Day Approaching 3 Years

Went back to work “for real” yesterday and it seemed like such a big step toward normal. Was annoyed by the same work stuff which annoyed me before - not to the same degree, though, so I guess the time away helped. Mid morning I was -really- happy in a unique way...the parts of my brain I use for pathology stuff (all nonverbal of course) has clearly missed having something to do. I wish I could have held onto that feeling all day but that’s okay. 

So here is the wrap-up version of what happened to Spouse:

Back in 2012  Spouse got acutely sick in a way I was scared might have been lymphoma: turned gray, dropped 20 lb in a couple weeks, fevers, night sweats. Workup at Prime Care then liver biopsy gave us a surprise diagnosis of cirrhosis with amazing numbers of neutrophils but at the time he had totally great numbers - MELD zero. May have had concurrent hepatitis A or –something- else because he was so acutely ill.  Anyhow, he had a background of significant childhood medical trauma (burns as a toddler, abdominal thing as preschooler, ER visits, dental traumas)  and found the workup so awful and painful that after diagnosis he said fine, will totally quit drinking but am not going back to any doctors. Which is what he did. (Well, except it was a bumpy road to sobriety as we all know.)

That worked fine for 5-6 years. Totally healthy. Two and a half years ago our oldest child moved into our NJ house to commute to law school from there and he moved in with her to provide support. (She found law school very stressful - as y'all have read more recently.) 

About a year ago he started turning yellow. He was afraid to get help because of fear that there was no help to be had: go home and get ready to die.  Couldn’t get a sustained dialogue going, plus our daughter was in school-related crisis in NJ so lots of distraction. About 6 months ago started getting bad peripheral edema. Still with fear, denial, avoidance. 

Got fever of 101+ on Saturday 4/13. Admitted to local hospital through ER - Lizzy (oldest child) stayed with him. Stayed out of actual ICU but was in the next level down with sepsis due to spontaneous bacterial peritonitis.(I drove down before sunup on Sunday 4/14.) Responded to IV antibiotics, normal saline and blood pressure support (low sodium, low platelets, systolic BP in 70s at admission) including IV albumin and weathered brief kidney crisis thought to be due to IV contrast on top of sepsis. I will forever and always be thankful and grateful to all the humans and powers that be, both seen and unseen, known and unknown, which helped him live instead of die.  Always.

Anyhow he had an amazing bounceback. No/minimal ammonia level; minimal ascites not worth tapping. Upper endoscopy showed small varices described as “not worrisome.” Discharged to NJ home Thursday 4/18. We stayed there getting him through the oral antibiotic and just generally getting his strength back – that was also pretty amazing.  As I helped him up the stairs of that house to the bedroom my joy at “we got OUT of the hospital!” was tempered by “even though I’m getting him up these stairs he may never come down them again.”  Well, not 48 hours later he managed to get down those stairs to the kitchen to feed his dog himself – had to take a two-hour nap afterwards before getting back UP the stairs and didn’t do it again that week but still.  Just wonderful.

We are now hooked into the local Transplant program and had the initial nurse phone call. Unless his discharge summary shows numbers requiring an earlier consult, we will be going to Rochester either the first or second week of June for the two-day initial get-into-the-transplant-program visit. (Picked those weeks because no worries about covering the service.) Two of our children are of compatible blood type to be Partial Living Donors and are very keen to try so the future is looking far more hopeful than it did a few weeks ago. 

Right now it’s back to work, business as usual, with him at home.  Even if it all goes kerblooey tomorrow I am so grateful to have made it this far. 

And now he's healthy enough that it's becoming tougher for both of us to hold onto our gratitude. Especially in light of having the three dogs under one roof. The combination of being back to work AND nursing him is a lot.  Everything was Pretty Much Do-Able...till on Thursday there was no denying I had a head cold. I'm almost over it now but still...that was one thing too many on an already full plate

I'm doing okay though...and "okay" is totally enough.