July 27, 2015
We arrived to the city Saturday. We are having a blast. Eric surprised me with awesome seats at the baseball game where I happily ate about ten cups of Chicago mix popcorn and guess what?! Zero stomach pain, nausea or vomiting! I’m believing more and more that the gastric pacer is working. I'm so excited. My endurance for everyday activities, however, is very low. I went back to the hotel room at 5 and went straight to bed!
I miss Hattie a ton. Eric’s parents graciously agreed to watch her while we're gone. After all they have done for our family I could not believe how quick they were to volunteer to babysit her so that I could come and be evaluated. Eric and I knew their support for us, once we had a child, would be outstanding; but, never could we have imagined the extent to which they would help us with open arms, unconditionally. We love you so much, Hank and Linda. Thank you.
Yesterday Eric and I were given the royal foodie treatment. Our friends John and Amber took us on an exquisite evening of food, drink and amazing hospitality. I am elated to report that I have quite literally not eaten that much food (we grazed and socialized for the better part of 6 hours!!) in about 16 months. All without getting sick.
The restaurant is managed by our friend John and is impeccable. Every dish has its own unique story and is put together with an amount of thoughtfulness and creativity that surpasses anything Eric or I have ever experienced. Every single dish was packed with simple and delicate flavors, oozing passion and dedication from preparation all the way down to presentation. For every bite that I put in my mouth, my stomach wanted one more and my head was screaming, ‘OMG, that is incredible’! Last night was, hands-down, the best thing Eric and I have gotten to do in over a year and we have you two to thank. Thank you, John & Amber, for making our debut back in to civilization an unforgettable one.
This morning was my adult cystic fibrosis (CF) clinic appointment. About four months ago, when I was at my worst,-just after palliative care was called in-Eric was able to get the referral process started. And, thank God, he did. We have been eagerly waiting for this day to come and am happy it is finally here.
Our first impression of the clinic was how happy the staff was. And how organized. Every staff member greeted us with a smile and introduced themselves to us, explaining their specific role and even thanking us for 'driving all this way' to see them. I never needed to gown, glove or mask up over the course of my three-hour long appointment. The staff members did all of that themselves, ensuring adequate infection control. The respiratory therapist (RT) actually brought the breathing test equipment in to my exam room to do all of my pulmonary function testing. The staff was patient and kind with all of our questions. Everything was taken care of during the appointment. Leaving zero loose ends for me to address later, which was a huge relief.
Even though I've already had the gastric pacemaker placed it is still very important for me to get second opinions regarding my CF-related gastrointestinal (GI) issues. For months my family and I have worked tirelessly collecting information, visiting doctors, doing research, getting second, third and fourth opinions, frequenting the ER and managing complicated hospital stays. In the back of my mind, throughout this time, I had anxiously hoped I would hurry up and get approved to be seen at the other CF centers for which I had inquired. Ideally, I wanted to receive CF GI second opinions before making a decision on the gastric pacer; but, as time and circumstance would play out, I was not healthy enough to travel (or do all that this entails) to get those opinions before getting worse. Ultimately, I had to go forward with the pacer placement before getting seen by these centers.
I am happy to report that I am eating several small meals per day and actually enjoying most of them! I have not vomited or had nausea in 10 DAYS!!!!!!!! The pacer appears to be doing its job and that is a great great thing.
My gastric pacemaker follow-up appointment is this Friday. In the meantime I am going to continue to work on gaining strength and endurance; constructing a pulmonary hygiene schedule that works for us; and, most importantly, continuing to spend my days with Hattie and Eric.
Remember to keep checking the Warrior site for blog posts as yesterday was the last day of the YouCaring fundraising campaign. Posting my updates to that site are now expired. YouCaring, you provided a platform for my story to spread and shine. Many many thank-yous.