Journey To Now

I honestly forgot about this event until last night when I received a reminder email & updated agenda.  My local hospital was having a one-day symposium at a nearby campus & a few months ago had asked me to be part of a roundtable about lung transplant.   It finally hit me last night that we are at the end of the month.

Things have been a blur the past few weeks, & I had a bit going on since my last appointment.  I don’t know much detail yet, so I won’t share in depth. In a nutshell, they found something concerning on my CT scan I get every 3 months, so I needed to up my oral steroid medicine & then also get a three day infusion at home.

This also meant needing occasional insulin because it raised my blood sugar, & going back to testing.

They also added me back on Zithromax for now to take 3 days a week for extra measure.

After October 12, I’ll know more & what if anything helped.

In addition to this, the season change hit me hard again.  As the days got shorter I found my anxiety & depression had been increasing.  It wasn’t just the healthcare changes (Congress) that had me concerned, it was also less daylight.  I did get that adjusted but it threw me off initially & didn’t help cope with all the other things going on.

All in all, in spite of an exhausting week, I felt decent.  I woke up earlier, donned some nice clothes, & went to the roundtable.

I arrived at the session before which was a basic primer on lung transplant, & then another recipient & I (he was 13 months post & a physician) shared our stories & took questions.

I did talk more, but I think this was because I had a longer process, had rare diseases, & had tried to list at more than one center, which I tried to highlight.

I didn’t cover everything but it seemed from the feedback I received that I really opened some eyes to how involved it can be just to get the transplant itself.

It was nice because along the way there were many in the room that had helped me at one point or another & I was able to thank them.  They were happy to see me without my oxygen tanks & looking worlds different than I had when I had first encountered them.

I had my hand sanitizer with but I did exchange a few hugs with some people because many of these people helped me out with barriers.  That helped make the process easier along the way. Whether it was working around insurance limits, helping me rehab from my car accident so I didn’t lose much listing time, connecting me with extra rehab opportunities, or just simply listening to frustrations as I updated them.

It was a nice feeling.  I wasn’t overly sunny or fake positive but in sharing my story today I did realize just how much I had gone through & survived throughout this whole process & in spite of these few fits & starts, I am having a much better first year than I had anticipated.

I am not out of the woods entirely, but as I typically do,  I downplay my accomplishments.

It’s taken me a few weeks of reflection to look back & see I’ve done more in these last 9 months than I have in about 3 years (& that’s with taking work out of the equation entirely).

It’s hard to reconcile that sometimes.

I don’t want to appear to others who may be struggling or did everything I did & having a harder time that I’m minimizing their struggles or gloating either because I honestly expected many complications & a long recovery.

I’m still learning to adjust my way out of the bubble both physically & mentally.

But opportunities like these help me see that I while I may not feel like I’m doing much, it’s what I’m doing that’s making the difference.

I am living, not merely existing or clinging to a thread of life.


2 thoughts on “Journey To Now

  1. It is something to look back and realize that you have come out quite far at the other side, isn’t it? It’s like losing weight; your clothes are a lot more loose, and you may even have to buy a couple of sizes smaller than you did a year ago, but the change is so gradual that if you didn’t have any pictures, you would swear that you are hardly making any progress. Even though it may not seem like it at times, your body loves you for all of your hard work. ❤

    Liked by 2 people

  2. Nikki, one has to be a survivor to even begin to contemplate survivor’s remorse. Thanks for sharing your story. Keep your focus on the operative word. KW4U!

    Liked by 1 person

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