October 6, 2012

October 6, 2012

In the days leading up to a long-distance journey to see a new doctor, many scenarios can flash through my mind. For instance, there is the memory of the migraine specialist in Cleveland who initiated my appointment with the command, "Take those glasses off. No one likes talking to someone wearing sunglasses." But then there was the positively charming hematologist/oncologist at Johns-Hopkins, so personable and caring. He even heated my therapeutic corn bag in his microwave! Would this new doctor be like the nut in South Carolina who threw his highlighter across the room when we couldn't adequately sum up the "headline" of my illness in five words or less? Or like my beloved gastroenterologist in Florida who brought her children to visit me on the weekends when I was in the hospital? Although I have experienced the entire gamut of physician personality types, prior to each major trip, I still have a nerve-racking curiosity. I will break the suspense right now and tell you that my trip to Cincinnati Children's Hospital could not have been any better! Just as I remembered from my visit last year, the HLH clinic as a whole is beyond impressive. I esteem their waiting room as the best I have ever seen. The walls are covered with safari animals, beautifully portrayed in bright, vivid colors. But aside from the aesthetics, their waiting system is incredibly functional. They have hallways of exam rooms so that the immunocompromised patients are promptly given their own place in an effort to limit their exposure to germs. And Dr. Filipovich. Now, I have seen a lot of doctors, many of them touting the moniker of "expert". But unfortunately such expertise often comes with quite a bit of ego attached to it. Some doctors will walk into the room with a confident air about them, assured that they have all of the solutions to my problems. But over the years I have found that such an unrealistic approach to my complex medical history typically leads to absolutely nothing. However Dr. Filipovich, who is undoubtedly an expert as denoted by her brilliance regarding HLH, is one of the most humble and empathetic doctors I have met. She is not afraid to acknowledge that, being human, she does not have all of the answers to our many questions... But she will do her best to brainstorm and try to figure some of them out. My case of HLH is unique in that I was officially diagnosed at the age of twenty, while most patients are little babies or young children. As we decipher more and more of what is going on with me, we are finding that most things point to mitochondrial disease as being at the very root of the vast majority of my medical issues. Dr. Filipovich believes that this likely holds true to my HLH as well, that my mito has led me to develop this hematologic disorder. Therefore she thinks that we are on the right track in pursuing an appointment with Dr. Korson, the mitochondrial specialist that I will be seeing in Boston next month. Also, considering that my GI symptoms are so prominent, she suggested that I see a GI doctor who has an understanding of mito and HLH, in addition to digestive tract paralysis. Dr. Yazigi, the GI doc whom I saw and loved so much in Cincinnati last year has since transferred to Georgetown in Washington, D.C. Perhaps once we are through with the upcoming travel to Boston we will consider making a trip to see Dr. Yazigi, too. Additionally Dr. Filipovich is running some tests, including one that particularly catches my interest. They drew blood from both my parents and me to sequence each of our genomes, trying to determine if a combination of genes that I inherited from my parents gave me a rare mutation, causing me to have HLH. This test is part of a research study that I understand they use in notably puzzling cases. The last time they ran this test, it took about eight months for the results to return, but they found an answer. I find this very encouraging! Because of the complex nature of genetics, it's hard to imagine that scientists will ever understand them completely. But there is so much research being done, they are continuously discovering new mutations all the time. It took a few minutes for my nurse to draw the substantial amount of blood for the testing, so we got to chit-chatting about all kinds of things, from pink lemonade-flavored saline flushes, to my really awesome brother-in-law. (Did you hear? I was given the gift of gab.) And somewhere within all that gabbing, my nurse informed me that the hospital offered free tickets for the Cincinnati Zoo! I have always dreamed of rehabilitating lions into the wild. And if that didn't work out, I wanted to be a zoo vet. Then life took a few twists and turns, so we will have to wait and see what God has planned. But obviously, I love animals! A few years ago my mom and I spent an extensive stay at a Ronald McDonald House in Chicago. And each day that the weather allowed, we had the pleasure of walking to the Lincoln Park Zoo and visiting all of my animal pals! I never go to the zoo here in St. Louis, as the long car ride makes me feel awfully sick before the fun even begins. But fortunately for me, the Cincinnati Zoo is about two blocks away from the hospital! And what a lovely zoo it is at that. It is actually a botanical garden and a zoo built into one, so there are the most beautiful flowers amongst the exhibits. My favorite animals were the white lions, very unique, magnificent creatures. They have a rare "leucism" mutation, causing them to be white... A much more pleasant mutation than those related to mitochondrial disease to be sure. 20130326-221415.jpg Anyway, I simply had a marvelous time! It is a very infrequent occasion for me to do this sort of thing. It rained a bit, but we were enjoying ourselves so much, it didn't even matter! My feet were damp, and Mary Poppins would have scolded me, giving me a dose of that magical tonic, and I was very, very happy about the whole jolly holiday. And then the next day we returned home. Car travel is not much fun in my estimation. I find car rides pretty painful, so for long trips, I get some Benadryl and do my best to zone out with some music and sleep. I do believe that the "Dirty Dancing" soundtrack is one of the 80's greatest gifts to humanity. Mama's birthday happened to land on the day of our return trip, so we designated our zoo expedition as a grand jubilation of my mom! However I am still hoping to extend the hoopla and celebrate with the rest of our family. After all, she's a pretty amazing birthday girl! Alice Eloise has been extra snuggly since my trip to Cincinnati. I like to fancy that she missed me! Although, I am certain that she had a fantastic time playing at Cousin Lulu's house while I was away. I cannot wait until my little service dog can travel with me... One of the only things stopping her is that she hasn't quite figured out how to channel all of that love she feels when she sees people. But I suppose too much love is not a bad problem to have! The night before I moved out of Krista and Tim's house at the completion of our home remodel, I had this strange feeling... An eerily familiar feeling. Ah, and then I remembered, it was the same feeling that I had on the eve of Krista's wedding. I was anticipating that I would soon miss seeing my big sister everyday... However, this week Tim has been out of town for work, so we had the delight of having Krista and Lulu over at our house for a nice long sleepover! Of course I don't like for Tim to have to travel, as I am sure he and Krista miss each other and all that mushy stuff. But I sure loved having my sister here! I like to spoil her when she visits. I made some delicious looking pumpkin pecan sticky buns, and an enormous dish of cottage pie. (Or shepherd's pie, or farmer's delight, or hamburger casserole, or whatever your grade school cafeteria called it. I like the quaintness of the title cottage pie. Because nothing says "quaint" like a giant tank of taters!) This morning my papa and I worked in my "Miracle Garden". If it turns out anything like what I am imagining, it will be just beautiful come Springtime! I do the designing, and Dad does the dirty work. He is the hero of my garden! But it is a bit nippy out there, so now I am cuddled up with my sweet Doodle, watching my favorite Christmas movie, "It's a Wonderful Life". Ah, yes, life is quite wonderful indeed!

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