upenn transplant program

[justme15]

I am thinking about getting multiple listed at UPenn's transplant program because my sister lives in the area.  Does anybody have any opinions or experiences with this program?  Any transplant centers in Philadelphia that you would recommend/not recommend?

thanks!

[Rerun]

   

[RuthWells]

I had an awful experience at Penn.  My brother registered to be my donor when the time came, and 18 months later when we started pushing the process forward, they disqualified him as a donor based on a medication he had been taking - information that thyed been aware of for 18 months!!  We appealed and went through all channels with no luck, so I started researching other centers in our area.  The medication he was on was not an automatic DQ at the rest of the centers, and I ended up having the transplant 8 weeks ago at Lankenau Hospital in Wynnewood (just outside of Philadelphia).  It's a much smaller program than Penn's, and I found the attention to be very personal and would recommend their program to anyone.

What I infer from my experience at Penn is that they are very wedded to their stellar program statistics and are not willing to deviate at all from protocols is there is the slightest risk that their statistical outcomes will be affected.  In addition, the program there has gotten HUGE and as a result patients are treated like an assembly line.  It was not this way when my father had his transplants there (in 1981, mid 90's and 2000), but patient care has gotten really slipshod.

My two cents!

[justme15]

wow, that's good info. Thanks!

[RuthWells]

Your mileage may vary, of course, but I was very disappointed, particularly as my family had such a long relationship with the transplant program there.  It couldn't hurt to have an intake appointment with them and get a feel for the place yourself.  They do a group orientation weekly, followed by individual meetings with social worker, dietician, etc. 

By contrast, at Lankenau, my intake consisted of a private meeting with the nephrologist (he spent an hour with me), a private meeting with the surgeon (also the head of the program - he spent 1.5 hours with me), and shorter meetings with the nurse coordinator and social worker.  Everyone in the department knew my name when I walked in the door.

Best of luck - it's a hard decision to make!

[big777bill]

 I was evaluated at both Penn and Jefferson for my liver transplant. I felt Jefferson was much more personal. Penn has the largest transplant unit in the Philly area with Jeff being #2. I would recommend Jefferson without reservation. Now keep in mind you're looking at a kidney and I had a liver so it's 2 different departments. Check them both out what can it hurt?

[justme15]

well the only problem is, I live in georgia.  so I'm trying to make as few trips as possible and get the most bang for my buck, so to say...  I don't want to waste my time, and time off work to visit a transplant center that has a poor reputation, ya know?

[big777bill]

 Upenn is an excellent transplant center. With me it was a matter of personal preference. I live about 35 miles east of Philly so it was no problem to check out the local centers. I thought you were in the area. You wouldn't go wrong with either Penn or Jefferson. Penn has a higher national rating in certain areas over Jefferson. My Drs told me the Philly area is one of the best in the country as far as wait times for getting an organ. Much better than down south or the midwest. Good luck in which ever way you decide to go.

[jeannea]

I'm confused how you can live in Georgia and list in Philly. Most centers require you to be there within 4 hours after you get the call. That seems impossible.

[justme15]

hmm.. I don't know. I will ask how that works.  My sister lives outside of Philly so I will  have somewhere to stay after the transplant, but I didn't think about the time involved with getting there for the transplant.  I will find out today!

[justme15]

Just spoke with a nurse from Upenn. She said that it is very possible.  Apparently they don't have a time restriction.  She said they have people listed from all over the US.  FYI.. she also said their wait time is 4-5 years on average.