A Tale of Two Lees

It has been the 6 week mark since our last trip to the Mayo Clinic in Phoenix and I was planning on writing a note to give you an update. It had one theme - Progress! Then this weekend happened and now my note also has another theme - a few steps back. Oh well, what is a girl to do. I almost just wrote about Mayo but I have promised you that on this blog I would be honest, even when it is hard or not what I wanted. So, today you get the two-for-one special.

Mayo! Wow! What a visit we had and we also had no idea how much greater it would even become. We saw GI (guts and stuff), Urology/Nephrology (kidney), and were seen in the Pain Clinic. The many dislocated joints, impingement syndromes in both shoulders, a broken ankle that is not healing well, back/leg pain, and even my intestines hurt all the time led us to pursue pain management at their newly opened clinic. We felt like they would have some more creative plans and avoid any opioid containing medicines. So... that was our three day plan. As usual, everything ran on time and with the utmost care for the patient. The doctors had already studied my records before entering the room. Not much new immediately in the GI realm. The doc suggested a nasogastric tube to be done up here in Seattle. They will insert the tube up through my nose and down to my stomach. If this decompressed all of the air (actually bacterial over-gases), then a gastrostomy would be a possibility to help with the painful abdominal distention i am having. The tube would essentially be the same as a feeding tube coming out of my stomach and I would have the ability to let air out by turning a valve. Well, at least we can laugh at the new meaning of passing gas!

Kidneys looked great and the dietary and fluid changes I worked hard on for 6 weeks had paid off. New labs and urine collections showed marked improvement in all of the items we wanted to see changes in hopes of preventing more kidney stones. I have had over 20 kidney stones and had 5 during the spring trip to Mayo. I am thrilled to report that I had 0 kidney stones this trip (Oh, trust me, I know when I at least passed the larger ones) but I assumed more had grown. This was great news because we had opted not to take 2 more meds but try diet and lifestyle and it worked.

The Pain Clinic ... Let's just say the results are more than I ever dreamed or even asked for in my prayers. After a very thorough pain history and exam, the two doctors decided on a trial of a combo of three medicines (none narcotic). One medicine would take a few weeks

to reach a blood level and the doctor warned it could make me very sleepy so take it at night. In a few cases, it has had the opposite effect and has a coffee stimulant effect. Yay me! It makes me alert so I take it in the morning which is a very hard time for people with EDS for many reasons. My mornings just got a whole lot better. The other med was a muscle relaxer not well known. Because EDS effects all connective tissue, the doctor explained my muscles were constantly trying to balance the inconsistencies in having a "wobbly" body. That is why every where you touched me, elicited pain. My muscles were always firing and being used. The muscle relaxer has been amazing the last 6 weeks and no side effects. This left us with aching joints to address. They wrote a prescription for a compounded cream made of

3 very different medications. I call it my personal miracle cream. It takes away the pain deep in the joint. Not cheap, but my beloved Steve says there is no price on seeing me smiling when I get up in the mornings or when we come in from a walk. (I was doing neither when we left for Mayo). So, that is all the great news I wanted to cover from the 6-week mark from Mayo. Thank you so much for the prayers and the encouraging notes here on Post Hope.

I had hoped to end there but we have had a little "hiccup". This weekend we were out town with friends when on Saturday evening I had a pressure sensation building in my chest and was light-headed. The rest is blurry except for a few lucid moments. I collapsed and had to be transported by Medic Unit to the local hospital. Long story short, I was diagnosed with acute respiratory failure and had to be intubated and placed on a ventilator to breathe. I was then taken to the ICU. They were worried about my aortic aneurysm but

it was still neatly tucked in my chest although it looks like it has grown a few millimeters. (Not good). Anyway, tests revealed I have a very severe case of bacterial pneumonia. Guess that's why my chest had been hurting for a couple of weeks. I promise a quicker check on things next time. You know me, I don't like going to the doctor unless an absolute must. I'm home resting and with my calendar cleared for a few days and an impending snow storm, looks like God planned me a little vacation in my pjs

and the book list and Bible study list is long. So, not so bad after all! I love how there is always a plan in things even if we can't see it in the moment.

Thanks for taking the time to catch up with us! Next post will be about Steve .... stay tuned next weekend!

Grace and Peace,

Lee

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Comments

Judy Wilson:

Thanks for reading my mind. I just left a meeting with Steve but did not get the opportunity to ask how you were doing. Good news on the Mayo visit. Do you plan to do the GI tube? Seems like releasing the gas would be a big relief. I assume since the pneumonia is bacterial that you are on antibiotics. Sure hope the drugs don't mess with your fussy GI tract.

Judy Wilson:

Oops pushed post before I was done. Please remember I am nearby and eager to help anyway I can. You and Steve are in my prayers. Bless you both.

Alissa McPherson:

Love and prayers from Knoxville! You both are loved! Jeff and Alissa McPherson

James Broman:

So grateful for this measure of relief. Continuing prayers for further progress and peace.

Kurt Kroschel:

Thanks for the update - I will offer up prayers for you every time I drink from the UT mug!

Crystal Van Tine:

Thanks for the update, Lee. Thankful for the good news. Van Tines are praying for you.

Jane Levin:

Thanks, Lee, for keeping us informed on your health so that we can hold you up in prayer. And we pray for Steve as he holds your hand and "covers" you! Jane and Andy Levin

Lisa Currall:

Very thankful for all the positives concerning Mayo. I'd love the details when you're feeling up to it!!! No narcotics here either. I'm so sorry to hear of your mishap and visit to ICU. Those of us with these diseases don't address issues until we're coding!!!! I get in trouble too :/ Hey, I want to know that book list. :) Many Blessings on your healing...... Lisa

Jill Shelton:

Praise the Lord for the semi good report from Mayo and the positive updates about the no narcotics and the kidney stones, as well as help feeling better and the extra boost in the mornings. I don't like the fact you had a collapse and pneumonia but grateful your ok and please take that time for r&r. You are both loved and very special people.

Ellen Bunch :

Love you Lee Bob. I had you on my mind today and was going to call your mom for an update but glad you posted all this info. Praying for you and Steve daily

Amanda Webb:

Love you Lee. Continuing to pray. Thanks for the updates. Sending love and big hugs!

Steve Braden:

Uncle Steve and I were just talking about you guys yesterday. Glad to hear about your results at Mayo. Sorry to hear about your experience this past weekend. We are praying for you guys. Sending hugs from Tennessee

Teresa J Brooks:

Dear Lee: Thank you for the update. I'm so glad you had positive and helpful results from the Mayo visit--a definite answer to prayers. So sorry about your bout of pneumonia. Prayers for a complete recovery. Love, Teresa

Nina Davenport:

Amen! Enjoy your master planned vacation. Happy to keep company or deliver goodies. Take care...

Cindy Hambly

:** You are an inspiration with your strength and good humor. Prayers daily for you and Steve. Know I am here if you need anything; I need something you do in my retirement😊.

Much love to both of you. Hope to see you next week Lee. 😘

sandra henry:

I'm glad you gave the good news first! Your "hiccup" sounds so frightening. I'm thankful you're on the mend and can enjoy some quiet days. Sending lots of love and prayers from OR.

Mark Colavecchio:

Thanks for the update Lee. Les and I will be praying and we're grateful for the good news for sure. Glad you're home!

Sandy Temple:

Girl, you continue to amaze, encourage, uplift, and inspire me! So very happy to hear that your trip to Mayo was fruitful! Sounds like answered prayers all around! I was saddened to hear about your "episode" last wknd. As bad as pneumonia can be, thankful that it wasn't worse, though. I, like a lot of other people who love and care about you, was concerned. Praying you feel much better soon. I pray for restored health for you, and a life without pain....., and I pray for God to give you the strength and courage for whatever lies ahead. Your witness is astounding....you are a reflection of Him. Love ya, mean it😘

Tom and Linda Hamilton:

Hopefully you are feeling a ton better now, Lee?! Am praying that the pneumonia is completely gone, with no lasting effects. Thanks so much for the update.....all of it. It's so helpful to know how to pray, which is what I'm doing right now............