follow up appts

[musclemania70]

How often are follow up appts? Weekly? Monthly?

If the center is 4 hours away, are the appts still weekly?
What happens if something acute occurs? Where do you go, the local hospital?

do you 'trade in' your cf nurse hotline for a transplant nurse hotline? (some sarcasm there)

thx

 

[musclemania70]

How often are follow up appts? Weekly? Monthly?

If the center is 4 hours away, are the appts still weekly?
What happens if something acute occurs? Where do you go, the local hospital?

do you 'trade in' your cf nurse hotline for a transplant nurse hotline? (some sarcasm there)

thx

 

[musclemania70]

How often are follow up appts? Weekly? Monthly?
<br />
<br />If the center is 4 hours away, are the appts still weekly?
<br />What happens if something acute occurs? Where do you go, the local hospital?
<br />
<br />do you 'trade in' your cf nurse hotline for a transplant nurse hotline? (some sarcasm there)
<br />
<br />thx

 

[NYCLawGirl]

short answer: depends on the center.

at col pres you have to stay close to the center for 3 months post-discharge and you are seen weekly, no exceptions. from 3-6 months, give or take, you are seen every other week. then they move you to once a month and then once every 3 months and finally it's once every 6 months or so, i think.

relationships with CF docs post-tx vary too, but i think that has more to do with your CF doctor's rules than your tx team. most people continue to see a CF doc occasionally. some centers continue to require a once every 2-3 months schedule b/c that's what the CFF recommends for all CF patients. my CF doc sees post-tx patients once every 6 months to a year or any time we have digestive/other CF-related issues. she continues to handle scripts for all enzymes, etc. pretty much everything else is done by the tx team. if i were sick, i would definitely call my tx team.

i live in the same city as my tx team and tx and CF are in the same hospital. for people who travel for a tx center their CF doc might remain their primary care doc. again, i think there's a lot of variation depending on the patient and the doctor.

 

[NYCLawGirl]

short answer: depends on the center.

at col pres you have to stay close to the center for 3 months post-discharge and you are seen weekly, no exceptions. from 3-6 months, give or take, you are seen every other week. then they move you to once a month and then once every 3 months and finally it's once every 6 months or so, i think.

relationships with CF docs post-tx vary too, but i think that has more to do with your CF doctor's rules than your tx team. most people continue to see a CF doc occasionally. some centers continue to require a once every 2-3 months schedule b/c that's what the CFF recommends for all CF patients. my CF doc sees post-tx patients once every 6 months to a year or any time we have digestive/other CF-related issues. she continues to handle scripts for all enzymes, etc. pretty much everything else is done by the tx team. if i were sick, i would definitely call my tx team.

i live in the same city as my tx team and tx and CF are in the same hospital. for people who travel for a tx center their CF doc might remain their primary care doc. again, i think there's a lot of variation depending on the patient and the doctor.

 

[NYCLawGirl]

short answer: depends on the center.
<br />
<br />at col pres you have to stay close to the center for 3 months post-discharge and you are seen weekly, no exceptions. from 3-6 months, give or take, you are seen every other week. then they move you to once a month and then once every 3 months and finally it's once every 6 months or so, i think.
<br />
<br />relationships with CF docs post-tx vary too, but i think that has more to do with your CF doctor's rules than your tx team. most people continue to see a CF doc occasionally. some centers continue to require a once every 2-3 months schedule b/c that's what the CFF recommends for all CF patients. my CF doc sees post-tx patients once every 6 months to a year or any time we have digestive/other CF-related issues. she continues to handle scripts for all enzymes, etc. pretty much everything else is done by the tx team. if i were sick, i would definitely call my tx team.
<br />
<br />i live in the same city as my tx team and tx and CF are in the same hospital. for people who travel for a tx center their CF doc might remain their primary care doc. again, i think there's a lot of variation depending on the patient and the doctor.

 

[CountryGirl]

At first I had to live across the street from the hospital for three months. During that time my appointments went from twice a week to once a week to once every other week and so on. After that it was once a month and then once every two then every three and it stayed at every three months for a year. After that I just went every 6 months but then I got sick again and they got more frequent and back to every 3 months. I live out of state though and that was just going back to my transplant center.

When I was sick or for regular appointments I went to my CF center, but they didnt start or take away anything without calling my tx dr first. They keep in constant touch!

If there was an emergency question I had, like I got a fever or something, Stanford gave me a phone number to call their TX Dr on call and you actually talk to the dr after hrs, not your tx nurse.

 

[CountryGirl]

At first I had to live across the street from the hospital for three months. During that time my appointments went from twice a week to once a week to once every other week and so on. After that it was once a month and then once every two then every three and it stayed at every three months for a year. After that I just went every 6 months but then I got sick again and they got more frequent and back to every 3 months. I live out of state though and that was just going back to my transplant center.

When I was sick or for regular appointments I went to my CF center, but they didnt start or take away anything without calling my tx dr first. They keep in constant touch!

If there was an emergency question I had, like I got a fever or something, Stanford gave me a phone number to call their TX Dr on call and you actually talk to the dr after hrs, not your tx nurse.

 

[CountryGirl]

At first I had to live across the street from the hospital for three months. During that time my appointments went from twice a week to once a week to once every other week and so on. After that it was once a month and then once every two then every three and it stayed at every three months for a year. After that I just went every 6 months but then I got sick again and they got more frequent and back to every 3 months. I live out of state though and that was just going back to my transplant center.
<br />
<br />When I was sick or for regular appointments I went to my CF center, but they didnt start or take away anything without calling my tx dr first. They keep in constant touch!
<br />
<br />If there was an emergency question I had, like I got a fever or something, Stanford gave me a phone number to call their TX Dr on call and you actually talk to the dr after hrs, not your tx nurse.

 

[Transplantmommy]

Immediately after the transplant I had to stay in the area and had appointments every week, and sometimes twice a week if something wasn't right with my blood work. I was told that I would have to stay in the Cleveland area for 6-8 weeks (because I live 6 hours away) but I ended up going home just 2.5 weeks after being discharged from the hospital.

I think that I went out every two weeks after that, then once a month, then every 3 months, and I think at about a year and a half, they let me go every 6 months. I did go a little more frequently in between there because I got c-diff and had to have my large intestine removed, and then two more surgeries after that. I'm 3.5 years post and I still go every 6 months. But, I get blood work done at my local hospital every 6 weeks.

For anything not related to transplant, if it's an emergency, I go to my local hospital. I have gone to my local ER for the c-diff initially, dehydration, very heavy menstral bleeding, and Bells Palsy. I did also go for a bowel obstruction, but I ended up in Cleveland for that one. I have kept my docs in Cleveland up to date on all of this that has happened too. And, whichever doctor I see for an emergency, I have them call my docs in Cleveland to make sure that the treatment regimen is ok.

As for your CF doc, that will really depend. My CF clinic says that they normally don't see their CF patients anymore after they have a tx. However, my docs in Cleveland want me to keep up with my CF doc and have him handle the GI side of things. So, I see my CF doc every 6 months. I actually have it staggered to where I see one or the other every 3 months...CF doc in Jan and Jul and Tx clinic in April and Oct.

It may seem like a lot to deal with, but I would rather be here and dealing with all of it compared to the definite outcome of not getting a tx. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Transplantmommy]

Immediately after the transplant I had to stay in the area and had appointments every week, and sometimes twice a week if something wasn't right with my blood work. I was told that I would have to stay in the Cleveland area for 6-8 weeks (because I live 6 hours away) but I ended up going home just 2.5 weeks after being discharged from the hospital.

I think that I went out every two weeks after that, then once a month, then every 3 months, and I think at about a year and a half, they let me go every 6 months. I did go a little more frequently in between there because I got c-diff and had to have my large intestine removed, and then two more surgeries after that. I'm 3.5 years post and I still go every 6 months. But, I get blood work done at my local hospital every 6 weeks.

For anything not related to transplant, if it's an emergency, I go to my local hospital. I have gone to my local ER for the c-diff initially, dehydration, very heavy menstral bleeding, and Bells Palsy. I did also go for a bowel obstruction, but I ended up in Cleveland for that one. I have kept my docs in Cleveland up to date on all of this that has happened too. And, whichever doctor I see for an emergency, I have them call my docs in Cleveland to make sure that the treatment regimen is ok.

As for your CF doc, that will really depend. My CF clinic says that they normally don't see their CF patients anymore after they have a tx. However, my docs in Cleveland want me to keep up with my CF doc and have him handle the GI side of things. So, I see my CF doc every 6 months. I actually have it staggered to where I see one or the other every 3 months...CF doc in Jan and Jul and Tx clinic in April and Oct.

It may seem like a lot to deal with, but I would rather be here and dealing with all of it compared to the definite outcome of not getting a tx. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Transplantmommy]

Immediately after the transplant I had to stay in the area and had appointments every week, and sometimes twice a week if something wasn't right with my blood work. I was told that I would have to stay in the Cleveland area for 6-8 weeks (because I live 6 hours away) but I ended up going home just 2.5 weeks after being discharged from the hospital.
<br />
<br />I think that I went out every two weeks after that, then once a month, then every 3 months, and I think at about a year and a half, they let me go every 6 months. I did go a little more frequently in between there because I got c-diff and had to have my large intestine removed, and then two more surgeries after that. I'm 3.5 years post and I still go every 6 months. But, I get blood work done at my local hospital every 6 weeks.
<br />
<br />For anything not related to transplant, if it's an emergency, I go to my local hospital. I have gone to my local ER for the c-diff initially, dehydration, very heavy menstral bleeding, and Bells Palsy. I did also go for a bowel obstruction, but I ended up in Cleveland for that one. I have kept my docs in Cleveland up to date on all of this that has happened too. And, whichever doctor I see for an emergency, I have them call my docs in Cleveland to make sure that the treatment regimen is ok.
<br />
<br />As for your CF doc, that will really depend. My CF clinic says that they normally don't see their CF patients anymore after they have a tx. However, my docs in Cleveland want me to keep up with my CF doc and have him handle the GI side of things. So, I see my CF doc every 6 months. I actually have it staggered to where I see one or the other every 3 months...CF doc in Jan and Jul and Tx clinic in April and Oct.
<br />
<br />It may seem like a lot to deal with, but I would rather be here and dealing with all of it compared to the definite outcome of not getting a tx. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[summer732]

I am from Jersey and received my transplant in New Orleans. We lived about five minutes from the hospital and I started with follow up appointments 2x a week. Then 1x a week. Then 1x a month until I left. I stayed in New Orleans for 4 months after my transplant. I was so close to the hospital though that I could go there if something was really wrong. I am coming up to 6 years post transplant and I am on an every 3 months schedule at UPenn. I also get bloodwork once every 4 to 6 weeks in NYC at a Quest and just correspond with the doctors on what they want me to do. I no longer see my CF team as I just don't see a reason too. I'm fine with managing my enzymes at this point and they don't mind a call from me from time to time if I have questions. I also see my endo every 6 months and my ENT every 3 months. The one time I had an emergency (I had a mucous plug that I could not cough out), I went to the emergency room at the hospital my sister works out. After that fiasco, I now keep a nebulizer machine, some albuterol and hypertonic saline available in case I need it. Other than that, if something is wrong, I prefer to take the ride to Philly.

 

[summer732]

I am from Jersey and received my transplant in New Orleans. We lived about five minutes from the hospital and I started with follow up appointments 2x a week. Then 1x a week. Then 1x a month until I left. I stayed in New Orleans for 4 months after my transplant. I was so close to the hospital though that I could go there if something was really wrong. I am coming up to 6 years post transplant and I am on an every 3 months schedule at UPenn. I also get bloodwork once every 4 to 6 weeks in NYC at a Quest and just correspond with the doctors on what they want me to do. I no longer see my CF team as I just don't see a reason too. I'm fine with managing my enzymes at this point and they don't mind a call from me from time to time if I have questions. I also see my endo every 6 months and my ENT every 3 months. The one time I had an emergency (I had a mucous plug that I could not cough out), I went to the emergency room at the hospital my sister works out. After that fiasco, I now keep a nebulizer machine, some albuterol and hypertonic saline available in case I need it. Other than that, if something is wrong, I prefer to take the ride to Philly.

 

[summer732]

I am from Jersey and received my transplant in New Orleans. We lived about five minutes from the hospital and I started with follow up appointments 2x a week. Then 1x a week. Then 1x a month until I left. I stayed in New Orleans for 4 months after my transplant. I was so close to the hospital though that I could go there if something was really wrong. I am coming up to 6 years post transplant and I am on an every 3 months schedule at UPenn. I also get bloodwork once every 4 to 6 weeks in NYC at a Quest and just correspond with the doctors on what they want me to do. I no longer see my CF team as I just don't see a reason too. I'm fine with managing my enzymes at this point and they don't mind a call from me from time to time if I have questions. I also see my endo every 6 months and my ENT every 3 months. The one time I had an emergency (I had a mucous plug that I could not cough out), I went to the emergency room at the hospital my sister works out. After that fiasco, I now keep a nebulizer machine, some albuterol and hypertonic saline available in case I need it. Other than that, if something is wrong, I prefer to take the ride to Philly.

 

[Marjolein]

I think it depends on how are you doing post tx.
My center does ones a week appointments for the first 6 weeks I think. But I went there ones week for 3 weeks I think and after that it was 2 weeks for a few times and soon it got ones a month. Just because I was very stable. I live 3 hours away. And also my team trusted me to call whenever I had the slightest feeling something could be wrong.

After that it was ones every 3 months and it stayed that way. Around my tx date I get to see my one of the tx doctors and 6 months later too. The months in between, so lets say 3 and 9 months after my tx date I see a nurse-practitioner (they can always call a doctor to come in an check something). They always do bloodwork and pft's, x-rays twice a year. And different tests with my yearly check-up around tx date.

 

[Marjolein]

I think it depends on how are you doing post tx.
My center does ones a week appointments for the first 6 weeks I think. But I went there ones week for 3 weeks I think and after that it was 2 weeks for a few times and soon it got ones a month. Just because I was very stable. I live 3 hours away. And also my team trusted me to call whenever I had the slightest feeling something could be wrong.

After that it was ones every 3 months and it stayed that way. Around my tx date I get to see my one of the tx doctors and 6 months later too. The months in between, so lets say 3 and 9 months after my tx date I see a nurse-practitioner (they can always call a doctor to come in an check something). They always do bloodwork and pft's, x-rays twice a year. And different tests with my yearly check-up around tx date.

 

[Marjolein]

I think it depends on how are you doing post tx.
<br />My center does ones a week appointments for the first 6 weeks I think. But I went there ones week for 3 weeks I think and after that it was 2 weeks for a few times and soon it got ones a month. Just because I was very stable. I live 3 hours away. And also my team trusted me to call whenever I had the slightest feeling something could be wrong.
<br />
<br />After that it was ones every 3 months and it stayed that way. Around my tx date I get to see my one of the tx doctors and 6 months later too. The months in between, so lets say 3 and 9 months after my tx date I see a nurse-practitioner (they can always call a doctor to come in an check something). They always do bloodwork and pft's, x-rays twice a year. And different tests with my yearly check-up around tx date.