Brief patient interviews were recorded at the Magic Foundation conference in April to be posted on Youtube, as a way to help raise awareness for our diseases. Here's a link to mine: https://www.youtube.com/watch?v=JcNnNVXd9UY&list=UUYTG0ASue_DHuQOC3ZNtiZw
And a link to my friend Alicia's: https://www.youtube.com/watch?v=-a0BwcAyWbo&index=3&list=UUYTG0ASue_DHuQOC3ZNtiZw
She's been cleared for her BLA and will be having surgery and hopefully on her way to wellness soon! I hope to follow shortly behind in her footsteps!
Friday, June 13, 2014
Wednesday, June 11, 2014
Update: Post-op pit, not in remission
It's been a while since I've updated with my own status/progress, so here goes:
I had pituitary surgery on 2-5-2014 and am now 4 months post-op. We knew early on that it didn't look like remission, I was off my replacement hormones within a month, had to wait for my cycles to normalize a bit (I guess all that pituitary fileting was noticed! lol) and about a month ago now I started testing in earnest for my re-diagnosis. In April I had a post-op MRI and follow-up with my neurosurgeon, who said I did not have a visible target on MRI, so I wasn't a candidate for repeat surgery or radiation therapy. So, we now know that a bilateral adrenalectomy (BLA, the surgical removal of both adrenal glands) is in my near future...but I need a multitude of lab tests to prove I need it, and give a surgeon enough reasoning to permanently remove two very vital little organs and put me on life-sustaining medication instead.
After intensive testing one week, and hit/miss testing the next (I was cycling lower and thus stopped testing), I now have 5 diagnostic-level high lab results. Because of the severity and permanency of this next surgery, my endocrinologist has asked me to keep testing. If my pattern holds true (it's never perfect), then in about a week I will start testing again in the hopes of doubling the number of diagnostic-level highs that I have and move on to the surgeon referral process. It'll take a couple of weeks (2-4) to get my lab results back, and another couple of weeks to get my endocrinologist appointment after that if I do get sufficient highs. I'm *really* hoping he won't make me go on medication prior to surgery as they all have their (rather large and often permanent) side effects, and I'd like to move forward towards a permanent cure and health! Not to mention, my deductible is met for the year, so this year would REALLY be nice.
The surgeon I'm leaning towards is in Wisconsin and has a boatload of experience with this surgery. The runner up is in Seattle's Virginia Mason (closer to home), but he has a lot less experience with BLA's and rest tissue testing/surgery. We'll just have to see how things play out and when. We're hopeful, and I'm starting to allow myself to plan for a near-future in which I am somewhat functional and active again. I can't wait! Once again, it sounds silly to be excited and wishful about having surgery to give me Addison's disease, just as it was to be thrilled to be told I had a tumor, dreaded disease, and needed brain surgery. But, I've been sick for so long and becoming more and more debilitated and sick the longer this has gone on, I am excited at the prospect of any semblance of improvement, health and normalcy! (Okay, within reason...I am well educated and using logic, etc on this, but...YAY!) I can feel it is within my reach again. I'm on the path and moving forward.
I had pituitary surgery on 2-5-2014 and am now 4 months post-op. We knew early on that it didn't look like remission, I was off my replacement hormones within a month, had to wait for my cycles to normalize a bit (I guess all that pituitary fileting was noticed! lol) and about a month ago now I started testing in earnest for my re-diagnosis. In April I had a post-op MRI and follow-up with my neurosurgeon, who said I did not have a visible target on MRI, so I wasn't a candidate for repeat surgery or radiation therapy. So, we now know that a bilateral adrenalectomy (BLA, the surgical removal of both adrenal glands) is in my near future...but I need a multitude of lab tests to prove I need it, and give a surgeon enough reasoning to permanently remove two very vital little organs and put me on life-sustaining medication instead.
After intensive testing one week, and hit/miss testing the next (I was cycling lower and thus stopped testing), I now have 5 diagnostic-level high lab results. Because of the severity and permanency of this next surgery, my endocrinologist has asked me to keep testing. If my pattern holds true (it's never perfect), then in about a week I will start testing again in the hopes of doubling the number of diagnostic-level highs that I have and move on to the surgeon referral process. It'll take a couple of weeks (2-4) to get my lab results back, and another couple of weeks to get my endocrinologist appointment after that if I do get sufficient highs. I'm *really* hoping he won't make me go on medication prior to surgery as they all have their (rather large and often permanent) side effects, and I'd like to move forward towards a permanent cure and health! Not to mention, my deductible is met for the year, so this year would REALLY be nice.
The surgeon I'm leaning towards is in Wisconsin and has a boatload of experience with this surgery. The runner up is in Seattle's Virginia Mason (closer to home), but he has a lot less experience with BLA's and rest tissue testing/surgery. We'll just have to see how things play out and when. We're hopeful, and I'm starting to allow myself to plan for a near-future in which I am somewhat functional and active again. I can't wait! Once again, it sounds silly to be excited and wishful about having surgery to give me Addison's disease, just as it was to be thrilled to be told I had a tumor, dreaded disease, and needed brain surgery. But, I've been sick for so long and becoming more and more debilitated and sick the longer this has gone on, I am excited at the prospect of any semblance of improvement, health and normalcy! (Okay, within reason...I am well educated and using logic, etc on this, but...YAY!) I can feel it is within my reach again. I'm on the path and moving forward.
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