<--testing my fat mass- I did good on this one!! ;-) As we have learned the last few months (now almost 6 months listed), the list at Columbia is quite long and i am not at the top of the list yet. This poses and issue because winter is especially hard for me and I usually see a decline during these months and I don't have much function left to spare. So earlier this week I was finally scheduled to do the battery of tests down at the University of Pennsylvania to see if they would accept me as a patient for duel listing for a double lung transplant. Normally I would be excited for traveling anywhere, but now it is usually just a constant anxiety. Like one stupid long math problem "Sally is traveling 65mph to reach her destination 45 miles away using a size D oxygen tank at 5Liters/min... how long does sally have before she reaches her destination? will sally run out of oxygen and get dizzy on while driving or will she reach her destination in time to switch to another tank? how many tanks will Sally need to arrive, spend one hour and return at the exact same speed?". Anyone that knows me knows how much i hate math, so usually my approach is "f*ck you sally, i'll kill my back and load 10 tanks to go somewhere 10 min away" so I just completely avoid the anxiety of thinking i don't have enough. So basically Johnny and my parents needed to pack and unpack 25 tanks and concentrator in the car for our trip!! I am definitely keeping them physically fit!
My parents, Johnny and I took the trip to Philadelphia to complete two full days of evaluation work ups. They accepted most of my results passed over from Columbia but i still had tests, exams and bloodwork from UPenn to complete and after just getting out of the hospital and recovering from a bad pneumonia, it was quite exhausting.
Some of the exams they needed to re-do at Penn to calculate a Lung Allocation Score, which determines where you are listed is a:
walk study (this is basically to show how physically fit you are keeping yourself by measuring your oxygen levels and distance you can walk in 6 minutes. They also do a few strength tests to see if the rest of your body or muscles are wasting or becoming frail. I think this is probably where I am the strongest. Despite my lung function, I make a point to try to walk myself as much as possible... There are times where a wheelchair is necessary but i really prefer to keep my muscles moving as much as i can right now and the physical therapist were all very motivating and positive about my efforts and ability to do the strength tests. I almost always tire out physically from labored breathing way before I feel muscle fatigue. My distance walked decreased almost 100ft from my previous walk at columbia and my rotator muscles were weakened (i'm sure from constant coughing) but its expected after my recent pneumonia. I still got a great feeling from the physically therapy team. We discussed the post transplant pulmonary rehab program at Upenn and how they require all patients to be in program for 3 months following transplant... i would feel in really good hands there.
Barium Swallow Study- This is done prior to lung transplant to assess the presence or level of reflux or GERD in patients. Reflux poses a risk for aspirating food or fluid into the lungs and increasing chances of infection or rejection complications. I was diagnosed with GERD many years ago so at this point it was just assessing the degree and how well its been managed, Thankfully I still only showed mild reflux and they did however find a small hiatial hernia as well... I wasn't sure how that developed but I was told that if it wasn't causing me pain it wasn't concerning and I probably developed it by years of coughing hard.
The other exams were just X-rays and bloodwork then the rest of the the appointments were basically meeting all the doctors and support staff to discuss the program and care from the support teams available at the center. Unfortunately, if i receive lungs from Upenn, i will have to relocate for a minimum of 3 months post transplant to live nearby when i am discharged from the hospital. They require patients to live nearby for pulmonary rehab 3x week for several hrs/day and checkups weekly. This isn't the exact ideal situation i hoped for but if i was to live anywhere away from home, Philadelphia would be where I would consider my second home. My husband and I have grown to love the city when we lived there and have the advantage of some amazing friends in the area that are like family to us. Of course this would require some more financial planning and searching for living accommodations when the time comes but it is all manageable.
After two days of tests and meeting with all the Doctors and support staff, my family and I were all in agreement that this was the perfect place to double list. I felt very at home and welcomed from everyone I met and despite the "statistics" and all the disclaimers that they are required to give about lung transplant (which we obviously know at this point), everyone was still aligned with a very positive outlook towards the future.
We dragged ourselves into the last appointment of the last day and I honestly felt like we just ran a whole marathon. But i was excited and hopeful thinking that we've gotten such great feelings from everyone all day that this last appointment would be the same and my case would go before the review board and i'd be listed in a few days with no problems. . well, not quite. Here's where things get tricky. My last appointment of the day was with the Pulmonologist... who had reviewed my labs from that morning prior to seeing me. Unfortunately my labs for the past month or so have been reflecting mild kidney dysfunction. I had just spent a whole 6 weeks on strong IV medication and to be honest, after more than 15 years of those meds, I should probably be shocked that they have lasted this long without failing me. So we listened to the news from the doctor about my levels and how going into transplant with damaged kidneys significantly increases the risk of multi-organ failure following the procedure, as well as acute rejection. All of those "statistics" we were required to hear in previous appointments were increased when dealing with two failing organs. All of a sudden, all the positive reinforcement went down the drain and i was sitting thinking about the amazing race my lungs and kidneys are now doing and which one will survive longer? How am i supposed to treat my lungs with the infections if i can't take medication that will stress my kidneys? The other issue with my bloodwork seemed to be my level of medication in the blood. I had officially been on a new medication to treat my fungal infection but the levels sent over from my hospital were not high enough to this Pulmonologists standards. He had previous experience with this particular fungal infection which is rare and hard to eradicate. Being that I've been on the medication for some time without adequate levels absorbed, it was his fear that my new lungs post transplant would be at risk for contracting the same fungal infection.
I don't want to sound like it was all negative because it wasn't, he also had good things to talk about and I am happy that he is being thorough and aggressive about treatment plans, but it definitely made me realize that this "listing" wasn't going to be as quick as a 2 day marathon.
I admit that i left that appointment and just broke down on the drive home... There was a million questions in my head, and no real answers, because... there isn't any real answers. Thankfully johnny is getting to be a pro at handling me during these moments so a stop for food helped calm me down. ;)
I got the call from Upenn three days later saying that they have accepted me into the program (YAY!) BUT- have decided not to list me until we have more tests (from here in NY) to figure out what the real state of my kidneys are and once re-tested we can make a plan from that point on about when to list. It's been a rough week with my emotions being just everywhere and still not physically feeling the best but I am trying to keep everything in perspective and be thankful for what I have. The love from friends and family means everything to me, and truly keeps me going at times like this. Thank you from the bottom of my heart.