I have not posted much for a while. I have been doing well in some respects, really not well in others. I am working, still rehabbing from various surgeries and injuries. There was a surprise test result summer 2019 that put the planned next steps on hold indefinitely. That test result also triggered greater concern and further evaluation of the underlying Ehlers-Danlos syndrome. We ruled out the more serious subtype via genetic testing. This was a relief. However, as symptoms continued, and gradually increased, I was in a watch and wait period. Nothing could be done until my body healed more and there was nothing we could do to speed up the process. Fast forward another year and things are worse instead of better. I have had tests every few months but my body is still not healing. I saw the Omaha surgeon again end of July and he informed me we were at the point of surgery but there were a lot of risks and he was not optimistic about the desired outcome. He recommended additional perspectives and referred me to a different Lincoln surgeon and to Mayo Clinic. I was grateful he was wanting as much information as possible before surgery. The Lincoln surgeon appointment was the middle of August and he was thoughtful and thorough. He had additional questions and testing that he would order. However, he felt that I would be better served in a larger clinic and he recommended Cleveland Clinic and referred me there. Neither of the local surgeons wanted to proceed with testing until I had been seen elsewhere as they anticipated Mayo and Cleveland would do their own testing and no point in repeating. Thus, I was in a holding pattern. There was nothing anyone could do. There have been some incredibly miserable times. I have continued working, but I have been struggling.
I heard from Mayo Clinic scheduling first and they had appointments available less than two weeks from when they contacted me. I heard from Cleveland Clinic the next morning to schedule and they got me in the next week. Wow! Grateful, but overwhelmed.
I was in Cleveland middle of September and at Mayo the following week. It was a lot of traveling, a lot of appointments, and a lot of testing. But, I felt like I was in great hands at both locations. Both surgeons were experienced and knowledgeable about the specific issues I had and how the Ehlers-Danlos syndrome complicates things, but were not afraid of the complexity. Both were optimistic about surgery helping and successful outcomes. These two surgeons know and respect each other and neither is pressuring me one way or the other. I still need another test, but they were fine with me getting this done locally and results sent back to them. We will go from there. It does look like surgery will be happening as soon as we can get things coordinated. I am leaning towards Mayo for surgery after all of the appointments.
There are still unknowns. But I am grateful for how things have fallen into place. God has shown Himself sovereign and has gone before. This is encouraging and reassuring. I am honestly a bit fearful of surgery based on what happened last time but I am also desperate for help. I am more hopeful and optimistic after these appointments and I am so grateful that I was able to travel. I am also exhausted after all of the travel. Prayer regarding wisdom and timing for surgery and more travel. I have had surgery out of state before but not inpatient surgeries out of state. Prayer for patience while waiting to get testing completed and surgery scheduled. Prayer for endurance as I continue working and trying to keep up with home tasks in spite of significant pain, symptoms, and not feeling well. God is good. He has shown Himself faithful. Sometimes it is last minute, but always in time. His grace is sufficient.
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