Update on Jacob

CHERIE4HARTS

New member
Hi Everyone,
Thanks for the feedback regarding a new port for my son, Jacob. He has decided not to go ahead with a new port, but is being very positive that he will be healthy after having the old one removed, so will wait until he absoutley needs the new one.
We are originally from WI, and he has been at the University Hospital at Madison for 14 years. My husband and I moved to Las Vegas three years ago for the WARM weather, and Jacob moved with us. He decided that he wanted to go back to WI last fall, and has been living with a relative back there. He has been sick ever since, and we have really tried to get him back to the warm, dry weather here in Vegas. He has decided to move back here, as soon as he is out of the hospital, and he will be moving in with his older sister, who lives out in Vegas also. (they get along and she needed another roommate anyway). I think he realizes that family suppoort is very important in staying positive and healthy.
Anyway........., my reason for all this info, is that the clinic here in Vegas is not so great. It had a Dr that was very good when we came out, but he died suddenly,and since then, big problems. Jacob and I have been wondering about going to Denver, where we have contacts at Jewish National, of maybe to California? We don't know how the Medicaid or Medicare Insurance will cover, or will he need to stay in Nevada? I have seen postings about people being on the transplant list in more than one state, however, can we do that for all other CF treatment? His only insurance is the Medicaid and Medicare- he is on SSI and SSD. He is hoping that when he is feeling good, now would be the time to maybe make the switch to the best clinic/Dr possible, where he can stay. If out of state, he will just fly or drive out of Vegas.
Thanks for any feeback and views! I love hearing from you all!
Cherie mom to Jacob 23 w/ cf - mrsa-
 

CHERIE4HARTS

New member
Hi Everyone,
Thanks for the feedback regarding a new port for my son, Jacob. He has decided not to go ahead with a new port, but is being very positive that he will be healthy after having the old one removed, so will wait until he absoutley needs the new one.
We are originally from WI, and he has been at the University Hospital at Madison for 14 years. My husband and I moved to Las Vegas three years ago for the WARM weather, and Jacob moved with us. He decided that he wanted to go back to WI last fall, and has been living with a relative back there. He has been sick ever since, and we have really tried to get him back to the warm, dry weather here in Vegas. He has decided to move back here, as soon as he is out of the hospital, and he will be moving in with his older sister, who lives out in Vegas also. (they get along and she needed another roommate anyway). I think he realizes that family suppoort is very important in staying positive and healthy.
Anyway........., my reason for all this info, is that the clinic here in Vegas is not so great. It had a Dr that was very good when we came out, but he died suddenly,and since then, big problems. Jacob and I have been wondering about going to Denver, where we have contacts at Jewish National, of maybe to California? We don't know how the Medicaid or Medicare Insurance will cover, or will he need to stay in Nevada? I have seen postings about people being on the transplant list in more than one state, however, can we do that for all other CF treatment? His only insurance is the Medicaid and Medicare- he is on SSI and SSD. He is hoping that when he is feeling good, now would be the time to maybe make the switch to the best clinic/Dr possible, where he can stay. If out of state, he will just fly or drive out of Vegas.
Thanks for any feeback and views! I love hearing from you all!
Cherie mom to Jacob 23 w/ cf - mrsa-
 

CHERIE4HARTS

New member
Hi Everyone,
Thanks for the feedback regarding a new port for my son, Jacob. He has decided not to go ahead with a new port, but is being very positive that he will be healthy after having the old one removed, so will wait until he absoutley needs the new one.
We are originally from WI, and he has been at the University Hospital at Madison for 14 years. My husband and I moved to Las Vegas three years ago for the WARM weather, and Jacob moved with us. He decided that he wanted to go back to WI last fall, and has been living with a relative back there. He has been sick ever since, and we have really tried to get him back to the warm, dry weather here in Vegas. He has decided to move back here, as soon as he is out of the hospital, and he will be moving in with his older sister, who lives out in Vegas also. (they get along and she needed another roommate anyway). I think he realizes that family suppoort is very important in staying positive and healthy.
Anyway........., my reason for all this info, is that the clinic here in Vegas is not so great. It had a Dr that was very good when we came out, but he died suddenly,and since then, big problems. Jacob and I have been wondering about going to Denver, where we have contacts at Jewish National, of maybe to California? We don't know how the Medicaid or Medicare Insurance will cover, or will he need to stay in Nevada? I have seen postings about people being on the transplant list in more than one state, however, can we do that for all other CF treatment? His only insurance is the Medicaid and Medicare- he is on SSI and SSD. He is hoping that when he is feeling good, now would be the time to maybe make the switch to the best clinic/Dr possible, where he can stay. If out of state, he will just fly or drive out of Vegas.
Thanks for any feeback and views! I love hearing from you all!
Cherie mom to Jacob 23 w/ cf - mrsa-
 

barbc888

New member
Hi Cherie,

I go to a good clinic in northern CA, Sacramento to be exact. Wasn't sure if you meant that that was an option when you mentioned California. I go to one of the CF clinics at UC Davis. I'll give you more info if you're interested... let me know. California has a program funded through the state called GHPP (genetically handicapped persons program) and they pay for most CF expenses that are not covered through your regular insurance. if Jacob's on medicaid or medical, that program could be very beneficial for him. But if he's living in Nevada and commuting to his appts., that wouldn't be an option of course... I don't know if this helps, but that's my 2 cents. Sounds like you're in a pickle right now, and realize it must be stressful. I hope it all works out.

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Cherie,

I go to a good clinic in northern CA, Sacramento to be exact. Wasn't sure if you meant that that was an option when you mentioned California. I go to one of the CF clinics at UC Davis. I'll give you more info if you're interested... let me know. California has a program funded through the state called GHPP (genetically handicapped persons program) and they pay for most CF expenses that are not covered through your regular insurance. if Jacob's on medicaid or medical, that program could be very beneficial for him. But if he's living in Nevada and commuting to his appts., that wouldn't be an option of course... I don't know if this helps, but that's my 2 cents. Sounds like you're in a pickle right now, and realize it must be stressful. I hope it all works out.

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Cherie,

I go to a good clinic in northern CA, Sacramento to be exact. Wasn't sure if you meant that that was an option when you mentioned California. I go to one of the CF clinics at UC Davis. I'll give you more info if you're interested... let me know. California has a program funded through the state called GHPP (genetically handicapped persons program) and they pay for most CF expenses that are not covered through your regular insurance. if Jacob's on medicaid or medical, that program could be very beneficial for him. But if he's living in Nevada and commuting to his appts., that wouldn't be an option of course... I don't know if this helps, but that's my 2 cents. Sounds like you're in a pickle right now, and realize it must be stressful. I hope it all works out.

Barbara
40 w/CF & CFRD
 

Kelli

New member
Glad to hear that he made a decision and hopefully he will feel well in Vegas. They can always do 'little IV's' for him or get a picc line or something.

Hope things continue to improve for him.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
 

Kelli

New member
Glad to hear that he made a decision and hopefully he will feel well in Vegas. They can always do 'little IV's' for him or get a picc line or something.

Hope things continue to improve for him.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
 

Kelli

New member
Glad to hear that he made a decision and hopefully he will feel well in Vegas. They can always do 'little IV's' for him or get a picc line or something.

Hope things continue to improve for him.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI
 
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