the hospital. My surgery and hospital stay totaled about $200 thousand. The Evaluation was roughly $40 thousand and I have had probably $40 thousand more in different charges since being home - be it lab work, xrays, docs appointments, rehab or the extra stuff I have needed like the CT scan of my sinuses and endocrine appointments.

I am not trying to freak you out with the expense - but figured I would put that out there since I had been looking at those numbers as things have come in to the house. Also to add the $200 thousand was EVERYTHING from the admit pre-Tx to the surgery and all the stuff they used, the ICU stay, the regular hospital stay and the discharge. It was NOT JUST the surgery, and it was actually about $191 thousand.

We did not have to relocate, so I can not say how much that would cost on top of that. Though I am sure it would depend on the center and the location you would be relocating too.

Take Care,
Love Linds

 

[coltsfan715]

I am not sure about what Medicare will cover - though I have Medicare it is NOT my primary insurance, so I have not dealt with that issue.

I did want to put this out there though.

One - there are several Transplant Foundations that will help out with Fundraising for transplant and transplant related expenses. IF you ask the social worker at your center when you go or ask the doctor or nurse they should be able to give you information about it.

Two - By looking at the EOBs (Explanation of Benefits) I have gotten from my insurance and the statements that have shown up at the house from the hospital. My surgery and hospital stay totaled about $200 thousand. The Evaluation was roughly $40 thousand and I have had probably $40 thousand more in different charges since being home - be it lab work, xrays, docs appointments, rehab or the extra stuff I have needed like the CT scan of my sinuses and endocrine appointments.

I am not trying to freak you out with the expense - but figured I would put that out there since I had been looking at those numbers as things have come in to the house. Also to add the $200 thousand was EVERYTHING from the admit pre-Tx to the surgery and all the stuff they used, the ICU stay, the regular hospital stay and the discharge. It was NOT JUST the surgery, and it was actually about $191 thousand.

We did not have to relocate, so I can not say how much that would cost on top of that. Though I am sure it would depend on the center and the location you would be relocating too.

Take Care,
Love Linds

 

[coltsfan715]

I am not sure about what Medicare will cover - though I have Medicare it is NOT my primary insurance, so I have not dealt with that issue.

I did want to put this out there though.

One - there are several Transplant Foundations that will help out with Fundraising for transplant and transplant related expenses. IF you ask the social worker at your center when you go or ask the doctor or nurse they should be able to give you information about it.

Two - By looking at the EOBs (Explanation of Benefits) I have gotten from my insurance and the statements that have shown up at the house from the hospital. My surgery and hospital stay totaled about $200 thousand. The Evaluation was roughly $40 thousand and I have had probably $40 thousand more in different charges since being home - be it lab work, xrays, docs appointments, rehab or the extra stuff I have needed like the CT scan of my sinuses and endocrine appointments.

I am not trying to freak you out with the expense - but figured I would put that out there since I had been looking at those numbers as things have come in to the house. Also to add the $200 thousand was EVERYTHING from the admit pre-Tx to the surgery and all the stuff they used, the ICU stay, the regular hospital stay and the discharge. It was NOT JUST the surgery, and it was actually about $191 thousand.

We did not have to relocate, so I can not say how much that would cost on top of that. Though I am sure it would depend on the center and the location you would be relocating too.

Take Care,
Love Linds

 

[coltsfan715]

I am not sure about what Medicare will cover - though I have Medicare it is NOT my primary insurance, so I have not dealt with that issue.

I did want to put this out there though.

One - there are several Transplant Foundations that will help out with Fundraising for transplant and transplant related expenses. IF you ask the social worker at your center when you go or ask the doctor or nurse they should be able to give you information about it.

Two - By looking at the EOBs (Explanation of Benefits) I have gotten from my insurance and the statements that have shown up at the house from the hospital. My surgery and hospital stay totaled about $200 thousand. The Evaluation was roughly $40 thousand and I have had probably $40 thousand more in different charges since being home - be it lab work, xrays, docs appointments, rehab or the extra stuff I have needed like the CT scan of my sinuses and endocrine appointments.

I am not trying to freak you out with the expense - but figured I would put that out there since I had been looking at those numbers as things have come in to the house. Also to add the $200 thousand was EVERYTHING from the admit pre-Tx to the surgery and all the stuff they used, the ICU stay, the regular hospital stay and the discharge. It was NOT JUST the surgery, and it was actually about $191 thousand.

We did not have to relocate, so I can not say how much that would cost on top of that. Though I am sure it would depend on the center and the location you would be relocating too.

Take Care,
Love Linds

 

[coltsfan715]

I am not sure about what Medicare will cover - though I have Medicare it is NOT my primary insurance, so I have not dealt with that issue.

I did want to put this out there though.

One - there are several Transplant Foundations that will help out with Fundraising for transplant and transplant related expenses. IF you ask the social worker at your center when you go or ask the doctor or nurse they should be able to give you information about it.

Two - By looking at the EOBs (Explanation of Benefits) I have gotten from my insurance and the statements that have shown up at the house from the hospital. My surgery and hospital stay totaled about $200 thousand. The Evaluation was roughly $40 thousand and I have had probably $40 thousand more in different charges since being home - be it lab work, xrays, docs appointments, rehab or the extra stuff I have needed like the CT scan of my sinuses and endocrine appointments.

I am not trying to freak you out with the expense - but figured I would put that out there since I had been looking at those numbers as things have come in to the house. Also to add the $200 thousand was EVERYTHING from the admit pre-Tx to the surgery and all the stuff they used, the ICU stay, the regular hospital stay and the discharge. It was NOT JUST the surgery, and it was actually about $191 thousand.

We did not have to relocate, so I can not say how much that would cost on top of that. Though I am sure it would depend on the center and the location you would be relocating too.

Take Care,
Love Linds

 

[katyf13]

Mike has medicare. They would have covered everything in Boston. They would not pay for him to be dual listed, so before he went through that processin Cleveland, he was put on his mom's insurance, Blue Cross. (not a problem, because he has a chronic illness and was considered disabled). We also have a foundation. We set up one with one of the transplant associations but also have donated money put aside for immediate costs (the associations reimburse rather than give you money up front.) Anyway, don't worry too much about the money part right now but it's good to start thinking about it. Good luck!!

 

[katyf13]

Mike has medicare. They would have covered everything in Boston. They would not pay for him to be dual listed, so before he went through that processin Cleveland, he was put on his mom's insurance, Blue Cross. (not a problem, because he has a chronic illness and was considered disabled). We also have a foundation. We set up one with one of the transplant associations but also have donated money put aside for immediate costs (the associations reimburse rather than give you money up front.) Anyway, don't worry too much about the money part right now but it's good to start thinking about it. Good luck!!

 

[katyf13]

Mike has medicare. They would have covered everything in Boston. They would not pay for him to be dual listed, so before he went through that processin Cleveland, he was put on his mom's insurance, Blue Cross. (not a problem, because he has a chronic illness and was considered disabled). We also have a foundation. We set up one with one of the transplant associations but also have donated money put aside for immediate costs (the associations reimburse rather than give you money up front.) Anyway, don't worry too much about the money part right now but it's good to start thinking about it. Good luck!!

 

[katyf13]

Mike has medicare. They would have covered everything in Boston. They would not pay for him to be dual listed, so before he went through that processin Cleveland, he was put on his mom's insurance, Blue Cross. (not a problem, because he has a chronic illness and was considered disabled). We also have a foundation. We set up one with one of the transplant associations but also have donated money put aside for immediate costs (the associations reimburse rather than give you money up front.) Anyway, don't worry too much about the money part right now but it's good to start thinking about it. Good luck!!