A Tiny Blip…

Just before my last appointment, I found out I had A1 rejection.

This is very common in the first year of transplant & sometimes even happens to people in the hospital before discharge from their surgery.

It’s the most minimal rejection there is.

I had to go down & get another breathing test to see if they needed to treat it.  Luckily, my numbers were the best yet so I was able to avoid it & it went away on its own.

Often, it does clear on its own. But if it didn’t & my numbers were worse I would have needed some high dose steroid treatment at home to make sure it cleared.

A nurse would have had to visit me daily for about 3-5 days & pump me full of steroids, which I’m sure would have made me crabby as hell.

So happy I dodged that bullet.

I need another bronchoscopy in a month or so,  but I tend to think that maybe the dropping of my steroid levels had put me into it.  Lowering the steroids are a good thing but sometimes it can trigger issues like this.    My steroids were at a level for a long time where rejection was impossible, but it couldn’t stay like that forever.

The key is to carefully watch & monitor to be sure the rejection either resolves or doesn’t persist into something more advanced.

That’s why I have to breathe into a tube every morning & chart my numbers for the rest of my life.

My doctor can compare my daily numbers to the laboratory function tests to get more accurate trends in my breathing & notice things like this sooner.

The good news is though, I’m at about 80 percent (or a bit above) of capacity & still have about 2 months or so to go before I stop peaking in function & settle in (usually around 6 months this happens according to my new nurse practitioner. )  I’m very happy I’m already this high.

It’s better than what I expected to be honest.

I had such crappy breathing for years I had to completely retrain my breathing & my abdomen muscles are still fairly weak (as is my diaphragm from past lung surgeries). I wasn’t sure how easy it would be for me to breathe properly. When I get allergy & cold flares it’s still tough.  So the fact that I’m pretty much normal range now (at less than 6 months) is astounding to me.

In addition, I’m still making gains in the gym.  It’s nice to feel worked but not exhausted.   The last two sessions I even did completely by myself as far as setting up the weight equipment myself (something I couldn’t do before transplant even when I tried. I always needed help).  My legs are back to where they were before transplant maybe a bit higher. My core is coming along.  My back is about the same, maybe a bit better.  All of it continues to help my posture & breathing too.

The best news was the chronic pain I had for years is gone, except in cold and damp weather. Even then because I can breathe better, it’s easier to handle.  I’m hoping it stays that way.

The pain that end stage lung disease causes is hard to put into words.  Even debilitating seems too tame a word.

My attention is still somewhat of an issue, but still much better than a few months ago.  I now have enough attention to watch a movie in a theatre & retain most of it, which probably means I can also go back to a nice stretch of reading.  Even these small activities were getting harder to do at this time 2 years ago.

It was hard to do sooner after transplant because of the medication effects.

I feel very fortunate.  I know some people who do everything right, following their team’s instructions to the letter & still struggle.

They still have many complications sometimes even a few years after a year (where most transplant recipients & docs say things may get a bit easier).

I celebrate these small victories on a daily basis because I also know that it could change at any time.

This month is Donate Life month.  I hope that if a few people come across my blog here & they are not organ donors, that they will consider signing up.

There are often some common myths regarding age & health status that all of us need to work harder to dispel.

The truth is all organs are tested vigorously before they accepted. (Being older is not an automatic disqualifier.)

If no one signs their card or gives consent beforehand, it won’t even get to the testing stage.  So many otherwise useful organs are wasted this way.

Also, if it’s true you don’t think you can donate directly to a person because of a health condition, then by all means at least consent to donate to research.

Tissue & organ donation for research can really make a difference & move the needle on understanding & future treatments.

(I gifted my original lungs to research for my diseases. To me it was better than letting them go in a medical waste bin.)

There’s more than one way to save a life.

My donor made my life even better than I’d hoped for.

I’m not cured & never will be, but I’m living a life better than what I had several years prior to transplant.

I thank him every morning.  I know somewhere he is out there & hears me.

I only hope that others would consider doing the same thing for someone else.

 

 

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12 thoughts on “A Tiny Blip…

  1. Yay Nicole! Thank you for the encouraging update! We are continuing to pray for complete healing for you and your dad and for God’s peace on your whole family – especially your mom! 😄💗

    Liked by 1 person

  2. A very uplifting message Nikki. Wonderful to see your writing gifts on full display! KW4U!!

    Liked by 1 person

  3. Good to hear from you and I am glad to hear the “blip” is a small one relatively speaking.

    Liked by 1 person

  4. I know no one can be more grateful than you for the gift your donor made, but I am very grateful to him as well. Thank you for sharing your journey with us.

    Liked by 1 person

  5. What a great post. So much good news. And I love that you talked about organ donation.
    If it’s okay, I’d like to use your story in a future post of mine about organ donation. I’ve written about temporal bone donation, to study my disease, but I’d like to write something for everyone.
    Thanks Nikki.

    Liked by 1 person

  6. Nikki, I am really happy to hear that you are doing so well. I have had my donor card for years and I cannot donate blood. They will find uses.

    Liked by 1 person

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