Upcoming
Hey friends,
Here are the latest appointment updates for you.
Rheumatology— The new rheumatologist I saw at OHSU is very nice! She’s not 100% sure that I have the periodic fever syndrome “Familial Mediterranean Fever” because I only have one mutation versus two (FMF is recessive). But, 30% of patients with FMF only have one identifiable mutation anyways. Soo, regardless of the genetic results, she’s starting me on the standard FMF treatment to see if we can get these fevers to go away, and I’m to monitor my symptoms while on the medication. It’s a very small dose, but I started experiencing lots of achy muscle pain in my back, so I have to email my dr. about it.. :/
Gastroenterology— I’m still dealing with horrible “charlie-horses” (muscle spasms). I don’t cry, but tears automatically come out of my eyes because the pain is disabling!
And they last minutes rather than seconds. My GI dr. is adding more magnesium and potassium to my IV nutrition to see if this will reduce the frequency of them. In other news, we are going forward with the liver biopsy to know for sure whether I have the copper overload disorder Wilson’s Disease. He is going to speak with my GI surgeon to see if she can do it. If not, then interventional radiology will be doing the surgery. Currently waiting to hear what the plan is.
Sleep Medicine— Using BiPAP is going very well! I now have less than 5 apnea episodes per hour (it used to be an average of 17 episodes per hour), and anything less than 5 is good! I have been experiencing really bad nasal congestion at night, so my sleep dr. recommended I turn up the humidification settings on my machine.
P.S. I’d appreciate prayer for my grandma. Her health has declined the last two weeks due to worsening congestive heart failure. She’s now under hospice care. It’s really hard to see her go through this, and she’s my only grandparent left. Pray that my family will be an encouragement and support to her in any way during this time.
