Day +57, Epiphany, Uncle Davey, and bird feeders

Day 57

Things are chugging along nicely lately, which has been a relief. Been feeling pretty good in most departments. I've had a little trouble sleeping with the prednisone, but GI, appetite, and energy levels are good. I go into the clinic every Monday and Thursday, and occasionally, one or two other mornings for blood draws to check CMV and Cyclosporin levels. A cool thing about doing transplants in 2017 is the ability to administer IV medicine to myself at home through my Hickman site. Without this, it would be daily trips to the clinic or long hospital stays. The SCCA uses a home-infusion company, Coram, which talk with my team and ship me everything I need for care at home. They loan me a $2000 small pump, and supply the tubing, flushes, and IV drugs. Most week days I get 2-3 calls a day from either my Orange team at the SCCA or Coram trying to coordinate deliveries and dosing changes. Coram is super handy, but resource intense, like all of medicine. Since scripts change so fast, they only ship 3-4 days at a time, and each shipment comes over from the Eastside in a box lined with Styrofoam and a bunch of plastic bags and ice packs. I asked if they had to ship it with the packaging and the ice, because it’s piling up in the basement, and they said yes, by law, they need to follow the directions on the medicine, and it says to keep refrigerated. I could pick it up in Kirkland, an hour away, if I wanted to avoid it. That’s not going to happen, so I’ve resigned myself to recycling all the Styrofoam at a special facility in Redmond once the shipments end. Daily routine is Gangcyclovir infusion at home in the AM during breakfast (1 hr infusion to attack the cytomegalovirus (CMV) virus that has flared)), another infusion of magnesium (2 hr) in afternoon at which some is during a walk, then play with alpen til dinner with breezy, put alpen down at 7:30, read then watch a few shows before bed. I try to drink 3 Nalgenes of water a day to keep things moving through the kidneys, so that’s a constant part of the day. Cyclosporin is my main immunosuppressant to combat GVHD while my body gets used to the new blood cells floating around. It has a few side effects though. The main side-effect is that it flushes magnesium from my body, and magnesium is a tricky one to replace because mag pills notoriously cause diarrhea. Hence the daily infusions of Magnesium, which doesn’t have any GI side effects. However, my team wants me to eventually be able to get all of my Mg replacement by pills, so we started this week by lowering my IV dosage and supplementing with twice daily pills. Not all patients can handle replacing their Mg by pills (it adds up to 10-15 pills a day), but we’ll see how I do. Other fun Cyclosporine side-effects is dark, dense hair-growth on the face regardless of age or gender. It often causes women, and even toddlers to grow mustaches. Luckily I already had a beard, but my mustache and eye brows are now the densest, darkest and fuzzy-est they’ve ever been. The hair on my nose is even getting in on the game—didn’t even know I had hair that could grow there—and has created a short fuzz. Just a weird moment in time for my hair-life: none on my head, more on my face. We’ll see how long it sticks around.

Outside of the medical stuff, Briana and I have been keeping busy and time is flying. Last weekend, we hosted her family for a mini-Christmas celebration, which conveniently fell on January 6^th, the Epiphany, the 12^th day of Christmas, a holiday celebrated more frequently in some European towns.  This meant we could keep the Christmas decorations up a little longer, enjoy a waffle brunch, open a few more gifts, and top if off with a Briana’s excellent galette de rois.

Alpen continues to grow and become more interactive every day. He can now sit up and entertain himself—he even can grab his own toys out of the toy bin. I’m really enjoying this stage: he can sit-up, but can’t crawl yet, so he can’t get into too much mischief. His naps are on schedule and he’s been going down to bed quickly at night. He also is LOVIN’ solids. It’s been fun having in the high-chair at dinner and giving him bits of any soft foods we’re eating. He doesn’t seem to care if he’s eating squash or brussel sprouts, he just chomps it down with his gums (no teeth still) and smiles and grunts for more. Dinner time is when I most feel like I have a family, with the 3 of us sitting around the table sharing the same food. It’s been really nice that he normally joins us at the table now.  

I also had a visit from my Uncle Davey over the Epiphany, who lives in Columbia, MO.  His good humor and MacGyver skills were nice additions for the weekend. He accompanied me to some visits at the SCCA and figured out a way to get the squirrel baffle on my shepherd’s pole to protect the peanut feeder.  My bird feeding station in the backyard is finally at a good point, and watching creates many nice mini-breaks in the day.   

Thank you to all of you who have sent cards or gifts since the last blog post! 

- Derek

The Epiphany waffle brunch with Myra, Byrne, Mike, Alpen, Briana, and me (Peggy taking the photo)

Notice the squirrels are stuck to watching from the railing. Left feeder is the one with the squirrel baffle. The center feeding station has black sunflower seeds in a squirrel proof feeder, a hummingbird feeder, and a suet cake filled with cayenne pepper suet. Birds can't taste spice, but rodents avoid it. A good option for people who don't want to risk attracting rodents or having squirrels eat all the food!

Alpen in his born to be wild (anti-farmed salmon) shirt

Don't know he made this face

Bob Ross painting with Myra