What are the financial challenges after transplant with medicare?

Posted by willie0027 @willie0027, 3 days ago

What financial challenges are there after a transplant and medicare

Hi @willie0027 and welcome to Connect. I'd like to bring @danab into this conversation as he may have some experiences to share with you. Willie, can you explain a bit more? It sounds like you're planning ahead to know what medical costs to expect after transplant and to distinguish what "hidden" costs may not be covered by Medicare. Is that about right?

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@willie0027 hi Willie. I too welcome you to Connect.
After transplant, and before also, the financial challenges depend greatly on your insurance coverage. I have Medicare and one of the best supplement plans, plus Medicare D for drug coverage. I have to pay very little, mainly some small co-pays on some drugs -not the immunosuppressants. The immunosuppressants are covered under Medicare B, with the remaining cost paid by the supplemental.
From what I understand, the drugs can be very costly if you do not have coverage.
JK

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You’re not alone in inquiring about financial coverage for a transplant. Here is information from United Network for Organ Sharing (UNOS) – How can I cover transplant costs?
"Some transplant candidates and recipients have difficulty affording the cost of a transplant or related expenses such as travel, lodging and post-transplant medications. There are a number of local, regional and national organizations that provide some assistance through grants or services. In individual cases, local community organizations or faith groups may be able to help, and friends and families may solicit funds through public events or appeals. Every transplant program has a social worker or financial coordinator who can work with you and advise you on insurance and funding options."

To read more about basic costs (medical and nonmedical), insurance basics, financial assistance and resources you can click on this lin
https://transplantliving.org/financing-a-transplant/

@willie0027, Have you met with your transplant team, yet? You will have a counselor, or social worker, or finincial advisor (depending on how your transplant center has it set up) and they can help you with your individual situation.

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@colleenyoung

Hi @willie0027 and welcome to Connect. I'd like to bring @danab into this conversation as he may have some experiences to share with you. Willie, can you explain a bit more? It sounds like you're planning ahead to know what medical costs to expect after transplant and to distinguish what "hidden" costs may not be covered by Medicare. Is that about right?

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Hello Colleen, I've had the transplant in July but I'm going to retire this December. Right now I'm not paying any major bills for follow up treatments because of my insurance, but all that will change when I retire and flip over to Medicare. So I'm trying to get my mind set on and estimate on what my cost my be. By the way my stomach has been numb since the surgery, how long does that last?

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@contentandwell

@willie0027 hi Willie. I too welcome you to Connect.
After transplant, and before also, the financial challenges depend greatly on your insurance coverage. I have Medicare and one of the best supplement plans, plus Medicare D for drug coverage. I have to pay very little, mainly some small co-pays on some drugs -not the immunosuppressants. The immunosuppressants are covered under Medicare B, with the remaining cost paid by the supplemental.
From what I understand, the drugs can be very costly if you do not have coverage.
JK

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Thank you

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@rosemarya

You’re not alone in inquiring about financial coverage for a transplant. Here is information from United Network for Organ Sharing (UNOS) – How can I cover transplant costs?
"Some transplant candidates and recipients have difficulty affording the cost of a transplant or related expenses such as travel, lodging and post-transplant medications. There are a number of local, regional and national organizations that provide some assistance through grants or services. In individual cases, local community organizations or faith groups may be able to help, and friends and families may solicit funds through public events or appeals. Every transplant program has a social worker or financial coordinator who can work with you and advise you on insurance and funding options."

To read more about basic costs (medical and nonmedical), insurance basics, financial assistance and resources you can click on this lin
https://transplantliving.org/financing-a-transplant/

@willie0027, Have you met with your transplant team, yet? You will have a counselor, or social worker, or finincial advisor (depending on how your transplant center has it set up) and they can help you with your individual situation.

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Thank you for your reply

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@willie0027

Hello Colleen, I've had the transplant in July but I'm going to retire this December. Right now I'm not paying any major bills for follow up treatments because of my insurance, but all that will change when I retire and flip over to Medicare. So I'm trying to get my mind set on and estimate on what my cost my be. By the way my stomach has been numb since the surgery, how long does that last?

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@willie0027 hi there. Just a note on your question as to how long the numbness lasts on your stomach. I am coming up to my 1 year anniversary and I still can't feel anything across my abdomen. The doctors told me that I may never get back any sensation in my abdomen as nerves may have been cut during surgery. I can run my fingernails across my stomach and not feel a thing. Not everyone has this but I do. It's very strange but a small price to pay after surgery.

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@gaylea1

@willie0027 hi there. Just a note on your question as to how long the numbness lasts on your stomach. I am coming up to my 1 year anniversary and I still can't feel anything across my abdomen. The doctors told me that I may never get back any sensation in my abdomen as nerves may have been cut during surgery. I can run my fingernails across my stomach and not feel a thing. Not everyone has this but I do. It's very strange but a small price to pay after surgery.

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While I’ve not yet even gotten on a transplant list, in the mid-eighties my gallbladder was removed through a huge slice across my right abdomen (perhaps similar to a transplant). I’ve had no feeling below the scar since.

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@skipmarsliver

While I’ve not yet even gotten on a transplant list, in the mid-eighties my gallbladder was removed through a huge slice across my right abdomen (perhaps similar to a transplant). I’ve had no feeling below the scar since.

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No feeling for me either. My transplant surgery was 10 years ago. I have become used to it – it is my new normal.

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@willie0027

Hello Colleen, I've had the transplant in July but I'm going to retire this December. Right now I'm not paying any major bills for follow up treatments because of my insurance, but all that will change when I retire and flip over to Medicare. So I'm trying to get my mind set on and estimate on what my cost my be. By the way my stomach has been numb since the surgery, how long does that last?

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@willie0027 @gaylea1 @skipmarsliver @rosemarya I have no numbness and never did! My incision healed very quickly and with no discomfort. I credit my surgeon for that, to me he’s the best surgeon on the planet! I’m sure all of the transplant surgeons at top hospitals are incredible but in my mind, he is the best! 😁. I feel fortunate that the luck of the draw made him the one who did my transplant.
JK

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@willie0027 yes i am just like you but i can't get Medicare untill 2 years disability which is in May. But i have been talking to a lot of people including The social workers at Mayo Phoenix where i got my transplant. Right now i have Blue Cross Blue shield federal plan and this last March when i turned 60 i got Tricare Prime as a secondary. So i did have to retire when i got the transplant and was able to keep my BCBS from my prior work but paying my regular co-payment each month which i was very Happy covered the transplant and 1 year of follow up for only about 10,000 out of pocket which for a bill close to a million whs pretty good. My issue now is i would like to switch to medicare asap since then for me i also get Tricare for life which according to a few people i have talked to will be perfect and ill save the 600.00 a month for Blue Cross. I will still hafe to pay the normal copay for part b but that will be a lot less. I think its about 130 a month at the moment. Btw also after the first year my copay for BCBS went to out of network for the drs at mayo and this year so far has cost me over 20000 that's for just 1 long 5 week hospital stay ant 2 short ones less than a week each. So im told by Mayo that Medicare will be better than blue cross for most things and having tricare will cover almost all the copays. I hope that helps. One other thing in my conversation with Mayo they did say that there are some i guess there called supplement plans that are better than others so they told me when yhe time comes lets sit down and discuss what would be best for you. That was before they knew about Tricare for life. Right now i have tricare prime which helps a little but not very much having Blue Cross as primary. But when i get the for life plan works very well with Medicare. I should mention tho that Tricare is a military Veteran and dependents plan only. So if your not retired military or you spouse than i would talk to the Mayo Social workers and find out what they recommend. Good luck and i will be available to answer any questions i can.

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I have a Medicare advantage plan. My out of pocket hospital costs are $100. I also had misc other costs which were $716 for the transplant. I also had $10,000 coverage for lodging, gas and parking for one year. When I go back for my 2 yr check in April, I will have to pay for lodging,etc myself. I was surprised and grateful for the good coverage. I pay $107 a month for my ins.

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@cmael

I have a Medicare advantage plan. My out of pocket hospital costs are $100. I also had misc other costs which were $716 for the transplant. I also had $10,000 coverage for lodging, gas and parking for one year. When I go back for my 2 yr check in April, I will have to pay for lodging,etc myself. I was surprised and grateful for the good coverage. I pay $107 a month for my ins.

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@cmael. That’s a great price, we pay about $209 a month for my supplemental. With Medicare advantage do you still have a supplemental too? My coverage is expensive but the coverage has been phenomenal.
JK

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@rosemarya

You’re not alone in inquiring about financial coverage for a transplant. Here is information from United Network for Organ Sharing (UNOS) – How can I cover transplant costs?
"Some transplant candidates and recipients have difficulty affording the cost of a transplant or related expenses such as travel, lodging and post-transplant medications. There are a number of local, regional and national organizations that provide some assistance through grants or services. In individual cases, local community organizations or faith groups may be able to help, and friends and families may solicit funds through public events or appeals. Every transplant program has a social worker or financial coordinator who can work with you and advise you on insurance and funding options."

To read more about basic costs (medical and nonmedical), insurance basics, financial assistance and resources you can click on this lin
https://transplantliving.org/financing-a-transplant/

@willie0027, Have you met with your transplant team, yet? You will have a counselor, or social worker, or finincial advisor (depending on how your transplant center has it set up) and they can help you with your individual situation.

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Willie-If it’s smooth sailing after the transplant you have to come up with lodging for 4-5 weeks in close proximity to your transplant center. This of course would include meals and transportation and all other incidentals. After you get home there’s are only 3 basic expenses. Meds – labs once a month – and yearly visits to your transplant center. I just recently went to labs every 3 months after my 3rd anniversary. And as every one has echoed expenses vary greatly depending on insurance coverage. So here is hoping everything goes smoothly for you.

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My daughter started a Go-Fund me page to help us with lodging for my wife and other family during my hospital stay, as well as helping with bills due to lost time from work. The other expense that is a challenge or me is the drug co-pays, which are quite high. JK mentioned earlier in this discussion that there are no co-pays for anti-rejection meds, but this is not the case for me. I am on Medicare and have not heard of this. I have searched for the best Part D coverage I can find, but all have high co-pays for many of the drugs I need. One important aspect for those on Medicare is to chose the best supplemental plan you can. The co-pays for hospital stays could bankrupt any one. I have a Plan F policy that covers all co-pays. I will most likely never be able to retire in order to pay for the insurance costs.

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