I’ve always tried to enjoy every phase of my brawl as best I can. I had 2 great days with a very special nurse, Lisa, during this latest stay, and she made my days with her as enjoyable as hospital days can possibly be. She went out and bought me a decaf 2% latte at Starbs and wrote YOLT on my cup! I adored nurse Lisa. All of my nurses were fab, butt one had a strange obsession. When introducing herself, she was really nice, butt she asked, “So where are your blisters? All over?” I responded, “Not much on my arms and legs. Some on my back, some on my” “What about your bottom?” “Well, yes there are a few there.” “Butt where are the most?” “I’d say my belly.” “Not on your bottom?” WTF
My sixth morning of confinement began at 4am “sharp” with the usual sudden blinding lights and a blood thirsty phlebotomist. Because of my IV being set in my right arm, blood draws were only taken from my left, and it was getting wrecked with continuous pokes. When the rounding doc visited me around 6:30am, he said that I couldn’t leave until I finished my entire regimen of IV Acyclovir and all of my blisters would have to pop and crust over. Now hold on, doesn’t that sound like a 1970’s quick and easy meal? Can’t you almost recall watching Family Affair, then suddenly an ad for “Pop N Crust” comes on with the ideal family gathered around the dinner table all stoked on the Pop N Crust sitting on their olive green plates?
“Gee whiz, Mom, this supper is out of this world! Can we have Pop N Crust every night?” A couple hours after the doc visit, my room phone rang and my fave PA, Martin (Dr. F’s assistant) called to tell me that the infectious disease doc had just reviewed my case, and I needed 14 days of the med. I was speechless and Martin could tell I was very upset. After spending Christmas 2012 in my isolation room during my transplant recovery, I am quite averse to celebrating holidays in the clink. The 14 day plan meant the Easter Bunny would have to find me on Helford Hospital’s 5th floor and I would spend my birthday in room 5221.
I hung up the phone and was on the verge of crying while my nurse unhooked me from my tree so I could take a quick one armed shower (my IV arm is wrapped in Saran Wrap to be sure it doesn’t get wet). As soon as the water hit my pocked body, I sobbed. This was the first time I have ever felt sorry for myself and cried since I began feeling sick in April 2012. I just couldn’t do it. I couldn’t spend the next 10 days and nights, including Easter and my birthday, locked in my hospital room getting poked in my left arm and enduring AFTS – Another F-ing Tummy Stick every night. Other than a relapse of fourletterworditis, I felt FINE, like I could climb a mountain or complete a triathlon. My vitals were valiant and I had no other symptoms except these f-ing spots. I pulled myself together, put on some clean pj’s and crawled back in bed. I was reattached to my med tubes, and just after my nurse left and peeled off her haz mat gear in my vestibule, my phone rang again. It was Martin, and he said I was going to be discharged that night with plans to complete my IV meds at home. Shut up! I couldn’t believe what I was hearing. Martin assured me that he had obtained approval from the infectious disease doc and Dr. F. I was to be discharged after my evening infusion. Euphoria! Martin rocks and rolls! Todd arrived, my last dose of Acyclovir was administered, my IV was removed, and I stuffed all my sh*t into plastic bags.
Probably no surprise that I don’t do Intro to Hospital Patienting. I do Hospital Patienting 2.0. I’m quite certain my nurses were commiserating amongst themselves about COH’s lack of a psych ward. Please transfer her – anywhere! I messed with my white board, and we booked it out of there before anyone changed their mind.
I felt like I was in a getaway car after robbing First National. And Todd thought he spotted a white Bronco in the next lane. We were Laguna Beach bound and no one was stopping us.
The following morning, my new home nurse, Joe arrived, started a new IV, and taught me and Rex how to take care of my new tubing and how to administer my infusions. I have these cool little pumps filled with my exact dose of Acyclovir that I hook up to my IV 3 times a day. Todd, Mychaela and Rex have shared duties to flush, clean and infuse my line. What I was hoping would be smooth sailing, has been a bit of a rough ride. Some welts appeared on my arm a couple of nights ago. After a few calls to COH Emergency, my pump pharmacist and Joe, everyone calmed down and I finally went to bed. The next day my IV just didn’t feel right.
That last infusion was very painful, and my med wasn’t going into my vein correctly. It was pooling under my extremely tender and swollen skin. More calls. Since it was now Easter morning, there were no local nurses available to see me. Soooo, Mychaela drove me back up to City of Hope, where their amazing Evaluation and Treatment Center nursing staff removed my “infiltrated IV” and replaced it with a new one in the other arm. Sounds rather militaristic, right? Not sure what infiltrated my IV, but it was really inflamed and the entire area was black with dried blood that had escaped my vein.
It’s going to be tough bucket listing during these 2 weeks, so instead of crossing off any adventurous items, I added a Bucket List link to my blog masthead. I’ve had lots of peeps ask about my List, so now they can click here or on the Bucket List link above to check it out.
Remember when my awesome neighbors joined my family in hosting a Be The Match donor drive on July 4, 2014 in our park? We ran out of swabs after registering 200 amazing and generous people. I reported earlier that a young lady was called as a match and she graciously donated her stem cells.
WELL, another of our swabbers received a call, and he donated his stem cells last week in San Diego. Matt Austin reports that he felt well enough to walk around the San Diego Zoo after his procedure. Thanks, Matt! You are and forever will be a life saver!