9 Months…

A few days ago (on 9/2) I made my 9 month transplant anniversary.

A few weeks before that I had another bronchoscopy because my numbers were down.

All appears to be OK.  No rejection.  That’s good.

I’m hoping the fall brings better breathing numbers.

Still slowly but surely making my way out of the bubble.

I still have ups & downs but finally this month was able to get out & about more & do a few more things I’ve been wanting to do.

I told a few of my friends that I’ve never really had a bucket list, that I had a single item on it…

That was to go up in a hot air balloon, just for kicks.   Haven’t gotten any takers to come up with me though from those I’ve asked.

I’ll have to plan to do that soon though.  Or depending on the weather, I’ll have to wait until next year.

Maybe some time before or after the Transplant Games.

I do welcome the coming of fall.

The summer is still hard on me even with new lungs. I guess it will always be.

At least this summer I didn’t have a 10 liter concentrator kicking out extra heat or worry about how hot my tanks would get if I left them in the car to do some errands or go somewhere.  I don’t miss that.

Around this time last year was when things really started getting horribly tough in my wait.  I was weighing dual listing which was a bureaucratic nightmare in itself.

I was unable some days to shower or get out of bed much even just to come downstairs to eat.

I’d wake up gasping for breath in the middle of the night in addition to sweating from the heat of the concentrator even with the windows open & a fan going.

My PFTs were starting to hover downward even worse than they were during my car accident but in these 9 months of waiting, my body just couldn’t fight back any more.

Even with rehab.

I had the one dry run in August, but no calls after.

Things would get even uglier.

Why am I reminiscing about something so seemingly grim?

To show solidarity for those I know who are in the throes of this agonizing wait, some of whom have been waiting for years, not months.

It is impossible not to have it enter your head at a point, is my center going to get to me in time?

What if I get too sick to have the surgery & miss my window?

No one understands what that feels like unless they’ve been there.

I also share in this solidarity for those who have had a hellish first year fraught with complications or even needed other organ transplants after their first.

It’s easy to feel & get discouraged & think that there is never a break, never an end.

There’s no plan for dealing with this despite what the platitudes (people so easily profess) seem to say.   This didn’t happen for a reason.

All I can say is that I do understand what it’s like to be sick & dying.

I was there at least 3 times in my life before transplant.

There were times I never expected to be here now.

Things could change on a dime for me still at any moment.

I have to be comfortable with not having control, which for a Type A person is no small feat, but I’m learning.

For those whose transplants haven’t turned out the way they’ve hoped, or their recovery or wait has been so long & arduous… I am here to bear witness to that today.

It is OK. You are enough.  You are not ungrateful.  You’ve done your best & continue to despite it all.

That’s all that matters.

I can’t say it will get better because I don’t know that.

However, maybe it helps to have someone somewhere acknowledge one iota of your darker times & just sit in that space WITH you, maybe not physically but emotionally.

We’re there together, my friend.

I wish you a moment of peace in the exhausting fight that sometimes is just living.

 

 

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7 thoughts on “9 Months…

  1. So glad your results are thumbs up! By the way, I used to crew for a hot air balloon in New Mexico, and I highly recommend it. It can be a bit cost-prohibitive, but really worth every penny as far as I’m concerned. You should also ask your pilot if anyone would be willing to “pin” you – don’t forget!!

    Liked by 1 person

  2. Darkness ……. I have sat in that dark space, hell I’ve slept in it, eaten it, prayed in it ……. screamed, pondered, reflected, prayed some more …….. I still visit there from time to time …… we all do.

    What helps bring me out of that place is the AWESOMENESS of the entire event, te entire journey. That maybe it’s NOT about me ….. it’s about a family that lost a loved one, it’s about my family, my friends. It is been an unbelievable journey!

    Keep fighting on every day ……. a step forward at a time.

    And if you ever need someone to sit in the darkness with you. I know the space all too well, I’d be honored to sit with you ….. in silence, or not.

    Bless you, Nikki

    Liked by 1 person

    • I hear that. I just feel very deeply for those who are on this shared path that struggle so deeply but yet feel like no one gets it or they can’t let it out without guilt. This post is for them. They are worth every moment as they are by their very being.

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  3. Insightful as always. Looking foward to the AST Summit and I’ll be on Team Georgia at the Transplant Games as well. Lot’s to be thankful for.

    Liked by 1 person

    • Thanks Joe. Me too (looking forward to the summit). Slowly but surely I’m getting in better shape, which I know will serve me well if I can do the games next summer 🙂

      Like

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