Well it's been entirely too long, but haven't known what to tell you. Mike's trip to John's Hopkins hasn't led to any life-changing news for us. He's had several blood draws over the last couple months and his levels are all over the place again. He is on a blood sugar med to help his body regulate his numbers as that seems to be the latest organ affected. His hormone levels indicate a growth hormone that is off the charts high. The answer from John's Hopkins? Let's retest in 6 months. His last blood draw indicated a pituitary tumor . . . . ummm, been down that road - wasn't there. Mike's current endocrinologist has told him she does not know where to go with him and referred him to a rheumatologist for inflammation, thinking the pituitary swelling is the issue. Mike's on a new med for this - not helping. Mike's prednisone levels have also been dropped as the doctor at John's Hopkins wants Mike's levels dropped to retest him for the rare autoimmune endocrine disease that is suspected by doctors in Cincinnati. Unfortunately, a drop in prednisone, the only thing that keeps Mike's endocrine system working, means increased pain which leads to vomiting and passing out and increased pain meds. The last few weeks have been exhausting. Mike is in a lot of pain, up most of the night, vomits frequently, and he is now passing out from pain. This leads to a loss of freedom - no stairs, stove, knives, walking with glass, driving . . . and more sedentary so as not to fall. If I could tell you the stress this has induced on both of us . . . the toll it's taken on us personally and in marriage. It feels like so many steps backwards. We both feel like if there isn't a "plan", there is no movement toward answers or progress or better quality of life. When Mike's endocrinologist gave up on him, he researched other reputable endocrinologists and found one ranked number one in the country with one of the specialties being pituitary diseases. This dr just started seeing patients, and Mike has secured an appointment in three weeks in Boston. You'll remember my parents live up there and he will stay with them and dad will be on Boston run duty. Perhaps a highly ranked endo and the best vet I know, can figure Mike out! We are thankful Mike got the appointment, and beyond that, we will take what comes. One more thing - Mike has an appointment mid April to have a lump removed from his chest - something that was found months ago. Surgery can be risky due to the endocrine issues, but the lump has to be removed. How can you pray??
Pray for the surgery in April and the results of the biopsy
Pray for Mike to get a break in headaches and vomiting and passing out.
Pray for our marriage to endure through all life throws at us.
Pray for SLEEP! We're both exhausted.
Pray for the appointment with the new endocrinologist in Boston.
Sorry it's been so long, friends. Love to you all for not giving up on us.