Joe's Medical History part 2

April 2007

If you haven't read part 1 of Joe's medical history, you can do that here.

I should probably add in some details of what was going on in our lives as it plays a part in Jonas deciding not to seek medical attention right away. So here is a brief time line of our lives.

November 1996, Jonas started working full time at Martin Door Manufacturing and I was working full time at Certified Warehouse
June 26, 1997, we got married!
Jan 1998, Jonas started school at SLCC
Jan 1998, I started working full time at First American Title
January 1999, I started school at SLCC
May 2001, Jonas graduated from SLCC
August 2001, Jonas started at the University of Utah. He was also working at SliceX
May 2003, Jonas graduated with honors in Electrical Engineering from the U of U
May 2003, I graduated from SLCC
June 2003, Samuel was born
July 2003, Jonas got laid off his job at SliceX. He decided he should just go back to school since he couldn't find a job.
August 2003, I went back to work at First American Title
August 2003, Jonas started working on a dual Masters and PhD program in Electrical Engineering
Sometime in 2004, Jonas was hired at Lattice Semiconductors
March 2005, Ben was born
March 2005, I quit working to stay home with our boys

2001 SLCC graduate

2003 SLCC graduate

2003 U of U graduate

Sam is born June 15, 2003 on Father's Day

Ben is born March 14, 2005

After Joe's ER visit in April 2005, the doctors referred him to a hematologist. I remember how upset he was when the information packet came in the mail and it was from Utah Cancer Institute. Just knowing he had to see a doctor that worked in that facility really scared him. Our first appointment was nerve racking. Every test they wanted to do was in Joe's mind, "the next test that would be positive for cancer." But after several blood tests, a bone marrow biopsy, CT scans, and MRI's. They still could not figure out why his white blood count was so low. The doctor started to talk about it being an autoimmune problem and they did discover he had a really large spleen. At one point I remember a doctor wanting to do a scope on Joe's stomach (I am not positive if it was this doctor) but when he went to the procedure the anesthesiologist wouldn't put him under because of all the crackling he could hear in his lungs. Joe never followed up with a lung doctor. He said he was too busy in school to keep going to all these doctor appointments. Now, I had been trying to get Jonas to see a lung doctor for several years because he was ALWAYS coughing. But he would tell me that the doctors would not be able to fix it, so why bother? Seriously. Men are SO stubborn.

Moving out of our Taylorsville condo that we lived in for 8 years!

Jonas was busy working at Lattice Semiconductors and going to school. We were in the process of trying to sell our condo and were considering a homes in West Jordan. A small miracle happened when Jonas agreed to build a home in West Bountiful. Now, for the record Jonas loved my family, but he never wanted to live that close to them. He liked his space. We were attending a BBQ at a friends house in West Bountiful one summer evening and he said he had really liked the feel of the neighborhood and could see us living there. I immediately jumped on that and knew there was one lot left for sale in the same subdivision. A few days later we put a hold on the lot, but a week later decided not to build there because we were going to buy Jonas' sisters home in West Jordan. A week later we decided we didn't want to live in West Jordan and wanted to build in West Bountiful. (We were so indecisive!) I called the agent but another couple had a hold on it and would be deciding in the next two days if they would keep it. This was the second couple after us that had a hold on the lot. Lucky for us, they decided not build and we got it back! I was thrilled! It had gone through us, two other couples, and back to us. It was totally meant to be. And now we know why. I needed to be close to my family or I would not be able to get through the upcoming years.

 Jonas got laid off his job at Lattice Semiconductors in December 2005, one month before we were going to close on our home.  It was another small miracle that our loan still went through and we were able to move into our West Bountiful home in January 2006. We lived off of student loans until May 2006 when Jonas was hired at Summit Microelectronics. It was a huge blessing for us to have Jonas working at Summit.

We moved into our new West Bountiful home in January 2006

With his new job and insurance change, we would now be seeing doctors at the University of Utah. About June of 2006 Jonas had another visit with his diabetic doctor. She found that his white blood count was still really low so she told him to go back to a hematologist. We went to see Dr. Shami at the Huntsman Center. He thought maybe it was Joe's large spleen that was trapping all the white blood cells and causing the low count so he sent us to see a surgeon about getting his spleen removed. He also wanted us to see a lung doctor about all the crackling he could hear in his lungs.

The surgeon did not think removing Joe's spleen was a good idea. He said he wanted a better reason to remove it than just because it was large and that it may or may not be trapping white blood cells.

The second doctor we started to see was Dr. Liou, a pulmonary doctor at the CF clinic. More testing began. One test I remember vividly was the test to see if he had CF (cystic fibrosis). They had him do a sweat test at Primary Children's Hospital. I don't remember exactly how the test was done, but I do remember his arm being wrapped in plastic wrap and we had to wait about 30 minutes before he could take the plastic wrap off. I remember sitting outside waiting for the 30 minutes to pass and how nervous and emotional Jonas was. All these tests were so hard on him mentally.

About August 2006, Dr Shami diagnosed him with autoimmune neutropenia. Which is a chronic low white blood count. Jonas would have to take a neupogen shot every three days to keep his white blood counts at safe levels. It didn't seem too bad. He just had to keep up with the shots and he would be fine. Or so we thought.

About September 2006, Dr. Liou diagnosed him with a rare and life threatening lung infection called Mycobacterium Kansasii. Jonas had to start taking 4 different oral antibiotics for this infection; rifampin, levaquin, ethambutol, and azithromycin. It would be a two year treatment because of how hard it was to get rid of an infection like this.

(Notice Jonas is wearing the same thing on Christmas 2005 and Christmas 2006.....he LOVED his UTES hoodie!)

Christmas 2005

He actually felt pretty good during 2005 and 2006. He started to not feel as great starting in 2007. That is when the never ending roller coaster began with his health. I will try and finish up his medical history soon. It has taken me so long to write this. I started it weeks ago. It's really hard to sit and think about all the details of Jonas getting sick, but I think its good for me to do.

December 2006 was our first Christmas in our new home. It was also the last Christmas Jonas was healthy. I remember he stayed up late with me to arrange the Thomas the train set the boys got that year. It was a perfect Christmas.

Christmas morning 2006

Santa came!

Jonas loved getting seasons of South Park

Ben has always loved to help build things

Jonas was testing out the cool track he built

A perfect Christmas!