New York City- hospitals?

[anonymous]

Hi there,

I currently live in Boston but am thinking of moving to NYC
Does anyone live there--- which hospital is best for CF--- Columbia?

Any info / doctors names etc. would be helpful. I would not switch hospitals but would definitely want to be in contact with one so I would have the option of doing things there.

Caitlin

 

[JazzysMom]

I was dx at Bostons Children, but since I live in New York State I was referred to Columbia Presbyterian for follow up. The group then moved from COlumbia to St. Vincents & I am still with that group. 30 years later & 25 plus years at St. Vincents in Manhatten & I still 100% happy. They have had change over in alot of the staff over the 30 years, but I believe the care has remained top notch. Its quite a hike for me to get to Manhatten from my home & due to that I have thought about changing groups ove the years. I always decided against it. This group has watched me grow up, get married (twice LOL) & have a baby. They are my extended family! I highly recommen this group. The only thing that might matter to you is that the Pediatric & Adults are seen in the same office. When admitted to the hospital......ALL patients (no matter the age of the CFer) are admitted to the Pediatric floor. Granted they group the adults in the same general area away from the little ones, but if busy you will definitely see all ages. There are at least 2 other CFers on here that go to the same clinic!


BTW Dr. Patrician Walker heads the Adult Program & Dr. Maria Berdella does Pediatrics. They do cover for each other tho. Both can be reached at 212-604-8895

 

[Chaggie]

Why on Earth would you want to leave Boston, I left 6 years ago and
regret it, but I am married now and it is no longer just my
choice to move back.  I do have to admit the weather in socal
is far superior.  I was at Childrens for 28 years and I still
keep in contact with my doctor for second opinions.

 

[Scarlett81]

I understand sometimes no matter how good your care is you have to leave for whatever circumstances.

I also go to St. Vincent's Cf Center. I've been there almost 2 years.
Dr. Walker is awesome. Very open minded. She thinks outside the typical "cf box", as I call it. She treats the whole body, not just the Cf lungs. She sends me to other great NYC specialists also, to have their input. This has helped me alot, with sinus issues, GI issues.

St. Vincent's chest PT program and head of respiratory has an international reputation, I know that. I've had chest PT done on me for 22 years, and I was DX at 2yrs by one of the best Cf docs in the business! (I thought!) Well I learned how to do chest pt and my vest correctly for the first time when I came here.

The bottom line is in 2 years my lung function has improved 46%! And I am trying to get pregnant-something I've never been able to consider in my life.

 

[anonymous]

Hey guys thanks for your input. I do not think I would be "leaving" Boston persay--- still I'd only be 3 hours away. However, I am thinking about moving to nyc, maybe for a year. It would be hard. I am at a point in my life where I would like to do something different....staying here in Boston with my whole support system would be easy, going to NYC would not, but maybe everyone needs to do something not-so-easy once in a while.

I would love to be in contact with a hosp. there, and am actually really intrigued by how much you guys like St. V's. Children's in Boston has been great for me for 21 years (I'm 23) but lately its been getting frustrating, to the point where I've even considered moving to Mass General...maybe. I have b. cepacia too, and Christian I am AMAZED that your pft's have jumped 46%. I have always wanted a doctor to "think outside the box" because I am sooooo outside the box with my CF.

I look healthy, feel good most of the time, but have b cepacia and about 45% FEV1. I have recently given up the idea of kids as well, and its depressing. My doctors has me doing the TX eval., but I dont even think I am close to ready for that, physically even! I live a normal life, and dont want a TX! Plus I am missing half a lung, and she doesnt even factor that into my PFTS. I think your doctor/program sounds great. I feel as though I am at a crossroads here and need to make a decision. I am not satisfied with the "oh its CF progressing" road that they have me on- its just not for me!

Thanks for all your info.

Caitlin
23 w/ b. cepacia
p.s. i've lurked on and around this board for a few years, havent posted in a loooong time.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>




I am not satisfied with the "oh its CF progressing" road that they have me on- its just not for me!



Thanks for all your info.



Caitlin

23 w/ b. cepacia

p.s. i've lurked on and around this board for a few years, havent posted in a loooong time.</end quote></div>



Well what I can tell you with Dr. W is that even tho CF is progressive (no one can deny that), if nothing else, that is more the reason she is stern & expects of you the most that you can give. She wants her patients to counter act as much of the natural progression as possible.

 

[anonymous]

Yes, and I expect that too. Right now pretty much anything I say goes-- my doctor never seems to have much of an opinion.

Christian- I am curious- what do you mean you really learned how to do chest pt and the vest correctly?
]
Caitlin

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Yes, and I expect that too. Right now pretty much anything I say goes-- my doctor never seems to have much of an opinion.



Christian- I am curious- what do you mean you really learned how to do chest pt and the vest correctly?

]

Caitlin</end quote></div>

I think I can answer this for Christian....excuse me for stepping on toes Christian! St. Vinny's PT Program is well known as Christian said. Patients from other clinics have been referred to them just to learn the most affective way to clear the mucous. A lot of PT programs go thru the motions or settings of clapping or the vest, but dont follow thru with the patients so they can get the most results for their time. Everything from adjusting positions & settings (as close to guidelines yet individual needs being met) to the patients way of breathing, huffing, coughing etc. Secrets that come with each persons care. Massages on a certain muscle in my back has been discovered by the PT therapists to have a huge impact on my airway restrictions. I dont know if I have answered all your ??, but if not holler & Christian will add when she gives her input.

 

[anonymous]

Its interesting that you mention that about massaging certain areas of your chest. Most techniques that I have learned to clear secretions have been, on my own. You just find out what works for you. But sometimes when I have a massage, it makes me start to cough. There is a lot more to this, and plenty that you can learn on your own, but it is really great that St. V's goes to the trouble of exploring these things with patients from the get-go.

Caitlin