Forced to change transplant center

mackenziesmom · Feb 28, 2009

My husband's company changed insurance carriers and they might make us change transplant centers. He's already been evaluated in Dallas (which is nearby) and is on the transplant list. The other local hospital they want us to use has no CF specialist and performs very few transplants on CF patients. Another hospital on their list is in another city. The center we've been using is highly rated and was recommended by our CF center. That's where they send their patients.
Anyone else face this problem? Any suggestions? We're afraid this change is going to 1) delay his transplant 2) not provide good post transplant care. Our first appeal was denied by the insurance company and is now going to the company for a second level appeal. Our doctors have written letter outlining our son's critical condition.
If anyone has some insight into this problem, I would appreciate it. I'm about to write a final appeal letter.
thanks,
joan

mackenziesmom · Feb 28, 2009

My husband's company changed insurance carriers and they might make us change transplant centers. He's already been evaluated in Dallas (which is nearby) and is on the transplant list. The other local hospital they want us to use has no CF specialist and performs very few transplants on CF patients. Another hospital on their list is in another city. The center we've been using is highly rated and was recommended by our CF center. That's where they send their patients.
Anyone else face this problem? Any suggestions? We're afraid this change is going to 1) delay his transplant 2) not provide good post transplant care. Our first appeal was denied by the insurance company and is now going to the company for a second level appeal. Our doctors have written letter outlining our son's critical condition.
If anyone has some insight into this problem, I would appreciate it. I'm about to write a final appeal letter.
thanks,
joan

mackenziesmom · Feb 28, 2009

My husband's company changed insurance carriers and they might make us change transplant centers. He's already been evaluated in Dallas (which is nearby) and is on the transplant list. The other local hospital they want us to use has no CF specialist and performs very few transplants on CF patients. Another hospital on their list is in another city. The center we've been using is highly rated and was recommended by our CF center. That's where they send their patients.
Anyone else face this problem? Any suggestions? We're afraid this change is going to 1) delay his transplant 2) not provide good post transplant care. Our first appeal was denied by the insurance company and is now going to the company for a second level appeal. Our doctors have written letter outlining our son's critical condition.
If anyone has some insight into this problem, I would appreciate it. I'm about to write a final appeal letter.
thanks,
joan

mackenziesmom · Feb 28, 2009

My husband's company changed insurance carriers and they might make us change transplant centers. He's already been evaluated in Dallas (which is nearby) and is on the transplant list. The other local hospital they want us to use has no CF specialist and performs very few transplants on CF patients. Another hospital on their list is in another city. The center we've been using is highly rated and was recommended by our CF center. That's where they send their patients.
Anyone else face this problem? Any suggestions? We're afraid this change is going to 1) delay his transplant 2) not provide good post transplant care. Our first appeal was denied by the insurance company and is now going to the company for a second level appeal. Our doctors have written letter outlining our son's critical condition.
If anyone has some insight into this problem, I would appreciate it. I'm about to write a final appeal letter.
thanks,
joan

mackenziesmom · Feb 28, 2009

My husband's company changed insurance carriers and they might make us change transplant centers. He's already been evaluated in Dallas (which is nearby) and is on the transplant list. The other local hospital they want us to use has no CF specialist and performs very few transplants on CF patients. Another hospital on their list is in another city. The center we've been using is highly rated and was recommended by our CF center. That's where they send their patients.
 Anyone else face this problem? Any suggestions? We're afraid this change is going to 1) delay his transplant 2) not provide good post transplant care. Our first appeal was denied by the insurance company and is now going to the company for a second level appeal. Our doctors have written letter outlining our son's critical condition.
 If anyone has some insight into this problem, I would appreciate it. I'm about to write a final appeal letter.
 thanks,
 joan

Transplantmommy · Feb 28, 2009

Joan,
I am sorry that I cannot be of that much help but I can tell you that I went through the same thing. My insurance at work would not cover Massachusetts General Hospital and that is where I wanted to go since my brother-in-law lives in Manchester, NH and we would have a place to stay and not have to pay for a hotel. Well, my insurance company sent me a letter of the transplant clinics that they would pay for and most of them were in the lower part of the US (FL, TX, LA) and I live in NY. There was one in NY that they would pay for but I didn't want to go there because my CF doctor told me that he would not send me there. Well, one that was on the list was the Cleveland Clinic and my doctor was happy with that one, so that's where I went. Believe it or not, after I had already started my transplants at the CC, my insurance at work changed and the new insurance would pay for Mass General. I decided to stay with CC though because I was comfortable there and didn't want to change again. Anyway, in the end, I was VERY happy that my insurance would not pay for Mass General because I am thrilled with the results that I got from the Cleveland Clinic.

So, I have been there, but I went ahead with what the insurance said and I was happy with the results. I understand you not wanting to change since he has already been evaluated and everything. It's the frustrating part of it all. Go ahead and do the second appeal and see where it gets you. Hopefully you will get what you want but maybe in the meantime, you should go ahead and get your husband evaluated at one of the approved facilities so that you are not delaying things longer if the insurance denies the second appeal.

Good luck and I hope that things work out for the better.

Transplantmommy · Feb 28, 2009

Joan,
I am sorry that I cannot be of that much help but I can tell you that I went through the same thing. My insurance at work would not cover Massachusetts General Hospital and that is where I wanted to go since my brother-in-law lives in Manchester, NH and we would have a place to stay and not have to pay for a hotel. Well, my insurance company sent me a letter of the transplant clinics that they would pay for and most of them were in the lower part of the US (FL, TX, LA) and I live in NY. There was one in NY that they would pay for but I didn't want to go there because my CF doctor told me that he would not send me there. Well, one that was on the list was the Cleveland Clinic and my doctor was happy with that one, so that's where I went. Believe it or not, after I had already started my transplants at the CC, my insurance at work changed and the new insurance would pay for Mass General. I decided to stay with CC though because I was comfortable there and didn't want to change again. Anyway, in the end, I was VERY happy that my insurance would not pay for Mass General because I am thrilled with the results that I got from the Cleveland Clinic.

So, I have been there, but I went ahead with what the insurance said and I was happy with the results. I understand you not wanting to change since he has already been evaluated and everything. It's the frustrating part of it all. Go ahead and do the second appeal and see where it gets you. Hopefully you will get what you want but maybe in the meantime, you should go ahead and get your husband evaluated at one of the approved facilities so that you are not delaying things longer if the insurance denies the second appeal.

Good luck and I hope that things work out for the better.

Transplantmommy · Feb 28, 2009

Joan,
I am sorry that I cannot be of that much help but I can tell you that I went through the same thing. My insurance at work would not cover Massachusetts General Hospital and that is where I wanted to go since my brother-in-law lives in Manchester, NH and we would have a place to stay and not have to pay for a hotel. Well, my insurance company sent me a letter of the transplant clinics that they would pay for and most of them were in the lower part of the US (FL, TX, LA) and I live in NY. There was one in NY that they would pay for but I didn't want to go there because my CF doctor told me that he would not send me there. Well, one that was on the list was the Cleveland Clinic and my doctor was happy with that one, so that's where I went. Believe it or not, after I had already started my transplants at the CC, my insurance at work changed and the new insurance would pay for Mass General. I decided to stay with CC though because I was comfortable there and didn't want to change again. Anyway, in the end, I was VERY happy that my insurance would not pay for Mass General because I am thrilled with the results that I got from the Cleveland Clinic.

So, I have been there, but I went ahead with what the insurance said and I was happy with the results. I understand you not wanting to change since he has already been evaluated and everything. It's the frustrating part of it all. Go ahead and do the second appeal and see where it gets you. Hopefully you will get what you want but maybe in the meantime, you should go ahead and get your husband evaluated at one of the approved facilities so that you are not delaying things longer if the insurance denies the second appeal.

Good luck and I hope that things work out for the better.

Transplantmommy · Feb 28, 2009

Joan,
I am sorry that I cannot be of that much help but I can tell you that I went through the same thing. My insurance at work would not cover Massachusetts General Hospital and that is where I wanted to go since my brother-in-law lives in Manchester, NH and we would have a place to stay and not have to pay for a hotel. Well, my insurance company sent me a letter of the transplant clinics that they would pay for and most of them were in the lower part of the US (FL, TX, LA) and I live in NY. There was one in NY that they would pay for but I didn't want to go there because my CF doctor told me that he would not send me there. Well, one that was on the list was the Cleveland Clinic and my doctor was happy with that one, so that's where I went. Believe it or not, after I had already started my transplants at the CC, my insurance at work changed and the new insurance would pay for Mass General. I decided to stay with CC though because I was comfortable there and didn't want to change again. Anyway, in the end, I was VERY happy that my insurance would not pay for Mass General because I am thrilled with the results that I got from the Cleveland Clinic.

So, I have been there, but I went ahead with what the insurance said and I was happy with the results. I understand you not wanting to change since he has already been evaluated and everything. It's the frustrating part of it all. Go ahead and do the second appeal and see where it gets you. Hopefully you will get what you want but maybe in the meantime, you should go ahead and get your husband evaluated at one of the approved facilities so that you are not delaying things longer if the insurance denies the second appeal.

Good luck and I hope that things work out for the better.

Transplantmommy · Feb 28, 2009

Joan,
 I am sorry that I cannot be of that much help but I can tell you that I went through the same thing. My insurance at work would not cover Massachusetts General Hospital and that is where I wanted to go since my brother-in-law lives in Manchester, NH and we would have a place to stay and not have to pay for a hotel. Well, my insurance company sent me a letter of the transplant clinics that they would pay for and most of them were in the lower part of the US (FL, TX, LA) and I live in NY. There was one in NY that they would pay for but I didn't want to go there because my CF doctor told me that he would not send me there. Well, one that was on the list was the Cleveland Clinic and my doctor was happy with that one, so that's where I went. Believe it or not, after I had already started my transplants at the CC, my insurance at work changed and the new insurance would pay for Mass General. I decided to stay with CC though because I was comfortable there and didn't want to change again. Anyway, in the end, I was VERY happy that my insurance would not pay for Mass General because I am thrilled with the results that I got from the Cleveland Clinic.
 
 So, I have been there, but I went ahead with what the insurance said and I was happy with the results. I understand you not wanting to change since he has already been evaluated and everything. It's the frustrating part of it all. Go ahead and do the second appeal and see where it gets you. Hopefully you will get what you want but maybe in the meantime, you should go ahead and get your husband evaluated at one of the approved facilities so that you are not delaying things longer if the insurance denies the second appeal.
 
 Good luck and I hope that things work out for the better.

mackenziesmom · Mar 1, 2009

Thanks for the information, Patti.
I should have said the transplant is for my son, (who is 19)--not my husband. So your insurance let you stay where you were evaluated? It took more than a year to get my son on the transplant list. I don't think we have time (or the money) to go through another evaluation. I have thought about making an appointment though just to see what happens. It took two or three months to get an appointment where we are now.
joan

mackenziesmom · Mar 1, 2009

Thanks for the information, Patti.
I should have said the transplant is for my son, (who is 19)--not my husband. So your insurance let you stay where you were evaluated? It took more than a year to get my son on the transplant list. I don't think we have time (or the money) to go through another evaluation. I have thought about making an appointment though just to see what happens. It took two or three months to get an appointment where we are now.
joan

mackenziesmom · Mar 1, 2009

Thanks for the information, Patti.
I should have said the transplant is for my son, (who is 19)--not my husband. So your insurance let you stay where you were evaluated? It took more than a year to get my son on the transplant list. I don't think we have time (or the money) to go through another evaluation. I have thought about making an appointment though just to see what happens. It took two or three months to get an appointment where we are now.
joan

mackenziesmom · Mar 1, 2009

Thanks for the information, Patti.
I should have said the transplant is for my son, (who is 19)--not my husband. So your insurance let you stay where you were evaluated? It took more than a year to get my son on the transplant list. I don't think we have time (or the money) to go through another evaluation. I have thought about making an appointment though just to see what happens. It took two or three months to get an appointment where we are now.
joan

mackenziesmom · Mar 1, 2009

Thanks for the information, Patti.
 I should have said the transplant is for my son, (who is 19)--not my husband. So your insurance let you stay where you were evaluated? It took more than a year to get my son on the transplant list. I don't think we have time (or the money) to go through another evaluation. I have thought about making an appointment though just to see what happens. It took two or three months to get an appointment where we are now.
 joan

Transplantmommy · Mar 1, 2009

Sorry....read the post as it being your husband. LOL

Yes, after my insurance changed, they also covered the Cleveland Clinic, so I was able to stay there and I could have gone back to Mass General (where I never went in the first place anyway) if I wanted to. I decided that it would have been too much of a hassle, so I stayed right where I was.

As for going through another evaluation, the other hospital should take stuff that your son already had done into consideration and it shouldn't take as long as it originally did. I'm not saying that for certain though. But, I would think that all of the tests that needed to be performed, would not have to be performed again. The first place that he was evaluated at should be able to fax over the results to the new hospital. I hope that this helps!

Transplantmommy · Mar 1, 2009

Sorry....read the post as it being your husband. LOL

Yes, after my insurance changed, they also covered the Cleveland Clinic, so I was able to stay there and I could have gone back to Mass General (where I never went in the first place anyway) if I wanted to. I decided that it would have been too much of a hassle, so I stayed right where I was.

As for going through another evaluation, the other hospital should take stuff that your son already had done into consideration and it shouldn't take as long as it originally did. I'm not saying that for certain though. But, I would think that all of the tests that needed to be performed, would not have to be performed again. The first place that he was evaluated at should be able to fax over the results to the new hospital. I hope that this helps!

Transplantmommy · Mar 1, 2009

Sorry....read the post as it being your husband. LOL

Yes, after my insurance changed, they also covered the Cleveland Clinic, so I was able to stay there and I could have gone back to Mass General (where I never went in the first place anyway) if I wanted to. I decided that it would have been too much of a hassle, so I stayed right where I was.

As for going through another evaluation, the other hospital should take stuff that your son already had done into consideration and it shouldn't take as long as it originally did. I'm not saying that for certain though. But, I would think that all of the tests that needed to be performed, would not have to be performed again. The first place that he was evaluated at should be able to fax over the results to the new hospital. I hope that this helps!

Transplantmommy · Mar 1, 2009

Sorry....read the post as it being your husband. LOL

Yes, after my insurance changed, they also covered the Cleveland Clinic, so I was able to stay there and I could have gone back to Mass General (where I never went in the first place anyway) if I wanted to. I decided that it would have been too much of a hassle, so I stayed right where I was.

As for going through another evaluation, the other hospital should take stuff that your son already had done into consideration and it shouldn't take as long as it originally did. I'm not saying that for certain though. But, I would think that all of the tests that needed to be performed, would not have to be performed again. The first place that he was evaluated at should be able to fax over the results to the new hospital. I hope that this helps!

Transplantmommy · Mar 1, 2009

Sorry....read the post as it being your husband. LOL
 
 Yes, after my insurance changed, they also covered the Cleveland Clinic, so I was able to stay there and I could have gone back to Mass General (where I never went in the first place anyway) if I wanted to. I decided that it would have been too much of a hassle, so I stayed right where I was.
 
 As for going through another evaluation, the other hospital should take stuff that your son already had done into consideration and it shouldn't take as long as it originally did. I'm not saying that for certain though. But, I would think that all of the tests that needed to be performed, would not have to be performed again. The first place that he was evaluated at should be able to fax over the results to the new hospital. I hope that this helps!

Forced to change transplant center

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