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

All Things Medical, All Things God…

ARC_Logo_Bttn_Vert_CMYKDateline, Wednesday, August 13, 2014.

Here’s the latest update from the medical front.  So, more rejection, but thanks be to God it is only an A1 rejection again this time!  For those of you that aren’t familiar, rejection of any transplanted organ is rated on a scale, A1-A4.  And as far as I know, that’s it.  A1 being the smallest amount of detectible rejection, and A4 being the more severe.  The rejection is determined from tissue taken during the Bronchoscopy procedure and then sent off to pathology.

I’m sure it’s a LOT more complicated than that, but that’s all they’ve told me, or at least all I’ve understood from what they’ve told me.

I’ll begin another three day round of 500mg of infused Prednisone, per day (also known as Solumedrol), on Tuesday, August 19.  I’ll be given another Bronchoscopy, in about a month or so from now, to determine if that has done the job to knock out the rejection.

The doctors have also taken me off ALL three of the oral antibiotics and put me back on just one.  They were fairly sure that’s what was making me feel so bad, duh.  I could have told them that!

I’m also going on a third anti-rejection drug starting next week.  This will be one I’ve never had before, so that should be an adventure.  The docs are still concerned about the drop in both my white blood cell count and my red, I forgot which component of the red, so that’s why they are switching my anti-rejection meds up a bit.

Still slated for more dermatology surgery on Friday, August 22, along with a pre-op for some gastric surgery later this year to repair the Nissen Procedure that has come unwrapped.

As promised, the life of a transplant patient is still an exciting one!  But the Lord still leads and I’m still amazed!

For those of you from Dr. Kendall’s seminar that are reading this, thank you.  Thank you for your encouragement, your prayers and your love!  Hope to connect with you again soon!

I’ll be back to post an update in about a month or so.

Soli Deo Gloria

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

The Health Journey Continues

I’ll be heading to Duke Medical Center again this week, mainly for followup to the recent episodes of rejection following my 2008 double-lung transplant.  Rejection has been a common theme throughout my health journey.  Not sure if this is just another “bump in the road” or something more significant.  I never know until they have done all the testing, poking and prodding they do each time I visit.

Lately though, I have not been feeling great.  I know something is going on but not sure what.  I’ve been having issues I’ve never had before.  In early September I had the second of two Solumedrol infusions within less than two months of each other, and don’t think I’ve bounced back from those.  In case you don’t know, Solumedrol is an infusion (IV) of 1500mg of Prednisone spread out over three days.  (500mg per day)  It REALLY can affect you in some not so pleasant ways, although my body usually bounces back fairly quick.  Not so much this time.

So, off to Duke I go this week to what’s in store.  Each time I go, I’m reminded just how fragile this life I now live really is.  But I am grateful for the time the Lord has given me up to now.  Borrowed time that I didn’t deserve, yet God, in His mercy and grace, has allowed.

Grateful for this journey!

Remebering When…a Day In the Life

I was admitted to the hospital last Friday due to yet another pneumothorax, or in layman’s terms, a collapsed lung, ugh.  After more than four of these, you’d think I’d be used it!  So, after a chest tube and two days in the hospital it has re-inflated, and I’m good to go, with one exception, I was also diagnosed with RSV (Respiratory Syncytial Virus) AND still tested positive for Type-A Influenza.

I started treatments which have prolonged my stay in the hospital for 5 more days! Yippee!  I’m thankful though, had I not been admitted last Friday chances are I would have turned right around and driven four hours back to be re-admitted on Sunday.  So, it was very providential that I had a collapsed lung!

While in the hospital in the Pulmonary Unit, you are encouraged to walk as much as you can.  Today I walked a mile and I’m going for more tomorrow.  As a lung transplant patient, you are VERY grateful that you can!  However, this unit has pulmonary patients that are in various stages of health.  Some are waiting on a lung transplant, some are post-transplant and others are freshly out of ICU following transplant, and have been moved to this unit, which also serves as a step-down unit.  Then there are those of us dealing with rejection issues, and other issues, that need treatment, like me.

As I walked the halls today I saw folks struggling just to take a few steps.  Some were old, some were really young.  Most were on oxygen to some degree.  Everyone I saw caused my mind to flash back to my days before and immediately after my double-lung transplant in July 2008.

If you’ve never struggled to breathe you probably can’t relate to what someone whose lung function is severely compromised is going through.  Let me just say, you feel like you are suffocating.  Or perhaps drowning.  It robs you of energy, stamina and strength.  You constantly feel like you might die from whatever is going on.  You gasp for breath with every step.

I remember fighting to take a walk around the hallway right after transplant.  You use a walker, or a rolling walker, you might be on oxygen. You have multiple chest tubes hanging out of you.  You feel very fragile with each step.  You have to make your body press on.  Everything in your mind is screaming, “I can’t do this!”  Everything in your heart desperately wants to keep going.

What I took away from seeing these patients in various stages of their journey is this; I will NEVER take for granted how far the Lord has allowed me to come in the past 5 plus years. It brought back SO many memories, and here are just a few.

I can remember struggling just to get dressed.

I can remember thinking, “There is no way I can even walk today.”

I remember the hot summer, and how it robbed you of even more oxygen.

I remember struggling for air just to eat a meal.

I remember the only comfort came when I was lying in bed, being still.

I remember constantly being on oxygen.

I remember dreaming that I was running, or hiking, or doing normal daily activities.  Then I would wake up to reality.

I remember wondering if the pager was EVER going to go off with the news that it was my turn!

But the best part is, I remember the day we received “the call” that there were, as the hospital put it, “A pair of beautiful lungs for me,” and that it was time to come in for surgery.

Every now and then, different parts of the journey flash across my mind.  Today was one of those days.

Today, I remembered, and was humbled yet again.

Need To Breathe

It has almost been a week since I returned from Duke following a 5-day infusion for this latest round of rejection. The doctor originally labeled it an A-1 rejection, which is fairly low-level, but rejection nonetheless.

Everything went extremely well with the infusion! No violent reaction, only a mild headache the first day. Which is a LOT to be thankful for considering I had severe flu-like symptoms with the previous round of this infusion in 2010. The docs chose a 5-day infusion instead of three this time since this was the second round in two years.

So, there will again have to be two clear bronchoscopies in a row, with a biopsy, before the docs will render a “no rejection” status.

I am thankful for the prayers, and grateful that all the rejection to this point has been the treatable type.

I’ll be back with another health update when there is new news. In the meantime, trying to gain strength, get blood work done each week and staying away from germs!

A Not So Subtle Reminder

On July 5 of this year, just two days after my four-year transplant anniversary I had a bronchoscopy.  About a week later came the news of the fact that I was in rejection, again.  While it has been two years since my last bought of rejection just hearing the words, “You’re in rejection,” was a not so subtle reminder of the fact that my life really is fragile.  I know this all too well this side of transplant, but during the “in-between times” it’s easy to start feeling invincible, or at least think you are.

I had another treatment to try to break this rejection cycle about a month ago, but a bronchoscopy just four days ago revealed that the rejection was still present.  So, off to Duke I’ll go for a week-long heavy-duty infusion that hopefully accomplish the task of breaking the rejection cycle.  I’ll be admitted for a five-day stay at Duke Medical Center starting Wednesday, August 22.  Looking forward to the yummy hospital food and soft cozy beds!

It’s probably not a bad thing that every once in a while I’m reminded of just how precious this gift of life is and that there are NO guarantees, especially this side of eternity.  It helps me refocus on priorities and really helps me think about the fact that I really need to be more purposed in the way I live this “new” life I’ve been given.

A couple of poignant Scriptures:

James 4:14, “Why, you do not even know what will happen tomorrow.  What is your life?  You are a mist that appears for a little while and then vanishes.”  (NIV)

Job 33:4, “The Spirit of God has made me; the breath of the Almighty gives me life.”  (NIV)

Here We Go Again…

Had my bronchoscopy at Duke this past Thursday, and thanks to a good friend, made it there and home again without incident…so I thought.

On Friday evening I get an email from one of Lung Transplant coordinators and she conveyed the news to me that I have a mild case of rejection.  I knew that things weren’t quite right, because during the clinic visit my Pulmonary Function Tests were down 6%.  I was attributing it to a bit of chest congestion I had been experiencing, but alas, twas not the case.  And, on top of the rejection, some of the airways in my right lung were showing stenosis, or a narrowing of the airways.

I say here we go again, because I’ve been through this before, and will follow the same treatments as before for both of these.  But even though I’ve traveled this path several times, it’s still a bit sobering when you realize how fragile things can be at times.  Sure, I know God is in total control of ALL things and again, none of this caught Him by surprise, but you still have a sense of helplessness sweep over you when you hear the words, “You’re having rejection.”

So, I look at it as another opportunity to trust.  Another opportunity to reaffirm the work God is doing in my life.  Another opportunity to know that He is still on His throne.  Another opportunity to draw closer to Him. Another opportunity to know that in the midst of trials and suffering, He is still completing His work in me.

So yes, here we go again, but the journey has never really ended!

The Breath Of Life

Job 33:4 says, “The spirit of God has made me, and the breath of the Almighty gives me life.”  (NASB)

Four years ago today, and about this time of day, I came out of surgery after having received my second gift of life in the form of a brand new set of lungs.  After a little over 8 hours in surgery, and following 4 months and 3 days of waiting, and a LOT of prayers, I was on my way to breathing again!

I think about the donor family a lot this time of year, and other times through the year as well.  Especially now do I think about their loss and wonder if they ever wonder about the people who received their loved ones organs.  For me, I would be very interested in knowing.  About two years ago I wrote them, not directly, the communication had to go through Tennessee Donor Services.  Once you send off the letter, you can only wait.  I still don’t know them, or haven’t heard from them, but now, they know me.  At least they know how grateful I am for their sacrifice and generous giving, and how sorry I am for their loss.

I am grateful first of all to our loving Heavenly Father for this gift and for the grace to live each day.  I am also thankful for my family who has shown unending love and support for me, as well as walking by my side EVERY step of the way.  My wife Sandy went through just as much as I did during my illness and surgery, well maybe minus the cutting part.  She carried the load of being mother, wife and caregiver for a good part of 2 years, and continues to do so.  She is amazing and God certainly knew what He was doing when he allowed me to marry her!  Our daughters have been through so much emotionally and mentally but have always been encouraging to me and my wife and have stepped up so many times to fill in the gap and help both of us with whatever needed to be done during this journey.  I love them very much!

I am also grateful and thankful for the medical teams both at Vanderbilt and now Duke.  The transplant doctors, the PA’s, the nurses, the pulmonologists, the radiology staff and the medical secretaries have ALL done their jobs with amazing skill and expertise.

God certainly does work ALL things together for good for those who love Him and are called according to His purpose!  (Romans 8:28) I am still overwhelmed at the fact He would allow me to be the beneficiary of His goodness and grace, and grant me the breath of life!

As Time Goes By…

Once again the “time monster” has stolen away my blogging efforts!

I can’t believe how long it has been between efforts, but here goes an effort at least!

So here’s the latest:

  • I arrived safely home from my Middle East trip, and what an adventure it was!  I’m going to have to upgrade my WordPress account so I can post pictures and maybe videos soon.  It was an amazing experience!  I still can’t fully disclose where we were because we might be returning, but some of you may know from Facebook and emails. I ask you to please keep that information to yourself.  This sounds more covert than it should, but I’ve been asked to be careful due to our travel itinerary.
  • We had a full 10 days with our friends in Palestine and Israel and like I said, hope to return in the near future.  Both the flight over and the flight back were very smooth, and even early in arriving!  Can’t say so much about the domestic end of things.  My connecting flight was cancelled on the return home due to weather, which wasn’t so bad.  However, not much help from the airline in getting home, so $150.00 and 8 hours later, I finally got a flight, ugh.  I guess times are too hard for the airline industry to help cover your expenses!
  • Life since arrival back on May 30 has been hectic.  Let’s see, another Hymn Sing at The Cove here in Asheville, two weddings, our 28th anniversary, the 2012 Composer’s Symposium in Atlanta, an album release concert for a friend in Tennessee and to top it all off, our minister of music is resigning and I’ve been asked to help facilitate the interim period!
  • I’m grateful to the Lord for continued health and the ability to keep up what lately feels like a full-time job!  Although, I’ve had to take some down time recently to avoid sickness.  I travel to Duke on July 5 for my 4 year anniversary check-up!  I’ll share details about that soon!

Thank you for following/reading, or maybe discovering, my blog!  I am blessed, humbled and grateful and still trying to live for Christ in this messed up human shell!