Transitioning

[ChelsAnn]

Hey guys,

I'm new to this site and think this discussion board is one of the best things ever! Sorry, but I'm going to rant a little in my first post. Anyways, I'm nineteen and recently had to transition over the last summer to an adult pulmonologist... something I didn't really want to do. I've heard from some other CF'ers that they didn't have to transition and just remained with their pediatric doc and their children's hospital. Is this true? and if so... how were ya'll able to stay with your pedi doc? Although I really like my new doc, I recently went to my new adult hospital for a tuneup and had a really bad experience. I was placed on a completely different floor than where all the other CF patients go because I have cepacia and their hospital policy said I had to be on a different floor because of it (which I think is totally unreasonable and wrote an e-mail to the CEO and director of the CF Center there challenging their hospital policy). For one thing, before I have always been placed in a negative pressure room to prevent spreading my germs to other parts of the hospital... why couldn't they just place me in one on the CF floor. I was placed on a surgical floor with nurses who had no idea how to care for CF... not that they should have to since they're on a different floor! I really miss being in a children's hospital. I don't know what to do. Has anyone else had similar or difficult transitions to adult care? I don't understand why we have to transition anyway... I was told that it was CFF Guidelines. Any input would be greatly appreciated... Talk to ya'll later.

 

[ChelsAnn]

Hey guys,

I'm new to this site and think this discussion board is one of the best things ever! Sorry, but I'm going to rant a little in my first post. Anyways, I'm nineteen and recently had to transition over the last summer to an adult pulmonologist... something I didn't really want to do. I've heard from some other CF'ers that they didn't have to transition and just remained with their pediatric doc and their children's hospital. Is this true? and if so... how were ya'll able to stay with your pedi doc? Although I really like my new doc, I recently went to my new adult hospital for a tuneup and had a really bad experience. I was placed on a completely different floor than where all the other CF patients go because I have cepacia and their hospital policy said I had to be on a different floor because of it (which I think is totally unreasonable and wrote an e-mail to the CEO and director of the CF Center there challenging their hospital policy). For one thing, before I have always been placed in a negative pressure room to prevent spreading my germs to other parts of the hospital... why couldn't they just place me in one on the CF floor. I was placed on a surgical floor with nurses who had no idea how to care for CF... not that they should have to since they're on a different floor! I really miss being in a children's hospital. I don't know what to do. Has anyone else had similar or difficult transitions to adult care? I don't understand why we have to transition anyway... I was told that it was CFF Guidelines. Any input would be greatly appreciated... Talk to ya'll later.

 

[CowTown]

Hi Chelsey,
When I was 19 or 20 I was moved to a new location, an adult CF center too. I was a little hesitant but ended up liking it a lot better. They told me I would get better care there since they were more familar with adult CF issues. I liked it because you get your own room, unlike at the Children's Hospital. I too have to be separated though and wear a mask whenever I leave my room or anyone coming into my room has to wear a mask and or full gown so that my bugs aren't transfered and vise versa. I'm not up on what they do at my hospital for cepacia patients, but hopfeully yours will treat you better than that! That's great that your challenging their policy, because they should help make you feel as comfortbale as possible, not put you on a floor to yourself.

 

[CowTown]

Hi Chelsey,
When I was 19 or 20 I was moved to a new location, an adult CF center too. I was a little hesitant but ended up liking it a lot better. They told me I would get better care there since they were more familar with adult CF issues. I liked it because you get your own room, unlike at the Children's Hospital. I too have to be separated though and wear a mask whenever I leave my room or anyone coming into my room has to wear a mask and or full gown so that my bugs aren't transfered and vise versa. I'm not up on what they do at my hospital for cepacia patients, but hopfeully yours will treat you better than that! That's great that your challenging their policy, because they should help make you feel as comfortbale as possible, not put you on a floor to yourself.

 

[Jane]

Hi Chelsey,
Welcome to the site. I've been here for a week and I already feel that its like family.

At our Children's hospital, the patients w/ cepacia or dolosa (sp) ARE put on a different floor. They are also seen on different days at clinic. It seems a little extreme but its definately for the best. Two years ago there was an outbreak which caused this new system. It is extreme, but whatever works to keep everyone healthy!

My kids are still at Children's, but I'm very interested in the transitioning to adult units/hospitals.

jane

 

[Jane]

Hi Chelsey,
Welcome to the site. I've been here for a week and I already feel that its like family.

At our Children's hospital, the patients w/ cepacia or dolosa (sp) ARE put on a different floor. They are also seen on different days at clinic. It seems a little extreme but its definately for the best. Two years ago there was an outbreak which caused this new system. It is extreme, but whatever works to keep everyone healthy!

My kids are still at Children's, but I'm very interested in the transitioning to adult units/hospitals.

jane

 

[thelizardqueen]

Hi Chelsey,

I transitioned to the adult centre when I was 18 years old. I don't necessarily know if I'm getting better care at the adult centre. My adult doc is great, as is my nurse, and they do do a great job, but what I find I don't like, is tht they are not as "available" as the pedi team was. My mum used to be able to call the pedi team at all hours of the day with a question, and I'm lucky now if my CF nurse returns my call the very day I call her. It seems that the adult centre is more "busy" we'll say. I don't like the PFTs I do at the adult centre either. They're not as involved as the pedi ones were. I also find that my adult centre does not have the high tech equipement that pedi had. I guess this is because CF is more aggresivly treated as a child to prevent the condition getting any worse, and that once you're an adult they can be a bit lax. Maybe this is just me thogh. That being said - I do like my CF team here in adult, and wouldn't want anyone else. The reason for a CF trnasition is that Pedi CF docs are not as equiped as adult CF docs when it comes to treating an adult with CF. I would feel more comfortable with my adult doc then my pedi doc for a lot of adult issues.

 

[thelizardqueen]

Hi Chelsey,

I transitioned to the adult centre when I was 18 years old. I don't necessarily know if I'm getting better care at the adult centre. My adult doc is great, as is my nurse, and they do do a great job, but what I find I don't like, is tht they are not as "available" as the pedi team was. My mum used to be able to call the pedi team at all hours of the day with a question, and I'm lucky now if my CF nurse returns my call the very day I call her. It seems that the adult centre is more "busy" we'll say. I don't like the PFTs I do at the adult centre either. They're not as involved as the pedi ones were. I also find that my adult centre does not have the high tech equipement that pedi had. I guess this is because CF is more aggresivly treated as a child to prevent the condition getting any worse, and that once you're an adult they can be a bit lax. Maybe this is just me thogh. That being said - I do like my CF team here in adult, and wouldn't want anyone else. The reason for a CF trnasition is that Pedi CF docs are not as equiped as adult CF docs when it comes to treating an adult with CF. I would feel more comfortable with my adult doc then my pedi doc for a lot of adult issues.

 

[LoveShines4Austin]

Hi, welcome to the board! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Austin just turned 17 in December and we were told by some friends here in Redding, that we should switch to the adult doctors at UCDMC because they were awesome and took great care of you. At our last visit in January, we asked his peds. doctor about this and she appeared offended. She went on to tell us that if he was still having trouble monitoring his blood sugar (he also has CFRD) and was not sure if he could make his own appointments and deal with not having ME at his appointments, then he should not make the transition.

We have been very lucky to never have to have put Austin in the hospital for a tune-up, so we have never had to face the "discrimination" that you did. I am so sorry that happened to you. I was told that if he did get cepacia, he would have a private room, away from the other CF patients. I don't believe they meant that he would be put on a separate floor. I could be wrong.

If Austin has to continue to have a peds. doctors, I think we will have to request that one of the male docs spend time with him, for obvious reasons.

Take care and do what you, your family, and your doctors (as a collective unit) feel is best for you.

 

[LoveShines4Austin]

Hi, welcome to the board! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Austin just turned 17 in December and we were told by some friends here in Redding, that we should switch to the adult doctors at UCDMC because they were awesome and took great care of you. At our last visit in January, we asked his peds. doctor about this and she appeared offended. She went on to tell us that if he was still having trouble monitoring his blood sugar (he also has CFRD) and was not sure if he could make his own appointments and deal with not having ME at his appointments, then he should not make the transition.

We have been very lucky to never have to have put Austin in the hospital for a tune-up, so we have never had to face the "discrimination" that you did. I am so sorry that happened to you. I was told that if he did get cepacia, he would have a private room, away from the other CF patients. I don't believe they meant that he would be put on a separate floor. I could be wrong.

If Austin has to continue to have a peds. doctors, I think we will have to request that one of the male docs spend time with him, for obvious reasons.

Take care and do what you, your family, and your doctors (as a collective unit) feel is best for you.

 

[thelizardqueen]

Whether you stay with Pedi or switch to the adult dept is completly up to you. I don't think that your Pedi specialist should have been offended. Adult CF specialists can take care of stuff that Pedi's can't. Pedi's deal with childrens's issues, not adult issues with CF, so I don't think they are quite as knowledgable. Yes, you won't be able to go to the appts with him and first, and he will have to make his own appts, but once he's gotten the hang of it, you can come to appts. The point is, is that he will be an adult, and adults go to their own appts and don't have parents come with them. They make their own appts and don't have their parents do it for them. That's the point of being an adult. He can get an adult diabetic specailist as well. I think making transitions is a great idea. He can't be a kid forever and go to a kid doc forever, he should be able to make some adult decisions himself.

 

[thelizardqueen]

Whether you stay with Pedi or switch to the adult dept is completly up to you. I don't think that your Pedi specialist should have been offended. Adult CF specialists can take care of stuff that Pedi's can't. Pedi's deal with childrens's issues, not adult issues with CF, so I don't think they are quite as knowledgable. Yes, you won't be able to go to the appts with him and first, and he will have to make his own appts, but once he's gotten the hang of it, you can come to appts. The point is, is that he will be an adult, and adults go to their own appts and don't have parents come with them. They make their own appts and don't have their parents do it for them. That's the point of being an adult. He can get an adult diabetic specailist as well. I think making transitions is a great idea. He can't be a kid forever and go to a kid doc forever, he should be able to make some adult decisions himself.

 

[LoveShines4Austin]

Liz,

I agree, and he's not ready. We live 3 hours away from the clinic and we try to schedule his appointments for the same day and as late as possible. It often takes several weeks and several phone calls before the clinic can synchronize the visits. It's a pain in the butt, even for me. He's not the one driving to the clinic or having to schedule his appointments around things I have already committed to, so I'd have to be there for approval of the times they are offering. If we lived closer and he drove, I agree, he'd have a better chance at taking care of all that on his own, as an adult. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Soon, I will have him answering the calls and taking notes of the time and if they don't work, he'll have to call back and change the times.

By the way, I LOVE your picture!

 

[LoveShines4Austin]

Liz,

I agree, and he's not ready. We live 3 hours away from the clinic and we try to schedule his appointments for the same day and as late as possible. It often takes several weeks and several phone calls before the clinic can synchronize the visits. It's a pain in the butt, even for me. He's not the one driving to the clinic or having to schedule his appointments around things I have already committed to, so I'd have to be there for approval of the times they are offering. If we lived closer and he drove, I agree, he'd have a better chance at taking care of all that on his own, as an adult. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Soon, I will have him answering the calls and taking notes of the time and if they don't work, he'll have to call back and change the times.

By the way, I LOVE your picture!

 

[thelizardqueen]

Thanks Laurel!

I agree, you'll know when Austin is ready to take on this responsibility. Its a lot to take in and manage, but it'll be easier for him to do, once he's got a car like you said, etc. Living so far away from clinic can't be easy either. I like about a half hour from mine, so I tend to keep forgetting that a lot of people have to come from out of town for appts. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

Thanks Laurel!

I agree, you'll know when Austin is ready to take on this responsibility. Its a lot to take in and manage, but it'll be easier for him to do, once he's got a car like you said, etc. Living so far away from clinic can't be easy either. I like about a half hour from mine, so I tend to keep forgetting that a lot of people have to come from out of town for appts. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

That is great that you wrote to the hospital admin. I hope they write back to you and give you better accomodations with nursing staff that are able to treat you the way you should be treated. Perhaps if you need to go back they will get to knowing you better. I have found out the hard way if you do not like a nurse be nice because if you are not they can make your hospital stay a bit bitter. I would only complain when I was far away from the hospital. Sometimes when a patient is really kind the staff will treat you that much better.

 

[anonymous]

That is great that you wrote to the hospital admin. I hope they write back to you and give you better accomodations with nursing staff that are able to treat you the way you should be treated. Perhaps if you need to go back they will get to knowing you better. I have found out the hard way if you do not like a nurse be nice because if you are not they can make your hospital stay a bit bitter. I would only complain when I was far away from the hospital. Sometimes when a patient is really kind the staff will treat you that much better.

 

[Alyssa]

Well, for what it's worth, here at Children's in Seattle, we were told my kids could stay with their doc/facility until they turned 22 years old -- and we plan on doing just that !

 

[Alyssa]

Well, for what it's worth, here at Children's in Seattle, we were told my kids could stay with their doc/facility until they turned 22 years old -- and we plan on doing just that !