Results from Second Wave of Appointments

A lot transpired Monday and yesterday (Tuesday) for our "second wave" of appointments and I wanted to bring you the latest news. My labs on Monday were uneventful and so far here at Mayo, they have tapped into a vein with good blood return every time. (unlike my recent experiences at home) They take their time, warm my arms, and patiently wait for a vein to "appear". We had an excellent appointment with the Integrative Medicine Specialist and spent a few hours with him covering many aspects of "whole body health." We left with an arsenal of information and strategies to employ from the various disciplines of eastern medicine, functional medicine, nutrition to address inflammation, and some other resources in general to help with the effects caused by my EDS. Monday afternoon was spent getting joint x-rays and meeting with an exceptional Orthopedic Surgeon. While obviously many of my joints are suffering from laxity and arthritic-type pain due to the numerous dislocations, he focused on my right shoulder. It has been causing me quite a bit of pain since having to bear the burden of overuse as I healed from my two left shoulder surgeries and the reduced use of my left arm and shoulder. He has treated many Ehlers-Danlos patients and athletes and we made an immediate connection. I will have an MRI of my right shoulder tomorrow afternoon and then a follow-up appointment with him after the MRI.

We started our day Tuesday with the pharmocogenetics Pharmacist. She spent over an hour with us as we discussed the results of my genetic testing. It was very informative and we now have documents that list several hundred of the more common medications that are prescribed and which of those I should metabolize okay and which ones will present problems such as being rapidly metabolized causing the medication to essentially not "work" for me or ones that will be needed in "ultra-high" dosages to achieve their needed effects. I have one pathway that is very slow and those medications will need to be prescribed in a much lower dosage. I was also tested on several pathways that were drug specific and that will be helpful information should I need those specific drugs in the future due to cancer, heart issues, or a stroke for example. She is also working up a document that will include explanations and examples to serve as a guide for my physicians when medications need to be prescribed, as well as offering to be available for phone consultations as needed.

Our BIG appointment for the day was with the Gastrointestinal Specialist. Those who have been following CarePages and now PostHope, know that the lack of motility of my GI tract and my severely distended abdomen have been major issues for me for over a year. Specialists in Seattle had recommended surgery but were not comfortable doing it due to the poor wound healing and tissue fragility that come along with EDS. We had exhausted all leads, medicines, and non-medicine approaches. The desire to be at a research hospital where doctors are educated and have experience with EDS was the deciding factor for us to try to get into Mayo's Connective Tissue Disorder Clinic. I think we can all agree that this has been a phenomenal and productive trip already and now the time finally came to address one of my biggest problems - my GI system. Thank you for your specific prayers for this appointment. The doctor was knowledgeable and very thorough. Combining my medical history and the physical exam, he proposed a set of thorough tests and an appointment with a Gastrointestinal/Colorectal Surgeon. He put in "orders" for six tests and a surgical consult. At Mayo,

"orders" go to a centralized scheduling center where they can see all of your current appointments on your patient "itinerary" and then work around those to schedule new appointments. When we got to scheduling, the kind lady looked at the long list and we noticed her frown. She said several of the needed appointments were booked into late June/early July. She saw our faces and asked if we were from out of town. She said she could put in a "special request" that would need a few signatures and then handed us a pager and said when everything was scheduled, the pager would let us know and we could proceed back to the scheduling center. One of the major tests needed is only done on Wednesdays and she said today was already full. We knew the surgeon would need most of the tests done before he would meet with us. We walked away with our pager feeling a heaviness associated with that little plastic device that was going to let us know if it was going to be possible to address my disabling GI issues in a timely manner. We found a quiet place to sit, pray, and wait. Here is the verse that came to mind, "Now to Him who is able to do above and beyond all that we ask or think according to the power that works in us - to Him be glory ... forever

and ever. Amen." (Ephesians 3:20-21) And then that little pager lit up, I felt butterflies in my stomach, and Steve and I grasped hands as we made our way to the scheduling center.

We approached the lady in the open cubicle, made small talk while she pulled up my patient data, she asked where we had traveled from and turns out she used to be a soldier at Joint Base Lewis McChord! (The Army- Air Force Base adjacent to Lacey) She printed and stapled my new 19 page itinerary. We thanked her, walked to a nearby sitting area, took a deep breath,

and began reading the appointment schedule. The scheduling center was able to get everything ordered in the next 8 days! They made room for me on today's schedule for the "big" test. We started our day here at 6am. I swallowed a capsule containing a mini-camera and ate a radioactive breakfast. Both of these procedures will yield valuable information for the surgical consult which is on Friday afternoon. I get scanned every 2 hours today until late afternoon and then return in the morning for a scan at the 24 hour mark. Since there are no breaks in the schedule through next Thursday, I guess we are no longer in "waves" of appointments but rather a bit of a tsunami! Scattered among all of the GI appointments, we still have orthopedic MRI and follow-up, urology/nephrology follow-up and related labs, the autonomic testing clinic, initial cardiology appointment to evaluate my aortic aneurysm, and follow-up with the team lead in the clinical genomics department.

Although it is a full schedule, we are grateful to be able to accomplish so much in such a short time frame. Thank you for your continued prayers for us and praises to our great and mighty God who has blessed us beyond measure. We would ask your prayers for continued strength and stamina to get through this intense schedule. Also pray for clarity of tests and procedures and that the doctors will have clarity and wisdom in knowing how to best treat my EDS and health issues being caused by it. As always, thank you for taking the time to check in on us! Thank you for your words of encouragement.

We will post again when we know more news!

Love,

Lee and Steve

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Comments

Tom and Linda Hamilton:

Praying for you both, and for this season of life, is indeed an honor. Thanks so much for the update!

James Broman:

Thank you for the informative - and a bit intimidating - update. Prayers for peace, endurance, patience and medical insights are on the way.

Ellen Bunch :

Love you Lee Bob and Steve. Praying all goes well

Steve Braden:

Thanks for the update. We are continuing to pray all goes well. Sending our love

Lisa Currall:

Praise God!

Joan Bouck:

Lee, It sounds like you are in good hands. The doctors, your husbands, and the ones you can't see but that you know are always with you giving you the support and love and courage you need to help you with what you are doing. You are in my thoughts and prayers for good knowledge and good test results that will help make your lives better. Thank you for sharing your journey with us. Joan FD3

Teresa J Brooks:

Dear Lee: Thanks so much for this update and the previous message you sent. It is awesome how thorough the doctors are being in addressing all of your health problems, and the scheduling is surely a miracle. I will continue to hold you and Steve up in prayer for clarity and also medications, treatments or surgery that will help resolve some of these issues. Also praying for strength to get you through this tough schedule of tests. I always look forward to your updates. Love, Teresa

Jill Shelton:

Love you guys and praying for you. Thankful you have found a place with a lot of helpful knowledge and information and the willingness to work with you in a timely manner. Thanks for the updates.

Michele Staley :

Hello Lee, Thank you for giving me your info to Marie so I can contact you. As you know I too have EDS as well as my oldest daughter. I would love to talk to you on the phone about the Mayo Clinic and see if it's a good option for me. Pleae give me your number or tech out to me. 2537324517 I would really appreciate all of your advice and love to talk to someone else with this disease. Michele Staley