Following up with the Transplant Center

JazzysMom · Sep 18, 2009

Is it a requirement that you MUST follow up forever with the same place that you were transplanted at?

I realize that for a good amount of time after surgery it would be needed, but is it forever.

If someone was transplanted on the East Coast & moved to the West coast would they have to go back East just for checkups.

Would they be allowed to establish a relationship with another center closer should rejection or other issues arise?

JazzysMom · Sep 18, 2009

Is it a requirement that you MUST follow up forever with the same place that you were transplanted at?

I realize that for a good amount of time after surgery it would be needed, but is it forever.

If someone was transplanted on the East Coast & moved to the West coast would they have to go back East just for checkups.

Would they be allowed to establish a relationship with another center closer should rejection or other issues arise?

JazzysMom · Sep 18, 2009

Is it a requirement that you MUST follow up forever with the same place that you were transplanted at?

I realize that for a good amount of time after surgery it would be needed, but is it forever.

If someone was transplanted on the East Coast & moved to the West coast would they have to go back East just for checkups.

Would they be allowed to establish a relationship with another center closer should rejection or other issues arise?

JazzysMom · Sep 18, 2009

Is it a requirement that you MUST follow up forever with the same place that you were transplanted at?

I realize that for a good amount of time after surgery it would be needed, but is it forever.

If someone was transplanted on the East Coast & moved to the West coast would they have to go back East just for checkups.

Would they be allowed to establish a relationship with another center closer should rejection or other issues arise?

JazzysMom · Sep 18, 2009

Is it a requirement that you MUST follow up forever with the same place that you were transplanted at?
 
 I realize that for a good amount of time after surgery it would be needed, but is it forever.
 
 If someone was transplanted on the East Coast & moved to the West coast would they have to go back East just for checkups.
 
 Would they be allowed to establish a relationship with another center closer should rejection or other issues arise?

Transplantmommy · Sep 19, 2009

That is a very good question Mel and although I don't know the definite answer because I have not asked, I can tell you that it would be really unreasonable for the transplant center to require a person to continue to travel to that facility if they were to move across the country. I know there is no way that I would have been able to continue going to Cleveland if I had moved to California (or something like that).

I went to Cleveland every few weeks after the transplant, then 3 months, then 4 months, and since I was 2 years out, I was told that I can go every 6 months now. It would not be feasable to buy a plane ticket that often and also pay for a hotel and all of the bills that come from it.

I think that it would totally depend on what the transplant center says, but in my opinion, it would not be up to them unless they paid for my travel.

Transplantmommy · Sep 19, 2009

That is a very good question Mel and although I don't know the definite answer because I have not asked, I can tell you that it would be really unreasonable for the transplant center to require a person to continue to travel to that facility if they were to move across the country. I know there is no way that I would have been able to continue going to Cleveland if I had moved to California (or something like that).

I went to Cleveland every few weeks after the transplant, then 3 months, then 4 months, and since I was 2 years out, I was told that I can go every 6 months now. It would not be feasable to buy a plane ticket that often and also pay for a hotel and all of the bills that come from it.

I think that it would totally depend on what the transplant center says, but in my opinion, it would not be up to them unless they paid for my travel.

Transplantmommy · Sep 19, 2009

That is a very good question Mel and although I don't know the definite answer because I have not asked, I can tell you that it would be really unreasonable for the transplant center to require a person to continue to travel to that facility if they were to move across the country. I know there is no way that I would have been able to continue going to Cleveland if I had moved to California (or something like that).

I went to Cleveland every few weeks after the transplant, then 3 months, then 4 months, and since I was 2 years out, I was told that I can go every 6 months now. It would not be feasable to buy a plane ticket that often and also pay for a hotel and all of the bills that come from it.

I think that it would totally depend on what the transplant center says, but in my opinion, it would not be up to them unless they paid for my travel.

Transplantmommy · Sep 19, 2009

That is a very good question Mel and although I don't know the definite answer because I have not asked, I can tell you that it would be really unreasonable for the transplant center to require a person to continue to travel to that facility if they were to move across the country. I know there is no way that I would have been able to continue going to Cleveland if I had moved to California (or something like that).

I went to Cleveland every few weeks after the transplant, then 3 months, then 4 months, and since I was 2 years out, I was told that I can go every 6 months now. It would not be feasable to buy a plane ticket that often and also pay for a hotel and all of the bills that come from it.

I think that it would totally depend on what the transplant center says, but in my opinion, it would not be up to them unless they paid for my travel.

Transplantmommy · Sep 19, 2009

That is a very good question Mel and although I don't know the definite answer because I have not asked, I can tell you that it would be really unreasonable for the transplant center to require a person to continue to travel to that facility if they were to move across the country. I know there is no way that I would have been able to continue going to Cleveland if I had moved to California (or something like that).
 
 I went to Cleveland every few weeks after the transplant, then 3 months, then 4 months, and since I was 2 years out, I was told that I can go every 6 months now. It would not be feasable to buy a plane ticket that often and also pay for a hotel and all of the bills that come from it.
 
 I think that it would totally depend on what the transplant center says, but in my opinion, it would not be up to them unless they paid for my travel.

coltsfan715 · Sep 19, 2009

I think it MAY depend on the center, but I know at my center and at many others it is NOT a requirement that you follow up with the particular center you were transplanted at forever.

I know with Mayo you have to stay around for at least 3-4 months of until they say okay you can go home now. Here there are many patients that have to travel to mayo because their insurance will only cover the actual transplant at Mayo. Then after about a year their insurance says okay we are not paying for you to travel there anymore. In those situations their insurance also pays for them to travel and stay and for food on those trips.

I have a friend that also lives about 5 hours from our center and she sees her old CF doc and he does the minor testing and things that she needs like lab work or xrays and such.

Here they work with the patient to set them up at another facility if they have to or want to go elsewhere due to convenience. That being said from what I have heard there is still a level of communication between the new center and the actual transplant center the surgery was done. The docs here always seem to be keeping tabs on patients even if they no longer are actively being seen at Mayo. I am not sure if they continue to have say in the patients care but would not be surprised if a new center would ask for opinions and things like that.

I am not sure if it is just with Mayo - I would imagine it is not though because most transplant patients seems VERY dedicated to their center. A lot of patients come here for the transplant and end up going home only to move back because they prefer the care they get here. So it isn't required that they stay with Mayo but they end up staying with Mayo anyway because of a comfort and confidence issue.

Lindsey

coltsfan715 · Sep 19, 2009

I think it MAY depend on the center, but I know at my center and at many others it is NOT a requirement that you follow up with the particular center you were transplanted at forever.

I know with Mayo you have to stay around for at least 3-4 months of until they say okay you can go home now. Here there are many patients that have to travel to mayo because their insurance will only cover the actual transplant at Mayo. Then after about a year their insurance says okay we are not paying for you to travel there anymore. In those situations their insurance also pays for them to travel and stay and for food on those trips.

I have a friend that also lives about 5 hours from our center and she sees her old CF doc and he does the minor testing and things that she needs like lab work or xrays and such.

Here they work with the patient to set them up at another facility if they have to or want to go elsewhere due to convenience. That being said from what I have heard there is still a level of communication between the new center and the actual transplant center the surgery was done. The docs here always seem to be keeping tabs on patients even if they no longer are actively being seen at Mayo. I am not sure if they continue to have say in the patients care but would not be surprised if a new center would ask for opinions and things like that.

I am not sure if it is just with Mayo - I would imagine it is not though because most transplant patients seems VERY dedicated to their center. A lot of patients come here for the transplant and end up going home only to move back because they prefer the care they get here. So it isn't required that they stay with Mayo but they end up staying with Mayo anyway because of a comfort and confidence issue.

Lindsey

coltsfan715 · Sep 19, 2009

I think it MAY depend on the center, but I know at my center and at many others it is NOT a requirement that you follow up with the particular center you were transplanted at forever.

I know with Mayo you have to stay around for at least 3-4 months of until they say okay you can go home now. Here there are many patients that have to travel to mayo because their insurance will only cover the actual transplant at Mayo. Then after about a year their insurance says okay we are not paying for you to travel there anymore. In those situations their insurance also pays for them to travel and stay and for food on those trips.

I have a friend that also lives about 5 hours from our center and she sees her old CF doc and he does the minor testing and things that she needs like lab work or xrays and such.

Here they work with the patient to set them up at another facility if they have to or want to go elsewhere due to convenience. That being said from what I have heard there is still a level of communication between the new center and the actual transplant center the surgery was done. The docs here always seem to be keeping tabs on patients even if they no longer are actively being seen at Mayo. I am not sure if they continue to have say in the patients care but would not be surprised if a new center would ask for opinions and things like that.

I am not sure if it is just with Mayo - I would imagine it is not though because most transplant patients seems VERY dedicated to their center. A lot of patients come here for the transplant and end up going home only to move back because they prefer the care they get here. So it isn't required that they stay with Mayo but they end up staying with Mayo anyway because of a comfort and confidence issue.

Lindsey

coltsfan715 · Sep 19, 2009

I think it MAY depend on the center, but I know at my center and at many others it is NOT a requirement that you follow up with the particular center you were transplanted at forever.

I know with Mayo you have to stay around for at least 3-4 months of until they say okay you can go home now. Here there are many patients that have to travel to mayo because their insurance will only cover the actual transplant at Mayo. Then after about a year their insurance says okay we are not paying for you to travel there anymore. In those situations their insurance also pays for them to travel and stay and for food on those trips.

I have a friend that also lives about 5 hours from our center and she sees her old CF doc and he does the minor testing and things that she needs like lab work or xrays and such.

Here they work with the patient to set them up at another facility if they have to or want to go elsewhere due to convenience. That being said from what I have heard there is still a level of communication between the new center and the actual transplant center the surgery was done. The docs here always seem to be keeping tabs on patients even if they no longer are actively being seen at Mayo. I am not sure if they continue to have say in the patients care but would not be surprised if a new center would ask for opinions and things like that.

I am not sure if it is just with Mayo - I would imagine it is not though because most transplant patients seems VERY dedicated to their center. A lot of patients come here for the transplant and end up going home only to move back because they prefer the care they get here. So it isn't required that they stay with Mayo but they end up staying with Mayo anyway because of a comfort and confidence issue.

Lindsey

coltsfan715 · Sep 19, 2009

I think it MAY depend on the center, but I know at my center and at many others it is NOT a requirement that you follow up with the particular center you were transplanted at forever.
 
 I know with Mayo you have to stay around for at least 3-4 months of until they say okay you can go home now. Here there are many patients that have to travel to mayo because their insurance will only cover the actual transplant at Mayo. Then after about a year their insurance says okay we are not paying for you to travel there anymore. In those situations their insurance also pays for them to travel and stay and for food on those trips.
 
 I have a friend that also lives about 5 hours from our center and she sees her old CF doc and he does the minor testing and things that she needs like lab work or xrays and such.
 
 Here they work with the patient to set them up at another facility if they have to or want to go elsewhere due to convenience. That being said from what I have heard there is still a level of communication between the new center and the actual transplant center the surgery was done. The docs here always seem to be keeping tabs on patients even if they no longer are actively being seen at Mayo. I am not sure if they continue to have say in the patients care but would not be surprised if a new center would ask for opinions and things like that.
 
 I am not sure if it is just with Mayo - I would imagine it is not though because most transplant patients seems VERY dedicated to their center. A lot of patients come here for the transplant and end up going home only to move back because they prefer the care they get here. So it isn't required that they stay with Mayo but they end up staying with Mayo anyway because of a comfort and confidence issue.
 
 Lindsey

rhonda21 · Sep 19, 2009