Monday, December 13, 2021

He has a name

His name is Kevin.  


This note stabbed me in the deepest recesses of my heart.  His name wasn't mentioned.  No person took the time to personally sign their name.  Not his transplant doctor, nor his transplant coordinator...not even the social worker for the transplant team.  But honestly, they completely wrote Kevin off a while ago.

My beloved husband, partner, best friend, co-parent, advocate, counselor, personal comedian, financial supporter, lover, masseuse, workout partner, dog walker, errand boy, and much, much more died on 11/28/2021.

I am not the only one left behind.  I have six children.

Kevin's death was unexpected. One can never mentally prepare for the loss of a spouse, I believe, even if the spouse is ill for a long time. I have had thoughts about this possibility since 2006 when we found out Kevin only had one functioning kidney that wasn't really functioning as it should.  On March 22, 2018, Kevin received a beautiful gift from a family friend - a healthy kidney.  

Kevin and all the family members living at home were diagnosed with COVID on November 9.  He contacted the transplant team immediately.  You might think that someone with a compromised immune system might be carefully watched over by the transplant team.  They took more than a day to respond.  Their response? We're sorry to hear you have COVID.  He mentioned to them that our family doctor recommended getting monoclonal antibodies.  Their response? Great idea.  He asked if they could help him get them.  Their response? We'll send you a link.  They sent the link a day later on November 11.  We found the closest location to receive monoclonal antibodies was Crookston, MN, which is 260 miles away.  He asked if there was any way he was eligible for closer treatment or in-home treatment.  The answer was sorry. That was the LAST contact he had with the transplant team.  Our internal medicine doctor, on the other hand, insisted on daily telehealth visits.

He was not able to get into the clinic that administered the monoclonal antibodies for 5 days because of the high demand.  We drove up through a winter storm including 45 mph crosswinds with blowing snow.  It was a 13 hour day.  He immediately had an increase in symptoms.  Up until then, he had mild symptoms.  We got home that night and he felt really, really cruddy.  He barely slept that night.  He continued daily telehealth visits with our internal medicine doctor who put him on every medicine he would have received in the hospital.  Kevin did not want to go to the hospital because we had COVID at home and would be barred from seeing him.  He didn't want to be intubated.  He didn't want to die alone in the event COVID won.  We got all the right meds.  He had oxygen.  His CPAP was outfitted with a special bleeder so he could sleep and receive oxygen.  While he was at his worst from 11/18 - 11/22, he started turning the corner.  His O2 levels were better, we could reduce the O2 rate, and he could stay awake, and have conversations, get up to go to the bathroom, and eat.  By Thanksgiving, he looked better.  He was complaining how wretched he felt not having a shower for a week.  Our doctor was encouraged because by 11/28, he was maintaining good oxygen levels on room air. No more oxygen.  He was smiling.  But he felt gross and wanted to take a shower.  He had an appointment for lab work on 11/29. He really felt he couldn't go anywhere looking like he did.  So he went up to take a shower.  Everything sounded normal.  You know how you get to know your partner's patterns.  First I heard the toilet flush.  Then I heard the shower turn on.  I heard the shower run for a few minutes.  Kevin liked a hot shower and waited for the hot water to make its long journey from the basement water heater to the second-floor bathroom.  About five minutes later, I heard a loud thump.  I'll spare the rest of the details other than the fact his death was determined to be of natural causes (likely a heart attack, cardiac arrest, etc.)

On Monday, after Kevin died, as one of Kevin's caregivers I had access to his Mychart account.  I sent a note to Kevin's transplant doctor that Kevin passed away.  It was not negative. I just wanted to let them know.  My access to Kevin's account was immediately terminated. I know they saw the email, because how else would they have known to close his account?

I'm so deeply disappointed with the lack of compassion from this group.  He had a name.  He was my husband, my kids' dad. his parents' son, his siblings' goofy brother, a Scoutmaster, an employee, a lector, a community leader, a friend to many, and he will be missed. I lost the most important person in my life.   Please have some HUMANE person at least sign their name on cards like this so it doesn't look like some robot sent it and acknowledge the person who died.  Please remember that the person reading the note is grieving is not a robot.  

In case you need help, here's what you should have written:

We are so sorry for the loss of Kevin.  We know he was an important part of your family.  Our prayers and thoughts are with you during this difficult time.  

THEN SIGN YOUR NAME. 

1 comment:

  1. There are no words fitting enough to express the profound sense of sadness at how these events played out. There are no words adequate enough to express how sorry I am that the medical system failed you so thoroughly. All I can pray is healing for your family and for your heart. Yes he had a name and yes he has a name – Kevin - a name so worthy of honor, respect, and compassionate care.

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