For those of you who are following my time here at Cleveland Clinic, I thought I would post daily updates here, as Im having trouble keeping up with all of the texts and messages. By the way, THANK YOU for all of those texts and messages. I can feel your love and prayers and I am so, so humbled that so many are praying and thinking of me. What a blessing!
Darren and Lukas and I left Benson at 11am yesterday. We traveled to Darren’s brother Travis’ house in Freemont, IN and stopped for dinner and to let Lukas stretch out for a bit. Around 8, when he was getting tired, we loaded back up to finish the trip. We got to our hotel around midnight last night. By that time, Lukas was 100% ready for action. I cant complain, he handled the car so well. Thankfully, we had a king sized bed, so he played happily in between Darren and I while we dozed. I think he finally decided to sleep around 3am. Our day today started at 6am, so it was a very short night! Thankfully, today was only one appointment, so we had all afternoon to laze around the hotel. We have taken naps, and swam and watched a lot of TV. Its actually been really nice to just relax and not need to be anywhere.
The appointment today was Internal Medicine. This doctor will function as my point man for my time here and for any continued care I need through the clinic. I have never been so pleased with a medical encounter. This place runs like a well oiled machine. Appointments are prompt. Expectations are well communicated and clear. Dr Feyda, started his visit this morning by telling me that he wanted to get a clear picture of my situation and that would require him to do a lot of documenting on the computer, but if at any time, I needed him to offer more eye contact, he would strive to do that. WHAT?! How amazing! He also asked many times if he had covered all of my concerns and advised me to take my time because”he had plenty of time for me”. WHAT?! What a breath of fresh air. You never hear things like that from doctors. He spent over an hour with us taking a very detailed health history, documenting all of my concerns and doing an exam. Then, we sat together and discussed what tests were needed. 16 vials of blood later, all the preliminary lab tests were done. I already have results of most of these in my online chart. Just waiting on the ones that were send out labs.
Surprisingly, many of my labs had greatly improved in the last month. My iron check last month was showing rapidly dropping levels. I was scheduled for an infusion when I got home. My values today are actually on the high end! Several other values that had been low are now in normal range. The only changes I have made in the past two months, are remaining gluten free and starting a strong probiotic. I have had malabsorption issues for years, so I will be very interested to discuss this improvement with GI tomorrow. Im very pleased to see improvement, but would love to know what and why things have improved, so I can keep levels high!
Tomorrow, I see neurology. They will be handling the POTS and ordering appropriate tests, like a tilt table test. After that is GI, to discuss the malabsorption issues. Lastly, genetics to confirm the Ehlers Danlos diagnosis. Tomorrow is the real meat of why we came here. I can only hope it goes as well as today!