University of Pennsylvania

[shay]

Hi Everyone,
My daughter's pediatric CF clinic is in quite a turnover phase with much of the staff, including her physician. Since she is almost 18, we are considering transitioning to the adult clinic at the Hospital of the University of Pennsylvania. I would love to get feedback from those of you that have been or are currently being seen there. I would appreciate all input. We are quite nervous about making this huge step.
Thanks!
Shay

 

[Beccamom]

I go to the University of Pennsylvania and I absolutely love them. They see me when I am sick. They help coordinate appointmente for the same day. I get asked about every study I am eligjble for being conducted at CHOP or Penn and yet I am not pressured to participate. I love the entire team from doctors to respiratory to nurses to nutrition, social work, and endocrinology. I already asked about ttansitioning my 14 year old and they will welcome her when she is the right age between 18 and 23. As for waiting sometimes appointments are long, but I never wait in the waiting room and only once saw a CF patient in the waiting room. Immediately I was asked to come back in 15 minutes since I was early. Thry are also very open and honest and offer video classes and online chat sessions each year with the CFF stats discussed and as the CFF has any new I formation they put together a slide show and sometimes offer online classes where you can chat. Please ask any questions.

 

[knowitall]

I've been driving from Jersey to UPENN for sometime. I love the care that I get there, and the team, Hadj, and Dorgan,Marianne and Nicole are all great! I absolutely don't mind making the drive or being admitted away from home one bit.

 

[imported_MaggieB]

Long-time patient at HUP. They are the best! The staff are wonderful, doctors amazing, CRNP Marianne is phenomenal, and nutrition folks are great. I used to go to an adult clinic in Philly where I said the staff were lovely and really doing their best to keep me alive until I died. Then, for insurance reasons, I switched to HUP and realized, they are keeping me alive until a cure/control. BIG difference! Good luck!

 

[shay]

Thanks so much for your replies to my post! I have sent you all private messages with more questions. If you have the time, we would love to hear more

 

[BikerEd]

I grew up military brat. I have had the opportunity to go multiple CF clinics in my lifetime. My parents decided to homebase us out of Boston Childerns Hospital because that is a great clinic, and that's where my family is from. At 28 they said it was time to transition. Seeing I live in Pennsylvania I decided to not drive six hours one way and lose 2 to 3 days of work for clinic appointments, I chose a pulmonary clinc in my area. My doctor urged my to go to HUP. I'm glad he did. I love the team there. Your not just a patient XYZ, it's more like your a family member. I can send an email and receive a response within minutes, not just from an administrator but also from the clinic director. If I request a call it usually happens that day. I can not speak more highly of the team there. They are constantly on all the new developments and keep you updated as well. Honestly, I've been to multiple clinics in 42 years and I rate this one of the best.

Best of luck

Ed

 

[shay]

Thanks BikerEd. I sent you a PM with more questions if you have the time.

 

[imchatn]

As the Mom of a 25yo Son with CF who transitioned from St. Chris. to U of P a few years ago we are VERY happy with them. I can not say enough wonderful things about everyone at U of P. And as a parent (as long as your daughter approves) you are still kept "in the loop". We also travel from NJ, and from our area (Gloucester County) it is an easier drive than St. Chris.

 

[shay]

Hi imchatn,
Thanks for your reply. If it's okay, I will PM with more questions.
Thanks!
Shay

 

[jricci]

Hi Shay-
I just sent you a pm.
I know this is an old thread, but saw that you’re still active on the forum.
I was hoping you could give me some feedback on your daughter’s experience with UPENN.
Thanks!

 

[Jshet22]

Shay, maybe I'm confused but is your daughter currently a patient at children's hospital Pittsburgh or Philli? I thought you meant philly when you said CHOP.