Closed Doors
In my previous post, I mentioned how my geneticist referred me to a different place for further diagnostic work-up for mitochondrial disease, but I kept it sort-of secret in case it didn’t work out. Well, that’s just what happened.
I learned that Boston Children’s has an extensive metabolism program, and it sounded amazing. But….I got a phone call yesterday that the doctor (after thoroughly reviewing my records/referral) thinks it’s best that I just stick with Cincinnati and receive all my care there as he doesn’t think he would have anything new to offer..
I am just so thankful for the Lord’s guidance in opening and closing doors! Even though this door is closed, there are many more doors that can open!
All that has happened has been such a great learning experience, and it constantly reminds me to fully rely on God for wisdom.
So here’s the plan:
1. The referral/records review process in San Diego takes 4-5 weeks, and thankfully, next week will be 5 weeks! We will see what this mito specialist says..
2. Even if he is willing to see me, that still probably wouldn’t be till next year as he is booked out. So I’m researching other mito specialists that could possibly see me in the meantime.
3. Washington and Los Angeles is currently off the list. So I’ve been checking into other places across the nation. Looking on the bright side, having a complex medical case means I can travel when I wouldn’t otherwise!
In other news, cardiology on Monday went well. In the middle of July, I stopped the saline infusions because sadly I didn’t notice anything, and my “good” vein in my right arm is developing too much scar tissue from countless IVs and blood draws. This in turn made it difficult for the nurse to keep placing a new IV every time which aggravated the CRPS pain! So in a way, I’m glad to have stopped the infusions.
Dr. A wants me to try a combination of two meds for the dysautonomia, but I won’t try them until I see a mito specialist..
This coming Thursday on Aug. 8th, I have another heart echocardiogram scheduled because she wants me to get a current baseline for this year.
******
This is totally random, but do you need a good laugh? Read these below.
Have a good rest of the week!
