Hi I am married to a cfer and things have not been going well lately. My wife goes into the hospital around every 2 to 3 weeks and our Dr. has made us and appt at UAB. Her FEV 1 top is 51 but after 2 weeks it goes back down to low 30s or high 20s. What the kicker is is that her left lung sounds great but the right one is the bad one. So our Dr. said they may be able to remove the bad one then put in some sort of spacer, but he is not sure. We are just kind of confused about where we are in the whole process, or if some one else has had this problem, or what happens when you go on the list? I basiclly have so many question about this process I could scream so any help advice would be great!
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- Thread starter psymon
- Start date
Hi I am married to a cfer and things have not been going well lately. My wife goes into the hospital around every 2 to 3 weeks and our Dr. has made us and appt at UAB. Her FEV 1 top is 51 but after 2 weeks it goes back down to low 30s or high 20s. What the kicker is is that her left lung sounds great but the right one is the bad one. So our Dr. said they may be able to remove the bad one then put in some sort of spacer, but he is not sure. We are just kind of confused about where we are in the whole process, or if some one else has had this problem, or what happens when you go on the list? I basiclly have so many question about this process I could scream so any help advice would be great!
Hi I am married to a cfer and things have not been going well lately. My wife goes into the hospital around every 2 to 3 weeks and our Dr. has made us and appt at UAB. Her FEV 1 top is 51 but after 2 weeks it goes back down to low 30s or high 20s. What the kicker is is that her left lung sounds great but the right one is the bad one. So our Dr. said they may be able to remove the bad one then put in some sort of spacer, but he is not sure. We are just kind of confused about where we are in the whole process, or if some one else has had this problem, or what happens when you go on the list? I basiclly have so many question about this process I could scream so any help advice would be great!
Hi I am married to a cfer and things have not been going well lately. My wife goes into the hospital around every 2 to 3 weeks and our Dr. has made us and appt at UAB. Her FEV 1 top is 51 but after 2 weeks it goes back down to low 30s or high 20s. What the kicker is is that her left lung sounds great but the right one is the bad one. So our Dr. said they may be able to remove the bad one then put in some sort of spacer, but he is not sure. We are just kind of confused about where we are in the whole process, or if some one else has had this problem, or what happens when you go on the list? I basiclly have so many question about this process I could scream so any help advice would be great!
Hi I am married to a cfer and things have not been going well lately. My wife goes into the hospital around every 2 to 3 weeks and our Dr. has made us and appt at UAB. Her FEV 1 top is 51 but after 2 weeks it goes back down to low 30s or high 20s. What the kicker is is that her left lung sounds great but the right one is the bad one. So our Dr. said they may be able to remove the bad one then put in some sort of spacer, but he is not sure. We are just kind of confused about where we are in the whole process, or if some one else has had this problem, or what happens when you go on the list? I basiclly have so many question about this process I could scream so any help advice would be great!
coltsfan715
New member
I am sorry to read about your situation. I do not have experience with this particular problem, but think it is good that your doc is refering you and your wife to look into transplant - if that is the case. The transplant team that you see will be able to answer all of the questions you have better than any of us here probably.
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
coltsfan715
New member
I am sorry to read about your situation. I do not have experience with this particular problem, but think it is good that your doc is refering you and your wife to look into transplant - if that is the case. The transplant team that you see will be able to answer all of the questions you have better than any of us here probably.
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
coltsfan715
New member
I am sorry to read about your situation. I do not have experience with this particular problem, but think it is good that your doc is refering you and your wife to look into transplant - if that is the case. The transplant team that you see will be able to answer all of the questions you have better than any of us here probably.
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
coltsfan715
New member
I am sorry to read about your situation. I do not have experience with this particular problem, but think it is good that your doc is refering you and your wife to look into transplant - if that is the case. The transplant team that you see will be able to answer all of the questions you have better than any of us here probably.
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
coltsfan715
New member
I am sorry to read about your situation. I do not have experience with this particular problem, but think it is good that your doc is refering you and your wife to look into transplant - if that is the case. The transplant team that you see will be able to answer all of the questions you have better than any of us here probably.
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
I will say from my experience the testing is alot to go through and the waiting can be trying mentally and physically, but it is worth it. I would just start making up a list of questions - ANY and EVERY question you think of add it to the list. Then take that list with you to your first appointment. Ask them all the questions you need to get answers too even if you think they are unimportant or silly. If you thought of it it is worth asking.
Also to add if they do not want to answer all of your questions maybe talk to your doc about going to another center - one that will take the time with you and WILL answer your questions.
Best Of Luck to You and I hope that you are able to figure out a solution.
Best Wishes,
Lindsey
I have not had this exact situation but know many who have.
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
I have not had this exact situation but know many who have.
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
I have not had this exact situation but know many who have.
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
I have not had this exact situation but know many who have.
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
I have not had this exact situation but know many who have.
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com
Does your wife go to an accredited CF Center, or does she see a pulmo?
She should see a CF doctor to get the facts for CF folks. Having a lung removed is a drastic move and not sure than many centers do that.
What about lung transplant? Sounds like she gets in the range at times.
Joanne Schum
luckylungsforjo@aol.com