Tuesday, April 20, 2010

Appointments...Round 2!

Today was definitely a much more positive day. I was prepared for the worst, but really ended up feeling pretty validated and a little less nervous by 4:00.

Cayden got to "skip" morning session at school. Our day started at 10:00 with an appointment with Rebecca, Cayden's psychologist. She specifically works with transplant kids dealing with their feelings pre and post transplant and has literally seen hundreds of kids who have undergone transplants. We all met with her together for awhile, then it was time for Cayden to meet with her by himself and me to hustle on over to Lucile Packard Children's Hospital for my 11:00 with the Pulmonary Function Lab.

I was still trying to figure out why it was necessary for me to be seen by the specialist in the Pulmonary Lab. Yesterday as we were headed back to the parking lot, Sarah our Transplant Coordinator while Carmela is away at Disneyland this week (nice!), came running across shouting my name. She said the Hepatologist from yesterday, with the "awful" bedside manner, saw an obstruction on my chest x-ray from February and wanted it checked out further. Weird...wouldn't I notice if I had an obstruction in my own lungs? Mary Jo in the lab was really sweet. The lab experience was interesting. She had me do a variety of breathing tests to check whether or not there really was a blockage after all. I sat in this glass booth and had to wrap my lips around a contraption that reminded my of my scuba regulator. One of the tests emptied my lungs of air and filled them with oxygen. Another test had me take regular breaths, then breathe in deeply and expel as much air as I possibly could for as long as I could. There was a funny little flying toaster with flying toasts that I was supposted to "catch". Another time I had to breathe out until I made the balloon on the screen "pop". Mary Jo said the kids love the games...heck, I kinda liked them too. They made me work a little harder! Still another test had me keep trying to inhale and then later exhale with resistance. Most of the tests I passed with flying colors, but on the one where I had to inhale deeply and then exhale, I had to do the test 3 times instead of two. She asked if I had been ill a lot when I was little...no, but I did mention that my mom had smoked until I was 16. That could be a contributor she said. Apparently, I have mild pulmonary obstruction. It isn't serious and won't impact my ability to be Cayden's donor, but still, it's weird to find out that I have something I didn't even know about.

After the lab and Cayden's appointments it was back home for a quick lunch and then off to school for Cayden and over to the Blood Donation building for me. Today was the day I got to donate a pint of my own blood for my surgery just in case I needed it. I was floored when I saw the sheet of charges. You know how they love for people to donate blood at the blood bank, well when you donate your OWN blood, they charge you an arm and a leg...$325 worth to be specific! Well, ok, not me...I'm not paying for my own blood, but it's part of the "Liver Transplant" package deal. ;) And if that isn't enough, if I don't need my blood during surgery, they can't even use it for anyone else. It is specifically prepared for me. They did mention that they could use my blood for research. Did I already mention that I don't really like giving blood? The tech there, Mary Ann, had an English accent. She was very accomodating when I told her that I don't really like to see my own blood or the needle in my arm, and consequently covered it up so I didn't get a "crick" in my neck having to look the other way the entire time. Unfortunately, when my bag was all filled, she hadn't noticed that one of the vials they use to run all the tests wasn't filled with blood. She profusely apologized for having to "stick" my other arm to get the last vial of blood from me. At least it wasn't as big and didn't hurt as bad as the first needle. After a little snack of a glass of lemonade and a chocolate cookie (yum!), I was on my merry way over to the transplant clinic for my meeting with the Independent Adult Liver Donor Advocate.

On my way over, I was mentally preparing myself for more of the "informed consent" blah blah blah that had bummed me out yesterday. I was pleasantly surprised. Jessie, who had previously worked with the transplant team, was wonderful! It's her job to advocate for me. While she gave me lots of information...like the fact that I won't have the "J" scar that I've heard about, it'll be more like the Mercedes Benz symbol (upsidedown Y). Cayden and I will have fun matching scars...I've pretty much gotten over the fact that my belly won't be a pretty sight after the surgery - not that it is now, anyway! We did talk about risks, but not in the way that they were presented to me yesterday. I was reassured that Cayden and I are in excellent hands and have two of the best surgeons on the west coast. Dr. Esquivel is the head of the entire transplant program here at Stanford and has been at the hospital since 1998. Jessie has been in the operating room of many of Dr. Esquivel's surgeries and has seen first hand what it's like for the liver donors both during surgery and post surgery. She told me that I will probably still feel a bit tired after 3 months but by 6 months, all of the adult donors she consults with were feeling as good as they did prior to the surgery...now that's what I wanted to hear! Another encouraging piece of news was that the sooner I get my body out of that hospital bed and start moving around, the sooner my body will heal and I will get to bust out of the hospital. You can bet I'll be doing everything I can to fast track my recovery.

With the day of appointments behind us and school over for the day, we headed home. I unfortunately am reaping the "unbenefits" of having postponed my own hysterctomy that was originally scheduled for last week and went straight for the Tylenol. I'm still waiting to find out if I can get that "two-fer" surgery I was hoping to have but am not holding my breath on it. Between that pain, the lack of coffee and sleep and my pint of blood donated for my surgery, I felt like I had been run over by a Mack truck. A nap was definitely in order today.

Tomorrow is another day closer to the big event. Five days left to be exact. At least for now, I feel a sense of calm and peace about everything. With just one appointment tomorrow, whatever will I do with myself?

1 comment:

  1. Amanda - Wow! I just read both of your posts...so much to take in. Stay strong and I like you are trying to keep some sense of humor through it all. I'm thinking of all of you! Love you Girl! Lisa