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Mayo Marathon Summary

Hello from a finally “rested up and coherent” Mayo Marathoner. As I mentioned in my last post, we finished 18 appointments, 1 phone consultation, and an ER visit that led to hospitalization. Only by God’s grace and strength was this accomplished in 7 days. In a quick summary, in contrast to last year’s 6 week stay where we seemed to learn challenging news at every turn, this trip contained a lot of good news!

“ I will bless the Lord at all times; his praise will always be on my lips. I will boast in the Lord; the afflicted will hear and be glad. Proclaim the Lord’s greatness with me; let us exalt his name together.”  Psalm 34:1-3

Here’s the main rundown:

Blistered Right Arm: Has gone from extremely painful with raw skin and exposed nerves to tolerable pain with signs of healing. I am being treated at the Advanced Wound Care Center in Olympia and expect that to last quite a few more weeks.

Urology (kidneys): I’ve continued the dietary recommendations from last May (when I had 5 kidney stones) to having no kidney stones and all the scans this trip remained clear of stones.

Pain Clinic: Plan is to continue current medication regimen which is working pretty well and my pain is manageable most days, and so far we haven’t had to add narcotics to the regimen.

Cardiology: Considering the serious nature of having an aortic aneurysm, the doctor considered the small increase in size as stable and for now, we are going to leave all of the heart medications the same. I have a small mitral valve prolapse that we will monitor for now. He would like better control of my heart rate and blood pressure, but suspects the culprit probably lies with issues with the brainstem. While on this topic, we are scheduled to see a nationally respected Vascular Surgeon in Connecticut who specializes in “complex aortic aneurysms” and also on this trip, we will be spending most of a whole day with my neurosurgeon and neurologist in New York to evaluate progressing brainstem compression symptoms.

Orthopedic: This visit was to evaluate my right ankle in which I sustained an avulsion fracture last year. I still have a lot of pain in that ankle and I frequently “roll” the ankle. Some weakness in the joint was identified during the examination of the joint. The plan is to increase my physical therapy of the ankle and if by mid-July it is still causing trouble, I will be considering a fusion of part of the ankle to stabilize it further so I can maintain an active lifestyle.

Immunology: This was our first appointment with this doctor and this appointment was requested by my lead Genetic Counselor. The doctor spent over two hours with us and I won’t even try to describe all that was discussed. The issue was to get a better understanding of whether I have Mast Cell Activation Disease or Mastocytosis. They have subtle differences but those differences are treated differently. I will be completing more labs here, hopefully during a systemic allergic reaction when the markers of the disease would be highest. I now will be carrying an Epi-Pen with me in case of a severe reaction. Mast cells congregate around Connective Tissue (the cells that are defective in my Ehlers-Danlos disease).

Gastroenterology: Probably my most complicated organ system to sort through but I will keep this short for now. Tests revealed that I have high levels of Small Intestinal Bacterial Overgrowth which produces methane gas in the intestines and stomach causing dramatic distention of my abdomen. I am on a week’s trial run of two targeted antibiotics to kill the bad bacteria. I have had a Nasogastric tube since March 4 that allows me to “vent” my stomach several times a day. This venting has created a drastic decrease in my distention so we will be moving forward with placing a permanent gastrostomy tube that will exit from my abdominal wall and the Nasogastric tube will be able to be removed.

Pulmonology (lungs): I saved the best for last! My lung scans from February following my seizures showed enlargement of my heart, fluid in my lungs, dilated pulmonary vessels, pulmonary hypertension, and collapse of the lower bases of my lungs. These are all very serious findings and found on more than one scan in February. The doctor gave us hope that we could see these type of changes, although pretty severe, from several intense or lengthy seizures. The Mayo scan came back COMPLETELY clear. The doctor even admitted he was a little surprised because the lungs were so problematic in the February scans. We can finally take a deep breath of relief! (Pun intended)

So . . . In light of all these good reports, let’s end where we began:

“ I will bless the Lord at all times; his praise will always be on my lips. I will boast in the Lord; the afflicted will hear and be glad. Proclaim the Lord’s greatness with me; let us exalt his name together.”  Psalm 34:1-3

Thank you for continuing to check in on us and for leaving such encouraging notes. 

May grace and peace be multiplied to you!

Lee and Steve

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