Children, Rare Disease, & Transplant

My diseases robbed me of the ability to have children.  There was a 50/50 chance of passing along Tuberous Sclerosis Complex (TSC) to a child if I had chosen to have one at any point.   Later, I had a complication that would completely close the door on that possibility, ever.

I have no regrets in this regard, but sometimes being a single woman with one disease (lymphangioleiomyomatosis or LAM) that consists primarily of women who may already have had children or were having children when they were diagnosed is tough because it’s an experience I can’t relate to in the same way.

I can understand my parent’s fears of having a child with serious illness, but it’s not the same as if I was a parent myself.  I do my best with it, but it’s a challenge.  Especially when the hot button issue of having children comes up in my support communities.

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Laughter & Play = Best Medicine

As part of my last pre-transplant hurrahs, I was able to attend the Steel Stacks Improv Festival this weekend to see my bestie & a few other friends perform.  In addition,  I also saw many great groups from the region.  Some I had seen from the prior year’s festival. Some were a few of my Del Close Marathon favorites.  Some were teams I had made a point to see because there are people in them who have been a big part of my improv journey & learning.  Others were new. It’s a nice mix.

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Some People’s Kids…

My last appointment had some nice moments.  I ran into a few people from an online lung transplant support group I was invited to join awhile ago.  I appreciated that because I did get a few minutes to shoot the breeze in between & meet up again with people who I have been communicating with.

Some of the other respiratory & pulmonary staff are getting to know me now because they remember me from prior visits or my evaluation tests so that also helps me feel more at ease.  I don’t just feel like a number within this big hospital like I did for quite awhile.

My doctor was running late so my bestie and I were out in the waiting room since there wasn’t a free room to wait in after they took my vital signs. That’s when the “not-so-nice moment” happened.

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Official But Not Official

So from my end, I’m listed even though on paper I’m not. The time has arrived for all intents & purposes.

From my team’s end there’s a few loose strings to tie up first.  It’s just a few administrative loose ends that are keeping me from being in the computer officially. Those will resolve soon enough.

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Review: PillSuite System

I had always wanted to try PillPack, but wasn’t sure that my insurance would allow me to use them.  They say they accept Aetna, but then I also have to wait in the mail for my meds to arrive, which I’m not always willing to do if I’m running low or they’re expensive.

I think I found a do-it-yourself alternative that I like.  Even though it takes a little time to use,  it’s actually not that bad.
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Smart Oximeter Comparisons: Edge vs. iSp02 vs. iOximeter

With my hasty exit from work last July due to a rapid desaturation (loss of oxygen), my SafeHeart iOximeter smart oximeter was a casualty. It was lost. It’s possible if & when I can return to work, I will locate it because last I remember it was in one of my drawers. I kept that one as a back-up to have one in case I needed an emergency read at work & I do remember using it that day to monitor things since I was feeling off.  Continue reading

Interesting Perspective: When Are We Empowering Users, & When Are We Just Being Lazy?

My mentor, friend, & fellow advocate, Casey Quinlan, had posted this article to one of her social media pages back in December a few days before Christmas.  I had flagged it to read later & then realized I hadn’t actually read it.  I’m glad I saved it because the timing was right for me to process it.

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Transplant Hero App: A Transplant Surgeon Gives Back

I found a great free app I’m hoping to try out after my next appointment. If not then, I know I will definitely use it post-transplant.

I thought it would be great to pass this information along to others who have trouble managing their transplant medications or haven’t found a medication management app that they like yet.

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Next Friday The Clock May Start…

I realize I haven’t done much updating on my situation lately.  There hasn’t been that much to report, but I appreciate everyone who has been dropping in to ask.  My next appointment is the 25th & I meet with my local doctor the day before.  I was supposed to be in this place last month, but the weather had other plans.  I can’t say it made that much difference.

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