Amyloidosis (am-uh-loi-DO-sis) is a rare disease that occurs when a protein called amyloid builds up in organs. This amyloid buildup can make the organs not work properly.  Organs that may be affected include the heart, kidneys, liver, spleen, nervous system, and digestive tract.  Some types of amyloidosis occur with other diseases. These types may improve with treatment of the other diseases. Some types of amyloidosis may lead to life-threatening organ failure.  Treatments may include chemotherapy with strong drugs used to treat cancer. Other types of medications can reduce amyloid production and control symptoms. Some people may benefit from organ or stem cell transplants.

I live in Sandy, Utah, and work at the LDS Church Office Building in downtown Salt Lake City, a distance of about 17 miles.  For the most part, I drive to TRAX (UTA Light Rail), take the train to downtown Salt Lake, and walk to work.  Most days, this is a trip of just under an hour.  During the summer months, when the weather was nice, I decided to ride my bike to work.  The wind in my hair, the fresh air, and the exercise would make for a great way to start and end my workday.

Me, being somewhat competitive in nature, I would time myself believing that the more I rode, the faster I would get.  I have always enjoyed being in great shape and enjoyed the benefits of a strong body.

In 2017, my director an avid bike rider, asked me if I would like to join him and a friend as they rode their bikes home.  I felt that I was in pretty good shape and would enjoy the company on the ride.  They had a different route than what I would normally take, but we were going south, and it would get me home.

After work, I met up with them, we rode east on 2^nd South, then south on 9^th East.  I was doing well until we reached 9^th East, where they hit their groove and were riding a lot faster than I normally rode.  They would move out in front of me, and I would then catch up at the next light.  I pushed myself harder, believing that I could stay with them.  But I started feeling a lot of pressure in my chest and though I wanted to prove I could do it, at the next light I told them I did not want to hold them up and that they should go on without me.  I then did my pace until I reached home.

I continued to ride my bike to work that summer but did it by myself, moving at my pace.  Once, while riding home, I caught up with a rider and as we talked, he told me he was 66 years old.  I then went on to pass him and thought myself doing quite well and was proud of what I had accomplished.  Then I hit a hill and as I was pushing up the hill, this same gentleman passed me.  What an ego buster.  It didn’t matter, I enjoyed the exercise and fresh air, and didn’t let it stop me from doing what I liked.

With the summer of 2018 and the warmer weather, I decided it was time to pull the bike out and start my summer routine.  But, for some reason, just getting my speed up to normal was exhausting to me.  I was finding that my rides to and from work were taking a lot longer.  I was having a hard time understanding why.  I didn’t think the winter had taken that much out of me.  By the time I arrived home in the evening, I was just too tired to do anything.

Then I started noticing other issues.  Walking up a flight of stairs at work, would cause me to almost pass out.  I would have to stop and catch my breath.  This, for me, was not normal.  I would always take the stairs, knowing the exercise was good for me.  I was concerned with how I was feeling and knowing that I had my annual physical in a couple of weeks, called to see if I could move the appointment up.  They had no openings, but told me if I was feeling poorly, to go to the emergency

I then called Jean and told here I was going to the Emergency Room and could she meet me there.  I had taken TRAX to work that morning, so I rode TRAX to 5300 South and then walked to the IHC Hospital, about a half mile walk.  Jean went to the TRAX stop and was waiting for me there.  She called me and I told her I had walked.  She was not happy about that and I was scolded.

When the nurse finally called us back, they took my heart rate, and it was at 33 beats per minute.  They then asked me how I had arrived at the hospital, I told them that I had walked from TRAX.  They were quite surprised that I had not passed out.

This was the start of me becoming a medical guinea pig.  After running several tests on me, they determined that my heart was suffering from stress.  After all was done, they determined that I was a candidate for a heart pacemaker.  I was not in favor of this intrusion into my body, but that was quickly overridden by Jean and my mother.  We all know that you cannot argue that that amount of power.  The decision was made and we scheduled that appointment.

I spent three days in the hospital and when it was done, I had a pacemaker, and my heartrate would not go below 60 going forward.  The doctor told me as I was leaving that I could not lift more than 10 pounds because of the possible tearing of the lead wires from my heart, that I had to allow two weeks for all the heal.  Trust me when I say, I could not have done any lifting if I had wanted to, Jean was monitoring everything I did.

I was limited as to what I could do for a few weeks, but Jean and I would go for walks.  I remember walking up a steep hill and having to reach over and grab Jean’s arm when I started to feel lightheaded.  I got my balance, and we continued home.  From that point on, our walks became more leisure walks.

A month later, Jean and I went to Idaho Falls for a class reunion.  We stayed with a cousin, Blair Simmons, who lives on a hill.  I find these reunions a lot of fun, not so much for Jean, who doesn’t say too much.

While there, I woke up early one morning and decided to take a walk.  I ventured down the hill and then back up.  I did have to stop and catch my breath a number of times, but kept thinking that I was going to make it.  As I approached the house, I saw the back stairs and knew I could make it.  The next thing I remembered is waking up, being on the ground close to the stairs.  My arm and head were aching.  I was able to get up and make my way into the house to the small bathroom.  I noticed that I had cut my eyelid and my arm in a couple of places.  I cleaned up the blood the best that I could, went to the other room and sat down, waiting for everyone else to wake.  The others were a bit surprise at what they saw when they entered the room and I explained what I could remember.  Jean drove us home that day and there may have been a small scolding during that drive.

A few days later, Jean and I were talking another walk.  We were about a mile from the house, near a busy intersection, when I reached over and grabbed Jean’s arm.  She asked me if I was going to pass out.  The next thing I remembered was waking up on a small patch of grass.  Jean had been able to get me to the grass.

We decided that it was time to go back to the doctor and try to figure out what was happening to my body.   At first, they adjusted my pacemaker, but that did little to help the situation.  This then led to a year long string of appointments with various doctors, a lot of different hypotheses, but no solution.

Finally, I scheduled a colonoscopy and endoscopy together with a Dr. Reddy from India.  It seemed like just another doctor’s procedure in that long line of procedures that I had been through.  Two weeks later, I received a copy of a letter that was sent to my doctor.  The letter stated that they needed to schedule an appointment for me to screen for Amyloidosis.

“For What??”.  I could not even pronounce the word, let alone know what it meant.

The doctor’s office never called me with a new appointment, so I decided to take matters into my own hands and went to the office and handed the letter to the receptionist.  She then handed it to the nurse, who read it and gave the letter back to me stating that I was okay.  Evidently, she had no idea what that word meant either.  I requested an appointment be made and we were back in the office a few weeks later.

Dr. White sat us down and said that this was the first case of Amyloidosis that he had ever had.  He proceeded to tell Jean and myself that I had about a year left unless I received a transplant.  I was stunned.  It was like a sucker punch to the stomach, taking away my breath.  Dr. White then went on to say that they were sending my biopsy to the Mayo Clinic for further evaluation and that they would schedule an appointment with the IHC Cancer Office.

Without knowing much more than that, on our drive home, Jean and I discussed what we would need to do to get everything in order for what was to come.  We then called my kids, my parents and our siblings and told them what we had just learned.

I then asked my dad and brother, Rich, to give me a blessing.  I asked Dad to anoint me and Rich to give the blessing.  During the blessing, I remember Rich counseling me that the medical field was a practice and that they were still learning and that I was to be patient with them.  He blessed me that the Lord’s will would be done.  After the blessing, we hugged, visited, and then left for home.

Someone in the family also asked the whole family to have a fast for me.  That was so humbling to think that you all would join in with so much faith.  I am to this day grateful for all the prayers offered on my behalf.

A few weeks later, Jean and I met with a doctor.  She had scheduled a two-hour consultation with us. When we arrived, visited for a few minutes and were done.  She apologized for taking our time and did not charge us for the appointment.

The doctor proceeded to tell us that she had been treating cancer patients for 14 years, but had never had a patient with Amyloidosis.  She was going to schedule an appointment with the LDS Hospital for heavy chemo and a stem cell transplant.  This was May 2018.

We, Jean and I, did not know too much about what was going on, but we now had the words of two doctors, saying that they didn’t know much about this disease that they were all saying I had.  While we were waiting for the LDS Hospital to contact us, Jean’s sister, Annette, called us and told us that a lady in her ward was a nurse at the LDS Hospital and told Annette to tell us not to go there.  Our thoughts, “If not the LDS Hospital, then where?”

A few days later, Annette’s husband called and said he had been doing some research and found that The Huntsman Cancer Center at the University of Utah was listed 33^rd best for dealing with Amyloidosis.  Not knowing the best way to proceed, I called the Huntsman Center.  They were very kind and proactive.  They took all my information and proceeded to work on getting me scheduled.  At this point, I had no idea which would be better or worse, but I felt good about The Huntsman Center.  I finally received a call from the LDS Hospital, and they had me scheduled.  I then called Huntsman and told them about my appointment at the LDS Hospital.

Jared, the Amyloidosis team coordinator at Huntsman, informed me that they had been trying to get my records from IHC, but they would not release them.  I told him to call them now and I would remain on the line to help.  The records were sent.  I had an appointment with Huntsman two days later.  I then cancelled my appointment with the LDS Hospital.  I felt good about this decision.

At Huntsman, we met with Dr. Kovacsovics (Dr. K).  He went over my records and condition, and then informed me that I was at stage 3 with this disease.  He said they do not consider it a cancer, but it would be treated like a cancer.  He then said that there was a study starting and wanted to get me in that study and wanted my permission to move forward.  I remembered at this time Rich’s blessing, “Remember that medicine is a practice” and I thought to myself, “Let’s do this.”  We signed the paperwork, and it all began.

The study was administering the drugs “sub-que” (in the stomach).  They had been given the drugs through the IV, but they found that this was basically burning the veins.

I spent the next four months receiving chemo shots in one side of my stomach and DARZALEX, also known as daratumumab (for treating blood cancer), in the other side.  After four months, I received chemo every week and DARZALEX every other week.  After six months, the chemo was done, and I now received DARZALEX once per month for 18 months.

After I had been on the treatment for about a year, Dr. K told us that if I had taken the other route with the transplant, I would not have made it.  He told us that I was much too weak for the transplant to have worked.  It is humbling to realize how close death had come for me.

Near the end of my treatment, Jean and I were walking through the neighborhood, looking at the Christmas Star (it being the end of December) and saw a sister from our ward.  Her husband had been sick, but they had been very quiet about it.  After she had explained his systems, I told her it sounded very close to what I have.  I told her that he needed to do a biopsy.  About 3 weeks later she called Jean and told her that her husband had the same disease.  We tried to talk them into going to see Dr. K, but she said they really liked their doctor.

The study (treatment) that I had been on had now been approved by the FDA.  So, basically, not a study but a proven methodology for this disease.  Our neighbor, at first was doing well, but then it all turned bad.  His doctor sent him home to die.  He passed three months after starting the treatment.  I don’t understand why he passed, and I am still here.

I completed my treatment in June 2020.  I have been doing well.  I have not been able to run or ride my bike yet, but I am working toward that (baby steps).  This disease hardens the walls of your heart altering how the heart contracts and expands.  Other than my heart condition and other bits of damage done to my organs, I have been doing well.

I share my story to help people become more aware of what this disease, Amyloidosis, actually is and its consequences.  When I was diagnosed, there 15,000 known cases.  After one year of treatment, then numbers have increased to over 75,000.   Dr. K told us that it is only because the medical field does not understand it fully to be able to diagnosis it correctly, but slowing they are learning more about it and with that the number are on the increase.  Dr. K travels the world teaching about this disease and affects it has on the body.  Most times deaths are blamed on congestive heart failure, when in reality, it is Amyloidosis.

I feel very blessed that my life has been extended to enjoy my family and share my experience.  I am also grateful for a father and brother who were in tune to give me guidance from the Lord when I did not know what to do.  Life is full of those unexpected turns, and I don’t always understand it, but only try to make the best of it.

There are a lot of unknown words, that we face in our lives, but I will add this final thought:

John 1:1    In the beginning was the Word, and the Word was with God, and the Word was God.

After all is said and done, this Word will bring the peace and happiness to our lives, and help us with all those unexpected turns that we face.

P.S….  Being a finance guy, I thought I would share the cost of this treatment.  The daratumumab was $15,000 per shot.  Chemo is $4,000 per shot.  The pacemaker was about $60,000.  So, add these all up and this puts me close to the “Six Million Dollar Man”.  For you youngsters, this was a show that we use to watch in the 1970’s starring Lee Majors.  It was a fun show.  Though not quite six million, I have had a lot of money passed through my body.