Beginning the Second Wave

Hello from the Eagle View RV Resort in Phoenix,

This post will be a little bit long. Ha! I know you are dismayed!! So, here's the structure so you can't blame me for taking up too much of your time: I'll cover the nuts and bolts of where we are in the medical journey here at Mayo, next I will talk some about my free time and escapades here in Phoenix and finally, I will do my best to let you know how my heart and soul are faring so far in this journey (since many of you have asked). So, now you know the outline so it's not my fault if you are late to bed or late to work!!

In the last two weeks, I have had pharmocogenetic DNA testing to evaluate drug metabolism pathways, CT scan of my abdomen and pelvis to evaluate my kidneys, and an Angio CT scan of my heart and lungs to get precise measurements of my aortic aneurysm. There has also been the addition of a new team member - a doctor in clinical immunology. I'll share details of the reasons for that addition in a future post but for now, the doctors suspect I am also suffering from Mast Cell Activation Disease (MCAD). It is treatable once we determine the specific type and it is found in a small percentage of people with Ehlers -Danlos Syndrome

(EDS). The results of the drug metabolism pathways have posted on my patient portal and we were encouraged to see that 47 pathways were tested. We meet with the pharmocogenetic doctor on Tuesday (the 15th) to discuss the results. The CT to evaluate my kidneys revealed that my left kidney has 5 kidney stones and my right kidney has 1 kidney stone. The scan also confirmed the presence of an extra vein that has grown from my left kidney and has attached to a major vessel supplying the heart. I have also done a 48 hour urine collection and that will be analyzed with hopes of finding a metabolic cause of my recurring kidney stones. On Monday (tomorrow the 14th) I have more labs to do related to kidney function. We will meet with the urologist/nephrologist on Monday, May 21st to go over results and next steps. The scan of my heart confirmed the dimensions of my aortic aneurysm and we will learn more about moving forward with this issue when we meet with the cardiologist on Monday, May 21st. We ask your prayers for tomorrow and Tuesday as the "second wave" of appointments commence. Tomorrow we have 2 lab appointments, an appointment with an Integrative Medicine Doctor to look at treating this disease with the "whole body" in mind. I also have another kidney test, and we close out the day with seeing an Orthopedic doctor familiar with EDS to address the progressive damage to my joints. Tuesday, as I mentioned, we will meet with the Genetic Pharmacist, and the afternoon will be the much anticipated appointment with the Gastrointestinal Specialist. As most of you know, the lack of function of my GI tract has become a life altering issue so we are eager and hope for a very productive appointment. These appointments on Monday and Tuesday are currently all the appointments for the week. The remaining time of the week allows for results to gather and leave space in the week should other appointments need to be scheduled. Our "third wave" of appointments are as I mentioned on next Monday, May 21st. Thank you so much for remembering us in your prayers. So... that's the nuts and bolts of the medical journey so far.

As you can see from the pictures and the salutation, we are staying in our new RV for this trip and we have been blessed with an amazing RV resort that has many amenities; including daily doughnuts and coffee! Ugh. I walk in the mornings and then go to the workout facility which just happens to be right next door to the building with the doughnuts ... I go to the window and stare at the doughnuts each day. So thankful you can't get calories from staring! However, Steve and I decided after exercising, today was the day to have a doughnut! If you followed us on CarePages then you know my favorite doughnut is a Bavarian cream doughnut topped with chocolate icing. There were exactly 2 left - one for each of us! Yay! What a great morning! When not at Mayo, I have enjoyed time to read, work on some projects, read parts of the instruction manual for the RV (yes, I am that girl), work through some classes for my Biblical Counseling certification, and just spend time watching sunrises and sunsets. We have also been blessed by the company of our good friends, Kimball and Elizabeth, who live here. They have been beyond gracious in loaning us a car during our stay, making sure we find the many eclectic places to eat, providing us with great fellowship, and checking in on me daily while Steve returned to WA to work for a few days during this last down time in between appointments. Before Steve returned, Elizabeth planned a complete spa day for us girls and it was absolutely fabulous to forget about "all things medical" for a day! So that's a little about my down time. I have been thankful for the time; otherwise, I fear all of this medical

information could become overwhelming and exhausting. The time in between "waves" of appointments has been a true blessing!

How are my heart and soul faring? It is with extreme gratefulness that I can say that God's grace finds me daily. I realize each morning I can choose to trust in God's perfect plan for me or I can choose to let anxiety and fear rule my heart. Some days that choosing is harder than others, but I have found God to be faithful to meet me in my joys and in my tears. "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you." (1 Peter 5:6-7) "Why are you downcast, O my soul, and why are you in turmoil within me? Hope in God, for I shall again praise Him, my salvation and my God." (Psalm 42:5) "Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." (Hebrews 4:16)

God has been preparing me for this part of my journey. We say "God is good" when the test is benign, when the surgery is a success, when we find a medicine that works. The truth is that "God is Good" even when we cannot see it. There is always a bigger story and a bigger plan for our lives; especially in the difficult parts of this journey of life. God uses suffering in our lives in many, many countless ways. These past few weeks God has used suffering in some specific ways in my life. He has used this time to strengthen my commitment to Him, to stretch and grow my hope, to teach me to give thanks in times of hearing hard news, to increase my faith, and to strengthen my character. "...and we rejoice in the hope of the glory of God. And not only that, but we also rejoice in our afflictions, because we know that affliction produces endurance, endurance produces proven character, and proven character produces hope." (Romans 5:3-4)

Dear God, thank you for having the wisdom to choose for me what I would never have chosen for myself. "I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds." (Psalm 9:1) As always, thank you for taking the time to check in on us and sending encouraging words!

Grace and Peace,

Lee

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Comments

Eunice Goodwin:

It's hard to know what encouraging words to send to someone who encourages us with the kind of faith you have! Continued prayers for you both!

Mark Colavecchio:

Thank you for taking the time and energy to help keep us connected. It also helps me to pray in greater alignment with you. I'm so glad you are doing this now. Les and I are grateful for your perspective and the way you are navigating this storm. Can't wait to get you back. You are missed!

Sandy Temple:

You continue to inspire and amaze me. Yes, God is good, even when we don't get the answers we had hoped and prayed for. You, my sweet friend, have been through so much, but you allow God to use you to witness and minister to so many through it all....Your faith is encouraging and inspires us to hope in the Lord in all things. I am keeping you in my prayers. Much love!❤

Steve Braden:

I love reading your updates. Not only does it let us know each "wave" you are going through but it is inspiring. Uncle Steve and I continue to pray for you and Steve on this journey. Sending our love

Jill Shelton:

Dear Lee & Steve, thank you, thank you, thank you for the updates. It is nice to know your getting further care and have met some great friends. I am glad you've found someone to spoil you and have some girl time when Steve is away. God is good when placing those needed friends in our lives. I am thankful you have found a group of doctors that are working so diligently to help you get the care you need. Prayers on your continued journey and faithfulness to God. I know no road is ever easy, but your road has definitely been a challenge. I know I certainly do not know or cannot fathom the pain and suffering you've been through, but you always continue to be strong and grow stronger in the Lord. Both of you have always been great examples of that. Prayers on your continued journey and as Steve tries to squeeze in work in between appointments.

Frank Kirkbride:

Lee, you are an amazing person to present such a positive image during these difficult times. Wishing you, and Steve, the best of all worlds for a very successful journey through life and all of it's challenges.

Cindy Hambly

:** Please know you both are in my thoughts daily, I do appreciate the updates . My prayers are for healing and positive medical test results. With much love.

James Broman:

Words fail me... Only prayer matters. Prayers always.

sandra henry:

Lee, thank you for the not-too-long update. 😉 So thankful for the care you're getting at Mayo, your new RV, friends in town, and the spa day! What a treat! Praying for good test results and answers so you can start treatment and get on the road to healing. Love to you and Steve.

Judy Wilson:

Dear Lee, Thank you for taking the time to share your experiences. You should earn a medical degree at the end of these appointments. You certainly have a great grasp of the "lingo". The reading at Mass this morning was about the Apostles and Disciples being sent out to teach the word of God and heal those who believe. Clearly you are one who should be healed. I pray for that miracle. Your faith in the face of this disease is inspiring. You teach all those who read your posts about faith. I pray all those smart folks you are meeting will have answers and solutions to make your life more comfortable.

Joan Bouck:

My goodness, your life is full. Wonderful things, difficult things, ups and downs, truths and discovery. And when we are open to what is present we grow and find understanding, acceptance, hope, faith and love. Despite all of your challenges, it is a true blessing that you allow the wonder of life to help you keep your balance, courage and positive feelings. And it's our blessing that you continue to share them so we know how you're doing. As always, you're in our thoughts, our hearts and our prayers for continued courage and good results. So proud of you Lee! And your new RV looks Amazing! :) Joan FD3

Amy Moore:

Love you dear friend!! You teach me humility & faith each time I hear from you.

Staci Singleton:

Hi Lee, thank you for your post and for keeping everyone updated! Praying for you daily!! Love you and so beyond thankful for your wonderful example of faithfulness and trust through the days of me being in your CG and now being able to follow online. You are an encouragement and your words are a blessing!