Final Words from the Mayo Clinic

Final hello from Mayo! This will be my last post from here as we are winding things down and making preparations to hit the road and return home in the RV beginning Tuesday. Our time here has been incredibly helpful and we will return with a new appreciation for this cruel and insidious disease known as Ehlers-Danlos. We have some new modalities from medications, diet, and activity to try to learn to live productively with the side-effects and chronic pain of this disease.In our 5 weeks here, we have had 17 appointments with specialists

(each lasting an hour or more), 15 radiology procedures ranging from x-rays, CTs, MRIs, ultrasounds, and 4 very technological and lengthy tests, and 8 trips to the lab for blood draws or urine samples. It has been a blessing to get all of this done in a compressed time frame, but I also have to add that it has been a physically, emotionally, and mentally exhausting pace and onslaught of information. I am not returning with a cure, or with less impact to my body, or with a resolution for the excruciating daily pain. What I am returning with is a much greater understanding of this illness and steps I can take to make it hopefully more survivable and livable. Between new medicine regimens and activity guidelines, I have hope for an increase in functional living.

Since my last post we have learned a lot more. I do have a genetic mutation implicated in Ehlers-Danlos and more family members will need genetic testing for this specific type. EDS is the cause of my aortic aneurysm and other causes have been eliminated. Evaluation of my right shoulder revealed an "impingement syndrome" including a rotator cuff tear, a bone spur in the joint, and chronic bursitis. Surgery has risks so I have opted for a trial of physical therapy to start and evaluate surgery options at a later date. All of my urology tests provided great insight to the reason I have had over 20 kidney stones. Treatment includes diet changes and medication and hopefully I will see less or a resolution in kidney stone formation. The solution of my left kidney pain is eliminating of or embolization of the extra kidney vein my body has grown for unknown reasons. The urology/nephrology specialist said the procedure has a 50% chance of losing the kidney. We decided to defer the surgery and live with the pain for now. Cardiology will follow my aortic aneurysm for increases in size and begin a medication regimen to decrease pressure on the aorta. So far, the beta blocker has made me feel miserable but hopefully that will improve with time. Finally, my GI studies show slow transit of the large intestine/colon. The surgeon recommended a permanent ostomy bag that

would by-pass the large intestine. There are a lot of concerns of the ability of my skin to heal properly and stay healthy in the process of a long term ostomy due to my EDS. There is also concern for the success of the intestinal re-routing and stability of the sutures internally healing. We may have to resort to this option, but we are going to give our new regimens a chance to positively impact my GI system. Our last visit was with endocrinology and revealed under functioning of the thyroid and treatment for Mast Cell Activation Disease. Both could be causing issues with my GI tract. It will take some time to see benefits from these two medicine regimens. Mast Cell Activation Disease is becoming a feature found in patients with EDS. Mast cells create an allergic response to various triggers and are found in high concentrations in the Connective tissue which is implicated in EDS and it causes skin flushing and bloating in the GI tract. Our experience here has been phenomenal. On-line medical records are managed in the Patient Portal which is available as an app on phones and laptops. Every appointment transcript, every radiological report and pictures, and lab and urine results are all posted with a few hours of the appointment or test. My primary care provider at home will be able to access all of these records and coordinate my care upon returning home. Of all the appointments I had, I was never called back later than my appointment time. I found this amazing!! I can use the Patient Portal to directly email my providers here at Mayo and request an appointment at any given time. There is peace in knowing that just because I am leaving the area, it doesn't mean my accessibility to my health care providers goes away.

Well, you made it through the technical part and essentially the medical "nuts and bolts" of where things are physically. I will end with some words on where this journey has taken my heart emotionally and spiritually ...

I will conclude this extraordinary journey with simultaneous emotions; deep sorrow and deep joy. How is this possible you ask? Deep sorrow exists because I am not coming back cured, or in less pain, or with less exhausting suffering. In actuality, I am returning with additional medical diagnosis than when I arrived. Currently I am on three new medicine regimens that are leaving me exhausted and feeling poorly on a daily basis. This has given me great pause and some sorrow has settled into my soul. How do I live fully like this? Then I am reminded that my definition of "fully" is very different than the one God has for me. Often our expectations come down to this: we want Jesus to make our lives go smoothly. That is what we deeply desire. But that is not always what God wants for us. Our vision is so shallow we fail to see a much bigger plan for our lives. Jesus is not our genie in a bottle assigned to the task of making our lives easier. While Jesus doesn't always give us what we want; he always gives us what we need. We are often too weak, too unwilling, too easily discouraged. Our strength comes from God alone and not the temporary happiness and fleeting comfort this world offers. Deep sorrow loses its power and impact when I truly consider the things that matter in this life. If my pain allows me to help another by comfort, by understanding, by sharing a tear, by revealing joy, by serving another, by loving fiercely, by pointing a hurting soul to the one true source of hope - then my suffering has purpose and I am living life fully. As Helen Keller wrote, "So long as you can sweeten another's pain, life is not in vain."

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort with which we ourselves are comforted by God." 2 Corinthians 1:3-4

Now I see that I can live with deep sorrow and deep joy. It's not about a moment in time but about a journey through time that makes the moments worth living.

Grace and Peace to you,

Lee

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Comments

Lisa Currall:

Thank you for the update. I understand exactly where you are and will pray. We share many of the same things so coffee would be lovely...... Blessings Lisa

sandra henry:

Lee, you are a wonder. Praying for you and Steve as you process everything you've been through and adjust to a new way of living. I'm grateful that you will still have access to the doctors at Mayo. You bless everyone you meet/know, and I'm pretty sure the staff was amazed at your strength and faith. I pray that your new regimen will bring improvement to your health and relief from the pain. Enjoy your trip home. Love you always.

Judy Wilson:

Hi, I always appreciate your medical updates. I wish there had been better news, an amazing new treatment, or cure but as you say that is not part of The Plan. Enjoy a couple of days without appointments before your return. Hope you have a good return trip and take time to enjoy the sights along the way. Prayers that your body begins to accept the new medications with positive results. Safe travels.

Tony Grande:

Lee, thank you for keeping us updated. We are praying for both you and Steve, that our great God will continue to use you for His plan and purpose. We are also praying that He will bless you with healing according to His will and His timing. Sending hugs from Alabama.

Sandy Temple:

I continue to be left in awe when I read your posts. God is revealing so much in you and through you. I am thankful that you share your journey with us, and while I continue to pray for healing and relief for you, I pray, too, that God continues to give you strength for whatever lies ahead. You glorify Him so well, and I am honored to call you my friend. Love you.....