January 29th – One year later…

One year ago today Matt took his first breath with his donor lungs.

Even though so much has happened since then, it still seems hard to believe a full 12 months have passed since that amazing day.  We enjoyed a nice dinner out this evening….and did a lot of remembering about everything that transpired last January!

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Applebee’s!!

What has changed for Matt (and us!):

  • Before Matt’s transplant, we used to look at his lips as he brushed his teeth to see if they were blue…indicative of low oxygen.  That was a hard habit for us to break!
  • He no longer has coughing fits after taking a shower (it used to completely exhaust him to just take a shower)
  • He can now enjoy fireplaces!
  • When out in public, we always knew where he was.   We either had him beside us (carrying his heavy oxygen tank) or he stayed put where he sat down.   Now we can’t keep up with him…he is all over the place!
  • Matt has always enjoyed cooking.   Before his transplant, he mostly stood at the counter and worked on whatever was put in front of him.   Now he is MUCH more active and involved – getting ingredients out of the fridge and cupboard, carrying things around.
  • He is far more organized now…getting things out early for planned activities, putting things away, etc.  This has been a very welcomed change!
  • Matt pushes himself hard during his exercise sessions.   Before his surgery he usually was looking for reasons to stop early, go slower…and generally slack off.   I cannot imagine how different it must feel for him now!
  • I am not sure what the longest bucket list on record is…but Matt’s is pretty long.   He continues to add things to it – making LOTS of plans!   It is fun to watch!
  • We used to plan our days around his regular inhalation treatments.   It still sometimes seems strange that he does not need these anymore!
  • Before his transplant it took a lot of effort for us to get ready to go away somewhere.   Load oxygen concentrator machine into the car, decide how many oxygen tanks to pack, package up his inhalation treatment machine, bring regular medications as well as think about what we might need if he gets sick while we are away from home.   Now the only ‘extra’ thing we need to do for Matt is grab his bin (with all his medications). and off we go!
  • Seeing the freedom he now has is such a joy!

Matt continues to do quite well.  Most of the fall he had one head-cold after another.  They discovered in November that his immunoglobulin G (IGG) level was quite low.   His team thought this might be one reason for his non-stop head colds.  Matt received an infusion treatment in December which brought his IGG level up some….but not as far as they wanted.  He is waiting to get another infusion treatment now. He will have his last ‘routine’ bronchoscopy in February where they will take tissue samples to look for indications of rejection.  He will be glad to be done with these invasive tests!   Once this next visit is complete, he will need to return to U of M for routine tests and exams every 3 months for the rest of his life.  We would also return to see his doctor if he ever showed indications of rejection (fever, breathing difficulty, feeling poorly, etc).  We are thankful that so far he has not experienced any rejection episodes, as 30% of lung transplant patients have at least one rejection episode in the first year post-surgery.

Even during these cold winter days Matt is staying busy!   We went to Kentucky to celebrate Christmas with our oldest son Jeff and his wife Kimi.  We visited the Motown Museum in Detroit a few weeks ago.  Matt has been working out regularly and has enjoyed staying connected with friends.  Last weekend he attended a special meeting of the U of M Lung Transplant Support Group, where he enjoyed visiting with a number of pre- and post-transplant patients and their families.  We then had a great afternoon and evening with Gail’s sister’s family!

As we look back at this past 12 months, we have so much to be thankful for…

  • Our family and friends have been so incredibly supportive and encouraging to Matt (and to mom and dad!).
  • Matt has had almost none of the usual complications and challenges post-surgery (we were reminded of this at the support group meeting as we visited with others!).
  • Matt’s donor family are never far from our minds.  We recently wrote a letter to them as we approached the 1 year anniversary of their loved one’s death.  Even though we wrote them last year after Matt’s surgery, we have not yet heard anything from them.  We are so very thankful for the gift of life they gave Matt….and pray for them often, as they have experienced their own year of ‘firsts’ without their loved one.  We hope to meet them someday when they are ready…praying they are taking comfort in how they helped Matt and others who received organs from their loved one.

But most of all, we are thankful to God.   We continue to remember that Matt’s life (really ALL of our lives) are in His hands, and that He numbers our days.  We take nothing for granted, as we cannot know what tomorrow will bring.  We acknowledge that everything we have enjoyed has come from Him!

Psalm 126:3

The Lord has done great things for us, and we are filled with joy.

 

December 13th – Gifts!

It’s the time of year for giving and receiving gifts!

Sometimes gifts are given without much thought, and are not deeply appreciated by the recipient.  I am reminded of the long ago Christmas when my father gave my mom a set of chains for use on our car tires in the winter.   I doubt he gave much thought when he bought them, and I am quite sure from her reaction that mom did NOT deeply appreciate the lovely set of tire chains she received!

But often, the gift giver is very thoughtful as they select just the right item…one that is needed and will be greatly valued and treasured by the receiver.  These gifts yield precious memories for years to come as the love and care of the giver are remembered.

Nearly 11 months ago, Matt was given an amazing gift when someone donated their lungs.  That gift could not have been given without it costing their life.  We still recall the words of Jenni when she called to tell Matt that it was time to come to the hospital for his transplant surgery.   She said ‘these lungs are perfect for Matt’.

The gift of these lungs has given Matt a life he previously had not known…a life with good lungs – allowing him to develop strength and endurance he has never had.  This has opened a door for him to experience many activities that were previously impossible, or were so difficult that he could not really enjoy them.

Matt has continued his ‘wear out Mom and Dad’ routine over the last few months!

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He had the joy of visiting his neonatologist that cared for him 31 years ago when he was SO little!

 

 

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Matt really enjoyed attending a local minor league hockey game – sitting right next to the penalty box!  He also was able to go to a college football game AND a college basketball game!

 

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For the first time in many years he went with us on our annual ‘Christmas Tree Hunt’…making sure we got just the right tree!

 

 

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Matt is responsible for setting up our manger every Christmas season.  As usual – somehow the donkey ended up in the loft!

 

Gifts….

It cost Matt’s donor their life for Matt to receive his gift….giving Matt a life he could not have otherwise lived.

During this advent season, we reflect on the gift that God has given.   It cost God his only Son to give the gift of eternal life to all who believe….a life we could not otherwise experience.

John 3:16-17

16 “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. 17 For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him.

THAT is what we celebrate during this special season!

October 13th – The Big Apple!

What a trip!

Several weeks ago we were in New York City for a whirlwind 4 day vacation.  It was Matt’s first airplane ride in 12 years…and he LOVES to fly!   I’m not sure it really mattered where we went – he would have enjoyed it if he could travel by plane!

Other than the flying, there were plenty of other highlights!  We stayed right in midtown Manhattan on 6th Avenue….within an easy walk to Central Park, Times Square (and the Theater district) – just a half block from Radio City Music Hall.   We were on the 24th floor, giving us a really nice view of the area, and a great place to watch the non-stop traffic, ambulances, fire trucks and police cars.  Not used to hearing that many sirens!

A quick summary of what we did….

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One World Trade Center, near the September 11 Memorial and Museum

 

 

 

 

 

 

 

 

 

 

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Times Square at night. Matt was a picture taking machine…over 300 photos in the short time we were in NYC!

 

 

 

 

 

 

 

 

 

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Broadway show! We saw a classic musical – Fiddler on the Roof! It was SO good!

 

 

 

 

 

 

 

 

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Empire State Building! Matt with Gail on the outdoor observation deck 86 floors up! Not a cloud in the sky…an awesome view!

 

 

 

 

 

 

 

 

 

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Matt and some old guy in Grand Central Station

 

 

 

 

 

 

 

 

 

 

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Feeding the ducks in Central Park. What an oasis in the middle of all that concrete!

 

 

 

 

 

 

 

 

 

 

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I don’t think we are in Midland…..!

 

 

 

 

 

 

 

 

 

 

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Shopping for M&M’s. I have never seen a store quite like this one in Times Square!

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At Rockefeller Plaza…just a few blocks from our hotel!

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Outside our hotel – Matt was fascinated by all the ‘action’ day and night!

We enjoyed dinners out, including a wonderful evening with Gail’s cousin Diane and husband Pat who have lived in Manhattan for many years.  Matt liked the subways so much that he wanted to just go and ‘ride around’!  We experienced the expected taxi driver we could not understand (but he was really nice!).  We saw lots of street vendors, almost got on camera at Good Morning America, and heard languages from countries all over the world!  We felt like we were on ‘sensory overload’ most of the time we were there!  The night we got back home we were a little un-nerved to hear about the bombing on 23rd St and 6th Ave….just down the street from our hotel.  Thankful we were not still there and that no injuries were life threatening.

While in New York City Matt came down with a hard cold that hung on for almost 3 weeks.  What may have put him in the hospital before only cost us a few boxes of tissues – what a difference good lungs make!   Just today he had another routine followup appointment with his medical team….who were thrilled with Matt’s improved pulmonary function test score!!! (Matt was thrilled too!).   Matt has been doing well this fall – getting his fill of sports on TV (college football, NASCAR, baseball….you name it, he watches it!).

Matt’s favorite part of the NYC trip (other than flying!) was his time up on the Empire State Building.   I am guessing 100 of his photos were taken of the city skyline.    He really was taken by the perspective you get of that huge city from the top of that amazing building.

But as high as the Empire State Building is, we know that God’s perspective is altogether different than ours.   And while we cannot fully know and understand His perspective, we can give thanks knowing that His ways are higher than ours…as God told the prophet Isaiah.

Isaiah 55:8-9

For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.
For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

In these confusing and troubling times we live in, I take great comfort in this!

September 3rd – “I have never seen this before…”

Never?

It gives you pause when you hear your doctor say these words….but that is just what Matt heard his transplant pulmonologist say last week during his latest appointment!

He was responding to Matt’s question about his recent pulmonary function tests.  While his most recent test result was essentially unchanged, Matt has his medical team ‘puzzled’ at present.  His pulmonary function test trend over the last 3 months would be indicative of a rejection episode.   However, absolutely everything they have looked at shows that Matt has no signs of rejection….leading his doctor to make the comment “I have never seen this before…”   While we wish that Matt’s test results were better, we are thankful that things have stabilized with his lung function.  While his team was very glad to see his test result was essentially the same as last time, they do want to see him in 6 weeks to repeat the test….a bit earlier than normal.  It is comforting to Matt’s medical team monitoring him so closely!

Matt continues to keep us busy.  His most recent adventure was a whole weekend of NASCAR races at Michigan International Speedway!  Matt went first class – with ‘pit passes’ and seats in the Champions Club.  One of many highlights of the weekend was getting his picture taken with one of the top Sprint Cup drivers – Matt Kenseth!  Matt’s Aunt Tracy was gracious to let us stay overnight at their place….it was great to see her and her family!

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Here’s Matt at the track…

 

 

 

 

 

 

 

NYC

Next up on Matt’s bucket list…

In the Old Testament, the prophet Isaiah encouraged people to remember…..remember what God had done for them in the past in order to encourage them in their present circumstances.  But then in Chapter 43, he suddenly tells the people to forget what is behind, and to look ahead to what God will do in the future.

Isaiah 43:18-19a

18 “Do not remember the past events,
pay no attention to things of old.
19 Look, I am about to do something new;
even now it is coming. Do you not see it?

While we need to learn from our past and not ‘waste’ lessons from our life, it can be a huge handicap if we go through our days always looking back at our past…keeping us trapped by events that shaped us and preventing us from experiencing a new life filled with hope and joy.  That is what Christ purchased for us when he died (Romans 5:6-11).

As we go on this journey with Matt, these verses take on special meaning.  His old life – limited by his bad lungs and frail health – is becoming a distant memory.  His transplant surgery has given Matt ‘new life’…a life filled with things we never dreamed he would be able to enjoy!

Or as Matt’s doctor said last week…”things we’ve never seen before!”

 

August 23rd – Milestones

In his 30+ years of life before his transplant surgery, Matt had a of lot of amazing experiences.   In these first 6 months with new lungs, he continues to experience new milestones in his post-transplant journey!

First Family Vacation

Matt, Gail and I spent a week in northern Michigan, enjoying some hot summer weather on Grand Traverse Bay.  Our time together was SO different than previous vacations of recent years, where Matt was tethered to his oxygen supply and, for the most part, confined to our hotel room.

First TV Interview

Gail noticed repeated calls from a cell phone number we were not familiar with.  When she answered it, she heard the voice of a local on-air TV reporter asking to talk to Matt!  45 minutes later, the reporter and his cameraman were in our driveway getting set up to talk to Matt on camera.  4 hours after that, Matt was watching himself on the 11pm news!   He was really nervous, but did a great job!   See for yourself… http://www.wnem.com/story/32577115/double-lung-transplant-recipient-discusses-process

First Home IV

Matt’s medical team continues to be puzzled by his pulmonary function test results.  After ruling out other issues, they decided to try a ‘steroid burst’….giving him a dosage of IV steroids for 3 consecutive days.  At 7:30am Thursday morning UPS dropped off a large box that contained the steroid doses and all the other materials needed.   Doing this at home worked great – much nicer than going to the hospital!  We knew that this sort of home treatment was likely at some point in the journey.  It was good to see by experience that it was not too hard!   Here’s Matt getting his IV dosage while watching TV in his room!

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First Solo Lunch out with Friends

Long time friend Adam and newer friend Mary Jo stopped in and picked up Matt to take him out to lunch at our local Japanese Steakhouse…his favorite place to eat out!  He had a great time and – as expected – NASCAR and politics were on the menu along with the food!

Saying Goodbye to Oxygen Hardware

Oxygen tanks and concentrator machine have been a constant presence for Matt since 2003…making it hard to remember what is was like not having them around!   Matt’s team at U of M suggested we keep his oxygen until 6 months after his surgery.   When the day came to say ‘goodbye’, Matt was in the mood to celebrate!

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Driving Speedboat

This boat was FAST!   Notice Matt was not looking where he was going! (thanks Joe and Betty!)

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County Fair

The view from the top of the Ferris Wheel was impressive!

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Detroit Tigers Game

Matt was on oxygen years ago the last time he went to Comerica Park.   It was SO nice for him this time…able to enjoy walking all over the stadium before the game, with no problem climbing all the stairs.  The home team won the game…an added bonus!

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On the medical front, Matt’s medical team saw nothing of interest on the special CT scan of his lungs last month, which was great news!   As mentioned above, they are still curious about his lung function test results trend, so this continues to be a topic of discussion and attention.  Per their normal protocol at 6 months ‘post transplant’, they have dropped several medications, added one new one, and adjusted dosages of several others.   All routine changes….and all good news!

Milestones….originally stone markers along the journey to help travelers know how far they have come and how far they have to go.  The scriptures also speak of stones – stones that stood as reminders of how God had been faithful to the children of Israel as they looked back on their journey across the Jordan River into the ‘promised land’.  These were ‘stones of remembrance’…

Joshua 4:20-24

20 Then Joshua set up in Gilgal the 12 stones they had taken from the Jordan, 21 and he said to the Israelites, “In the future, when your children ask their fathers, ‘What is the meaning of these stones?’ 22 you should tell your children, ‘Israel crossed the Jordan on dry ground.’ 23 For the Lord your God dried up the waters of the Jordan before you until you had crossed over, just as the Lord your God did to the Red Sea, which He dried up before us until we had crossed over. 24 This is so that all the people of the earth may know that the Lord’s hand is mighty, and so that you may always fear the Lord your God.”

As we look back at Matt’s life and the many milestones – good and bad – that are behind him, we truly feel that for us Matt is a ‘living stone’ (1 Peter 2:5).  We look at him and are reminded that ‘the Lord’s hand is mighty’ still!

July 14th – Keepin’ Up with Matt

Whew!

Matt’s new lungs and new-found energy have created some new challenges for us.  We can’t seem to keep up with him!   Matt has energy that does not seem to run out, and he keeps adding things to his ‘bucket list’!   I think we are currently planning things out into 2019!

In just the last few weeks, Matt has enjoyed the following activities…

Boat races on the Saginaw River

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Tops speeds over 120 mph!

 Minor League Professional Baseball Game

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Matt got to throw out the ceremonial first pitch!

Basketball

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Free Throw!

Car races

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Nate’s first race!

Fireworks

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Matt enjoying some ice cream before the show!

Survival Flight Tour

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The landing pad with the Survival Flight Helicopter awaiting the next call

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I think Mom and Dad enjoyed this almost as much as Matt!

Classic Car Show

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This was Matt’s favorite!

 

 

 

 

 

 

 

 

Lake Michigan Beach

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Being at the beach with no oxygen tank is awesome!

 

 

 

 

 

 

 

 

As you can see, Matt is not lacking for energy!   While we are often worn out when the day is done, it is pure joy to see Matt enjoying all that he is able to do these days!

Regarding Matt’s health…his lung function test results from last week indicated an additional slight drop in his lung’s performance.  That result was tempered by bronchoscopy results indicating NO evidence of tissue rejection, which was his doctor’s primary concern from Matt’s lung function test in June.  So while they are happy with how Matt is doing and how he looks, they still want to keep digging to try to understand why his lung performance has declined in his last 2 tests.   They continue to see presence of the bacteria they have tried to eradicate twice.  After consulting with their infectious disease team, they have ordered a special  CT scan for his lungs.   This will be helpful information as they work to get a full understanding of the picture they are seeing with Matt.   Soooo, another road trip to Ann Arbor soon!   Meanwhile – we stay busy with fun summer activities!

Matt knows his new lungs won’t last forever…hence his motivation to keep checking things off his ‘bucket list’ and enjoy the time he has.   God encourages us to use our time wisely as well, through Paul’s letter to the church in Ephesus.

Ephesians 5:15-16

15 Pay careful attention, then, to how you walk—not as unwise people but as wise— 16 making the most of the time, because the days are evil. 

As we consider the days we live in…these are wise words to heed.

 

June 18th – Expect the Unexpected

Yeah.

I guess by now nothing should surprise us….but it still does!

Yesterday was one of Matt’s ‘maintenance’ visits to U of M Hospital.  Pulmonary function test, followed by a visit with his transplant pulmonologist.

The unexpected…

  • One hour before Matt’s first appointment, we were sitting still on US-23 — 50 miles from the hospital.   Arriving on time was not looking good!  We learned that earlier in the morning an oversized load hit an overpass bridge, causing them to completely close the expressway until they could confirm whether or not it was safe for traffic to pass under the bridge.  It took us a full hour to travel 4 miles.  Right when we got up to where the road was closed they removed the barriers and re-opened the highway.  We called ahead and let Matt’s team know that we were delayed and were not sure when we would arrive.   We rolled into the clinic an hour after we were supposed to be there.
  • Matt’s pulmonary function test results were not quite as good as his last test in April.  He has been doing really well, and we (along with Matt’s medical team) fully expected his lung performance to improve again when tested yesterday.  Based on these results, Matt’s doctor decided to pull his next scheduled bronchoscopy forward 3 full weeks.  Out of an abundance of caution, he wants to make sure that there is not any tissue rejection going on.   He does not believe there is a problem based on how well Matt appears to be doing, but he really wants to confirm all is ‘ok’.
  • To top it all off…Matt got an unexpected vaccination shot yesterday.  Ouch!

Matt has been one busy guy these last few weeks.  Attending open houses, fishing (and catching!), and CAR RACES!   Evidence follows….


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Matt was relentless in his pursuit of ‘the big one!’

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The joys of dust masks…need to take care of those new lungs!


We are having a hard time keeping up with him!

When unexpected things happen, we should not be surprised.   God is sovereign, and as much as we like to think we are in control of every aspect of life…we are not!  In uncertain times, when ‘life’ feels like it is spinning out of control…remember the words of Psalmist.

Psalm 46:10

Be still, and know that I am God