One of our spots!

One of our spots!
Oregon Coast 2016

Sunday, January 22, 2017

"363" - A Dose of Reality!

In preparation for my pre-transplant evaluation coming up in 5 weeks, I was doing some research this morning to further acquaint myself with the multi-step process. I was gathering more info related to the organ donation process, since my life will depend (and be extended) on another human losing their life. Sobering thought.

"UNOS" is the United Network for Organ Sharing - the network that is responsible for matching and distributing ALL organ donations (kidney, heart, lung, etc.). On their extensive website, there are six "calculators" - designed to determine things like life expectancies with certain diseases, urgency/need for organ transplants, etc. One of the calculators is called the "LAS" Calculator - or Lung Allocation Score. This calculator, while not ultimately conclusive, give a rough (emphasis on rough) estimate on one's life expectancy - based on several factors (age, type of lung disease, current lung function and capacity, etc.). The calculator spits out three numbers: an LAS score, a "Waitlist Urgency Measure", and a "Post-Transplant Survival Measure".
The one that stood out to me was the Waitlist Urgency Measure. This score is given in the number of days the patient is currently expected to live if NO transplant occurs during that time span.
Mine was "363".
That's how many days I am currently expected to live if I don't get a transplant.

Now, granted, it's just a tool to help determine the urgency/need for the operation - and there were several factors that were averaged by the calculator. They emphasise that it is NOT definitive - just a "ballpark" figure. Each individual is different, and can actually change daily, based on one's current situation (I could get a bad cold, pneumonia, etc.).

I know my days are numbered (all of ours are!) - but to actually see a number of potential days quite the reality check!
I have very well-meaning and lovely people ask me (and my family) how I'm doing, and hoping for an answer that indicates I'm getting better. The fact is, I will never get better - I am getting worse, albeit slowly (for now).

Getting a transplant doesn't mean my life will get back to "normal", but most likely it will extend my life and allow me to breathe better. Once I have the operation, I will be on over 12 medications that will majorly suppress my immune system - for the rest of my life. I will ALWAYS have to be careful and protect myself (wearing masks, staying away from crowds and people that are sick). But I will be ALIVE and, hopefully, able to continue life with my wife, travel, ministry, music, grandparenting, etc.!

That's the goal. That's the purpose of going forward - making the most of whatever time I have left.
Whether I have 363 days or 3630 (or more!), I will strive to make the most of them!

Thursday, January 12, 2017

Heard from the scheduler at UCLA's transplant center today (1/10/17)!
I'll be going down the last week of February / first week of March for several tests and interviews. The transplant team (at least 8-9 people) meets weekly to discuss transplant candidates and prioritize their list placement.
So, shortly after my visit I will know whether I need to relocate to Los Angeles (temporarily), or whether they want me to wait in Oregon. Either way, we should know in a few weeks!
Once I get listed, then it becomes a waiting game until donor lungs (that are a match for me) become available.  Could be weeks, could be months. We're praying for sooner!
Thanks to all for the prayers, encouragement and financial support!
The RedBasket campaign (fundraising) ends February 12th.
Please check it out if you haven't already...we're already at 71% of the target!

Monday, March 14, 2016

“The Talk” - March 14, 2016

Having a terminal/fatal disease affects not just the one with the disease, but spouses, family, friends, coworkers, etc.
Since I have put my faith and trust in the One who foretold of his death & resurrection - AND THEN IT HAPPENED JUST AS HE SAID! - I believe that my future home (and ultimate destination) is heaven.
As the apostle Paul stated, it is better by far to be with Jesus (in heaven) - so I’ll be just fine! J
It’s my wife and family’s loss that grieves me now.
Since my condition is progressive, I will never get better. A double-lung transplant is the only medical option for living longer.

This weighs heavy on my wife.
She knows me so well that she can tell when I’m ‘doing worse’ - even when I don’t necessarily notice.
She believes I’m worse today than I was a month ago. I have a CT scan and other pulmonary function tests coming up in a couple weeks, so we’ll have more of a definitive outlook after we get the results.
But this prompted “the talk”…the conversation that needs to take place regarding what happens “IF” I don’t survive. Finances, other logistics, what do I want my memorial service to be like?, etc.
You see, while I’ll be rejoicing in heaven, my wife (and family) will be struggling with life without a “Boppy” in it. J
Having lost my Dad 18 months ago, I can relate to the loss…but I’ve never lost a spouse.
It’s difficult for me to imagine losing my wife. In our almost 14 years together, we have done so much.  We’ve been to Africa (5 times!), Russia (Moscow & Siberia), Italy (Milan, Verona & Rome), London (3 times), Paris, Amsterdam, Honduras, Canada (Banff, Lake Louise), an Alaska cruise, Hawaii, NYC, Philly, New Orleans, D.C., and many other wonderful places! We’ve lived many lifetimes over in just a few short years.
I can’t imagine living without my soul mate! 

She will need prayer, encouragement and moral support once I’m gone. 

BUT - I’m not giving up hope! Hope for healing, hope for a transplant, hope for a long life ahead with my incredible wife! In fact, our goal is to be married longer than we were to our previous spouses…so I plan to be around at least another 8 years!

Thursday, February 18, 2016

One Year...and counting!
It was one year ago today (February 18, 2015) that I was driving two of my granddaughters to my house to watch them while mommy was working.
During the 12-minute drive to my house I received a phone call from my doctor. He apologized for having to call me directly, but he had urgent news - and told me that tests confirmed I had IPF; Idiopathic Pulmonary Fibrosis. This was something he (and a pulmonologist) had hoped would not be the case - mostly because it is 100% fatal (no cure).
I was numb, but trying to stay positive for my granddaughters (they heard the conversation on speaker phone since I was driving).
I called my wife immediately, and she was also stunned.
It made sense (the diagnosis), but I was in denial.
That evening, and for several days after, we did a lot of online searching for info about the disease. It's all bad news...and the typical life expectancy is 2-4 years after diagnosis. Obviously, averages have highs and lows figured in - I could live another 10+ years, or much less.
Pretty sobering! Yet, we are not wallowing in misery!
So, one year later, I have less time left. Technically, we ALL do!
Even with a double lung transplant (the only 'cure'), the post-op life expectancy isn't that great.
Do I believe God can totally heal me? Absolutely!
Do I believe God can find me the perfect donor match? Absolutely!
What if God calls me home before either of the above happens? Either way it's a win-win situation for me!
I will strive to make the most of every opportunity God gives me, and make the most of the time I DO have with my family and friends.
After all, this world is not my home, I'm just a-passin' through!

Monday, February 1, 2016

Discovering My Limits
As many of you know, Debbie & I recently returned from a 2-week short-term mission trip to Italy. My pulmonologist had given me the green light to go, so I took my portable oxygen concentrator, pre-arranged wheelchair assistance at all of our airport stops, and away we went. 
We typically have gone to Africa (5 times now), but due to my health condition (lung disease), it is too risky for me to be where access to clean water and protection from many forms of illness would be compromised.  We still have a deep-rooted love for Uganda, but we’ll have to wait until after I get a lung transplant to even consider going back.
In Italy, we were part of a small team (7 from the US) that helped several local Italian worship leaders and missionaries.  We conducted a worship conference in Milan, helped install a new sound system in a church in Verona, played worship concerts in a few churches, and met several new friends and ministry partners. We were able to encourage and pray for many who are faithfully serving God.  And as a bonus, we were able to experience amazing food, incredible coffee, and see some of the fantastic sights Italy has to offer (Lago Maggiore, Verona, Rome, Tuscany region, etc.)
Two dear Italian friends, Davide & Lara, were our hosts & tour guides. Davide is a talented young man who we have known for a few years now. Lara is a good friend of Davide’s and has been a part of his father’s church for several years (Davide’s dad is a pastor). We consider Lara and Davide our surrogate children!
It is typical that when we go to other places around the world to help and bless others, we get doubly blessed in the process…and this trip was no exception!
There were at least two occasions when the congregation where we were serving spent time praying for me – surrounding me and laying hands on me. I was humbled and honored. To be surrounded by several people praying in Italian and touching/hugging me is simply incredible. I will never forget it!
As awesome and amazing this trip was, I was hit with the hard reality of my deteriorating health. Not only did I discover my physical limits, a couple of times I went beyond them – and suffered for it. The suffering was temporary, but it did make things even more real for me.  In Verona (our favorite place on this trip!), we did quite a bit of walking. Even though I had my oxygen and walked slowly, I found a couple of times that I just couldn’t keep up. It was very frustrating for me – and the distances weren’t that far! Another factor was the cold. Milan and Verona are essentially the same latitude as Maine, and the temperatures were quite cold (the you-can-see-your-breath cold). Even though I wore a scarf or a ski mask, it was still too cold for my lungs.
So, when we got to Rome for our second week, our dear “children” Davide & Lara decided to rent a wheelchair for our tourist day in Rome. It was actually a very good idea, but it was difficult for me to accept the fact that I needed it. I was gracious, and tried to make light of the situation, but it still felt very weird. I am not the kind of person who accepts help very well – I am a “Steve do it” kinda guy. But this time I had to swallow my pride and accept the help. It was most frustrating in the subway/train station (see photo). Several stations have elevators, but this particular station did not. It had one of those slow-moving wheelchair lifts that follow the handrail of the stairway. And to make matters worse, this particular lift had some electrical difficulties, so it took several minutes for the attendant to get the required “fix” to make it work. Meanwhile our team was waiting patiently (while I was deeply embarrassed on the inside). I tried to make light of it when it finally worked – doing my best “parade wave” with a smile…even though the lift was traveling at about 1 foot per minute.  Once we finally got to the street level, Davide and Michael took turns pushing me through the cobblestone streets around the Coliseum and other sites in that area. They were happy to do it, but I still felt less human somehow.
The attention on me shifted to my wife that afternoon when Debbie tripped on the uneven cobblestones and took a big fall right on the street. Fortunately, there “just happened” to be an ER nurse from England that came right over and tended to Debbie’s injuries – making sure her vitals were OK before she got up. We then put Debbie in the wheelchair for the rest of the day.  Her knees and wrist are still bruised and sore, but she’s recovering OK!
All in all the trip was incredible, and we can’t wait to return – Lord willing!  We’ll have to assess my health situation before we can consider taking a similar trip. Hopefully, I will be able to be considered for a transplant this summer.  Day at a time for now!

Our family motto is, “…always an adventure…” – and this trip was truly an adventure!

Friday, December 25, 2015

Christmas 2015

Christmas 2015

Today our house experienced a very rare occurrence...we had all 4 kids and all 4 grandkids (5 if you count the one in-utero!) with us! We are truly blessed to be able to have them all together at the same time - even if only for a couple days.
After our traditional Christmas breakfast: cinnamon-chip french toast, bacon (10 pounds!) and eggs, we sat in the front room to do the gifts.
Our son, Evan, read some scripture, then our oldest granddaughter Eden helped distribute the gifts to everyone. Our family tradition is to open one gift at a time according to chronological age (youngest first).
After the gifts were done and we were all just sitting around talking while the young kids played, our 2-year-old granddaughter Lydia crawled up into my lap (picture above). She didn't get much sleep the night before, and was obviously worn out from all the festivities. She was in my lap for quite a while - even though the 2 older kids were being pretty noisy - and nearly fell asleep.
While she was enveloped in my arms I was overcome with many emotions.
I was going back and forth between, "...where will I be next Christmas?", and, "...will I still be here next Christmas?"
If all goes according to my plan, I will probably be up in Seattle either preparing for or recovering from a double-lung transplant - the much-needed operation that will help keep me here on earth a bit longer. This would enable me to have many more cherished moments like the one pictured above. One thing has become very clear during this recent journey...time with my wife and family has become my most treasured "possession".
But that's MY may or may not be God's plan.  Either way, I want to be found faithful.
From my vantage point it would appear that God is not finished with me yet - and that's OK with me!
In my head I know that heaven is glorious (literally!) and I long to be there with my Savior.
Yet I am so blessed right now, my heart wants to stay here where I am loved and supported.  I supposed that's selfish of me - but right now I really don't care!
I love my incredible wife. I love my kids and grandkids. I love this whole blended/extended and sometimes dysfunctional mess we call family!  I love serving others - locally and globally. I love the relationships I've developed (new and old).
I guess it all boils down to what the apostle Paul said in his letter to the Philippians (1:21): For me, to live is Christ and to die is gain!

Blessings this Christmas!

Tuesday, September 15, 2015

September 16, 2015 – “In The Checkout Line”

For the past few weeks I’ve been very introspective. Everything has become more “real”, and it’s starting to sink in.
At least a couple of factors have greatly contributed to this reflective period:
  • -       Locally, our area (Southern Oregon) was very hot (several days of triple digit temperatures) and smokey (several large wildland & forest fires). I was actually getting claustrophobic – not to mention the affect the smoke had on my damaged, weakened lungs. The smoke lingered for nearly 5 weeks – it was like a brown London fog.
  • -       August 16th marked the one-year anniversary of my Dad’s passing. September 20th will be one  year since his memorial service.

My emotions have been just below the surface – “leaking” out at the slightest, seemingly insignificant things…sunsets, sunrises, music, hugging friends & family, spending time with my kids and grandkids, watching a beautiful dance on SYTYCD, etc.
I’ve also noticed some slight changes to my health;
  • -       I have become more oxygen dependent (thankfully, I have a new portable O2 concentrator and don’t need the tanks anymore!)
  • -       It’s been more difficult to sing and talk. Songs I used to sing confidently with my band and/or on a worship team I can’t seem to do anymore. I have to pause mid-sentence to catch my breath or to cough. I’ve been coughing more regularly. Even though I’m on a new medication that’s supposed to slow the disease down (there’s no cure), and going to pulmonary rehab (to help my stamina) – I feel like there hasn’t been much, if any, progress. I know my lungs won’t get better, but I was subconsciously wishing they wouldn’t get worse.
  • -       I’m supposed to be losing weight, but it’s difficult when I can’t really do anything very aerobic or cardiovascular – my lungs can’t handle it. Losing weight will obviously help my health in many ways, but mostly it will help me get on to a lung transplant list sooner. My primary care physician saw my wife the other day (she also works for the hospital) and asked how my weight loss was coming. She said, “slowly”. He told her, “doesn’t Steve realize this is a life & death situation?”

I guess it’s all boiling down to me finally beginning to realize the severity of my situation.


Even though my lips aren’t blue, and I can still function relatively well considering my disease, it’s still 100% terminal. The only way out of this is a lung transplant – and even then, there’s no guarantee it will work. I would have to be on several meds (anti-rejection) for the rest of my life. Not to mention that SOMEONE WILL HAVE TO DIE for me to continue to live. That will be a huge topic for discussion at a later time!
Everybody has an expiration date…mine might happen to be a little sooner than I expected.

I refuse to be Mr. Doom & Gloom! Even though I’m struggling with reality, I choose to be thankful!
I am thankful to be alive!
I am thankful for an amazing, loving, wife!
I am thankful for all my kids (step kids & in-law kids included!)
I am thankful for my grandkids! (I love being a grandparent!)
I am thankful for my entire family!
I am thankful for my friends!
I am thankful I can still enjoy, play, & write music!
I am thankful I can still work!

I will CHOOSE to be thankful in ALL things! (1 Thessalonians 5:16-18)