Saturday, December 26, 2020

My Trip to Mayo: Part 2

Mayo turned out to be just what we needed to settle on a treatment plan for the near-term. The trip was a whirlwind, full of appointments and tests, but also playing in the snow, our first hotel experience with the boys, and making memories. 

In terms of testing, I was very pleased with the thorough approach each set of doctors took to dig deep into the outstanding questions. I'll admit, though - I felt like a rag doll by the end of the trip, having been poked and prodded seemingly 24/7. The turnaround time of results was phenomenal. If I had done even one of these tests through a local doctor, it would have taken days or weeks to find out the results. I would have had to schedule childcare and factor in drive time and wait time. At Mayo, with my parents there take care of the boys, the testing was so much smoother. For the blood tests, I received results in my online portal within 4 hours. The bigger tests took a day or two so the doctors could review and interpret the results. It was amazing! Here are some of the tests they performed:

  • bone density
  • x-rays of spine and hips
  • abdominal ultrasound
  • CT of small bowel
  • MRI of liver
  • 10 vials of blood
  • 48 hours of fasting
  • colonoscopy

Thankfully, we were able to return home after 6 days of testing and take the consultations virtually from the comfort of home. We really hoped we'd be able to leave sooner than expected, and that is just what happened. 

I am SO thankful to my husband, who supports me in every step of this medical journey and took time off from work to be with me at the appointments and be with the boys while I underwent testing. We could not have managed this trip without my parents who made the (LONG) drive to Rochester, MN to help take care of the boys whenever Jacob and I went to appointments. Our time there seemed more like a vacation to the boys than a medical trip. They enjoyed building a snowman, playing with trucks outside at the biggest sandbox I've seen full of communal trucks, exploring a children's museum at the Apache Mall, and running around the Rochester Athletic Center playing miniature golf, air hockey, building towers, jumping on trampolines, and climbing towers. These activities truly made the trip possible with the boys!

The tests were draining, but the appointments were so informative, and the team approach from the doctors was critical to ensuring my treatment plan considers all necessary components. My three main issues are GI distress, high liver numbers, and osteoporosis. By seeing a GI doctor, a hepatologist, and an endocrinologist at Mayo, they coordinated care recommendations. For example, due to my low bone mineral density, I should not take Prednisone (ideally ever, but realistically as short as possible until treatment begins). The hepatologist was able to communicate the considerations for my liver with the GI doctor and made recommendations how we will monitor over the next year. He also advised against some tests GI my doctor here in TX wanted to perform due to their invasive nature and potential side effects. I'm so glad put a pause on treatment until after our trip to Mayo!

The ultimate diagnosis from Mayo is ulcerative pancolitis, which involves inflammation throughout the entire large intestine. There are many components, but that is the gist. It is an autoimmune disease, so any treatment path I take will involve immuno suppressants, which will lower my immunity. It will be very important for me to take care and avoid sickness. While it is scary to think about in the season of COVID, God is not a God of fear, and we will pray for protection.

More to come on this journey, but we appreciate your prayers as we make decisions each step of the way and trust for God to provide wisdom!

Wednesday, December 23, 2020

An Anthem for 2020: O Holy Night

At the end of this year 2020, I imagine there are many things people want to forget.
  • Forget the pain, sickness, death, and hardship a year wrought with trouble brought every single one of us without exception.
  • Forget the anger with which we responded to people who didn't deserve it and weren't the root cause.
  • Forget the sadness we couldn't push away.
  • Forget the fear of each other that oppressed us with a pandemic sweeping across the world. Fear that kept us from gathering together and encouraging one another because what if we infected each other? Fear that was founded, on most occasions, but robbed us of the joy of community that is at the heart of humanity.
  • Forget the isolation of staying in our homes and not knowing when or if things would change.
And yet, as Christmas approaches, the lyrics to one of my favorite carols brings me to tears with their relevance to more than one social event we have faced this year.

"O holy night, the stars are brightly shining,
It is the night of the dear Saviour's birth;
Long lay the world in sin and error pining,
'Till He appeared and the soul felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn;

Fall on your knees, Oh hear the angel voices!
O night divine! O night when Christ was born.
O night, O holy night, O night divine...

He knows our need, To our weakness no stranger!
Behold your King! Before Him lowly bend.
Behold your King! Your King! Before Him lowly bend.

Truly He taught us to love one another;
His law is Love and His gospel is Peace;
Chains shall He break, for the slave is our brother,
And in His name all oppression shall cease.
Sweet hymns of joy in grateful Chorus raise we; 
Let all within us praise His Holy name."

Christ is the Lord, then ever, ever praise we.
His pow'r and glory, evermore proclaim!
His pow'r and glory, evermore proclaim!

A song penned so many years ago yet so applicable to our year 2020. We are a "weary world." We long for a "new and glorious morn." May we "fall on our knees" as we realize our dependence on the God who saves us. He knows our needs, for He is no stranger to our weaknesses since Jesus came to earth and lived life as a man.

"For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. 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 4:15-16).

"But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me" (2 Cor 12:9).

"Likewise the Spirit helps us in our weakness. for we do not know what to pray for as we ought, but the Spirit Himself intercedes for us with groanings too deep for words" (Romans 8:26).

"Surely He has borne our griefs and carried our sorrows; yet we esteemed Him stricken, smitten by God, and afflicted. But He was wounded for our transgressions; He was crushed for our iniquities; upon Him was the chastisement that brought us peace, and with His stripes we are healed" (Isaiah 53:4-5).

May the words of this familiar carol settle more deeply in your soul this Christmas. 
May we encourage each other and love each other in meaningful ways from respectful physical distances that hopefully do not distance our hearts from one another.
May we look to Jesus as our Ultimate Gift - the only One we need to survive all the trials and tribulations of life.



Sunday, December 20, 2020

My Trip to Mayo: 2020

Oftentimes in life, there is not a clear answer, especially when it comes to health. 
We are trained as students in the school systems to come up with the right answer on the other side of the math equation or produce the correct response for the years of the World Wars. We pass or fail the spelling bees and the answer is right or wrong on the SATs.

On the other hand, as we progress into college, if we have the *right* professor, we are taught a very important lesson: We learn the rules and then we learn when it is appropriate to break them. This is a lesson my bassoon professor Will Roberts taught me. I studied bassoon with him and practiced hour after hour to get the fingerings and timing down to produce the perfect solo line...only to then be coached to make it my own - to add my "voice" and my "heart" to the melody. As a rule follower, it was a challenging assignment, but one I am grateful I learned.

In this season of my life, I struggle with when to feel settled with an answer and when to dig deeper. With the health struggles I've faced these past 5 years, I've learned to ask more questions instead of simply accepting a diagnosis. Sometimes, my questions have led to positive strides and more answers, but sometimes they have delayed a course of action that would have helped if I'd accepted the guidance and started sooner. With each situation, it takes thought and research and prayer and community input. 

Most recently, a diagnosis I received did not feel right or complete. The consult with the doctor seemed to miss the mark. Maybe it was due to my lack of knowledge and understanding at the time or maybe it really did stop short of the root cause. Either way, I sought out a second opinion doctor. He agreed with my intuition - there was something deeper. After four months of additional testing, we still did not get to the root, and some additional symptoms progressed to a concerning level. 

After prayer and consultation with my husband and family, we decided to make a trip to the Mayo Clinic in Rochester, MN. At Mayo, I will meet with a number of specialists to look at how my unique set of symptoms (GI, liver, and bone) are all connected (most likely) and how we can determine the right course of treatment. As a mom with two small children, I became overwhelmed with the prospect of trying to find and meet with three (or more) different types of doctors in different practices where we live, each wanting to do labs and procedures and have follow-ups. And how would I get them to "come together" to figure out what is going on? The thought of calling all three offices back and forth to ask questions, get approvals, and coordinate treatment was beyond daunting. It is also very difficult to schedule appointments with little ones and naps and preschool and life. My family is beyond helpful with watching the boys so I can make as many appointments as I can work, but it became just too much.

I completed a health questionnaire online for Mayo, and a doctor reviewed my information to see if I was a viable candidate for the program. Thankfully, I was accepted. We scheduled our visit to start on October 20, 2020. Mayo advises its patients to prepare for a 7-10 business day visit. It sounds long, but when I think about meeting with three or more doctors, having 2 or more days of labwork and imaging, and possibly undergoing a procedure like a colonoscopy while there, I think the time will go fast. 

We decided to take the boys and make it out to be a vacation for them (hey - they're 4 and 1, and this will be their first stay in a hotel room with an indoor pool in the lobby!). My brother-in-law did his residency at Mayo, so my sister-in-law gave us some wonderful ideas of activities to do with the kids. My parents graciously agreed to travel with us for the first half of the trip to be with the boys during my appointments so my husband can be there to support me and hear the guidance first-hand, and his parents plan to travel up for the second half of the trip, if needed. We are so thankful for the generous gift of their time, and our boys will LOVE spending their days with Grams and Pa and Nana and Papa. 

I've got my binder ready to go with all my medical records, and I'm finalizing packing all the food and goods we will need to start our extended stay. Thankfully our hotel room is an extended stay suite with a little kitchen, so I will be able to cook for us and my food sensitivities. There is much to think about, but the Lord is guiding each step.

My prayer for this trip is for the doctors to take in all the information, see what they need to see in labwork and images, and come together to determine the best path forward. I want to be strong and healthy to enjoy life with my dear family. I pray this trip will result in some answers to questions that have left me sleepless at night and in discomfort and pain during the day. I pray for more clarity and fewer unanswered questions. I am thankful for this opportunity.