Navigating the path

It’s hard to know where to begin with this update, but let’s start here.  In recent months, Kris and I have visited the best of the best neurologists who all prescribed him IVIG/Intravenous Immunoglobulin/Immunotherapy (referred to as IVIG from this point forward).  Our prescription was denied, and denied, and again, denied by our insurance company, Cigna.  Cigna, Juniper’s main self-funded plan, believe that because Kris’s condition isn’t yet on the FDA list for diseases covered by IVIG, he doesn’t need it.  Never mind the fact that Cigna repeatedly denies treatment for many of the newer FDA-approved diseases stating they’re still too “experimental” or that a tremendous amount of medication prescribed isn’t being used for it’s FDA intended purpose.  No, the real reason they don’t want to approve it is because it’s insanely expensive.  (We have 3 active prescriptions from 3 doctors going, with 2 more who want to prescribe it, just to give you an idea of how well-researched this all is and that This IS a medically necessary treatment!) None the less, we started to reach out to lawyers, advocacy groups, the IVIG manufacturer, and Kris’s employer, Juniper Networks’ HR team.  We even reached out to KOMO News and Washington State Insurance Commissioner.

Pretty much everyone told us the same thing –

After months of being warned by our doctors, Emergency Room doctors, Cigna patients, and Infusion centers, we clearly understood that without some sort of divine intervention, Cigna would never approve the IVIG and that if there was any way we could switch to a different insurance company, we should do it IMMEDIATELY.  Doing what any desperate and motivated people would do, we reached out HR and discovered that open enrollment was coming up in just 3 short weeks.  We were told that Yes, we could switch to a Blue Cross Blue Shield policy in Massachusetts, but guess what, we have to go immediately because they can’t register us without an address there.  So – we did.

Within 2 weeks, I gave away all of our personal belongings – years of souvenirs and artifacts of our lives together – to friends.  After years of collecting Starbucks mugs from destinations we visited together, I parted with as much of my collection as I could to lighten the load.  This collection has since been discontinued, so I will never be able to get it back.  We downsized and downsized until it hurt, finding both of us crying over things we knew we didn’t want to get rid of, but knew that maybe a friend or stranger could enjoy it just as much as we did.  Let’s just say that the sadness and stress of everything we have been going through for the last year had been compounded by getting rid of everything we owned and moving away from our home and support system.  Some very generous friends offered to drive with us on the trip because they knew it would just be me doing the driving – Kris hasn’t been able to drive since Christmas 2017.   And so, we squeezed everything we owned into a 5×8 Uhaul trailer with the help of friends.

Just days before we were meant to leave, Kris’s symptoms really, really started to alarm me.  When I say that, I find it perplexing to say because over the past year, his decline has been so bad it’s really hard to imagine that could happen, after all, he wasn’t able to stand for 2 and a half weeks not long ago-  but it did.  He stopped sleeping for about 2 weeks, stopped eating for 3, had severe tachycardia which wasn’t improved by his hydration IVs, severe neuropathic pain, and some other alarming symptoms that I will keep private for the time being.  We already had instructions from multiple doctors telling us that if he got “really bad” or “worse,” we should go to the Emergency Room and ask for something called a Rescue Dose of IVIG.  In fact, it was noted in his chart that this should be done and yes, we were warned that insurance might not pay for this.  When we got to the hospital, we explained everything for what seems to me the hundredth time to the staff and after a couple of hours, a neurologist called to have us admitted.  They administered 1/5th of the Rescue Dose that evening.  I was crying tears of joy, updating my Instagram account, telling my friends that we were able to finally just get him one dose to temporarily halt this illness. I really can’t convey the relief that we felt – for the first time in a year, I felt like we had a future again.

Well, the next morning, no one showed up for hours and we started wondering when we were going to finish the rescue dose.  A doctor came in and explained to us that Cigna wasn’t going to pay for this and that he couldn’t justify keeping us there.  We were floored.  And crushed.  If you can remember the most disappointing day of your life, well, that was it for us.  We were discharged and sent home.  I finished packing everything up, put Kris in the back of the car, and with a friend, just drove for 7 days through the ice and snow.  The temperatures were freezing and some moments of the drive were downright terrifying.  On the road, we reached out to Juniper Networks HR literally begging them, crying, asking them for help.  They told us they wouldn’t.

Arriving last night, I sit here now in our mostly empty apartment, which actually has a really foul smell of water damage or something, realizing that tomorrow I have to continue driving around and looking for another apartment that is just a little more…comfortable, to put it nicely.  One is an hour away, another is 2.  Then I have to pack everything back up and move it again, by myself this time.  My back is killing me and I had to do a round of antibiotics during the drive for what was probably a stress-induced infection.  Blood is also coming out every time I blow my nose.  Honestly, I’m not great, but I can’t even imagine what Kris is feeling.  His pants are falling off of him from the dramatic weight loss and his eyes are kind of ghoulishly sinking in.  He’s developed some small lesions on his chest.

So, we thought that things would change once we got here, that we would have this new policy and that immediately, we could just have our doctor continue the prescription for IVIG.  Well, turns out the situation is actually quite absurd, redundant even   No one explained to us that in order to continue to see our specialist, we need a referral from a PCP.  That seems easy enough, but for some reason, the entirety of New England seems to not have any PCPs available until…January.  I found one place that could get us in, in about 2 weeks.  So now, we are both without our prescriptions, medical care, and have no ability to continue to apply for the IVIG until we can find a PCP – something that sounded absurdly easy until I started making my calls this morning.  I hope I have better luck tomorrow between my apartment tours, he hasn’t had a hydration IV since we left.

I keep hoping every day that things will turn around for Kris, turn around for us.  I don’t feel that I’m doing enough.  But I don’t know what else I can do to try to help him.  I’m grasping at straws here.  I’ve written to my senators, contacted the news, call anyone and everyone I can – If you have any other ideas, no matter how crazy, by all means, send me an email.  Feeding, bathing, transporting, making calls, begging for his life – none of it is solving the problem and I can’t express how much pain this is causing me to see him like this knowing I can’t do anything.  I grew up in a society that always told me that you can do anything that you set your mind to.  I want so badly to believe that.

But as for this situation, I can’t find any peace with it – he should not have to jump through all these hoops just to get the medical help he needs.  I am watching this person I love suffer and I would give anything to know that he will be able to go on loving life, being able to go for walks, bike rides – just to be able to do things he once loved that people take for granted.  If there was ever a person who didn’t take things for granted, lived life to the fullest, that was Kris.

I am so grateful to all our friends who have stepped up to offer help.  It is so appreciated, thank you, thank you, thank you so much.  Please keep wishing us the best as we continue navigating this path as it unfolds before us.