What We Are Going Through

This is a deeply personal letter our physicians urged us to write in support of our insurance claim for IVIG, which was denied multiple times by Cigna on the basis of coverage-policy and not medical necessity.   Their refusal to cover the treatment forced us to relocate to New England under another insurance policy.  Kris has not been able to bring himself to read this and it reflects a pretty dark time during the illness (This segment updated 1/29/2019).

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My name is Violetta and I am Kris’s wife.  I am thirty three years old and live in the Seattle area.  Prior to Kris’s illness, I was planning on returning to school to get a master’s degree and was writing children’s books in my spare time.  For the past eleven months, I have been his fulltime caregiver.  I hope to convey the extent to which his illness impacts us and the quality of our life through this letter.

When I met Kris, I thought he was the greatest catch on the dating website on which we met.  I couldn’t fathom how he was single.  He was a brilliant programmer, incredibly passionate about anything related to technology.  He loved maps and engineering.  He could talk for hours about any subject – I was certain I had met the smartest guy on the planet.  What drew me the most to him was how kind he was and how much be loved to travel, a passion we would share from our first days together until he became sick.  He had visited over 30 countries.  He had done over 80 scuba dives.  He would think nothing of riding his bike to the office 10 miles away and back.  If there was an outdoor activity, he had tried it and the gallery on his phone was filled with pictures of him on top of mountains.  Not only was he ridiculously smart, but as I got to know him, I discovered that his love of life was greater than anyone I’ve ever met.  He was profoundly compassionate and optimistic in ways I couldn’t imagine.  My years with Kris have taught me how to be brave and open my heart to the world.  I wouldn’t be who I am without his influence.

Prior to his illness, we traveled a lot!  After all, that was the hobby that brought us together.  When we were home in Seattle, we would take road trips across the country or spend weekends in other cities.  We took every opportunity we could to go abroad.  When explaining to people just how much Kris loved to travel, I like to make the joke that if you look at pictures of us on trips together, I look like I’m whining because I like to lounge around, hang around the hotel, and mostly “staycation” when we travel.  Not Kris.  We were always up early because you have to see everything worth seeing in the amount of time you have.  We would easily do 7 miles in a day, get up the next morning, and do 7 more.  Sometimes, I wished he was just a little less enthusiastic about seeing the world!  Ultimately, I appreciate having had the experiences that we did – I have seen so much thanks to him.  That is one of the ways he’s made me brave.  But, when you just want to lay on a beach and your husband wants to hike an ancient volcanic crater, sometimes you just don’t want to smile for the camera.

Kris tugged me along on many amazing adventures.  We went hiking and camping.  We explored nearly the entire west coast and the majority of American national parks.  We visited over a dozen countries together.  In our less active periods, he would teach me about things I had never known about, from nuclear engineering to how to do proper stretching to global issues.  He opened my eyes to a world I had never seen before and taught me to be more welcoming to it.  Not to mention, he made me a lot healthier, physically and mentally.  He allowed me to look at social situations in ways I previously was blind to.  He encouraged me to give freely to others.  Our life was rich in not only experiences, but in the deep bond we shared together.  He is my best friend and my greatest ally.  I find myself crying as I write this because what I am about to describe to you differs so greatly to what I remember.

It was around October of last year when Kris started developing cognitive issues.  He would find himself more confused and more unable to finish tasks.  His days would start later and he would finish his work a bit earlier, telling himself he would do more to make up for it the next day.  By this point, he had already stopped traveling for work because he would arrive at his destination completely wiped out and return home days early with the start of what seemed like a cold or flu.  We decided to take a trip to our happy place, Hawaii, assuming that maybe he was just having some seasonal blues or work burnout.  If you’ve ever spent a winter in Seattle, you’ll know what I’m talking about.  The rain never seems to stop.  When we got to Hawaii, something was amiss.  Instead of dragging me out of bed in the mornings, he would sleep in until early afternoon.  Instead of bugging me to go on a hike or to driving around to different beaches, he would just float for a little bit and lie on his towel.  By the time dinner rolled around, I found myself barely able to drag him out the door.  I thought that maybe he had come down with something and it would pass by the time we got home.

Shortly after we got home, things took a turn for the worse.  To be honest, I don’t even think that saying does justice to what followed.  Right after Christmas, he was hit with a severe fatigue.  It was as if he was unable to walk or move.  He would stand up in the morning to lift the blinds in our bedroom and fall to the floor immediately.  He started crawling to the bathroom.  Around this time is when all the medical visits that ultimately yielded very little information began.  We went to doctor after doctor only to be told they didn’t know what was wrong with him.  He got so bad that he wouldn’t be able to leave the bed for days, using what little energy he had to make it to the bathroom.  I had to purchase adult wipes and a shower chair for him.  The days that he could muster the strength, he would sit in the chair as the water washed over him, no energy to even use the soap.  After he got out, that was it – we would get him back into bed or onto the couch where he would spend the rest of his day.  On other days, I would wipe him and would help him get to the couch, he would be able to focus enough to watch some shows on Netflix.  By this point, I was handling every aspect of his care and of maintaining our household.   I was really bewildered as to why this was happening, but was optimistic that whatever it was, it would pass by his birthday.

Things started to get really scary.  He would get short of breath and started developing chest pain.  After rushing to the doctor, we were sent home without any answers.  The bizarre neurological symptoms came next.  He would see flashes of light.  There would be shooting pains throughout his whole body.  His face would get numb.  Standing would make him lightheaded.  He would fade in and out of consciousness.  I was certain that he was having a stroke so we went to urgent care and sent to the ER.  Again, no one could tell us what was wrong and unless you’ve experienced someone you love go through something like this, you can’t imagine the anxiety and terror that comes with this.  I was absolutely certain my husband was dying and no one could help us.  I have never been so scared and felt like I had been given up on by the world until then.  Unfortunately, that feeling has not left me.  I started wondering how this could he happening, why this could he happening.  He was just short of his 37th birthday, was active, ate healthy, and had never smoked a day in his life.  How could this happen to someone and no one could do anything about it?  It’s incredibly painful to have to write this because I’m forced to remember those horrible feelings I experienced when this all began.  It doesn’t get any easier with time.

He continued his downward decline over the following months and while his physical condition worsened, the cognitive ones started to create their own problem.  He had started to forget many of our memories of places we had been or things we had done.  He even forgot the names of places we used to frequent.  And I mean, these were places we went multiple times a week for years – you don’t just forget that, right?  Kris was never one to spend money frivolously on material possessions.  His belief was that if you want to give someone something meaningful, you give them an experience because the memory would be with them forever.  One of the most painful moments for me was the realization that if he no longer had these memories, the experiences pretty much wouldn’t even exist for him if I didn’t sit there trying to remind him over and over again.  Things that made our marriage special and meaningful started to get lost and it was disheartening.

By this point, he was already in a wheelchair when we left the house, and when we did, it was in exhausting shorts trips to the doctor.  He was no longer even able to join me for a cup of coffee, let alone a trip together.  The few times we tried to go short roadtrips around the local mountains, he would get so overstimulated and depleted within the first 20 minutes that I would be driving him in complete silence for the duration of the trip home as he laid there aching with onsets of his neurological symptoms.  When he becomes this exhausted, which can be triggered by what most of us would see as completely trivial events or interactions, he is no longer able to communicate.  His mouth is open and he mumbles, but he doesn’t form words.  Many times when this happens I have to start forcefully talking to him, even yelling at him, just to get any response to make sure he is actually still cognizant.  When someone stops talking to you in the middle of a sentence or starts mumbling gibberish, it’s hard not to think the worst, like that it’s a stroke or seizure.  The sense of isolation I sometimes feel being home with him all the time is intensified when I can no longer talk to him.  It’s almost like he’s not even there anymore.  Other than the constant fear and anxiety I have that he will die, the hardest part is not being able to even have a conversation with my best friend and the most important person in the world to me.

He would occasionally have weeks where he feels a little better.  Sometimes, we can venture out for a coffee together, but discover very shortly after, meaning as soon as we get to the coffee shop, that he feels like he’s had the wind knocked out of him and we have to get him home.  Every single day since December, I have wanted nothing more than to bring him to a hospital and just beg someone to be able to at least control some of the symptoms he has.  On multiple occasions, he’s suffered periods of incontinence and even defecated while lying on the floor.  Sometimes, I worry that I will have to put him into a long term care situation because his symptoms are so severe I don’t know that I am capable of caring for him.

Since December, I have devoted all of my time to taking care of him.  Making sure he has food, tending to his hygiene, making sure he can get around the house.  I take him to the balcony in our apartment and sit him in a chair so that he can get some fresh air.  We bought a stool for the kitchen in the hope that he could occasionally microwave a meal for himself, but sometimes just the motion of opening the box and opening the freezer causes him to become dizzy and lightheaded.  For months, he has had episodes of blacking out and forgetting where he is.  When he takes a bath or a shower by himself, I have to check in on him.  He has a difficult time recalling what day of the week and year it is.  He’s not been able to program or do anything but compose short emails to his doctors since the onset of this illness.  I’ve been responsible for setting up doctor visits, managing his prescriptions, and driving him to every single doctor for the past eleven months.  Flying to see the doctors we’ve since established relationships with has been tremendously tolling on the both of us.  The preparation of getting both of us packed, making sure we have all of his medications and monitoring devices, and getting him to the airport with his wheelchair is overwhelming.  (The wheelchair alone is over 50 lbs and I have to attend physical therapy so that I don’t injure my back lifting it.)  The experience at the airport is depressing because of the looks people give us when they see what looks to be a young man in a wheelchair with a medical mask on.  Kris has severe altitude sickness, so often times when we get off the plane, getting him back to the hotel is a nightmare.  I have to handle the directions, driving the rental car, and finding my way to wherever we are going because by this point he’s unable to speak.  I have to decide what to feed him because he doesn’t even have the strength to express his preferences.  When his tachycardia sets in, I have to sit there anxiously listening to the pulse oximeter beep hazard warnings at us, knowing his body is very stressed and there is nothing we can do about it.

In everything I’ve written, I feel like I haven’t even touched the tip of the iceberg in terms of how this condition has destroyed the quality of our life.  We tried moving to another apartment to save money now that we are living off disability and one income, but he developed a severe reaction to the off-gassing of the building materials and we lost thousands of dollars in moving fees, on top of the anxiety of having to get a lawyer and negotiating the move out with our landlord.  I had to box everything myself within a matter of hours.

On the few occasions that I have visited friends and their families, it’s almost agonizing because I know they will ask about my situation and I don’t want to inundate them with what we are dealing with.  Our friends are all traveling the world or starting their families, we feel like we’ve been pushed out of our social network.  His mother and sister live in New Zealand and are unable to help us in any way.  My own parents live in New Jersey and are also unable to assist.  Most of our friends live in other parts of the country, so we don’t have much of a support system.  Our one friend who has been able to help drives nearly two hours each way once a month to come help me take care of our pets and with some housekeeping I’m not able to get around to.  By the end of the day, I’m too tired to have hobbies or see friends, not that I feel I am even able to leave him more than an hour and a half at a time.  His fatigue and cognitive problems prohibit him from having any hobbies.  We’ve done our best to remain optimistic, but as his condition continues to deteriorate with the worsening of all of these symptoms, every day becomes more stressful.   Numerous doctors told us that steroids would be their fall back option if we were not able to find anything else that helped.  Upon their advice, we tried Prednisone and he ended up in the hospital with severe tachycardia and a general worsening of his pain.  That was the third time he was in the hospital within three weeks.  His symptoms continued for another week, resulting in another hospital visit followed by emergency IV hydration the next day.  His burning pain on his body has turned into a wildfire, consuming his neck, back, and arms.  He describes it as having gasoline poured on him as he lays on the couch crying.  I have been with him every moment through all of this.  It is truly unbearable to sit back and watch someone you love suffer so much, not being able to do anything about it.  It is horribly painful for me to know that there is a treatment so many doctors are proposing that could actually get him back to his life and we are being denied this.

As time goes on, I am losing my husband.  Earlier, while driving him in the car, our conversation stopped when he became too overwhelmed by the sound of my voice.  I drove in silence, crying, hoping he would not notice because I don’t want to do anything to make him feel worse.  We can no longer talk how we used to.  Difficult conversations we used to be comfortable talking about now seem too intense and too harshly real.  Talking about his advance directive and last wishes are too hard because they no longer seem like they are in some distant future we will never have to really worry about.  I’m losing the life I once had.  Our week is consumed with doctor visits, IV hydration, ongoing follow-up testing, and attempting to control new symptoms as they come. The rest of the time I am caring for him as if he were a senior parent.  Normal life seems foreign and obscure to me, I can no longer understand how people go through their days without the intense crippling anxiety I feel.  How do people have children when in just an instant, an illness could take everything away from them?   We were supposed to be buying our first house, developing our careers, and starting a family together.  We were traveling the world, he was succeeding at his career, and I was doing volunteer work.  We were living our best life. I can’t help but feel as if that’s all over for me now.  Instead, I’m thinking about his will and his advance directive.  How much is hospice going to be? Does it make sense to prepay for a cremation package?

How does one really navigate life knowing that there are entities out there that will withhold treatment from someone who desperately needs it?  Dealing with this appeals process has shown me just how much colder and darker the world really is.  I feel like we are both being condemned to slow and painful death.

I wish I could invite you over to come spend a few days with us, but I know that is not possible and that is the purpose of this letter.  I am desperate for Kris to get his life back.  I can’t imagine how agonizing it is to spend all of your time in pain, worry, and inside of the house, trapped in your body on the bed or on the couch.  It makes me absolutely miserable that he has to live this way.  I can’t sleep, find myself crying uncontrollably, and am terrified about whether or not he will be in my future.  If he is, what condition will he be in?  I am absolutely crushed and brought to tears when I see couples our age shopping together or talking over a coffee.  I feel like as time goes on, the likelihood of having anything that resembles normal will be out of our reach.  I wish I could tell myself that I think he will get better and that things will okay but when I wake up and find him unable to get out of bed, when I’m having to put his shoes on for him, that all seems tragically out of reach.  I know that without an intervention, he is going to get worse and so will I.

I am begging you to please give him every consideration in pursuit of IVIG.

Violetta Price