Wayne Scott April 23, 1956 to May 31, 2015
My best friend, my partner in business and in life, my husband for 18-1/2 years, the captain of our boat, and the author of this blog left the physical world at 2:40 p.m. on Sunday, May 31, 2015. In addition to me, he left behind three daughters, Stacey (Jason) Carlton, Stephanie Scott and Jessica (Nick) Chaffee; three step children, Erin (John ) Kernan, Ryan Belt and Anna Yovandich; eight grandchildren, Ryleigh and Cybil Kernan, Alex, Elijah and Silas Carlton, Kayleigh Scott, and Peyton and Ayden Chaffee. His extended family included his brother-in-law Kendall Rinne and Kendall’s children and grandchildren.
We enjoyed 2-1/2 years of full-time RV life, but then our nightmare began on April 6, 2015. Wayne had been experiencing shortness of breath over the past 2 years, but always thought it was caused by being overweight and a former smoker, or being out of shape, or being in higher elevations. Last summer in the Colorado Rocky Mountains, he was diagnosed with pneumonia caused by altitude sickness and had to use oxygen from May through September. Then we went to the lower elevations of southern California and New Mexico, and he seemed to return to minor shortness of breath with exertion. He started to become very ill at the beginning of April and agreed to seek medical attention, but then it was Easter weekend and the clinic that he preferred was closed. He finally went to the doctor on the morning of April 6th and was immediately diagnosed with pneumonia and sent to the emergency room at Sierra County Hospital in Truth or Consequences. He was soon put into an ambulance and transferred to Presbyterian Rust Medical Center in Albuquerque, NM, where he was admitted to the intensive care unit.
He was again treated for pneumonia, but did not respond to the treatment as the doctors expected. A pulmonary specialist was consulted, a CT scan performed, and Wayne was diagnosed with a rare disease called idiopathic pulmonary fibrosis on April 11, 2015. We were told that the disease is incurable, progressive and eventually terminal, with the only cure being a double lung transplant The typical life expectancy after diagnosis is two to five years, and there was no reason to believe at that time that his prognosis was any different.
Wayne did his usual extensive research and found multiple alternative treatment possibilities, as well as medical research which is expected to provide a cure in about five years. He determined to survive until the cure was made available and seek homeopathic treatment in the meantime, along with the limited traditional medical treatment currently available. I
I told him I would support whatever plan he wanted for going forward, and he decided we should make our way to the University of Kansas Medical Center in Kansas City, KS, where they have a clinic and specialists for IPF patients. Another plus was that his brother-in-law and best friend Kendall has a farm just outside Kansas City, MO, where we could park the 5th wheel and use it as a base for going back and forth for testing and treatment as an outpatient at KU Medical Center.
Our health insurance at that time was through South Dakota where we were domiciled, and there was no network coverage anywhere outside SD. We decided to switch our domicile to Texas, where we could get a nationwide health plan through Blue Cross. We proceeded to change our vehicle registrations, our driver’s licenses, and our insurance coverages to Texas. That required a lot of paperwork by mail, as well as three trips to El Paso for him to pass his driver’s test, which he had to take because he was using oxygen. (See his earlier blog post on that fiasco.) We were able to accomplish all that by the end of April, when our commitment as work campers at Riverbend was scheduled to end. I also cancelled four planned work camping gigs in Oregon this summer. We talked about and planned for future RV travels in lower elevations starting in the fall, when his condition was expected to be stabilized.
We said our goodbyes at Riverbend Hot Springs Resort and left Truth or Consequences, NM, on Monday, May 4th. In his regular get-it-done fashion, Wayne had gotten an inverter installed in our truck to support the oxygen concentrator he needed to generate the 4-5 liters per minute that kept him functional. He was able to drive the rig with the electric concentrator and multiple portable tanks for use when we stopped. We covered about 500 miles in three straight days of driving and stopping early at predetermined camp sites which had electric hook-ups to support his oxygen needs at night.
Then on the morning of May 7th, in Hooker, OK where we had stopped for the night, Wayne again became very ill, collapsing on our living room floor around 7:00 a.m. I had him transported by ambulance to the nearest hospital, which was located in Liberal, KS, about 20 miles from our camp site. He was soon diagnosed with a bronchial infection, with possible residual pneumonia, and the IPF diagnosis was confirmed. He was treated and seemed to be improving very slowly over the next 10 days, while I traveled to the hospital daily from our camp site in Hooker. Then his condition suddenly worsened, with fluid build-up in his lungs and increasing oxygen requirements.
On the eleventh day, when I began to feel a real sense of urgency in Wayne’s condition and care, I requested that he be immediately transferred to KU Medical Center. He was taken by plane on the evening of May 17th and admitted to the transplant ICU in Kansas City, KS. It is there that the end of our tragedy began.
My job at that time was to get our rig from Hooker, OK to Concordia, MO. Throughout our 2-1/2 years of RVing, Wayne and I had talked multiple times about the importance of my being able to handle all the camper systems and drive the rig in case I ever needed to do so. Unfortunately, that had not happened yet. During each of his hospital stays up to this point, he was slowly explaining to me (with the help of pen and paper illustrations) how to fill the water tank, dump the gray and black tanks, manage the auxiliary fuel tank in the truck, hook up the camper to the truck, and handle the hitch when unhooking. Luckily, I had become fairly adept at leveling the rig when we park.
When I needed help the most, our friends stepped up to the plate. LeRoy and Anne Willis, whom we had met only twice (both times at Riverbend Hot Springs), offered to drive the rig from Hooker, OK to their property in Wichita, KS, and let me stay at their place as long as I wanted. We took them up on their offer, and on the morning of May 18th, they arrived in Hooker. That night, I stayed in my camper in their yard (with full hook-ups by the way), then they loaned me their car so I could drive to the hospital to be with Wayne. I left their place at 5:00 a.m. on the 19th, arrived at the hospital around 8:30 a.m. and was able to spend the day with my husband.
The next part of the plan involved LeRoy pulling our rig to a halfway point between Wichita and Kansas City, where Kendall and I would return their car to them. Kendall would then take over the driving and deliver me and the rig to his farm in Concordia, MO. Instead, we waited all day for a consultation with the doctors, during which time LeRoy and Anne continued driving almost all the way to KC. We made the switch and continued to the farm where we set up camp on the evening of May 19th. I will forever be indebted to LeRoy and Anne, (https://2010liberty.wordpress.com) who stepped up to help almost total strangers when they saw a need. The RV community has some incredible people!
Kendall had been with Wayne at the hospital since he arrived late on Sunday night. Wayne’s daughter Stephanie flew in on Monday from Tucson, and his daughter Stacey (who also lives in Tucson but was visiting family in St Louis) drove in with four kids in tow. I arrived, as I said, around 8:30 a.m. on Tuesday. My daughter Erin drove from Waterloo, IL and arrived on Wednesday. Wayne had a solid support system in place.
On Monday, as LeRoy and I were making our way from Hooker, I received a call from Wayne, who could barely talk louder than a whisper because of his bronchial issues. He was calling to ask my opinion about his getting a lung transplant. I was pretty confused, since each time I had brought up the subject since this saga began, he was completely opposed to the prospect. He considered it too risky and wanted to pursue other avenues instead. Dr Crosser at KU, however, had been very open and blunt with his prognosis and had explained that the transplant was Wayne’s only hope for long-term survival. Of course, I was totally on board. The next step was to start the testing for transplant candidate evaluation. After being qualified to be a candidate, Wayne would have to be transferred one more time. This time to a facility which performs lung transplants, since KU Med Center does not have that capacity.
The goal then became getting Wayne stable enough to perform the testing, which never quite happened. When testing became impossible due to his critical condition, the doctors started pursuing the alternative, which was to find a transplant center which would accept him without the evaluation testing. The doctor on duty at the time was in communication with Washington University Hospital in St Louis, MO, which would have been perfect for us, since we had my daughter Erin in the area to provide a place to stay before, during and after the transplant. But it was just not meant to be.
The recommendation was to put Wayne on a ventilator, which was the only way he could be transported, and then keep him stable for 24 hours. At that point Washington University would accept him and he would be taken by helicopter to St Louis. Again, not meant to be.
I spent the night in his room on Tuesday, the 26th, and had noticed his oxygen saturation level dipping during the night and being restored with more and more oxygen. Early in the morning, when he was aware and talking, we discussed the possibility that it was time for the ventilator. He agreed to it as the only means for getting to the transplant center. He also expressed a desire for the tube to be removed if he became ineligible to be considered for transplant.
As it turned out, Wayne’s oxygen level dropped to a dangerous level later that morning and an emergency intubation was performed on Wednesday, May 27th, ten days after his arrival at KU Med Center. About an hour and a half after the ventilator tube was put in place, while the nurse left the room briefly, Wayne regained consciousness enough to pull the vent tube. He coded and had to be resuscitated with chest compressions and oxygen. He was never awake or responsive again.
On Sunday, May 31st, the doctors reported that Wayne’s lab report showed a systemic infection, including blood and lungs, and he was experiencing kidney failure. He had no chance of being placed on the lung transplant list. Erin and I called Wayne’s daughters and Kendall to his room, and we as a family (with advice from the hospital’s palliative care team) made the decision to remove him from the ventilator. He took his last labored breath about 20 minutes later.
As we were saying our difficult last goodbyes, we decided to donate his body to pulmonary fibrosis research. A great organization called MedCure is taking care of that for us and will send his cremains back to the family in a few weeks. According to Wayne’s wishes, there will be no funeral, and each person who loved him will grieve privately and personally.
In the end, he made the ultimate unselfish contribution to the Pulmonary Fibrosis Foundation, which funds the research working toward a cure for this rare and deadly disease. Wayne Scott did not have time to wait, but some day a few years from now, someone else’s loved one will benefit from his eternal hopefulness.
This will be the last post on this blog for a long time. I’m not sure I have the ability or desire to pick up his commitment to it. Just know that Wayne and I appreciated the loyalty of his followers and consider you to be part of our circle of friends. Continue the lifestyle in his memory and always
Turn When the Road Does