Thursday, December 9, 2010

The Pit Stop

To complete the Amazing Race analogy, we have reached the pit stop for this leg of the race . . . and we weren't eliminated. I woke up this morning excited to be on this side of the trip . . . the finish line . . . instead of the beginning . . . it's been a long journey . . . and we made it!!

It was the final day of Hanukkah and the final day at National Jewish . . .

At 2pm I had a final spirometry test then met with Dr. Gogate for an hour. She shared all the results of the tests (there are still some that will take weeks to come in) and went through her assessment and plan for the future. I wish I had a big ta-da . . . my steering and life group ladies know I'm always searching for this . . . not yet ladies, not yet . . . but she did have lots of insight. Like we've been learning over the last few years, I have a very complex case . . . there is not one blaring cause that we can fix and cure my asthma . . . she was a bit frustrated herself that she couldn't offer a final solution but she did have a lot to offer as far as the direction I should go when I return home.

She tweaked some of my medications . . . subtracting some . . . adding others . . . and her biggest goal for me is to fully taper off prednisone . . . and stay off. She said it takes at least 6 months for your body to fully eliminate the steroids - and damage has already been done. She said I need to follow up with an endocrinologist asap when I return to check on  my adrenal function as long term steroid use does bad things . . . it tells your body it can stop producing cortisol. I need to see if my body has entered this zone (and if it has, I may have to stay on a small dose of prednisone to maintain a healthy level). I also need to follow up with a cardiologist . . . there wasn't anything wrong with the heart itself - it's just important that I make sure I'm getting an accurate amount of oxygen to my heart . . . she recommended a stress test to check it's function. Also, she recommended a sleep study . . . both my sinus and chest CT's showed possible indicators for sleep apnea - some swelling of the pulmonary artery . . . and if it's not apnea, find out what that swelling means. The bone density test showed bone deterioration due to long term steroid use . . . I don't have osteoporosis yet but something called osteopenia - the step before . . . not easy news to take as a 30 year old . . . I need to add calcium supplements and work on building my muscles mass back up as much as possible to stop the deterioration. Both of the barium studies showed that the Nissen surgery I had in 2009 held but the PH probe study (that terrible thing in my nose/throat) showed that I'm still having reflux . . . acid and lungs . . .not a good mix. She hooked me up with a new device called a Piko that is basically a spirometry test I can do at home all through the day as I have symptoms, take medicines and track my illness . . . the information gained from this test over the span of weeks and months will be valuable for my doctors at home as to how my lungs are functioning and what we need to do next.

To put all that info together . . . my respitory disease is multi-faceted . . . part reflux, part allergy, part vocal cord disfunction, possible part sleep apena, possible part heart . . . steroids are doing and have done terrible things to my body - more side effects than we even knew existed . . . this journey is not even close to being over . . . and it's not going to be easy . . . but I can hit the ground running when I get home knowing which direction to head in and what to do next . . . and as I tell the girls when they get frustrated . . . "Marsh girls don't quit!!"

I can't begin to describe what I felt waiting for the last shuttle ride leaving the hospital today . . .I am tired . . . exhausted . . . I am thankful . . . I am overloaded with information . . . I am hopeful . . . I am not looking forward to more testing to come but happy to have a new direction to explore . . . I am giddy to get home . . and I will never ever forget this experience.

As far as follow-up goes and possible future return to National Jewish, Dr. Gogate said it's all up to us . . . she said if we go through these tests, try these new medications and still get no-where, maybe a trip back would be helpful. If on the other hand, the new ideas work and a new test or two shows another piece to the puzzle, my wonderful and capable team of doctors in Washington can continue my care . . . only time will tell . . . in the  meantime, I can't wait to board the plane tomorrow . . . only 19 hours until I get to kiss my babies . . . but who's counting . . .

On our way home today, we caught a few pictures of Denver and the beautiful gold topped building is the capital . . .

 I wish I could describe Denver is a few eloquent words but it's unlike any other place I've ever been - architecturally it's a mix of old and new. There are lots of brick buildings . . . some skyscrapers but not as tall as Seattle . . . some incredible old beautiful buildings especially churches that reminded me so much of Europe . . . some neat sidewalk bridges connecting buildings . . . lots of corporate . . . lots of hustle bustle . . . lots of friendly people . . . quite a few hospitals in a relatively small area . . . four different network news buildings . . . and the number one respiratory hospital in the country . . . thank you Denver for opening your arms to us . . . peace out . . .

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