Nicholas’s Story

Site created on February 25, 2020

Welcome to Nick's CaringBridge website. We are using it to keep family and friends updated on Nick's progress throughout his transplant journey. We appreciate your support and words of hope and encouragement. 

Nick began the journey in the first part of November 2018 when he decided to put his name on the lung transplant list.  Three days later he received the first call; it was a Saturday evening. Everyone was shocked, excited and hurried to get ready. Within an hour, Nick and his mother were flying to Minneapolis. The rest of the family drove through the night to get to the University of Minnesota Medical Center in Minneapolis. Upon arrival Nick started various preparations for the surgery including anti-rejection medications.  After hours of waiting, several more in the pre-operating room, numerous medical professionals explaining the various steps in the process, the surgeon came in and said the lungs were "no good", this is called a "dry run". So everyone drove home that day, exhausted physically and emotionally.

Nick's health declined after the "dry run".  In January, his overall health improved slightly with some changes to his medication. In November 2019, Nick was approved to start on the revolutionary new CF drug called "Trikafta". While it did not effect Nick to the extent of others, it did lead him to be in the best condition that he has been in the last two years.  This is a blessing going though the transplant process, as it will improve the rate of recovery. He chose to remain on the list without knowing when he when he would receive the next call. Nick still had his "transplant bag" packed and ready to go at a moments notice for when he might receive a call. This was just one small thing that showed his steady faith in God's plan. 

Nick received his second call on Sunday, February 23, 2020 at 11:30pm. Lung transplant recipients always have the option to decline an offer, but without hesitation he said YES! By 1:00am Nick and his mother were on a medical emergency flight out of Yankton and the rest of the family drove through the night.  Nick and his mother arrived within an hour of takeoff at the airport in Minneapolis and were transported by ambulance to the University of Minnesota Medical Center. The family arrived around 8AM. Monday was full of waiting since getting to the pre-operation room seemed to take longer than expected and wondering if this was going to be another "dry run" even though the surgeon called the lungs "golden". Finally at 2pm, Nick went back into pre-op. After more medication, more waiting, and more medical professionals, at 5:30pm they finally took Nick in for surgery. The surgery team gave updates every two hours via phone calls. At 12:30am, the surgeon came out and told the family that everything went well. Now the journey continues....

Throughout this journey, Nick's faith has not wavered. It is hard to express in words how calm Nick has been throughout the challenges from Cystic Fibrosis including his declining ability to pursue the things he enjoyed. He continued to trust that God had a plan and expressed a peace beyond understanding. Before surgery he expressed no fear because God is in control, Nick even prayed for peace for the family and the need to trust in Him. This confidence in God's plan and peace with the unknown that he displayed during the journey has made this difficult journey easier for the family.

We cannot thank the prayer warriors enough for all the prayers through this journey! 




Newest Update

Journal entry by Cheryl Fischer

"Missing from their Minneapolis home.......a 31 one year old male, double lung transplant patient, and his care giver mother.  Last seen on August 14 at pulmonary rehab.  Please contact the authorities if you have seen these 2 people."

The above statement really hasn't been posted anywhere, but that's how it could be written if indeed it had been.  Our lives were kind of turned upside  down in a hurry on August  17.    Early in the day,  my mom had called me to tell me that my dad (Nick's Grandpa)  was going to  be put in hospice the next day.    Knowing that my dad's days here on earth were numbered, I called the transplant coordinator  to see if we could move Nick's last appointments scheduled for Sept. 1 to a closer date.   She got the ball rolling, and called back with in an hour  to tell us that Nick would have his scheduled endoscopy on Aug.  20,  with his follow up appointments with the transplant doctor on Aug. 21.  Provided everything looked good, we would be able to leave for SD after that appointment.    We were excited that the days up in the city were less than a week, praying that nothing would disrupt that plan.

Later that same afternoon, my brother called and said that my dad was declining rapidly, and the end days were  near.  Nick was listening to the conversation, and as soon as I got off the phone,  he looked at me and said "Mom, you  have to go home!"   I countered his statement with the fact that I WOULD NOT leave him alone in the city without a caregiver present.    Nick looked at me   with tears in his eyes and emotion in his voice and  said "You need  go home NOW,  You have to leave right now....go pack your bags and head home"  Had he not been so persuasive and emotional, I would have not even entertained the  idea of heading home without him.

After phone conversations with Bill and Tasha, Tasha said she would leave within 30 minutes, get to the cities in 6 hours, then I would head home.  Nick would not hear of me waiting until Tasha got to the city to head home.    He told me to get packed and head home.......he wasn't in any high risk of anything happening before Tasha got here.  So within 30 minutes, I grabbed my suitcase and bare essentials, and drove out of the city for the first time in 6 months.  I told Nick that I had never driven out of the city without him doing the navigating, but he assured me that I would be fine.    With less than an hour between the conversation with my brother, Tasha was on her way to the city, and I was on my way home.    

Nick's raw emotion convinced me to heed his advice to go home.  I would not have left had he not been so  concerned, loving, and relentless.  He is wise beyond his years.  I was able to get home early Tuesday morning, and spend the day with my mom by dad's side at the nursing home all day Tuesday.  Dad passed away late Wednesday afternoon.  Had Nick not been so positively  determined to send me home, I would not have gotten a chance to say goodbye to Dad after being gone 6 months.

I know these last paragraphs sound like they are all about me, but it is really the background story of Nick.  His pure selflessness, compassion,  and determination is what sent me home.  He understood that if I didn't leave "NOW",  I probably wouldn't have been able to say goodbye to dad.  He understood that I had been his caregiver for 6 months, now it was his time to care for me.   He cared so much that he convinced me to leave my post, and hand it over to Tasha.    As simple as that sounds, it was very hard for me to leave, knowing that Tasha had not been briefed on all of the meds, schedules, appointments, ect.  But knowing that they would be coming home Friday, it was a little easier leaving.

Nick and Tash were able to leave Minneapolis on Friday.   Oh happy day!!  We have waited for this day for months!!  All day Friday, Vicar Andy was texting me to see what time they would be coming  thru town.   He said a few people from church wanted to welcome him back to Scotland.  After countless "random" phone calls with Tash to see their what their ETA would be,  Nick  was getting a little suspicious that something was up.  But his suspicions could not have imagined the Fire department escort into town thru main street to all the welcoming community , church and  family  members.  It was  a welcome home  that he will always have engraved in his heart.  The love from your church family and community to welcome you home is medicine very good for the soul.  Thank you everyone!!

Nick was able to be home a couple of days before his Grandpa Schaeffer's funeral.  He was able to be at the funeral and be  pallbearer.  I think we were all a little nervous about Nick being in a setting with this many people right after he got home from his lung transplant, but we knew it was important for him to be present, if possible.   God  covered him with His protection, and all the rest  the family, to be present to send Grandpa  off to  his Eternal home.

Thru this whole lung transplant process, we have seen God's perfect timing for Nick's lung tranpslant to take place.  Even tho it has been a longer journey than we expected, we have seen many little signs and reminders that this all happened in God's perfect timing.  Even at the very end, for Nick  and  I to be able to be home in time to be present for Grandpa's funeral, we see His perfect timing as well.  God is good!  Even when events may not be good, God is still good.  And if we watch and observe, we can see His goodness all around us.  We just need to open our eyes, observe and SEE His Goodness.

Nick had a return appointment 2 1/2 weeks after his dismissal to go home.  His PFT is not rising rapidly, but it is increasing.  He continues with labs 1-2 times a week, with all the meds, breathing treatments twice a day, and  will soon start rehab in Scotland.  We are currently in the city for Nick's endoscopy today and follow up appointments tomorrow.  He is supposed to return to UNM for another endoscopy in 4 weeks, and we'll find out tomorrow if he needs to come back for a doctor's appointment before then (we are hoping for a 4 week spread between appointments).

Nick has been outside as much as possible since he got home.  We have to remind him that he is still recovering,  needs to slow down, and still needs to rest for a bit during the day.  He is trying to make up for lost time.   He is happy to be home, to see his "Girls" and their families ( cows and calves), to be a part of harvest preparation, and harvest.  All those things are good medicine,  great rehab, and  have great healing qualities.  Let the healing continue!

 

 

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