Childrens/Brigham & Womens Boston

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anonymous

New member
Caitlin,

My son was on day 4 of a home cleanout last year when the line wouldn't flush. We had the home nurse come and work on it and she even tried the "super heparin". We ended up going to our local hospital for TPA which worked great. We never determined the cause, the home nurse just suggested that the PICC may be too small.

We have chest pt services too- 3x a week. They've been great, even finding people to help us when we were on vacation (in MA).

We've had Dr. Sheils since our first son was born, but with all the various admissions and surgeries for both boys, we've had many different ones here and there. Like I said, most have been great.

I hear the adult cf patients at Mass General have awesome private rooms on the exclusive floor usually reserved for celebs.
 
A

anonymous

New member
Caitlin,

My son was on day 4 of a home cleanout last year when the line wouldn't flush. We had the home nurse come and work on it and she even tried the "super heparin". We ended up going to our local hospital for TPA which worked great. We never determined the cause, the home nurse just suggested that the PICC may be too small.

We have chest pt services too- 3x a week. They've been great, even finding people to help us when we were on vacation (in MA).

We've had Dr. Sheils since our first son was born, but with all the various admissions and surgeries for both boys, we've had many different ones here and there. Like I said, most have been great.

I hear the adult cf patients at Mass General have awesome private rooms on the exclusive floor usually reserved for celebs.
 
A

anonymous

New member
I am almost 36 and go to Children's. I was diagnosed at 25 and have seen Dr. Gerard the entire time. I have not transitioned to Brigham but was told it was partially due to liability issues. At a cleanout in 2001 I had a 5 year old male roommate--at a cleanout in 2003 I had a "double single" because no non-CF adults were admitted to Children's due to new regulations. My understanding is that Children's "shopped" around for hospitals to "take" the adult patients for in-patient care and the Brigham finally agreed.

My adult sister just had a PICC placed at Brigham without interventional raditiation. Her only complaint was about the home therapy company which did not coordinate well in terms of the blood draws and dressing changes. They did not seem to be on the same schedule as the hospital thought she was on.

As an adult I LOVED my stay at Children's and am slightly nervous about the prospect of going to Brigham if I need a future cleanout, etc. I also spoke to another adult CF who feels the same. Both my PICCs have been place in interventional radiation at Children's--to hear that they're good at Brigham & W makes me happy!
 
A

anonymous

New member
I am almost 36 and go to Children's. I was diagnosed at 25 and have seen Dr. Gerard the entire time. I have not transitioned to Brigham but was told it was partially due to liability issues. At a cleanout in 2001 I had a 5 year old male roommate--at a cleanout in 2003 I had a "double single" because no non-CF adults were admitted to Children's due to new regulations. My understanding is that Children's "shopped" around for hospitals to "take" the adult patients for in-patient care and the Brigham finally agreed.

My adult sister just had a PICC placed at Brigham without interventional raditiation. Her only complaint was about the home therapy company which did not coordinate well in terms of the blood draws and dressing changes. They did not seem to be on the same schedule as the hospital thought she was on.

As an adult I LOVED my stay at Children's and am slightly nervous about the prospect of going to Brigham if I need a future cleanout, etc. I also spoke to another adult CF who feels the same. Both my PICCs have been place in interventional radiation at Children's--to hear that they're good at Brigham & W makes me happy!
 
A

anonymous

New member
Those clowns used to scare me into staying healthy.<img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
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anonymous

New member
Those clowns used to scare me into staying healthy.<img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
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Rokiss12

New member
hi Caitlin!

i used to go to Childrens in Boston, but i just recently (about august of 2004) transitioned over to mass general and mass eye and ear. its kind of annoying being at 2 hospitals, but there both good places. At childrens, i saw Dr. Waltz, and at Mass General i see Dr. Dorkin, and at Mass eye and ear, i see Dr. Cunningham. hope all the transition-ness goes smoothly!

Kate
 
R

Rokiss12

New member
hi Caitlin!

i used to go to Childrens in Boston, but i just recently (about august of 2004) transitioned over to mass general and mass eye and ear. its kind of annoying being at 2 hospitals, but there both good places. At childrens, i saw Dr. Waltz, and at Mass General i see Dr. Dorkin, and at Mass eye and ear, i see Dr. Cunningham. hope all the transition-ness goes smoothly!

Kate
 
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Kay

New member
I go to Children's but can't transfer to Brighams because I have Cepacia!! However those clowns are very scary!! I have Dr. Uluer and I LOVE him too!! I had Dr. Shiels but I didn't like her, she didn't have a very good bed side manner and I think that is one of the most important things esp. since we are in there all the time it is nice to have a good relationship with your doc. I switched to Dr. Uluer aobut 2 years ago and I wouldn't change docs even if someone offered me a million dollars...HE ROCKS!!!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Kay

New member
I go to Children's but can't transfer to Brighams because I have Cepacia!! However those clowns are very scary!! I have Dr. Uluer and I LOVE him too!! I had Dr. Shiels but I didn't like her, she didn't have a very good bed side manner and I think that is one of the most important things esp. since we are in there all the time it is nice to have a good relationship with your doc. I switched to Dr. Uluer aobut 2 years ago and I wouldn't change docs even if someone offered me a million dollars...HE ROCKS!!!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Kay,

I have cepacia too and they had no problem sending me over there. that is interesting...do you have cepacia dolosa?


Kate- Do you like Dr. Dorkin? I know someone who has had him thier whole life, but he barely shows any CF symptoms at all so never really has any problems to begin with. Do you find that he is aggressive enough?
 
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anonymous

New member
Kay,

I have cepacia too and they had no problem sending me over there. that is interesting...do you have cepacia dolosa?


Kate- Do you like Dr. Dorkin? I know someone who has had him thier whole life, but he barely shows any CF symptoms at all so never really has any problems to begin with. Do you find that he is aggressive enough?
 
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anonymous

New member
Omigosh! I had the absolute WORST experience over at B & W!! I have to go to Interventional Radiology to get my PICC placed. I had been to Children's IR 4 - 5 times and it never took them more than 2 tries to get it in. I went to B & W IR in January and it took 2 MD's 10 tries!!!!!! Without any sedation or litocaine, mind you! They had no idea about CF precautions, and one of the docs made an insanely inappropraite comment to me that caused me to write a letter to the President of the hospital!

I absolutely dread the day I have to go back there!! If it were up to me, I'd never go back!
 
A

anonymous

New member
Omigosh! I had the absolute WORST experience over at B & W!! I have to go to Interventional Radiology to get my PICC placed. I had been to Children's IR 4 - 5 times and it never took them more than 2 tries to get it in. I went to B & W IR in January and it took 2 MD's 10 tries!!!!!! Without any sedation or litocaine, mind you! They had no idea about CF precautions, and one of the docs made an insanely inappropraite comment to me that caused me to write a letter to the President of the hospital!

I absolutely dread the day I have to go back there!! If it were up to me, I'd never go back!
 
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anonymous

New member
Why didn't they use lidocaine? What was the innapropriate comment if you dont mind my asking? They got the PICC in in IR for me, but it was definitely less-than-satisfactory...they two guys seemed bumbling and dumb, and the nurse had a HUGE attitude problem...

Caitlin
 
A

anonymous

New member
Why didn't they use lidocaine? What was the innapropriate comment if you dont mind my asking? They got the PICC in in IR for me, but it was definitely less-than-satisfactory...they two guys seemed bumbling and dumb, and the nurse had a HUGE attitude problem...

Caitlin
 
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