Pittsburgh Evaluation

Last week I spent four days in Pittsburgh, PA for a lung transplant evaluation.  As most of you know, New York wanted me to be double listed because after a year of being on the list, I still have not gotten a call.  My doctor wants to increase my chances of getting lungs sooner so she made this suggestion to me.  NY Presbyterian sent a referral along with some files to University of Pittsburgh Medical Center (UPMC).  After collecting all my medical information and getting insurance approval, I was given an itinerary to come to Pittsburgh.

Sunday night Jay and I dropped our kitty Lindy off at my mom's and headed to Pittsburgh. It took us about 3 1/2 hours to get to the hotel from our house.  The drive wasn't too bad.  It was evening and I have a harder time breathing then, but I was OK for the most part.  I brought my portable liquid container for the ride.  I had set up for liquid oxygen to be delivered to the room when we got there so I could keep filling that up and using it when we went for the appointments.  It is so much easier than the big electric concentrator.  We brought the POC as a backup.

We stayed at a place called Neville House.  This is one of four locations that make up family house.  Check out the link for more information on them.  When we got there we signed in and he gave each of us lanyards.  On the lanyard was a key to the room and an electronic thing to get into the building.  After we checked in we got a tour of the place.  In the basement there was a huge kitchen and a dining area.  There was a pantry with a specified place for each room in the house to store their own food.  They also had coin operated laundry and a computer to use.  He then took us up to our room.  It had two single beds, dresser, TV, end table... the basics.  The bathroom was small, but my wheelchair still was able to fit in there. Overall the room was small and basic, but clean and comfortable.  One thing that would have been nice is a desk.  This place was very accommodating and not expensive at all.  For the room we got it was only $50 a night.  This also included cable, internet, shuttle, and discounted passes for the hospital garage.  There might be more things available, but this is what I know of.

Day One:  Monday June 10th

The first day was just orientation.  Jay and I decided to take our SUV instead of the shuttle so we had the freedom of doing things at our own pace.  The hospital was about six minutes away from the house.  When we got to the hospital we pulled up to valet and they took the car and parked it.  We went inside and went to the cafeteria before the orientation started.  The cafeteria in the Presbyterian building was pretty big with quite a variety to choose from.  It was much nicer than the one in NYP.  We then headed to the conference room which was right next door.  We went in and were handed a folder.  Inside were forms to fill out, some more information about transplant and a print out of the orientation presentation.

The instructor went over all the forms with us first.  There was nothing really exciting in there, just paperwork about family health history, list of meds and doctors.  Basic boring stuff.  Then a lung transplant recipient named John Sullivan talked to us about his journey.  It is unbelievable how rough his journey was.  He is a very strong man with a great outlook on life.  If you are interested check out his story.  A lot of the things that happened to him were because of bad luck and limited knowledge at the time.  He wanted to let us all know that a transplant can be great, but it is not going to be an easy fix.  It is going to take hard work and determination to survive after the transplant.

After that a surgeon talked to us.  It was mostly review for Jay and I.  We did however find out that they are doing an ex-vivo study here as well.  Not the same study as in NYP, but similar.  In New York they are taking lungs that would not normally pass inspection and trying to fix them up to be transplantable.  They put them in an ex-vivo machine for up to four hours to see if they can be used.  Here at UPMC they are putting lungs in an ex-vivo machine to transport the lungs from donor to recipient.  It is a randomized study so half will get lungs that were transported on ice (how they do it now) while the other half receives lungs transported in the box.  I am definitely going to sign up for this study as well.  I have some videos about these studies under Lung Transplant Info.  We also learned that this center normally does an Antero-lateral approach when putting in the lungs.  This is two small incisions on the side of chest, one for each lung.  It is this versus the clam-shell which is a cut that goes all the way across the chest right under the breast.  I like this cut much more because it is less invasive and heals much faster.  I am under the assumption that NYP only does clam-shell.  This is a question I am going to have to ask the next time I go.

When surgeon was done talking, a social worker came in and talked for a little while.  She told us about the Family House, a few of the center's policies and what to expect the next few days.  All in all I enjoyed it.  I think this approach is much nicer then having to attend twelve seminars at NYP.  Here all the information is given up front, expectations are told right off the bat, everyone is given the same information, and things are not missed.  It is much more organized and so much easier than trying to get to seminar after seminar.  The whole thing took about three and half hours.

Day Two:  Tuesday June 11th

This day was meeting a bunch of people.  First was my coordinator.  We went over all my medical information and made sure they had all the right stuff.  We went over what tests they had and which ones they still needed from me.  A surgeon then came in and talked to me about the actual surgery and addressed any questions we had.  One thing I did ask him was if pictures were taken.  I wanted to know if they take pictures in the OR.  I really want to see what my lungs look like when they come out.  He said that they do that and will show me afterward.  I was so happy to hear that.  Then I met the financial analyst who went over insurance information.  Basically what is covered and what is not and then what is covered after transplant and what is not. This was all very helpful.  I found out a lot of information from her.  This gave me piece of mind to understand everything and know what to expect financially.

Next were a set of PFT's.  Those are pretty straight forward except it was a full set obviously.  First were the quick ones where I take a breath in and blow out fast.  Then I had to do puppy pants.  This is when I start panting and then they block the air and I have to keep panting against the obstruction.  After that was breathe regular then take a breath in till she says stop and I hold my breath at the point until she tells me to blow it all out slowly.  Finally I had to the original quick ones again and I was done.  Each one had to be done three times.  This was the first time I have had to do a full set of PFT's when on 24/7 oxygen.  It was not fun.  It was pretty exhausting actually.  They are a work out even if not on oxygen.  I would do one, put the O2 back on, relax for a minute and do it again.

After that we met with a nutritionist.  She just went over what I am eating and doing right now and what to expect after transplant.  This was review from NYP.  Explaining that meat has to be fully cooked, stay away from buffets, careful with cross contamination.  This was all review to us from NYC and a lot if it is common sense stuff about food safety.

Day Three:  Wednesday June 12th

This day was all tests.  I had to do a six minute walk test first.  This time I was able to walk 150 feet which was better than my last test where I walked 88.  I then went for some blood work.  They took twenty-five vials from me.  Four were 8 ml vials and the rest were a mix between 6 ml and 4 ml vials.  Good thing I had eaten a candy bar shortly before that.  They also collected a urine sample.  After that I did a chest X-ray and an EKG.  For those not sure of what an EKG is, it is a measurement of the electrical activity of your heart over a short time.  They attach these sticky things on you and then attach you to the machine.  They put one on each wrist, each ankle, and then six on your chest in various places around the heart.  It took longer to set up for the test then the test itself.

Day Four:  Thursday June 13th

On the last day I had to do a DESAT test.  This is where they have me walk on a treadmill without any oxygen and then have me sit once my Pulse Ox falls below 90.  They record the amount of time walked and then turn me up to one liter and do it again.  They continue to do this until the oxygen is at 6.  After that we met with a social worker.  She went over a bunch of things with us.  She wanted to know about me, my hobbies, how I was emotionally.  Then she talked to us about the transplant.  This center requires that you be no more than two hours away from the center for two months after the transplant.  So we are going to have to move down there for those two months.  She wanted to know how I was doing financially and asked if I had done a fundraiser.  I told her that I had and she was very happy with that because this process is not a cheap one.  She said that if we were looking for a furnished apartment it would cost about $1,700 a month.  I haven't done any research on any of this yet, but she said she would send me some more information.

When we were done there I met with the Pulmonologist.  Basically straight forward appointment and went over medial stuff.  She told me that they all meet on Tuesdays about who to list and I would get a call Wednesday with their decision.  It will either be I am too healthy and will be seen until I get sick enough for the list, I will be put on the list right away, or I am ineligible to be listed.  She said that I would more than likely be listed considering I already was listed at another center.

Overall I really like this center, just as I like New York Presbyterian.  It does not make a difference which center calls me for lungs.  Whoever calls first I will accept.  Each center have their own respective strengths and weaknesses.  I like the organization of UPMC, but I like my doctor at NYP.  It is also going to be easier on my family if we are in Pittsburgh.  NYC is such an expensive place.  On the whole I am confident in both centers’ abilities and would happily be transplanted at either.