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Childrens/Brigham & Womens Boston
- Thread starter anonymous
- Start date
Hi Caitlin,
I see Dr. Donovan at Children's, and have recently gone through an outpatient cleanout using the Brigham. I haven't spent any nights at the Brigham, but I had my PICC placed there.
I am not sure why they are doing this - I think there is a vocal part of the adult patient population that really has a problem with being treated at Children's, particularly on an inpatient basis, so these changes are in response to that. HOWEVER, logistically, I don't think it makes much sense at all. The hospitals are not set up to coordinate care well, there are no CF specialists within the Brigham, so all that happens is Neelie walks over from Children's into the Brigham to meet patients.
I do think that there are some advantages - for example : the hospitals have very different protocols - the Children's protocols concerning how PICCs are placed are based on children patients, and Brigham's is designed for adults - this makes sense... in the past, at childrens, I had a small diameter PICC placed in my elbow - I'm an adult, this placement makes no sense. At the Brigham, I received a wider diameter PICC, and had it placed between my bicep and tricep, which is MUCH easier to live with, doesn't constrict range of motion, has less risk of infection, and is healthier for my veins. It was far more uncomfortable to place this line, and they hit a nerve on the way in, which hurt like hell, so I can see why this placement isn't done with kids.
Overall, because my general office visits aren't moving, and really, the providers seeing us aren't changing, I am comfortable with this switch; but I don't understand why they just can't make separate protocols for adult CF patients within Childrens. IF they really want to make the transition to the Brigham successful they will have to do a much better job coordinating patients between the two hospitals - for example, why aren't they using EMR's??? (Electronic Medical Records) This is Harvard for gods sake! why are we still using folders?? anyway, I won't rant...
I also don't understand what the big deal was in the first place... I liked the free laptop at Childrens!! (which will be absent in Brigham inpatient stays)
Just my two cents...
Chris
25 w/CF
I see Dr. Donovan at Children's, and have recently gone through an outpatient cleanout using the Brigham. I haven't spent any nights at the Brigham, but I had my PICC placed there.
I am not sure why they are doing this - I think there is a vocal part of the adult patient population that really has a problem with being treated at Children's, particularly on an inpatient basis, so these changes are in response to that. HOWEVER, logistically, I don't think it makes much sense at all. The hospitals are not set up to coordinate care well, there are no CF specialists within the Brigham, so all that happens is Neelie walks over from Children's into the Brigham to meet patients.
I do think that there are some advantages - for example : the hospitals have very different protocols - the Children's protocols concerning how PICCs are placed are based on children patients, and Brigham's is designed for adults - this makes sense... in the past, at childrens, I had a small diameter PICC placed in my elbow - I'm an adult, this placement makes no sense. At the Brigham, I received a wider diameter PICC, and had it placed between my bicep and tricep, which is MUCH easier to live with, doesn't constrict range of motion, has less risk of infection, and is healthier for my veins. It was far more uncomfortable to place this line, and they hit a nerve on the way in, which hurt like hell, so I can see why this placement isn't done with kids.
Overall, because my general office visits aren't moving, and really, the providers seeing us aren't changing, I am comfortable with this switch; but I don't understand why they just can't make separate protocols for adult CF patients within Childrens. IF they really want to make the transition to the Brigham successful they will have to do a much better job coordinating patients between the two hospitals - for example, why aren't they using EMR's??? (Electronic Medical Records) This is Harvard for gods sake! why are we still using folders?? anyway, I won't rant...
I also don't understand what the big deal was in the first place... I liked the free laptop at Childrens!! (which will be absent in Brigham inpatient stays)
Just my two cents...
Chris
25 w/CF
Hi Caitlin,
I see Dr. Donovan at Children's, and have recently gone through an outpatient cleanout using the Brigham. I haven't spent any nights at the Brigham, but I had my PICC placed there.
I am not sure why they are doing this - I think there is a vocal part of the adult patient population that really has a problem with being treated at Children's, particularly on an inpatient basis, so these changes are in response to that. HOWEVER, logistically, I don't think it makes much sense at all. The hospitals are not set up to coordinate care well, there are no CF specialists within the Brigham, so all that happens is Neelie walks over from Children's into the Brigham to meet patients.
I do think that there are some advantages - for example : the hospitals have very different protocols - the Children's protocols concerning how PICCs are placed are based on children patients, and Brigham's is designed for adults - this makes sense... in the past, at childrens, I had a small diameter PICC placed in my elbow - I'm an adult, this placement makes no sense. At the Brigham, I received a wider diameter PICC, and had it placed between my bicep and tricep, which is MUCH easier to live with, doesn't constrict range of motion, has less risk of infection, and is healthier for my veins. It was far more uncomfortable to place this line, and they hit a nerve on the way in, which hurt like hell, so I can see why this placement isn't done with kids.
Overall, because my general office visits aren't moving, and really, the providers seeing us aren't changing, I am comfortable with this switch; but I don't understand why they just can't make separate protocols for adult CF patients within Childrens. IF they really want to make the transition to the Brigham successful they will have to do a much better job coordinating patients between the two hospitals - for example, why aren't they using EMR's??? (Electronic Medical Records) This is Harvard for gods sake! why are we still using folders?? anyway, I won't rant...
I also don't understand what the big deal was in the first place... I liked the free laptop at Childrens!! (which will be absent in Brigham inpatient stays)
Just my two cents...
Chris
25 w/CF
I see Dr. Donovan at Children's, and have recently gone through an outpatient cleanout using the Brigham. I haven't spent any nights at the Brigham, but I had my PICC placed there.
I am not sure why they are doing this - I think there is a vocal part of the adult patient population that really has a problem with being treated at Children's, particularly on an inpatient basis, so these changes are in response to that. HOWEVER, logistically, I don't think it makes much sense at all. The hospitals are not set up to coordinate care well, there are no CF specialists within the Brigham, so all that happens is Neelie walks over from Children's into the Brigham to meet patients.
I do think that there are some advantages - for example : the hospitals have very different protocols - the Children's protocols concerning how PICCs are placed are based on children patients, and Brigham's is designed for adults - this makes sense... in the past, at childrens, I had a small diameter PICC placed in my elbow - I'm an adult, this placement makes no sense. At the Brigham, I received a wider diameter PICC, and had it placed between my bicep and tricep, which is MUCH easier to live with, doesn't constrict range of motion, has less risk of infection, and is healthier for my veins. It was far more uncomfortable to place this line, and they hit a nerve on the way in, which hurt like hell, so I can see why this placement isn't done with kids.
Overall, because my general office visits aren't moving, and really, the providers seeing us aren't changing, I am comfortable with this switch; but I don't understand why they just can't make separate protocols for adult CF patients within Childrens. IF they really want to make the transition to the Brigham successful they will have to do a much better job coordinating patients between the two hospitals - for example, why aren't they using EMR's??? (Electronic Medical Records) This is Harvard for gods sake! why are we still using folders?? anyway, I won't rant...
I also don't understand what the big deal was in the first place... I liked the free laptop at Childrens!! (which will be absent in Brigham inpatient stays)
Just my two cents...
Chris
25 w/CF
Hi,
My kids go to Childrens, but they are a little too young to transition over to B&W (10 and 14). When they created that program, they made a BIG deal out of it, but I haven't heard anything about it since. I'd also be interested to hear from someone who has done it.
We see Dr. Sheils, we have never met Dr. Donovan. (M or F?)
My kids go to Childrens, but they are a little too young to transition over to B&W (10 and 14). When they created that program, they made a BIG deal out of it, but I haven't heard anything about it since. I'd also be interested to hear from someone who has done it.
We see Dr. Sheils, we have never met Dr. Donovan. (M or F?)
Hi,
My kids go to Childrens, but they are a little too young to transition over to B&W (10 and 14). When they created that program, they made a BIG deal out of it, but I haven't heard anything about it since. I'd also be interested to hear from someone who has done it.
We see Dr. Sheils, we have never met Dr. Donovan. (M or F?)
My kids go to Childrens, but they are a little too young to transition over to B&W (10 and 14). When they created that program, they made a BIG deal out of it, but I haven't heard anything about it since. I'd also be interested to hear from someone who has done it.
We see Dr. Sheils, we have never met Dr. Donovan. (M or F?)
buggygurl321
New member
I'm 15 and see Dr. Uluer at Childrens. HAven't made the transition yet. Is it hard or anything?
Katie
Katie
buggygurl321
New member
I'm 15 and see Dr. Uluer at Childrens. HAven't made the transition yet. Is it hard or anything?
Katie
Katie
Hi Katie,
Its just a way for the adult patients to feel that their needs are being addressed in a clinic that is adult-centered. It must be hard for the adults at Children's to be on the same floor as crying babies, clowns and Barney on tv. The whole hospital caters to kids, which is great if you are one. Even the medical equipment is kid sized. The lobby and waiting areas drive me crazy.
I think at this point it is optional whether you are seen at B & W or at Children's, but I'm not sure.
We LOVE Dr. Uhlur!!!!
Its just a way for the adult patients to feel that their needs are being addressed in a clinic that is adult-centered. It must be hard for the adults at Children's to be on the same floor as crying babies, clowns and Barney on tv. The whole hospital caters to kids, which is great if you are one. Even the medical equipment is kid sized. The lobby and waiting areas drive me crazy.
I think at this point it is optional whether you are seen at B & W or at Children's, but I'm not sure.
We LOVE Dr. Uhlur!!!!
Hi Katie,
Its just a way for the adult patients to feel that their needs are being addressed in a clinic that is adult-centered. It must be hard for the adults at Children's to be on the same floor as crying babies, clowns and Barney on tv. The whole hospital caters to kids, which is great if you are one. Even the medical equipment is kid sized. The lobby and waiting areas drive me crazy.
I think at this point it is optional whether you are seen at B & W or at Children's, but I'm not sure.
We LOVE Dr. Uhlur!!!!
Its just a way for the adult patients to feel that their needs are being addressed in a clinic that is adult-centered. It must be hard for the adults at Children's to be on the same floor as crying babies, clowns and Barney on tv. The whole hospital caters to kids, which is great if you are one. Even the medical equipment is kid sized. The lobby and waiting areas drive me crazy.
I think at this point it is optional whether you are seen at B & W or at Children's, but I'm not sure.
We LOVE Dr. Uhlur!!!!
Hi Chris, Katie, and Jane
Chris I also see Dr. Donovan and was just admitted last Wednesday at the Brigham for a few days at the beginning of my cleanout. I am home now finishing it. My understanding is that the whole reason behind it is the accrediting institution: i.e. Children's will lose their accredidation if they dont start admitting their adults to Adult hospitals, so its not Childrens idea or the Brigham's or anyone's...but I think it sucks all around. The Brigham is just NOT as nice as Children's...the rooms were dingier, you had to pay for TV, little things like that. Also the Chest PT was terrible- I told them what I thought about that, and was surprised that no other CF patients had complained yet. They dont do any tipped positions and they only do about 4 positions to begin with. Usually I like to do my cleanouts ALL at home, but this time I was sick with a virus so I was admitted, and actually was looking forward to the rigorous Chest PT, which I didnt get.
The PICC is different too, like you said, except Chris, I always had my PICCS at childrens placed between my elbow and shoulder, high up, but this is b/c I got them placed in Interventional Radiology. It is way better. The only thing nice about Brighams PICCS is that yes they are bigger (5 French, not 3 French) and they flush easier but whatever. It never made much of a difference to me because I am small anyway.
Jane, Dr. Donovan is an adult doctor at CHildrens and I think she is great. She is partly at the Brigham and used to be on the TX team there. She is really thorough, smart and nice, but not too nice if you know what I mean. Do you like Sheilds?
Anyway, all in all I felt that the Brigham thing is a little haphazard...they kept telling me that this was a big transition for "everyone" and that I needed to help it along...i.e. tell the Chest PT's how to do Chest PT, etc., but I just think thats ridiculous. Also they made me go EVERYWHERE in a wheelchair. I was dying to get out of there. No comfortable chairs in the rooms for visitors, just one hard one!
I feel bad for the people who like to go into the hospital for thier entire cleanout- because now there is a huge push to get you out quick under most any circumstance. This works for me but not for everyone. I got a little sad- I must say all the niceties at children's never bothered me, even the cartoons....everyone was so nice and it just wasnt the same at the Brigham. Just a bunch of old sick men yelling in the middle of the night that they had to go to the bathroom. Yikes.
Caitlin
Chris I also see Dr. Donovan and was just admitted last Wednesday at the Brigham for a few days at the beginning of my cleanout. I am home now finishing it. My understanding is that the whole reason behind it is the accrediting institution: i.e. Children's will lose their accredidation if they dont start admitting their adults to Adult hospitals, so its not Childrens idea or the Brigham's or anyone's...but I think it sucks all around. The Brigham is just NOT as nice as Children's...the rooms were dingier, you had to pay for TV, little things like that. Also the Chest PT was terrible- I told them what I thought about that, and was surprised that no other CF patients had complained yet. They dont do any tipped positions and they only do about 4 positions to begin with. Usually I like to do my cleanouts ALL at home, but this time I was sick with a virus so I was admitted, and actually was looking forward to the rigorous Chest PT, which I didnt get.
The PICC is different too, like you said, except Chris, I always had my PICCS at childrens placed between my elbow and shoulder, high up, but this is b/c I got them placed in Interventional Radiology. It is way better. The only thing nice about Brighams PICCS is that yes they are bigger (5 French, not 3 French) and they flush easier but whatever. It never made much of a difference to me because I am small anyway.
Jane, Dr. Donovan is an adult doctor at CHildrens and I think she is great. She is partly at the Brigham and used to be on the TX team there. She is really thorough, smart and nice, but not too nice if you know what I mean. Do you like Sheilds?
Anyway, all in all I felt that the Brigham thing is a little haphazard...they kept telling me that this was a big transition for "everyone" and that I needed to help it along...i.e. tell the Chest PT's how to do Chest PT, etc., but I just think thats ridiculous. Also they made me go EVERYWHERE in a wheelchair. I was dying to get out of there. No comfortable chairs in the rooms for visitors, just one hard one!
I feel bad for the people who like to go into the hospital for thier entire cleanout- because now there is a huge push to get you out quick under most any circumstance. This works for me but not for everyone. I got a little sad- I must say all the niceties at children's never bothered me, even the cartoons....everyone was so nice and it just wasnt the same at the Brigham. Just a bunch of old sick men yelling in the middle of the night that they had to go to the bathroom. Yikes.
Caitlin
Hi Chris, Katie, and Jane
Chris I also see Dr. Donovan and was just admitted last Wednesday at the Brigham for a few days at the beginning of my cleanout. I am home now finishing it. My understanding is that the whole reason behind it is the accrediting institution: i.e. Children's will lose their accredidation if they dont start admitting their adults to Adult hospitals, so its not Childrens idea or the Brigham's or anyone's...but I think it sucks all around. The Brigham is just NOT as nice as Children's...the rooms were dingier, you had to pay for TV, little things like that. Also the Chest PT was terrible- I told them what I thought about that, and was surprised that no other CF patients had complained yet. They dont do any tipped positions and they only do about 4 positions to begin with. Usually I like to do my cleanouts ALL at home, but this time I was sick with a virus so I was admitted, and actually was looking forward to the rigorous Chest PT, which I didnt get.
The PICC is different too, like you said, except Chris, I always had my PICCS at childrens placed between my elbow and shoulder, high up, but this is b/c I got them placed in Interventional Radiology. It is way better. The only thing nice about Brighams PICCS is that yes they are bigger (5 French, not 3 French) and they flush easier but whatever. It never made much of a difference to me because I am small anyway.
Jane, Dr. Donovan is an adult doctor at CHildrens and I think she is great. She is partly at the Brigham and used to be on the TX team there. She is really thorough, smart and nice, but not too nice if you know what I mean. Do you like Sheilds?
Anyway, all in all I felt that the Brigham thing is a little haphazard...they kept telling me that this was a big transition for "everyone" and that I needed to help it along...i.e. tell the Chest PT's how to do Chest PT, etc., but I just think thats ridiculous. Also they made me go EVERYWHERE in a wheelchair. I was dying to get out of there. No comfortable chairs in the rooms for visitors, just one hard one!
I feel bad for the people who like to go into the hospital for thier entire cleanout- because now there is a huge push to get you out quick under most any circumstance. This works for me but not for everyone. I got a little sad- I must say all the niceties at children's never bothered me, even the cartoons....everyone was so nice and it just wasnt the same at the Brigham. Just a bunch of old sick men yelling in the middle of the night that they had to go to the bathroom. Yikes.
Caitlin
Chris I also see Dr. Donovan and was just admitted last Wednesday at the Brigham for a few days at the beginning of my cleanout. I am home now finishing it. My understanding is that the whole reason behind it is the accrediting institution: i.e. Children's will lose their accredidation if they dont start admitting their adults to Adult hospitals, so its not Childrens idea or the Brigham's or anyone's...but I think it sucks all around. The Brigham is just NOT as nice as Children's...the rooms were dingier, you had to pay for TV, little things like that. Also the Chest PT was terrible- I told them what I thought about that, and was surprised that no other CF patients had complained yet. They dont do any tipped positions and they only do about 4 positions to begin with. Usually I like to do my cleanouts ALL at home, but this time I was sick with a virus so I was admitted, and actually was looking forward to the rigorous Chest PT, which I didnt get.
The PICC is different too, like you said, except Chris, I always had my PICCS at childrens placed between my elbow and shoulder, high up, but this is b/c I got them placed in Interventional Radiology. It is way better. The only thing nice about Brighams PICCS is that yes they are bigger (5 French, not 3 French) and they flush easier but whatever. It never made much of a difference to me because I am small anyway.
Jane, Dr. Donovan is an adult doctor at CHildrens and I think she is great. She is partly at the Brigham and used to be on the TX team there. She is really thorough, smart and nice, but not too nice if you know what I mean. Do you like Sheilds?
Anyway, all in all I felt that the Brigham thing is a little haphazard...they kept telling me that this was a big transition for "everyone" and that I needed to help it along...i.e. tell the Chest PT's how to do Chest PT, etc., but I just think thats ridiculous. Also they made me go EVERYWHERE in a wheelchair. I was dying to get out of there. No comfortable chairs in the rooms for visitors, just one hard one!
I feel bad for the people who like to go into the hospital for thier entire cleanout- because now there is a huge push to get you out quick under most any circumstance. This works for me but not for everyone. I got a little sad- I must say all the niceties at children's never bothered me, even the cartoons....everyone was so nice and it just wasnt the same at the Brigham. Just a bunch of old sick men yelling in the middle of the night that they had to go to the bathroom. Yikes.
Caitlin
Hi Caitlin,
Old men are definately worse than bad cartoons.
Thanks for the info. I didn't realize it had to do with accreditation- interesting. It would be hard to go over to Brighams especially after the awesome new rooms on 9 South. My son was there last week. Have you seen them? Very tastefully decorated.
Funny you should mention the size of the PICC. Our home nurse commented on the size of the PICC being too small and hard to flush. (he has a 3F). Last clean-out he ended up with a clot. So I guess there's pros and cons. You can't beat the nurses at Children's as well as the PTs. I can't believe you have to pay for TV! Wow.
We do like Dr. Sheils, but she is very aggressive with treatment (which is sometimes good sometimes not). We think she really goes out of her way for us. She has gotten better about communicating with us, probably because of her own children. All the docs at Childrens seem to be rather conservative with new treatments like herbals, but overall we have been pleased with most of the doctors we've had.
Old men are definately worse than bad cartoons.
Thanks for the info. I didn't realize it had to do with accreditation- interesting. It would be hard to go over to Brighams especially after the awesome new rooms on 9 South. My son was there last week. Have you seen them? Very tastefully decorated.
Funny you should mention the size of the PICC. Our home nurse commented on the size of the PICC being too small and hard to flush. (he has a 3F). Last clean-out he ended up with a clot. So I guess there's pros and cons. You can't beat the nurses at Children's as well as the PTs. I can't believe you have to pay for TV! Wow.
We do like Dr. Sheils, but she is very aggressive with treatment (which is sometimes good sometimes not). We think she really goes out of her way for us. She has gotten better about communicating with us, probably because of her own children. All the docs at Childrens seem to be rather conservative with new treatments like herbals, but overall we have been pleased with most of the doctors we've had.
Hi Caitlin,
Old men are definately worse than bad cartoons.
Thanks for the info. I didn't realize it had to do with accreditation- interesting. It would be hard to go over to Brighams especially after the awesome new rooms on 9 South. My son was there last week. Have you seen them? Very tastefully decorated.
Funny you should mention the size of the PICC. Our home nurse commented on the size of the PICC being too small and hard to flush. (he has a 3F). Last clean-out he ended up with a clot. So I guess there's pros and cons. You can't beat the nurses at Children's as well as the PTs. I can't believe you have to pay for TV! Wow.
We do like Dr. Sheils, but she is very aggressive with treatment (which is sometimes good sometimes not). We think she really goes out of her way for us. She has gotten better about communicating with us, probably because of her own children. All the docs at Childrens seem to be rather conservative with new treatments like herbals, but overall we have been pleased with most of the doctors we've had.
Old men are definately worse than bad cartoons.
Thanks for the info. I didn't realize it had to do with accreditation- interesting. It would be hard to go over to Brighams especially after the awesome new rooms on 9 South. My son was there last week. Have you seen them? Very tastefully decorated.
Funny you should mention the size of the PICC. Our home nurse commented on the size of the PICC being too small and hard to flush. (he has a 3F). Last clean-out he ended up with a clot. So I guess there's pros and cons. You can't beat the nurses at Children's as well as the PTs. I can't believe you have to pay for TV! Wow.
We do like Dr. Sheils, but she is very aggressive with treatment (which is sometimes good sometimes not). We think she really goes out of her way for us. She has gotten better about communicating with us, probably because of her own children. All the docs at Childrens seem to be rather conservative with new treatments like herbals, but overall we have been pleased with most of the doctors we've had.
Hi Caitlin,
I was admitted last Wednesday too! I'm at home finishing as well. So far so good - I just had my half-way checkup yesterday, and it went well. I'm getting my line pulled next wednesday morning (10:00) I'd be happy to wave from afar and introduce myself better if you're around then.
The chest PT news troubles me... they should have their act together better than that. I'm currently trying to get more involved in the Patient and Family Advisory and Advocacy Committee, which apparently is starting up. Apparently it involves some level of patient participation, and as one of its stated goals is quality of care improvement, this seems like something that needs to be addressed.
What do you do for PT while you are on your home cleanout? I currently use Chest PT Services, which is based in Arlington MA - they send out a therapist to my house every morning. Its great - they specialize in CF patients, and are absoluetly wonderful. All the therapists I've had are excellent. I'm in the process of fighting with my insurance company to get it covered year round - right now I have a limited number of visits, and need to save them for cleanouts - but would love to get it 2-3 times a week all the time.
Are they starting you on hypertonic saline? I just got a Rx for it yesterday, and should be able to pick it up tomorrow.
I'm glad to hear you're home, and hope you're feeling better!
Chris
25 w/CF
I was admitted last Wednesday too! I'm at home finishing as well. So far so good - I just had my half-way checkup yesterday, and it went well. I'm getting my line pulled next wednesday morning (10:00) I'd be happy to wave from afar and introduce myself better if you're around then.
The chest PT news troubles me... they should have their act together better than that. I'm currently trying to get more involved in the Patient and Family Advisory and Advocacy Committee, which apparently is starting up. Apparently it involves some level of patient participation, and as one of its stated goals is quality of care improvement, this seems like something that needs to be addressed.
What do you do for PT while you are on your home cleanout? I currently use Chest PT Services, which is based in Arlington MA - they send out a therapist to my house every morning. Its great - they specialize in CF patients, and are absoluetly wonderful. All the therapists I've had are excellent. I'm in the process of fighting with my insurance company to get it covered year round - right now I have a limited number of visits, and need to save them for cleanouts - but would love to get it 2-3 times a week all the time.
Are they starting you on hypertonic saline? I just got a Rx for it yesterday, and should be able to pick it up tomorrow.
I'm glad to hear you're home, and hope you're feeling better!
Chris
25 w/CF
Hi Caitlin,
I was admitted last Wednesday too! I'm at home finishing as well. So far so good - I just had my half-way checkup yesterday, and it went well. I'm getting my line pulled next wednesday morning (10:00) I'd be happy to wave from afar and introduce myself better if you're around then.
The chest PT news troubles me... they should have their act together better than that. I'm currently trying to get more involved in the Patient and Family Advisory and Advocacy Committee, which apparently is starting up. Apparently it involves some level of patient participation, and as one of its stated goals is quality of care improvement, this seems like something that needs to be addressed.
What do you do for PT while you are on your home cleanout? I currently use Chest PT Services, which is based in Arlington MA - they send out a therapist to my house every morning. Its great - they specialize in CF patients, and are absoluetly wonderful. All the therapists I've had are excellent. I'm in the process of fighting with my insurance company to get it covered year round - right now I have a limited number of visits, and need to save them for cleanouts - but would love to get it 2-3 times a week all the time.
Are they starting you on hypertonic saline? I just got a Rx for it yesterday, and should be able to pick it up tomorrow.
I'm glad to hear you're home, and hope you're feeling better!
Chris
25 w/CF
I was admitted last Wednesday too! I'm at home finishing as well. So far so good - I just had my half-way checkup yesterday, and it went well. I'm getting my line pulled next wednesday morning (10:00) I'd be happy to wave from afar and introduce myself better if you're around then.
The chest PT news troubles me... they should have their act together better than that. I'm currently trying to get more involved in the Patient and Family Advisory and Advocacy Committee, which apparently is starting up. Apparently it involves some level of patient participation, and as one of its stated goals is quality of care improvement, this seems like something that needs to be addressed.
What do you do for PT while you are on your home cleanout? I currently use Chest PT Services, which is based in Arlington MA - they send out a therapist to my house every morning. Its great - they specialize in CF patients, and are absoluetly wonderful. All the therapists I've had are excellent. I'm in the process of fighting with my insurance company to get it covered year round - right now I have a limited number of visits, and need to save them for cleanouts - but would love to get it 2-3 times a week all the time.
Are they starting you on hypertonic saline? I just got a Rx for it yesterday, and should be able to pick it up tomorrow.
I'm glad to hear you're home, and hope you're feeling better!
Chris
25 w/CF
Hey Chris,
That is really funny, I was in for a check-up yesterday also, my apt. was at 11 but I was a little late! Maybe I saw you there and just didn't know. I too use Chest PT services, but have had the same PT since I was 2 years old, if you can believe it. When I was diagnosed she was the first one sent out- and it turned out she lived in my town, was relatively the same age as my mom, had kids my age, so it worked out great. She is now a great friend of the family and does EXCELLENT chest PT. I live in Brighton now where I go to school, but go home to my house 1/2 hour west of Boston on the weekends, and she does Chest PT then.
I am not on hypertonic saline- but I'd be really interested in hearing how you do on it. What do you culture if you dont mind my asking. We'd probably want to wave from a FAR FAR FAR seeing as I have cepacia. Dont worry, I wont be offended! I am interested about hypertonic saline but am not sure, seeing as "coughing stuff up, or thinning out the mucous" isn't really a huge problem of mine...if that makes sense, but I'd be curious to see what it did for you.
Who else have you had at Children's? I am probably doing a 3 week cleanout, since I was so sick with this cold I need an extra boost- just today I am starting to feel a bit better. UGH- 2 weeks ago if someone would have said I'd be on a cleanout I wouldn't have believed them!
I totally agree with you about things needing to be addressed- I was bringing up a lot of the problems I saw with the Brigham and apparently they hadn't heard any of it before. I was the 24th CF patient to be admitted, so this surprised me. I am all about being your own advocate- and it is the hospitals responsibility to be fully ready and capable to admit CF patients in a responsible way. The only way I can describe it is- At Children's I always felt like I was getting some of the best care possible, that I was really at an excellent, special hospital. At the Brigham, I just felt like I was at any old hospital, not THE BEST, and that bothers me. It especially bothers me that I dont have the option to be admitted at THE BEST if I want to be. At least we are not kicked out altogether.
JANE- I do think that ALL docs are conservative for the most part- they dont seem to want to ENDORSE anything that isn't all technically approved, but if you bring it up they def. wont discourage it either. My understanding is that just because a PICC is a 3 French doesnt mean it should clot. What were the circumstances? Sometimes they are hesitant about using a lot of Heparin but I always do, I figure it is worth it. Plus, I am on Vitamin K which is a coagulant, like lots of CF patients, so I figure that counteracts any blood-thinning properties of Heparin.
I have not seen the new 9 South rooms- but I have heard of them and it makes me more mad!!! The rooms at the Brigham really suck, actually, and I know that the "new" towers over there are really nice- but of course they are reserved for people having babies....obviously life is fair!
Who knows, maybe it will change back, but I do know it is all about accredidation and not really the hospitals at all, unfortunately.
Caitlin
22 w/ CF, b. cepacia
That is really funny, I was in for a check-up yesterday also, my apt. was at 11 but I was a little late! Maybe I saw you there and just didn't know. I too use Chest PT services, but have had the same PT since I was 2 years old, if you can believe it. When I was diagnosed she was the first one sent out- and it turned out she lived in my town, was relatively the same age as my mom, had kids my age, so it worked out great. She is now a great friend of the family and does EXCELLENT chest PT. I live in Brighton now where I go to school, but go home to my house 1/2 hour west of Boston on the weekends, and she does Chest PT then.
I am not on hypertonic saline- but I'd be really interested in hearing how you do on it. What do you culture if you dont mind my asking. We'd probably want to wave from a FAR FAR FAR seeing as I have cepacia. Dont worry, I wont be offended! I am interested about hypertonic saline but am not sure, seeing as "coughing stuff up, or thinning out the mucous" isn't really a huge problem of mine...if that makes sense, but I'd be curious to see what it did for you.
Who else have you had at Children's? I am probably doing a 3 week cleanout, since I was so sick with this cold I need an extra boost- just today I am starting to feel a bit better. UGH- 2 weeks ago if someone would have said I'd be on a cleanout I wouldn't have believed them!
I totally agree with you about things needing to be addressed- I was bringing up a lot of the problems I saw with the Brigham and apparently they hadn't heard any of it before. I was the 24th CF patient to be admitted, so this surprised me. I am all about being your own advocate- and it is the hospitals responsibility to be fully ready and capable to admit CF patients in a responsible way. The only way I can describe it is- At Children's I always felt like I was getting some of the best care possible, that I was really at an excellent, special hospital. At the Brigham, I just felt like I was at any old hospital, not THE BEST, and that bothers me. It especially bothers me that I dont have the option to be admitted at THE BEST if I want to be. At least we are not kicked out altogether.
JANE- I do think that ALL docs are conservative for the most part- they dont seem to want to ENDORSE anything that isn't all technically approved, but if you bring it up they def. wont discourage it either. My understanding is that just because a PICC is a 3 French doesnt mean it should clot. What were the circumstances? Sometimes they are hesitant about using a lot of Heparin but I always do, I figure it is worth it. Plus, I am on Vitamin K which is a coagulant, like lots of CF patients, so I figure that counteracts any blood-thinning properties of Heparin.
I have not seen the new 9 South rooms- but I have heard of them and it makes me more mad!!! The rooms at the Brigham really suck, actually, and I know that the "new" towers over there are really nice- but of course they are reserved for people having babies....obviously life is fair!
Who knows, maybe it will change back, but I do know it is all about accredidation and not really the hospitals at all, unfortunately.
Caitlin
22 w/ CF, b. cepacia
Hey Chris,
That is really funny, I was in for a check-up yesterday also, my apt. was at 11 but I was a little late! Maybe I saw you there and just didn't know. I too use Chest PT services, but have had the same PT since I was 2 years old, if you can believe it. When I was diagnosed she was the first one sent out- and it turned out she lived in my town, was relatively the same age as my mom, had kids my age, so it worked out great. She is now a great friend of the family and does EXCELLENT chest PT. I live in Brighton now where I go to school, but go home to my house 1/2 hour west of Boston on the weekends, and she does Chest PT then.
I am not on hypertonic saline- but I'd be really interested in hearing how you do on it. What do you culture if you dont mind my asking. We'd probably want to wave from a FAR FAR FAR seeing as I have cepacia. Dont worry, I wont be offended! I am interested about hypertonic saline but am not sure, seeing as "coughing stuff up, or thinning out the mucous" isn't really a huge problem of mine...if that makes sense, but I'd be curious to see what it did for you.
Who else have you had at Children's? I am probably doing a 3 week cleanout, since I was so sick with this cold I need an extra boost- just today I am starting to feel a bit better. UGH- 2 weeks ago if someone would have said I'd be on a cleanout I wouldn't have believed them!
I totally agree with you about things needing to be addressed- I was bringing up a lot of the problems I saw with the Brigham and apparently they hadn't heard any of it before. I was the 24th CF patient to be admitted, so this surprised me. I am all about being your own advocate- and it is the hospitals responsibility to be fully ready and capable to admit CF patients in a responsible way. The only way I can describe it is- At Children's I always felt like I was getting some of the best care possible, that I was really at an excellent, special hospital. At the Brigham, I just felt like I was at any old hospital, not THE BEST, and that bothers me. It especially bothers me that I dont have the option to be admitted at THE BEST if I want to be. At least we are not kicked out altogether.
JANE- I do think that ALL docs are conservative for the most part- they dont seem to want to ENDORSE anything that isn't all technically approved, but if you bring it up they def. wont discourage it either. My understanding is that just because a PICC is a 3 French doesnt mean it should clot. What were the circumstances? Sometimes they are hesitant about using a lot of Heparin but I always do, I figure it is worth it. Plus, I am on Vitamin K which is a coagulant, like lots of CF patients, so I figure that counteracts any blood-thinning properties of Heparin.
I have not seen the new 9 South rooms- but I have heard of them and it makes me more mad!!! The rooms at the Brigham really suck, actually, and I know that the "new" towers over there are really nice- but of course they are reserved for people having babies....obviously life is fair!
Who knows, maybe it will change back, but I do know it is all about accredidation and not really the hospitals at all, unfortunately.
Caitlin
22 w/ CF, b. cepacia
That is really funny, I was in for a check-up yesterday also, my apt. was at 11 but I was a little late! Maybe I saw you there and just didn't know. I too use Chest PT services, but have had the same PT since I was 2 years old, if you can believe it. When I was diagnosed she was the first one sent out- and it turned out she lived in my town, was relatively the same age as my mom, had kids my age, so it worked out great. She is now a great friend of the family and does EXCELLENT chest PT. I live in Brighton now where I go to school, but go home to my house 1/2 hour west of Boston on the weekends, and she does Chest PT then.
I am not on hypertonic saline- but I'd be really interested in hearing how you do on it. What do you culture if you dont mind my asking. We'd probably want to wave from a FAR FAR FAR seeing as I have cepacia. Dont worry, I wont be offended! I am interested about hypertonic saline but am not sure, seeing as "coughing stuff up, or thinning out the mucous" isn't really a huge problem of mine...if that makes sense, but I'd be curious to see what it did for you.
Who else have you had at Children's? I am probably doing a 3 week cleanout, since I was so sick with this cold I need an extra boost- just today I am starting to feel a bit better. UGH- 2 weeks ago if someone would have said I'd be on a cleanout I wouldn't have believed them!
I totally agree with you about things needing to be addressed- I was bringing up a lot of the problems I saw with the Brigham and apparently they hadn't heard any of it before. I was the 24th CF patient to be admitted, so this surprised me. I am all about being your own advocate- and it is the hospitals responsibility to be fully ready and capable to admit CF patients in a responsible way. The only way I can describe it is- At Children's I always felt like I was getting some of the best care possible, that I was really at an excellent, special hospital. At the Brigham, I just felt like I was at any old hospital, not THE BEST, and that bothers me. It especially bothers me that I dont have the option to be admitted at THE BEST if I want to be. At least we are not kicked out altogether.
JANE- I do think that ALL docs are conservative for the most part- they dont seem to want to ENDORSE anything that isn't all technically approved, but if you bring it up they def. wont discourage it either. My understanding is that just because a PICC is a 3 French doesnt mean it should clot. What were the circumstances? Sometimes they are hesitant about using a lot of Heparin but I always do, I figure it is worth it. Plus, I am on Vitamin K which is a coagulant, like lots of CF patients, so I figure that counteracts any blood-thinning properties of Heparin.
I have not seen the new 9 South rooms- but I have heard of them and it makes me more mad!!! The rooms at the Brigham really suck, actually, and I know that the "new" towers over there are really nice- but of course they are reserved for people having babies....obviously life is fair!
Who knows, maybe it will change back, but I do know it is all about accredidation and not really the hospitals at all, unfortunately.
Caitlin
22 w/ CF, b. cepacia