pittsburgh transplant center

[TLM81]

Does anyone who has been recently evaluated here have more information on them? How long is their wait time average, do you have to live nearby beforehand, things like that?

Also, for those who are pre or post here, any hotel/apartment recommendations, restaurants, websites that have the area or hospital maps.
Any info would be helpful. Thanks!

 

[pencf]

Hey there. We were in PITT in Feb. 2012 and will be going back in a few wks for a full evaluation (or at least as much as they can fit into 3 days). My daughter with CF is 17 1/4 yrs old. They were kind enough to see her at 16 3/4 yrs old in Feb., and honestly as freaked out as I was about it all, it had some wonderfully positive outcomes. At least now, we are going for the evaluation feeling stable, and doing the testing outpatient which is a blessing, since the alternative would be, being sick in our local children's hospital and them sending us up to PITT. Emotionally that sounds way too stressful. We do have B Cepacia and have had it for almost 14 yrs. It was very quiet for 6+ years, then slowly but surely it showed its ugly head.
I saw someone posted a private message about what changes were recommended at PITT to keep BC quiet, I am sure they are the same. They took us off Tobi (wasn't covering the bug) and put us on inhaled FORTAZ, not approved by FDA for inhalation but is used often by BC patients. Its a good drug, and did the job, keeping it quiet. We upped our Azithromax to once a day every day (usually this is M/W/F) as an anti-inflammatory. We are on Bactrium 2x a day, every day and we upped Zenpep to 5 or 6 with meals (from 4). We were recommended to do 12 wks Pulmo rehab, and we did more like 16+ (we got it covered). All that made a big difference and I am beyond thankful. Hoping to keep the momentum going for as long as possible!
Hope this helps. Our first experience at PITT was obviously positive, based on results, we are hoping for more of the same in the coming weeks when we visit in early Sept.

 

[markinohio]

I was evaluated in Pitt about two years ago. Still not sick enough to be listed yet. I live about 3 1/2 hours from Pitt in Ohio. They said that is about the limit of how far away a person could live. Once your transplanted, you need to stay in Pitt for rehab and appointments for some time. I think it's three to six months, but can't remember for sure. We stayed at The Family House during my evaluation. It is like a Ronald McDonald House. It is a block or two away from the hospital and does cost some money to stay there. UMPC in on the University of Pittsburgh campus, so it can be quite busy. There are five hospitals in the complex and alot of buildings and people in the area. The streets are one-way and can be confusing. There are places to eat close by, delis, coffe shops and some fast food resturants, places you would find on a college campus. I don't know about apartments for rent, I haven't reseached that part.
I hope that answered some of your questions. UPMC is a busy place, but it also a really good place to get a transplant.

 

[athanasia]

I was transplanted there and also live in Ohio in the Toledo area so about 3.5 hours away. I can say with confidence that I would not be alive if I had went anywhere else. If you have cepacia, I would recommend them because at the time of my transplant, they were the only place in the country that would even accept patients with cepacia. They have been doing studies and learning as much as possible about how to better care for patients with cepacia. I also did the inhaled fortaz as listed before. The wait depends on your blood type and your lung allocation score but they are fantastic! I recommend them to anyone I talk to. The docs are amazing and very honest. As Mark said, they do have family house for accommodations and in my case, my medicaid pays for my stay there so I would recommend checking into your state's medicaid information to see if they also help you. Maureen, the social worker there at Pittsburgh is amazing and can also help you with this if you call her.
As far as living there, if you are active on the list you cannot be any farther than 3.4 -4 hours away when you are active because if you get the call, you need to be able to get to the hospital in that amount of time. Or you can live in the area during your wait time. After, you need to stay in the area for at least 8 weeks while they keep close watch on you for your levels and any signs of rejection or infection. If things are going well, they will most likely send you home after the 8 weeks but they will want to see you back in a month or so and keep seeing you every few months for check ups. Over time, this may stretch to every 6 months to once a year as you get farther out depending on how your health is. I still see them every 4 months as I am only a few hours away and can make a day trip out of it.

I hope that answers your questions but if you have any others, please ask. I will be happy to tell you anything you want to know about UPMC

 

[beautifulsoul]

I was transplanted at The Children's Hospital of Pittsburgh when I was 15 years old. I'm 21 now and will be transitioning to the adult hospital with in the next year. I waited 2 years for lungs. We (my family) were possibly thinking that since I'm so small (5 foot) maybe it took a while longer to find the right size lungs that were a match for me. I live in Cincinnati Ohio which is about 5 hours away. I didn't have to move there beforehand and I did not do any kind of pulmonary rehab BEFORE transplant. I definitely did afterwards. When I got the call I was transported by ambulance to a small airport here in Cinti. and flew to pittsburgh in a very small plane. We were told that if the transplant center is more than 5 hours away it is required that you move to that location. My family was in no condition to move so that's part of why we chose Pittsburgh.

I stayed in Pittsburgh for a litter over 2 months after my transplant. We stayed at the waterfront apartments. It's a pretty large apartment complex. There is a long lake behind it with a paved walkway which was very nice to walk after transplant! They reserve some apartments especially for people staying long term at the hospitals. The apartments are already furnished with everything you need. They were very nice! Right across the street is tons of shopping, restaurants, and a grocery store for food. I loved it!

I have to follow up with Pittsburgh every 6 months which isn't too bad but of course we have to drive the 5 hours ourselves. I think it's worth it though. It's a great center.

 

[SweetSol]

I had my transplant at UPMC in June 2012. I am from Miami and I ended up at Pitt after various hospitals denied me because I was "high risk" (I needed a double lung AND liver transplant). When I arrived to Pitt, I was a mess. I had Splenomegaly, liver cirrhosis, portal hypertension, thrombocytopenia, esophageal varices, CFRD and renal failure & on dialysis.
The doctors here are AMAZING. They care deeply and sincerely for their patients. Mine changed some meds in my treatment and had me start pulmonary rehab while I waited. My wait was expected to be long since I needed both lungs, liver and possibly kidneys, all from the same person to minimize rejection. On top of that, I am very petite (4'11 & 80 lbs).
I started this new regimen and miraculously about 14 months after my arrival, my kidneys began to function, no more dialysis and my pft's had improved so much that I was moved to the inactive lung list. In other words, I no longer needed a lung transplant and a kidney transplant was no longer part of the plans! Eight months later, I received my liver transplant.
It's now been 2 months and I'm still here but it won't be for long.
While I waited, I also stayed at Family House and by the way, made unbelievable and life long friendships. It does cost but you can qualify for a discounted rate. UPMC is located in Oakland- its basically the hospitals and the universities, literally, there's places to eat everywhere you go.
And about the wait, in the 2 years that I have lived here, I have seen people wait as little as 10 days. Like it was said before, it all depends on how severely sick you are.
GOOD LUCK!

 

[Tracy390]

Beautifulsoul's mother's input

I was transplanted at The Children's Hospital of Pittsburgh when I was 15 years old. I'm 21 now and will be transitioning to the adult hospital with in the next year. I waited 2 years for lungs. We (my family) were possibly thinking that since I'm so small (5 foot) maybe it took a while longer to find the right size lungs that were a match for me. I live in Cincinnati Ohio which is about 5 hours away. I didn't have to move there beforehand and I did not do any kind of pulmonary rehab BEFORE transplant. I definitely did afterwards. When I got the call I was transported by ambulance to a small airport here in Cinti. and flew to pittsburgh in a very small plane. We were told that if the transplant center is more than 5 hours away it is required that you move to that location. My family was in no condition to move so that's part of why we chose Pittsburgh.

I stayed in Pittsburgh for a litter over 2 months after my transplant. We stayed at the waterfront apartments. It's a pretty large apartment complex. There is a long lake behind it with a paved walkway which was very nice to walk after transplant! They reserve some apartments especially for people staying long term at the hospitals. The apartments are already furnished with everything you need. They were very nice! Right across the street is tons of shopping, restaurants, and a grocery store for food. I loved it!

I have to follow up with Pittsburgh every 6 months which isn't too bad but of course we have to drive the 5 hours ourselves. I think it's worth it though. It's a great center.

Hello. I'm Amber's (beautifulsoul's) mother. I also wanted to add that the Ronald McDonald house that is connected to the hospital is very convenient & only $15/day. It's very nice with individual apartments (1 bedroom with pull out sofa bed in livingroom). You have your own kitchen & bath which is a huge plus. There is no oven in the kitchens but they have a huge community kitchen on the upper level if you choose to cook a hot meal. Sometimes other organizations sponsor a meal & they have food delivered to the patients (for all to share). The kitchens do have a regular size fridge & microwave & I believe a dishwasher as well. The other patients we have met there has been friendly. It's a newer facility (3 years) & was not available when Amber had her transplant or we would have stayed there. It's connected to the hospital so it's so easy to gain access anytime. The waterfront Amber mentioned is where we stayed & as she said it was very nice. Children's Pittsburgh is an excellent hospital & I believe Amber has done well post-transplant because of the care she has received there. Hope this additional info. helps!