What Happened at Mayo...

The Lord will keep you from all harm— He will watch over your life; the Lord will watch over your coming and going both now and forevermore. - Psalm 121:7-8

This was my experience over the four weeks I spent in Scottsdale, Arizona, May 11 through June 9th. I expected to stay for a week or two at most, but it turned into almost a month, as I watched God make provision after provision for me to stay longer and complete various tests.

 

What did I do there?

I spent most of my days at the Mayo Clinic seeing specialists, having tests done, and then having more tests done. Everyone was very friendly and kind, and the volunteers at Mayo were wonderful, along with all the doctors and nurses. I saw a GI motility specialist, a neurologist, an infectious disease specialist, a psychologist who taught me biofeedback breathing techniques to cope with pain, a dietician, a complementary medicine doctor, and an allergist/immunologist. I had at least 10 or more tests done in addition to labwork. There were so many mornings and moments when I couldn't imagine how I was going to make it through the next ten minutes, let alone a day full of tests and appointments, but every time, God was so faithful to pull me through to the next step. Each night, I'd find myself at the end of the day once again, amazed at His unfailing faithfulness once again.

What did they find?

 

Well, there were several things that came to light but nothing too surprising. One of the most significant discoveries is that my small intestine has a significant motility issue and is quite slow (not a surprise to me but now it's actually documented). The emptying study that revealed this was also supposed to give information on the colon, but since the capsule of the radioactive material that was supposed to coat the GI tract never left my stomach, they were unable to collect data on that portion of the test.

My autonomic nervous system has some neuropathy but that's to be expected with whatever is causing my underlying condition.

I am allergic to cats, grasses, ragweed, dust mites, and mold and have asthma symptoms so they'd like me to start using a daily inhaler. This may be part of the reason for my shortness of breath.

I was told I was anemic, had Chronic Fatigue Syndrome, and Fibromyalgia, but none of this was new for me. I had two iron infusions during my time there and am scheduled to potentially have two more at home. I continued to stay on TPN for my nutrition for 12 hours each night (intravenous feeding), but they replaced my g-button to my stomach with a longer g-tube for the purpose of venting (releasing air/pressure from the stomach).

Thankfully, other things were ruled out through the tests such as a more serious muscle disease, immune dysfunction, etc., but they were unable to determine the underlying cause for these conditions.

Where do I go from here? 

I was encouraged to take every step possible towards better health, including using a recumbent exercise bike for a few minutes a day, doing breathing exercises, taking a drug that may help with motility, getting better sleep, and trying to see what my tolerance is for sipping liquids (an ounce per hour) and building up from there. These are all great things which will definitely help me if I am faithful to implement them, but I believe there are other things I need to add to this list as well.

Although I have been ruled out for some of the most common mitochondrial diseases, the neurologist recommended I seriously consider having a muscle biopsy to test for other mitochondrial diseases or have one of my siblings do the biopsy. This is something we could consider down the road.

I had a follow-up appointment with Dr. Mozayeni here in Maryland this past week, and he believes he can help me move towards health with some very specific treatments. The first thing he'd like me to do is to have Hyperbaric Oxygen Treatments (HBOT) three times a week for several weeks to a month. The hope is that the extra oxygen that is made available to my cells while I spend time in the pressurized chamber will bring healing to organs, cells, decrease inflammation, and possibly increase my GI motility. He believes I have some type of protozoans in my system which most likely came with my original Lyme disease and babesia infection and are continuing to make me sick. There was evidence of this on a blood test I recently had done. I also may have a fungal infection. With either one, I would need to be treated with strong drugs, and my system is not strong enough yet to handle these. In the meantime, he wants to do all he can to build me up by doing the HBOT, improving my sleep, regulating my thyroid, and getting more protein into me.

I am also praying for clarity and faith to step out in a specific path when it comes to trying to get my body to accept food/drink and determine what diet could be the most successful/healing. I am still leaning towards the GAPS diet, but diets high in fat are very difficult for people with motility disorders. I have been trying some baby food squash and other non-dairy and low fiber foods and am so grateful that I've been able to swallow these things, but it has been very difficult for my system to take them. I've gained a good ten pounds or more lately, and haven't been at this weight since prior to 2008. Now I need to get physical therapy going and get some muscle back.

I could keep going, but I think this post is already getting quite lengthy. There is simply no way I could begin to thank you all for the countless prayers that you have lifted up on my behalf. I hope you know that they truly sustained me and were heard and answered!

It has been hard to consider the path ahead as I realize just how long it could be, but every time I begin to crumple and despair, I hear Him reminding me that I only need look at this present moment. There will be strength for the next one when it arrives. The quote below has been a great source of hope for me lately. I pray it encourages you as well.
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It doesn’t matter how complicated, how desperate, perhaps even hopeless your life has become. No matter how overwhelmed you may feel by your problems, if your trust is in Jesus Christ, you can be sure that he is praying for you now and through that prayer he will provide for you the resources to bring you relief or enable you to carry on.

The most important thing that you and I need to learn about prayer is this: first of all and ultimately, prayer is not something we do but what Jesus does for us.

— Richard B. Gaffin
"Christ, Our High Priest in Heaven"

*I'll try to write a separate post on some of my non-medical highlights from the trip. :)

Home Again

Dear friends,
I am looking forward to sharing with you all the things I experienced and learned over the past four weeks in Arizona. Thank you for your patience with me. Understandably, everyone wants to know what the doctors at Mayo had to say and if they found anything new. Your care and support over this long journey mean more than words can say.

There is much to pray over as I seek to find the way forward. In all honesty, I have not yet been able to go over all my doctors reports or share details with my family. I need some time to process things and determine where to go from here. So, if you see me and want to know all the details I may not be quite up to sharing it all just yet, but please know how grateful I am. Your prayers have helped carry me through this past month.

If you want a brief summary then here it is: Mayo was not able to find anything dramatically new or necessarily "breakthrough material," but I didn't necessarily expect that to happen either. They found some neuropathy in my autonomic nervous system, allergies, and most significantly, a severe dysmotility of the small intestine. I will try to put together a more detailed update as soon as I can.

In the meantime, your prayers for endurance, wisdom, grace for transitioning, and more would be much appreciated. The same God Who provided for my time in Arizona is the same God Who will provide for every step to come. Thank you for helping me press on.

It is better to take refuge in the Lord
than to trust in humans.
I will not die but live,
and will proclaim what the Lord has done. - Psalm 118:8, 17

Facebook Updates from the Past Week

Sorry, I haven't been able to write lately. Here are my Facebook updates from the past week:

June 8, 2013
Packing...has it really almost been a month? Going to miss so many dear faces here and grateful for the ones waiting back home.

June 7, 2013
Hi friends, back at Mayo for my second iron infusion. Larger dose this time over the next two hours. Didn't feel well with it last time but God always gets me through. I get weak, dizzy, short of breath, queasy, etc. but grateful I'm not having an allergic reaction. Going to track down records after this and then I'll be finished for now. Hope to fill you all in more in the days ahead.

June 6, 2013
Sorry for not updating yet but back at Mayo now for an appointment and then two back-to-back pulmonary tests. Feeling pretty horrible and need His strength to communicate and go through the tests. He always gives just what is needed! Love you all.

June 5, 2013
On the way to Mayo for two more tests that they were able to squeeze in today. Answered prayer! Struggling with pain from Monday's procedure but God is sustaining me.

June 4, 2013
"With Christ in the vessel, I smile at the storm." -Streams in the Desert

Christ said, "Let us go to the other side" -- not to the middle of the lake to be drowned. -Dan Crawford

Thank you all for praying. I felt like the waters were going over my head this morning, but once AGAIN, God was faithful and brought me to "the other side." Am sore and worn out from the procedure and still facing all my symptoms, but now I have a new tube in for better or worse. Not sure what I am going to do from here but just taking it one moment at a time. Can't fly out tomorrow but sometime soon. So grateful for each of you and amazed at His mercies today in the midst of it all.

June 3, 2013
Hi friends, had an unexpected issue with my g tube this morning and am headed to the hospital for a procedure to have it replaced. So grateful for prayers as this is all quite unexpected and difficult to press through. Thank you!

More Tests Tomorrow

Hi everyone, today was scheduled full, but I was just too worn out to make it so I had to cancel my appointments. Some of these things can just be done back home. Tomorrow, I have a 10am follow-up with my neurologist, followed by another GI procedure from 12:30-2:30. Can't wait to be done.

Yesterday I had my first iron infusion, and the side effects have been difficult. I will have 3-4 more of these over the next several weeks even once I'm home again. It may take a while before I feel the benefits but they will eventually come.

So grateful for each prayer. My picc line is no longer clogged. Thank God for answering that prayer.

Needing endurance for these final days. Geri flew home this morning, and another wonderful friend has taken over assisting me. God never stops providing. He is an unfailing Anchor in the stormiest of seas.

Still in Arizona

(Update copied from Facebook-sorry it's so brief and there are gaps.)

Hi friends, I cannot thank you enough for your prayers. God has answered more of them! A friend in the area who happens to be a nurse has some time off work beginning Thursday, so she has offered to come stay with me after Geri leaves this coming Thursday morning. I had an appointment with nutrition today and just received a phone call about a potential cancellation opening for tomorrow with allergy/immunology (the first available had been June 5th). Friday I have another unpleasant GI procedure/test, and I am still awaiting results from blood cultures. It's looking like I will stay through the weekend, but I have not yet booked my flight home.

Every day there are new mercies for the things I think "impossible," and God's faithfulness is amazing to watch. I also would not be honest if I failed to acknowledge how incredibly difficult it is to fight onward each day. Today was especially hard but His grace truly IS sufficient - again and again and again. It never runs out. Soooo grateful for each of you and your prayers. There are no conclusive new findings yet but God knows what He's doing. I sure don't. :) So glad He's in control!

Many Helping Hands

I just have to take a moment to list some of the ways I have experienced God’s mercy and provision through the care of others over the past few days.

• Geri’s husband, Mike, drove us to the airport after just finishing a two-day drive a few days before to bring his daughter home from college.
•  Hannah, Geri’s daughter and my friend, coming along for the ride to the airport and helping us with all the luggage.
• Mom packing until after 2am yesterday morning and then getting up early to do more.
•  Mom training Geri how to do my TPN.
• Geri investing all the time to learn. 
• My friend, Sarah, taking the time to help me go through clothes, taking me to CVS to get a new cane when mine started causing a blister, and then coming by before I left to fix my crutch with a new tip and grip support for the handle.
• Geri altering clothes so I’d have some things to wear in AZ.
• My sister, Tiffany, coming by last night to help me with my hair and say goodbye.
• My dad driving around to find me a new phone when my old one hit the wall yesterday.
• My friend, Rhoda, creating a prayer sign-up for me. My brother, Michael, helping me up and down the stairs.
•  My friend, Kathy, stopping by to say goodbye even though she has her own health struggles.

And at the airport yesterday...

• Geri was struggling with pushing our carry-on’s and handling my crutch and pillow while also supporting me.  After realizing that it probably would have been better to keep a luggage cart we suddenly came upon one that someone had left behind. God is so kind.
• When pre-boarding, one of the pilots offered to help us by taking all the carry-on’s we were struggling with himself so Geri could focus on just supporting me.
• Though the flight was supposed to be completely full, God gave us an open center seat so I could shift positions more easily.
• God gave me a VERY kind flight attendant.  Once she heard that I have trouble breathing while sitting and would need to stand as much as possible, she said that if the air pressure made me too uncomfortable, just to let her know and she would ask the captain if he could fly at a lower altitude. J  I never knew that was something they would consider doing. She also allowed me to keep my crutch for support right up until take-off. Then she stored it for me and offered to get it down whenever I needed it.
• The flight was long but uneventful, and God truly gave me grace to get through. When we landed, several of the flight crew told me they would be praying for me, and a kind member of the airport staff wheeled me to the baggage claim and then helped us get the luggage into the car.
• And the list goes on.... :) Thank you for praying! These are a direct result of your prayers.

Heading to Scottsdale

As I write these words, I am presently flying somewhere over the Midwest on my way to Scottsdale, Arizona. I did not anticipate this trip to the Mayo Clinic, but God surely did. And He has gone before me and ordered each step. For years, my grandfather has encouraged me to go to Mayo in Rochester, Minnesota, but I just didn’t feel it was the right time to travel somewhere else while I continued working with Hopkins. It has been almost two years since I had to move to feeding tubes and TPN and almost 12 years since my health struggles first began. A few months ago, I began considering whether it was time for me to look for additional medical help at Mayo or elsewhere and thought the Jacksonville, Florida Mayo Clinic might be the easiest of the three, but I wasn’t sure if it was the best medical fit for my situation or not. And now, through an amazing chain of events, I find myself headed to Scottsdale.

How did this happen? A doctor friend spoke very highly of the GI motility doctors at Mayo in Scottsdale and kindly talked with them about my condition. This past March I was able to get appointments with these doctors for this very week in May (it usually takes longer!). A kind friend from church offered to pay for my flight. Another friend began contacting friends in Arizona regarding help with housing and transportation. I was offered a place to stay with a wonderful family only ten minutes from the clinic! (They actually were active members of my church for over 20 years and had moved from Maryland to Arizona about six years ago, but I hadn’t kept in touch with them.) When I connected with them, I heard that they had recently been considering asking me if I wanted to come out to Mayo and stay with them but had thought to wait, knowing how many suggestions come my way. Then they heard I was actually looking to come! So God had already been making a way for me before I even knew it.

The final big piece was who could travel with me, prepare my TPN each night, and help me with daily needs. My parents both wanted to go, but the multiple needs at home between my handicapped brother, their own health, and more were just so great that it wasn’t going to work. We knew that if God wanted me to go, He was going to provide someone. A few days after it was determined my mom couldn’t go with me, another mom, Geri Carroll, offered to be my traveling companion. I was amazed once again at God’s specific care and provision for my needs. And it didn’t stop there! My church covered the cost of her flight, the Nam family offered us rides and the use of a car, and my dad helped me pull together all the medical records I needed to take.

I don’t know what God has in store for this week, and I wouldn’t be honest if I didn’t acknowledge that I’m afraid at times. Sitting for five hours on the plane is almost impossible with my pain, and I’m not excited about doing a ton of difficult tests or sharing my story again and again with new doctors. But God has said “this is the way, walk in it,” and so by His grace, I am seeking to do that. I am overwhelmed at the way each of you has sought to carry me in prayer and continue to help me fight and not give up. This road has been long and hard and oh so wearying, but we have a God Who never fails us. And He is greater than all. I am excited to see what He has in store this week.