Take a Deep Breath

It has been quite a while since I’ve given a health update, so here it goes.

On Monday, April 16 I traveled to Duke for a Clinic visit, which included a chest X-ray, labs, Pulmonary Function Tests and a visit with the doctor.  I am grateful to announce that all is well after almost 4 years!

My pulmonary function was up 8%, which up is always a great thing!  Labs were normal, at least something about me is right now! And the X-ray was clear!

We continue to be grateful for the way the Lord has taken care of us through all of this journey and yes, it continues to be a journey with challenges both big and small.  But I’ve been reminded in the last several weeks of this passage which pretty well sums up all God can do!

20  “Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21  to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.” (Ephesians 3:20-21 ESV)

I realize this verse is not just speaking of physical things but of the supernatural and spiritual as well, but what a promise to know that God’s power is continually at work within those who believe in Him and call on His name!  And the great news too is that it goes on generation after generation in fact, forever!  And forever is a pretty long time!

So yes, I do take a deep breath, and breathe a silent prayer of gratitude for all He has done in my life!  And boy am I thankful I can!

What’s Going On?

This is a quick update concerning the latest that has been going on with me. I’ll share a more detailed report soon, and there is a LOT more to share, but for now, this will have to do.

I had a comprehensive check-up at Duke on Monday, December 5 and the results were great! No rejection! And so far, nothing has shown up in any of the cultures. I am very humbled and grateful once again that the Lord has sustained me to this point. Still wrestling with skin cancer places that pop up on me due to the immuno suppression, but that’s just part of this journey. So far, they have all been Basal Cell, so that’s good news!

A lot is going on in the area of music and I am grateful for the opportunities the Lord keeps affording me. One biggie is that NorthStar Music Group should be launching its new website in late January. We are currently creating content, etc. and deciding what products will go up immediately as well as developing other products along the way. I’m quickly, or maybe slowly, realizing that having a website and putting one together, is a LOT of work!  Hopefully, it will be well worth it heading into 2012 and beyond as the Lord allows.

2012 will be an interesting year so I ask for your prayers for our family, the business and my health. I have SO many friends who are also hurting right now that I am praying for.  Life is fragile, and that is becoming more and more evident the longer I live. I’ll be 51 this year and as an aside, my adoptive father died at the age of 51.  So reaching this age, and considering my health issues at the same time,  is creating a mixed bag of emotion.  A lot of introspection and thought has been given to what has transpired over the past 4 years. To say emotions of every kind well up within me each time I consider things would be a HUGE understatement!

Okay, more later and hopefully, more detail too.

You are loved!

Something Old, Something New

This past week I was at The Cove in Asheville, NC, the Billy Graham Training Center, serving as worship accompanist for one of Bible Intensives.  The “old” part was being at The Cove, although it never gets old!  The “new” part was the speaker, Dr. Walter C. Kaiser and his teaching on the book of Daniel, a book that most of us, if we were really honest, would confess we don’t understand.  However, Dr. Kaiser brought us all a little closer to understanding this amazing book of the Bible and not only that, brought each of us into a closer relationship with our Heavenly Father.

The other “new” part and one of the wonderful benefits of being able to serve at The Cove while being a part of these seminars are the people you get to interact with.  I am grateful to God for the many conversations I’m able to have at these conferences with some precious, precious people.  To be able to hear their stories and struggles in life and learn about them as a person.  It is something that connects you with them on a such a deep level and then you quickly realize, you’re not the only one that has trials and tribulations in this world.  There is also the paradigm of seeing how connected we are as believers in the Body of Christ.  The Church is more than just the local body of believers that we are a part of each week and these events help me see that so clearly.

I’m grateful to the Lord for the health I’m enjoying right now and being able to attend and serve at these conferences. I love the fact that both the “old” and the “new” collide at these events and through that collision, I am the one who is always blessed.

Thank you Father for you continued faithfulness and love!

And the verdict is…

After a couple of days of waiting and admittedly, a little bit anxious, at least in the sense of trying to gear up for what might be “next,” we finally have news from Duke!   And the verdict is, good news!

NO rejection and NO infection!  Praise the Lord for his continuing watchcare!  A big thank you to so many of you who have been praying.  God does still answer prayer and He has seen us through this little setback.  I know there will be more issues in the future, but I keep trusting in Him no matter what happens.  I was ready for the worse case scenario but He allowed us a reprieve this time. 

As Job says,  “Shall we indeed accept good from God and not accept adversity?” Job 2:10b (excerpt)

And to quote Matt Redman’s song, which is also from Job;

“You give and take away, You give and take away, My heart will choose to say, Lord, blessed be Your name.”

While I most certainly thank the Lord for His blessings, I also realize that no matter what I receive from His hand, He is still the same.  His love doesn’t waver, He is still sovereign over EVERY circumstance, and His mercies are new EVERY morning!

Truly we can “Blessed Be the Name Of the Lord” regardless of whether it’s “good news” or “bad news.”

No News Is Good News?

I have really had no news to share concerning my health in the past several months and as the old maxim goes, “No news is good news,” or is it?  I certainly thought so, until the past week.

So, here’s the short health update. 

I was pretty sick a few weeks ago, but things have improved over the past week or so.  However, I have a cough and some chest congestion that just won’t go away.  So Thursday, May 19 I had an already scheduled appointment at Duke dermatology and while there, made a quick trip to clinic for lab work and a chest X-ray.

One week later, Duke called and said we want you back for a CT scan, ugh.  So, back to Duke today, Friday, May 27 for a CT scan.

On the way back home from the CT scan, the transplant coordinator called and said they want me back on Tuesday, May 31 for a bronchoscopy.  In her words my broncoscopy was, “Crappy.”  Not exactly the medical terminology I was hoping to hear.

I haven’t had a bronchoscopy since October of 2010.  I’m scheduled for one as a part of my annual check-up on June 27, but it looks like that’s getting moved up.  The scheduled bronchoscopy for June 27 is just one week prior to my 3-year transplant anniversary!  Praise the Lord!

So, here’s the bottom line.  Three possible scenarios exist at this point:

1)  I have been aspirating into my lungs and therefore possibly triggering an infection or rejection.

2)  There is already infection present from being sick earlier.

3)  The “unfun” option, is that rejection is back.

I’ll know which door the diagnosis is behind on Wednesday, June 1, I hope.  Maybe then “no news” will be good news!

Still trusting in God’s perfect plan for my life!

Gilligan’s Island Revisited

If you’re old enough, and maybe if you’re not, you remember the TV sitcom Gilligan’s Island, and how their little boat set sail for what its passengers thought was going to be a three-hour tour.   Of course, we all know how it turned out, they all wound up being castaways on a small deserted island.  Each week the show’s theme song began with these lyrics, “Just sit right back and you’ll hear a tale, a tale of a fateful trip…” Well, for me my trip to Duke last week wasn’t from a tropic port or aboard a tiny ship, but it was nevertheless fateful, eventful and pivotal!

What started out as a planned one day visit to Duke for some issues I was having turned into a 6-day hospital stay with multiple tests and new drugs!  I’ve finally come to the point where I always pack an overnight bag when I go because you just never know.  But this time, I ran out of clothes!  However, some precious friends came to my rescue and brought me some much-needed clothing articles!  Duke even let me have a pass to go to another doctor’s visit off-campus and I made a Target run to supplement too!  Who knew that going to Target could be SO liberating!

Now on to the “what’s happening” part of this blog/update.

Following yet another bronchoscopy on Friday, September 3, I started having some shortness of breath and thought I was experiencing another collapsed lung episode.  Since it was Labor Day weekend I endured it and hoped and prayed it would get better.  By Sunday, it hadn’t.  In fact, I didn’t even make it to church that day.  We called Duke and the local pulmonary doctor here, and on Tuesday night after Labor Day went to the hospital for an X-ray.  The good news, no collapsed lung.  The bad news, I still didn’t feel well.  By that point I had begun to have a pretty significant cough that I couldn’t shake.

So, Duke had me come over on Thursday, September 9 for labs, X-ray and clinic just to check some things out.  Yeah, right.  I was admitted that evening “for a few days.”  You know, I’ve learned some things about hospital lingo.  Whenever they say to you, “we just want to keep you for a few days,” what they’re really saying is, “you belong to us for an indefinite period of time!”  And whenever they tell you, “the doctor will be here shortly,” what they’re really saying is, “plan to be waiting for hours!”  And if they give you a time for a test or procedure, it’s really just an arbitrary guess within a 24-hour period.

I truly believe we have another time-zone that doesn’t get a lot of press.  Along with EST, CST, MST, PST and others, we now have HST (Hospital Standard Time)  which doesn’t exist on any kind of time-continuum!

Okay, sorry for the diversion, where were we?  Oh yeah, I was admitted on Thursday night.  Had a CT scan that night, around midnight, another bronchoscopy on Friday and a blood culture on Friday night.  The doctors were suspecting an infection so I began a round of 2 IV antibiotics along with the current IV I’m on.  More fun!

The docs were also concerned about some “irregularities” in my chest X-ray and were treating me for some possible pneumonia as well.  The CT scan did reveal a very small pneumothorax, although the lung wasn’t collapsed.  They felt like it was air in the subcutaneous tissue.  That is the tissue between the skin and the muscle, like where your fat hangs out.  No real concern, they feel like it will heal on its own.

While in the hospital, they also informed me that my white blood cell count was very low due to some of the meds I’m on.  So, they have begun a round of Neupogen injections (Sandy loves this part!) to help bring that up.  Could explain why I’ve been pretty tired lately too.

Against the backdrop of ALL of that there is some very exciting news.  So far, the results from the last two bronchoscopies have shown NO more rejection!!  Praise God from Whom all blessings flow!  I think they will have to have one more bronchoscopy result before that is 100% confirmed, but they feel pretty confident that has been brought under control!

That’s about it for now.  As always, your prayers and encouragement mean SO much to me and my family!

God is sovereign and still in control of each and every part of what is going on throughout this journey!  And above all, I’m still very grateful and blessed to have the life the Lord has given me and to have the ability to work and minister to others all for His glory!

I’m thankful that the Skipper of my tiny ship is brave and sure and a very present help in times of trouble!

Less Rejected, More Detected!

Not sure why I feel like my heading must rhyme, but it’s fun!

Well, here’s an update on my health to this point.  The good news?  The rejection level has dropped from an A-3 to an A-1 over the past several months!  Praise the Lord!  The highest rejection level there is, for acute rejection, is an A-4.  So this is VERY significant in the grand scheme of things.  It also means that the rejection is still treatable and reversible.  Another praise the Lord!

However, at the same time they have found some other “issues” along the way that we are now dealing with.  If you’re old enough, you probably remember the old Saturday Night Live sketch with Rosanne Roasnnadanna.  She was always closing out her rambling, non-sensical, monologue by saying, “It’s always something!”  That’s kind of how I feel with the things that keep popping up health-wise.  One of the doctors at Duke put it this way, “you seem to have a lot of loose ends.”  That may be true, but we’re praying they all get tied up real soon!

What are the “loose ends?”  Two main ones are a fungus that has grown out since my last bronchoscopy.  The other is some kind of Antibody that has now shown up in my lungs.  I’ve begun a new medicine, well actually a return to an old med I was off of, for the fungus.  For the Antibody situation, I have begun a series of infusions that we’re not really sure how long will last.

Duke is still looking at doing the “big gun” IV that will zero out all of my CD4 T-Cells.  Which basically means my immune system will be reset, or zeroed out.  They are waiting until after my August bronchoscopy to make that call though.  They can’t do the IV with the fungus situation because that be like putting Miracle Grow on the fungus, not a good thing.  I’m praying that there will be ON more rejection in the August bronch and we’ll be able to avoid this IV treatment.  That would be my ultimate answered prayer at this point!

That’s about it for now.  Even through the monotony of health issues it’s sometimes hard to keep thinking all is well.  But we know that the same God who has brought us this far is still in charge and in control of what is going on now!  God is sovereign in ALL circumstances, good and bad.  We must continue to learn to trust.  After all, we’re human and most of us have short attention spans!  I know I do!

Thanks for reading this post, I think it’s one of my shorter ones.

Isaiah 41:10

2 Lungs, 2 Years and 2 Transplant Centers

This is the year of “2’s” for me.  Saturday, July 3 will be the 2nd anniversary of my double-lung transplant, and over the course of the last two years, I have been seen at two different Transplant Centers!  Never thought I’d be expressing the 2nd anniversary of God’s provision in this way but it has definitely been “2” good “2” be true!  (Sorry, couldn’t help myself)

This year has definitely been an interesting one with some new challenges, but overall I know the Lord is sovereign and still in complete control.  He is constantly directing my path and continues to amaze me with His grace!

There is some of this journey I’m still trying to figure out and definitely feel like I’m just along for the ride some of the time, well okay, most of the time, but I wouldn’t trade ANY of it for the world!  I can say, with absolute certainty, with the Psalmist, “It is good for me that I have been afflicted,
that I may learn Your statutes.” Psalm 119:71 (NKJ)

Saying that it has been good for me that I’ve had this illness may sound like insanity to some, but if you’ve ever walked through a life-threatening event you know that it is definitely a life-changing event.  There are SO many things the Lord has shown me and taught me along the way.  Scripture has come alive like never before.  The little things I used to take for granted mean so much.  Slowly, but surely, the Lord is shifting my priorities.  It’s a long process, after all I’m human, but I sense that the Holy Spirit is reshaping my thoughts and my desires.  That’s been my prayer and again, it’s a long process and I’m a slow learner, but there has definitely begun to be a shift along those lines in my life.

As I reflect back over the past two years lots of moments and memories flood my mind.  My wife and daughters continue to be such a vital support system to me.  The Lord has blessed us with a wonderful church family that has accepted us, prayed for us, and loves us.  I think back to the “the call” to come to the hospital for my surgery.  I think about the times in the hospital and the following weeks of rehab.  There are many times when I flash back to the waiting period and I get glimpses of so much that happened during that time.  I think about how sick I was prior to the transplant and the fact that there were days I thought I wouldn’t make it to my 48th birthday.

Sometimes these thoughts and reflections, and many, many others, make me weep but mostly they fill my heart and soul with unending gratitude to God for everything He has done.  I can’t escape the continuing expression of thanksgiving to the Lord that I have.

My prayer has been, and continues to be, that I’ll not waste one second of the new life He has given me!  Is it hard sometimes?  Absolutely.  Do I still have physical struggles?  You bet.  Are there days when I’m not very grateful?  Sure.  But my eyes are still fixed on the goal of continuing to serve my Savior and use the talent, gifts and abilities He has given me to their full for His glory alone!

Even though I’ve shared this before, I want to close with what I continue to call the “Psalm of my healing.”  I read this passage over and over again while I was waiting for my transplant and God burned into my heart as His promised directed to me.  My prayer and hope is that my life will continue to be one that reflects His glory and tells His story.  His story of healing, hope and help.  I pray that through whatever time I have left on this earth I’ll be able to lead others to Christ as this story is shared.

“I waited patiently for the Lord to help me, and he turned to me and heard my cry.  He lifted me out of the pit of despair, out of the mud and the mire.  He set my feet on solid ground and steadied me as I walked along.  He has given me a new song to sing (or play), a hymn of praise to our God.  Many will see what he has done and be amazed.  They will put their trust in the Lord.” Psalm 40:1-3 NLT (emphasis added)

Feeling a Little Rejected

In the past few months life with a double-lung transplant has been a little bumpy for me.

It all started back in March when after a routine bronchoscopy, which if you don’t know what that is, it is a procedure where a fiber-optic instrument is passed into the windpipe in order to view the bronchi in your lungs.  While the doctor is in there they do other things too, like take tissue samples (biopsies) and put in a small amount of fluid, I know it sounds weird to introduce fluid into your lungs, but it’s a very small amount, but then they withdraw it and send it off, along with the biopsied tissue, to run various tests.

Following my March bronchoscopy, I wound up in the hospital with a Pneumo-Thorax, a.k.a a collapsed lung. While it is one of the risks of a bronchoscopy, it usually doesn’t happen, very small percentage, but I guess I’m “special,” because it happened to me.  I was admitted to the hospital the day after the bronchoscopy and a small chest tube was inserted to re-inflate the lung.  While in the hospital here in Asheville, the lab results from the bronch came back and it was also confirmed that I was in what is called acute rejection, level A3.

There are basically two kinds of rejection for transplant patients, acute and chronic.  Acute rejection is treatable and reversible.  Chronic rejection is kind of like the wear on your tires, it’s not reversible but you can do things to keep the “wear” from getting worse.  So, while in the hospital for the collapsed lung they started 3-days of high doses of Prednisone called Solu-Medrol.  This is basically 500mg of Prednisone given each day for three days.  Usually the first-line of treatment for acute rejection.

I traveled back to Duke in April for a follow-up bronch to see if the treatment had lessened the rejection.  It had but only by one level, so I was now at level A2.

Duke then told me that I would need to come back to them for a more intense treatment this time which would wind up involving a 6 day stay in the hospital.  This treatment, called RAT-G, basically took my immune system down to a low-level in order to try to break the cycle of rejection.  Believe me when I say it wasn’t fun.  Most people have very bad flu-like symptoms as side-effects during this 3 day treatment.  Me, the first day my blood pressure plummeted, my fever spiked to around 104, and other issues crept in.  So, they waited a day in between the first and last two treatments to let my body recoup.  The 2nd and 3rd days went much, much better and I was able to tolerate them very well.

Following the RAT-G, it took me about 3 weeks to feel like a human again.  Duke sent me home with a 3 week follow-up IV. Energy finally began to come back, although slowly, and I was eventually able to stop avoiding people and germs.  Not necessarily in that order!

So, fast forward to early May.  I’m back at Duke for another bronchoscopy to see if the RAT-G did its job.  Well, the rejection is still at A2, ugh.  I’m feeling good, my Pulmonary Function Tests have been good, they even came up 3 points from the last time, but now Duke wants to be even more aggressive with treatments, as if that’s possible!

It’s now a 3-step plan.  Step one, more Solu-Medrol, which I’ve completed, step two, surgery to prevent acid reflux, step three, an even more intense treatment that will basically zero out my immune system for a while, kind of like hitting reset on your computer or electronic devices.  Then, more tests and prayer that the cycle of rejection will be broken.

I’ve said all along, my time on this earth, and for that matter your time, has already been allotted to us.  Our days have been numbered since the beginning of time.  As Jesus said in Matthew 6:27, “Who of you by worrying can add a single hour to his life ?”  And as Job states in Job 14:5, “You (LORD) have decided the length of our lives.  You know how many months we will live, and we are not given a minute longer.” (emphasis added)

So am I worried, not a bit!  On the worrying scale of 10 I’m at 0!  I’ve already been given a second chance at life, first spiritually and now physically.  Is this the end, or the beginning of it?  The doctors don’t know, I don’t know and you don’t know.  It’s in the Lord’s hands only, and that’s the ONLY place I want to be!