Marburg Variant Disease – Saving Zac

Saving Zac June 17th 2009 I received a call from my son Zac, then 26 years old. He was visiting a girlfriend, a popular Disc Jockey with a Reno radio station. He had flown there from Boise on June 12th to visit her flying out of Boise. Zac was always afraid of flying. Zac was one of the spectators at Flugtag airshow in Germany the day the planes crashed into the crowd. He saw many burning bodies. He was only five the images always stuck in his head. The horrible memories of that day made him very nervous before getting on a plane.

Zac had called me every day since he had arrived in Reno and I could tell something was wrong. On the 17th he said his leg wasn’t working right. The girl he was visiting thought he was faking it. Not sure I will ever forgive her for that. I told him if he was really worried to go to the hospital. He went to a “doc in the box” and the doctor told him to see a doctor when he got home. On the morning of the 20th he was scheduled to fly home to Boise. He called me, and said “Mom I can barely walk I need someone to pick me up today and take me home”. I immediately got on the phone with my sister, his aunt Kari. I asked her to pick him up and take him directly to the hospital. She did.

Long Road and Mis-diagnosis

Kari picked Zac up and got him to the hospital. She called me crying. The doctors took and MRI and that Zac had Multiple Sclerosis and that he needed to a neurologist. MS! I remember how scared I was with that diagnosis; little did we know how really scary our journey was going to be. Kari took Zac to his home and got him settled in. I got there and took one look and knew that there was something more going on. He spent the night at his house. Zac Struggled to stand. Climbing the 5 stairs from the basement where he lived with 2 other band members was impossible. His mind wasn’t right. He knew very few details about the trip he had just taken. My mom lived in Boise so I packed Zac up and took him there with me.

The Next Couple of Days

The next couple of days he was so quiet and kept saying “Mom I will be fine, I just want to sleep”. The neurologist in Boise put him on IV steroids for the next 3 days. We were scheduled for a spinal on Tuesday. Mom and I took him to the hospital where he fought us the whole way.

He was very scared, he tried to walk out of the hospital holding on to the walls to steady himself. He was out of his mind and couldn’t understand why he needed to be there.

The nursing staff was horrible. They couldn’t understand that his mind wasn’t right, but the law was on his crazy brain side Because he was an adult, so we left the hospital. Zac wanted to go home so I took him back to his house. He then tried to drive his car. Zac showed up at his work for a shift and had no memory of how he even got there. I again packed him up and went back to moms. This was the 24th of June, we never left him alone again.

Frustrations – Medical Professionals Couldn’t Understand

The doctor rescheduled his Spinal for the 25th. We got him in the hospital and Zac again attempted to leave but; during a semi-lucid moment, I had him sign over power of attorney so he could have more procedures done to rule out other diseases. Zac couldn’t even remember why we were in the hospital and the hospital couldn’t understand that he was not in control of his mind. The nurses were mean, saying he is an adult man and he needs to grow up and face the fact that he needs this done.

We knew from the first MRI that he had a 5 inch lesion on his spine and a couple of massive lesions on the right side of his brain, but they insisted that he needed to grow up. We tried to tell them that he wasn’t himself and that his mind wasn’t working right, he didn’t even know what day it was or that he has just returned from a trip.

Zac Was Rapidly Declining

By the 26th Zac had lost the ability to urinate on his own and had to have a catheter. He was also struggling with constipation. We continued some other tests in Boise and headed back home to the Mountains in Hailey, Idaho. Zac had now lost the use of his left arm and all of the feeling in his right leg as well. We got a wheel chair and Chet and I began lifting him in and out of bed etc. He was losing the use of his right arm, he could no longer pull on his pants or button his shirts. I let him rest but could tell the steroids weren’t working.

We took him to St. Luke’s Hospital here in Hailey on July 2nd. Zac was suffering with severe constipation and now couldn’t hold a sandwich in his right hand. He was so frustrated. The doctors here admitted him and gave him another round of steroids. After a couple of days we headed back home. Zac’s memory was fading quickly. He knew who we were and his friends when they visited, but within seconds after their departure had no idea they had been there.

Idaho Home Health had been ordered for us to monitor his vitals and access him for therapy. Bonnie, the head of Idaho Home Health and someone I knew well, couldn’t believe the rapid progression of Zac’s illness, Bonnie suggested there was more going on and suggested we try to get Zac into the rehab hospital in Boise.

Finally Someone Believes Me

July 4th came and he was about the same, couldn’t feed himself, walk and I believe was losing his eyesight but he wouldn’t admit it. On July 6th we ended up back in the hospital again, severe constipation and more confusion. We were fortunate enough to get Dr. Cortney Vandenburg, who also questioned what was going on with Zac, she also felt that he needed to get into rehab if this was MS so she sent us to the Elks Rehab Center in Boise. We were also talking to the neurologist in Boise, that ordered Plasma Pheresis, a 14 day therapy of plasma exchange that had shown some success with progressive MS cases.

We arrived at the Elks on July 6th.

They checked us in and put together a plan for how they were going to help Zac. The next day the put the huge port in zac’s neck for the plasma exchange and started therapy.

Zac’s language had changed over the last few days, he was cussing more and in a lot of pain, screaming pain. We had to load him up every other day and take him to St. Luke’s Hospital in Boise for his procedure and then he would go back to the Elk’s for therapy. He was tired and so confused.

The therapist tried to work with him but his mind and memory were so far gone that he couldn’t remember what they were doing from one time to the next. My Mom, Sister and I never left his side, staying with him night and day on July 10th Zac looked at me and said “you’re not my mother” and truly didn’t remember me or anyone else around him.

Why Won’t They Admit They Don’t Know What’s Wrong?

After 4 weeks at a Boise Rehab center, where they didn’t allow his neurologist to visit. We only saw the rehab doctors a total of 1 hour and 30 minutes the whole time we were there. The Staff decided they could do no more and it was time for Zac to go home. For a month I had set in the hospital room doing nothing but research, I knew Zac didn’t have progressive MS and I couldn’t get anyone to listen.

Zac’s Dad came down for a couple of days prior to us leaving, and we met with the doctors and everyone tried to talk me into putting Zac in a nursing home. I was tired, furious, frustrated and exhausted. Spending the last 6 weeks trying to figure out what the hell was wrong with my son and no seemed to know or really appear to care. I drove back to Hailey and I actually visited Blaine Manor, our local nursing home. This was not the place Zac needed to be. He needed more, Zac would just die there.

Headed to University of Utah

I packed my bag, told my mom and sister that were at the Elks that we taking him to the University of Utah Hospital in Salt Lake City. I wanted to go there weeks ago but everyone kept assuring me they knew what they were doing. My sister, Kari jumped in the ambulance with Zac who was screaming in pain, and headed for Salt Lake City where I met them. The last word that came out of Zac’s mouth started with an F and that was the last word spoken for months.

There he was diagnosed with Marburg Variant Disease – a variant of MS. Marburg Variant Disease is so aggressive, usually attacking the brain stem and causing patients to stop breathing. I believe that, if we had taken home or put him in a nursing home, he would have died within a week.

The disease had just entered the brain stem the day we got to Utah. His left eye went completely sideways and he couldn’t see and the first brain stem lesion showed up on the MRI. The doctors immediately descended upon Zac with the lead doctor, an amazing woman named Dr. Dana Dewitt, knew right away that something more was going on. She said “this is a very sick boy”, I want full attention on him now.

Dewitt ordered another spinal tap. But they couldn’t do it because Zac’s spine was so inflamed that is entire spinal column would have collapsed if they had. They did another MRI and it was pretty obvious to her what Zac had.

Dr. Dewitt showed me the new MRI’s. I became so weak in the knees that I nearly fell to the ground. Zac’s entire nervous system was nothing but massive holes and lesions everywhere in his brain and spine. It was pretty obvious to our lead doctor, Dr. Dewitt that Zac had Marburg Variant of MS.

Finally a Real Diagnosis!

Now that I had a real diagnosis, I got back to my research while sitting in the hospital day after day. The problem was that it was so rare that there was no research to be found. Marburg Variant Disease was classified as a variant of MS because I think they had nowhere else to put it. It is a rapid demylating disease that causes the body to destroy the nervous system and then eats its way through the brain leaving enormous holes and brain damage.

I asked the MS society for more information and they sent me a Wikipedia definition and a few X-rays from dead people. Not real encouraging!!!!. Again I researched for hours and hours trying to find something to help my son who was now almost lifeless while trying to run two businesses and worry about my husband, my younger son Nash who was only 12, my 3 Saint Bernards and 4 cats. Fortunately my Mother, Zac’s Grandma stayed with Zac and I and my sister came up to relieve me for a few days at a time. Chet immediately took to the task and after weeks of being alone, managed the family very well.

Zac started on a chemo treatment called Rituxamab to halt the disease. I was finding studies and different therapies from around the world for radical demyleting diseases and was constantly consulting with the doctors, interns, nurses, aides and anyone that would listen to me. The Ritux was to be given 4 times, which seemed to be the magic number of treatments to halt the disease.

Doctors Can Be Such Jerks

Dr. Dewitt left on vacation 2 weeks into his treatment. A substitute neurologist came in and decided that after two treatments that I should find him a nursing home and go home. I told him this doctor that based on my research Zac needed 4 treatments, he told me I was wrong.

My Family started on a campaign and talked to all of the nurses including the head nurse. I was not taking my son home to die! Just like at the Elks they just didn’t know and Zac needed at least 2 more treatments. The nurses all banded together, Dr. Dewitt was called on vacation and she ordered that Zac stay at the hospital for 2 more treatments. The Sub doctor came in and sarcastically said, “You are not a doctor and I am a realist and this is it for your son and you better face the facts” and turned and walked out of the room. Zac got his next two treatments which I know saved his life.

But now that his life was saved how were we going to get Zac back? During our time in the hospital, I found studies on Vitamin D Therapy. Zac level’s were very low, at one point measuring 14 when they should have been 80 to 100. I Talked to the doctors and Zac started on a very high dose 50,000 iu per day. Again this was questioned and one intern tried to take him off of it because he might get Kidney stones, which would have been the least of our problems! Of course I also threatened that if they didn’t give him Vitamin D, I would have to put 50 over the counter pills down his throat each day. Another doctor agreed and he was put back on the Vitamin D. As Zac’s D levels came up I believe he started to improve.

The entire time Zac was at the University Hospital he would scream in pain. He couldn’t communicate with anyone but for some reason, and I think it still shocks the staff he would always take his pills and eat for me, my mom and my sister. Zac always ate with his eyes dazed or closed. We constantly talked to Zac. The day before we left the hospital I asked Zac to kiss my cheek and to my surprise he did.

Heading Home

We took Zac home on Sept. 9th. He screamed the whole way home in pain or something– we don’t know why he screamed he just screamed. We got him home and Chet, who loves Zac so much helped us get him in and get him settled. While we were gone Chet had built Zac a beautiful roll in shower so we could bathe him and care for him. Zac was to have monthly blood tests to make sure the disease was not progressing. We knew that in 6 months he would have more treatments. I also knew that if he was not improving we would not continue treatment. Because we can’t find any research on the disease or survivors we were forging our own destiny.

Bikeathons and Family Support

While we were gone Zac’s little brother Nash put together a bikeathon to support his big brother. On September 12th people came from all over the valley to ride the 25 mile round trip to Ketchum to help us with the financial burdens. The event was so emotional. We brought Zac in his wheelchair where he just laid there and screamed.

People got out of vehicles and just hand us money, others told stories of how much my son meant to them. How he had helped a daughter who was being bullied, or taught someone how to play guitar, how he was always there for his friends. I always knew I had a great son but he touched the lives of so many before he got sick – it makes me tear up right now. A short time later his good friends held a spaghetti feed and concert to help us. We were able to buy him an air bed, an electric car chair which made it possible for me to take him places, and other adaptive things to improve our lives.

When we left the hospital Mom came home with us. There was never even a question she just did it. Our house is very small and she lives in what we call the dungeon, which is half of a converted one car garage. From Sept. thru most of November Zac we got up everyday to be with the family, bathed, toileted etc. He never uttered a word except to scream in pain which would sometimes go on for hours.

Holidays Bring Miracles

Early November he started to move his right arm. My Mother, Chet, Nash and I would just talk to him for hours and hours. Then right before Thanksgiving he said” OK” and a few days later “I love you”. I put a fork in his right hand and he started eating spaghetti. His eyes were open more but still pretty dazed.

Thanksgiving came and he was smiling but still having lots of screaming pain. The hardest part was that we exercising his body everyday as well so that he wouldn’t atrophy. And we continued whatever therapy we could think of to help him. More words started to come. A week before Christmas he was sitting in the lounge chair with Chet and he started singing. It was only a few minutes and a few words but he had a big smile on his face. More words started coming from him but he still didn’t know who we were. But then we got our Christmas Miracle, on Christmas day he called me ‘Mom’ and he sang all day; it didn’t all make sense but he sang. He sang I love you and Merry Christmas, over and over again. After Christmas day he knew all of us again.

On New Year’s Eve, he spoke German all night. He went to German schools for 5 years. And then on New Year’s Day he stopped the German but added more words to his English vocabulary.

New Year – New Hopes

During the month of January I was able to give him an electric razor and he started shaving himself. He started to kick his right leg. Winter was long but it gave us lots of time to work with him. March came around and he was able to answer small question but had no memory. If Grandma walked out of the room he would not remember she had ever been there.

Back to The University of Utah

We went back to the University of Utah in March and they felt he was ready for rehab. Rehab was good but not great because he had no short term memory he couldn’t remember what to do. They loved him because he is so loving and he told everyone constantly how much he loved them. We were there a month, he had a Baclofen pump put into his abdomen to help with muscle spasms while we were there.

We returned home on April 9th 2010. The pump worked well for a while until one day his scar exploded and massive amount of liquid came oozing out. Back to the U they removed the pump, cleaned it up and put it back and sent us home. A month later we were back at the U because this time the scar opened massive blood clots came gushing out. They took the pump out and found that he had an infectious disease, a form of dyptheria, which may have been a blessing because we met Dr. Kriesel and infectious disease doctor.

New Ideas About MVD

I think that he is on to something about Zac’s disease. No one knows why Marburg Variant Disease attacks the nervous system. Dr. Kriesel has a theory that Marburg cases, and possibly other cases of progressive MS, are triggered by a virus, much like Polio. After watching Zac get so sick and debilitated, this makes sense to me. In Fact the similarities between Zac’s case and polio are uncanny, except that polio doesn’t exist in the US anymore. Like Polio, Zac was sick with a bad cold a few weeks before his trip, then he was completely stressed out by the flight. Couth that have been the trigger? I don’t know if we will ever know the answer because unlike polio we only have Zac and not an epidemic.

Back to Saving Zac

As you can tell after 6 months there was no decision to be made about Zac’s future, my son was coming back, little by little but coming back. We continued treatment and in 3 weeks are going back for another Chemo treatment and a rehab evaluation to get back into the rehab center. Zac has regained the use of his right arm, old memories, his right leg, and is starting to move his left side arm and leg.

His short term memory is improving. He is now engaging in conversations, can add like crazy, play Yatzhee, Wii bowling and games, loves Uno, feeds himself, and asks for things. This has all been in the last 6 weeks.

He dreams of the day he can play his guitar again. Zac is never left alone, we talk to him, engage him, he does horse therapy, has an amazing OT that comes 2 hours a week. We are bringing him back to us.

Zac’s Daily Routine 2010

I get him up in the morning, exercise him, feed him and get him ready for the day. Monday thru Friday I leave at 8am and grandma takes over until 4, she plays with him, exercises him. watches movies and talks to him, when I get home I take over again getting dinner, playing more games, wii bowling with zac and grandma, around 8 we go into the bathroom for bowel care, and a nice warm shower, we then get ready for bed and exercise again.

On Tuesday’s Zac comes to my center to wii bowl with my seniors and another man with brain damage. On Saturday we usually go for ice cream or lunch and on Sunday we go out shopping or something. Zac rides Charlie Brown on Thursdays at the Sage brush arena. Before Zac got sick he was a happy go lucky guy, extremely talented musician and a good son and friend to everyone. Zac loved life, held down a good job and contributed to society. He deals with the hand that was dealt to him with the same zest that he lived his life. Zac is happy and thankful for everyday.

I truly believe there are more young people like Zac that have just disappeared or been killed in accidents because of this disease. They lose their mind so fast that they either fall off the face of the earth or drive off and kill themselves. Watching Zac lose his mind was one of the toughest things I have ever gone thru. There was no rationalizing anything with him and he couldn’t remember from one minute to the next. You hear about young people all the time where family members say they were a good kid we just don’t know what could have happened to them. This disease hits people between 17 and 30, they usually live alone.

My Family is determined to save Zac. He will be a statistic of one but we hope to help others. We don’t know our future but we know it has Zac in it and that is all that counts.

It is now 2019

It is now 2019, Zac has had little victories along the way. We moved away from Hailey and now live in Nampa Idaho. I had to leave my career because three more family members have gotten sick with other diseases, but that’s another story.

Our lives are good, Zac is happy, but still very disabled both physically and mentally. He knows more than he can articulate but continues to try. He loves doing art work and therapies with me each day. The medical profession really can’t help anymore and insurance won’t cover anymore therapies in home or at a facility. We as a family continue to work with him and live our lives the best we can.