It’s Been a Year…

Last night, I celebrated my one year transplant anniversary.  At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.

I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.

I was waiting until after that celebration to share what I found out last month.

They did narrow down and figure out why my function had dropped unexplainably over the summer.

A virus attacked my lungs. As a result I have damage.  It’s mild chronic rejection.

Yes, those words — which I know strike fear into any one who lives with a transplant.

However, this is a form of rejection that’s manageable with drugs.  My team & I hit this hard from the beginning.  We narrowed down & eliminated everything else.

I am relieved that it wasn’t an issue that required surgery.

My team tested & worked me up for everything to pin this down before arriving at this diagnosis.

I might not get that function back.

This just proves you can follow instructions to the letter & things can still happen.

Was I scared & disappointed? Yes.

Was it a blow? Absolutely.

But fact remains without my transplant I would not be here – end of story – so that disappointment was tempered somewhat.

My quality of life is still better than it’s been at least 2-3 years before my transplant if not a little more.

I’m still oxygen free.  Can still enjoy life without starving for air.

Fact remains with the function I have now (around 60 percent) I lived with for several years with LAM very actively with good quality of life so I know how to adapt to this change as I’ve been here before.

My lungs thankfully aren’t wracked with cysts so this 60 percent is better than my old 60.

I still have challenges & things to work out.  But I always am going to.

My stamina & energy have been decreased because of anemia. I’m getting my levels run again tomorrow so I’m hoping that my supplement is kicking in so I can be a bit more active than I have been.

It’s been improving ever so slowly because I am able to stay awake during the day now versus feeling wiped out over everything.

This is the poorly understood part of transplant that not a lot of people see.  It’s also an often private pain that’s hard to talk about too.

There’s a line of what to share for people’s benefit & to avoid isolation but then to preserve privacy & allow oneself to process what’s happening with their body.

That line is not always clear.

On the bright side, I made it through my first year with many less complications than I anticipated given my surgical history pre-transplant.

I’m thankful for that & my support system.

In the spirit of new beginnings, I have maintained this blog since August of 2015.  I still may post occasional updates, but I am entertaining starting a new blog in 2018 with a different focus to re-energize myself to things outside of transplant world.

Transplant world is still important, but it’s always going to be here since I live it.

I feel like now it’s time to spread my wings some & focus on something else.

I’m just not sure what that is as of yet.

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5 thoughts on “It’s Been a Year…

  1. Congrats on your first year! I am so sorry that you have had some serious complications. Stay strong as I know you will. My whole first year I was wracked with fear ….. fear of everything, as I always waited “for the other shoe to drop” …….. once I hit that one year anniversary is when I was determined to help others in ANYWAY I could …… through words (my blog), deeds and action (volunteering) ……. I have lived a very happy life thanks to my donor and my team. At the same time, I am giving back and hopefully touching people in a positive manner. My transplant center does many, many more (3 times?) lung transplant than heart transplants …….. on the heart team, we have at least 4 volunteers, on the lung team there are none …….. one of my tx coordinators moved from hearts to lungs and was wondering why no lung volunteers. I don’t have the answer ….. but with your wealth of knowledge you have amazing gifts to give either at the hospital or with Philly’s “Gift of Life Donor Program”. Be well and stay strong my friend. ❤

    Liked by 1 person

    • thanks. I’ve done so much service in the past that it’s come at the expense of myself. I’m using my time to be a bit selfish and refocus my energies on other things that I can enjoy and learn from too, something I always put on the backburner pre-transplant. Once I get a bit stronger and am in a bit of a better place (lots going on offline right now that needs my attention) then I’ll give back again. But I learned the hard way what happens when I put myself last.

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  2. Congratulations Nikki Hope you are well Hugs Evelyne

    Sent from my iPad

    >

    Liked by 1 person

  3. Nikki, thank you so much for sharing your thoughts and perspective on transplant with us. It’s a unique privilege to follow you on your journey. Your writing, and the details you choose to provide, provide me with an incredible level of insight into life and living with a transplanted organ. I consider your blog a true expression of giving and look forward to whatever gifts you have in mind for your next writing project. Cheers! KW4U

    Liked by 1 person

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