Emptied

Attempting to write a blog after more than a year. A year that has been filled with severe health issues; from a near death stent in ICU, over 120 days in the hospital, and the daily struggle to breathe and have enough energy to move around.

I am emptied. Physically, mentally and yes, spiritually. Emptied of emotion, strength and fortitude.

I am emptied. Often times, emptied of thought, creativity, and desire.

I am in constant pain. And I constantly struggle for my next breath.

What I pray I will never be emptied of is hope. Not an earthly hope, one of a, “I hope this meeting goes well”, or “I hope I get a _________ for Christmas”, but a hope that is secured and anchored in Christ.

A heavenly hope. A hope that is anchored in God’s word, that doesn’t yield a “hope so”, but is bound to a “know so”.

Life is a struggle, and it is extremely difficult right now.

Perhaps being emptied is a good place to start.

It is when we are emptied that we can be filled.

Paul tied the two together this way.

“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.”

Romans 15:13 ESV

Realities

Time is slipping away,

Time is money,

Time flies,

No time left,

not yet,

Maybe.

Love is in bloom,

Love is eternal,

Love heals,

I give love,

not always,

Selfishness.

Laughter is good medicine,

Laughter is contagious,

Laughter rings,

I laugh,

at times,

Smile.

Pain, a constant companion.

Pain is healing

Pain reminds;

I’m human

I grow

Peace.

News From the Health Front

So, back from Duke and overall the news is good from the Lung Transplant Team at Duke Medical Center. Here are the highlights from this recent sojourn to Duke, with comments below:

1. No Acute Rejection detected in the bronchoscopy, as well as no Chronic – A0B0.
2. Blood work was good, white blood cell count is still hanging in there, a little low, but hanging in there.
3. X-ray was clear.
4. Pulmon Swallow test and Upper GI revealed that my Nissen Fundoplication had come loose, oops.

So, there is always more to the story than meets the eye, so here goes the minutia.

1. Just because the bronchoscopy shows no Acute Rejection doesn’t mean that Chronic Rejection isn’t possibly still present in the lungs. Acute Rejection, from what the docs have told me, is more widespread and thus, more easily detected in a bronchoscopy. Chronic Rejection, also from I’m told, can show up in places they don’t biopsy in a bronchoscopy. So basically, it can be hide-and-go-seek when it comes to finding Chronic Rejection in the lung tissue.

2. I started a regimen of Imuran (Azathioprine) 100mg daily about a week ago. That drug will mess with the ‘ol white blood cell count so, it’s bi-weekly labs for me to make sure I’m not more susceptible to airborne viruses or any other wonderful germs.

3. That’s about all there is to say for the X-ray. (Nice rhyme, huh?)

4. Acid reflux can be a big contributor to rejection of the lung tissue if you’re refluxing high enough, like to the Clavicle. The Barium Swallow/Upper GI study was ordered to see how things were in that department. In 2010, I had a Nissen Fundoplication procedure done which basically wraps the upper part of the stomach wall around the lower part of the Esophagus, in order to restrict acid flow back up the Esophagial path. This can also restrict food going down and can cause some swallowing issues. I’ve never experienced any discomfort from digesting food. But evidently, the wrap has come partially un-wrapped and they want to keep a close eye on it. Which might mean yet another lovely PH Probe is in my future, ugh.

If you are medical information nerd like me, here’s a link about the Nissen procedure:

http://www.mayoclinic.com/health/medical/IM03999

That’s about it for now. I’ll be back at Duke in 6-8 weeks for another bronchoscopy. The Lung Transplant Team at Duke likes two bronchoscopies in a row that are clear of any rejection before they pronounce you rejection-free!

The Lord continues to guide on this health journey and I am grateful to be able to breathe for Him! Job 33:4

Take Your Breath Away

There are many times you hear the expression, “That took my breath away.”  For lung transplant patients there is one thing that will do just that, rejection.  Statistics say that within five years of a lung transplant, almost half of all recipients develop BOS, which is a debilitating and irreversible type of rejection.  This is called chronic rejection, because it is irreversible.  The five-year survival rate of lung transplantation is among the worst of all commonly transplanted solid organs.

As a lung transplant patient, I was well informed of what the “chances” were when I decided to opt for a double-lung transplant in 2oo8.  I knew full well that this wasn’t a “cure” but rather, it was kind of like swapping one disease for another.  Most all lung transplant patients constantly have the thought of rejection in the back of their mind, even while living our lives to the fullest extent possible.  It’s just a fact we live with day to day.
What is rejection?

An organ recipient’s immune response in which cells in the body recognize a transplanted organ as different from the rest of the body and attempt to destroy it.

Not a pleasant thought to live with, but reality nonetheless.

Because lung transplantation is still a relatively rare procedure, research funding for this area is significantly insufficient.  There are NO effective treatments for chronic rejection and doctors have only theories as to what leads to the high rate of rejection incidences in patients.

Enter organizations like the Lung Transplant Foundation.  They are leading the charge to raise awareness and funds to counter the lack of support from the National Institutes of Health.  While research continues at ever-increasing rates, there is still a GREAT need for additional funding in this area.

Please consider joining their cause and help raise support as well as awareness!

Together, we can help breath new life into lung transplant research and return the breath of life to many!

Visit their website for more information and find how you can get involved.

http://lungtransplantfoundation.org/main/