Mick McKellar Update--Day +46
Missed another day, didn't I? The hazy light streaming through the window of Rochester Methodist Hospital, Room 9-303 does not betray the 70+ degree temperatures outside. They decided to keep me in the hospital yesterday when, as part of a simple vitals exam, I collapsed into my chair -- my legs simply would not hold me up any more.
First indignity was the wheelchair (and the fact that I needed it), shortly followed by the second: Admission in-hospital. Apparently, my rash was generating so much body heat, it was drawing every bit of free energy just to stay hot. Oddly, the hotter the surface of my now fiery-red and bumpy skin became the colder I felt underneath. My oral body temp was completely normal.
So, I remain in-hospital, getting IV steroids and fluids. Of course, steroids trigger diabetes for me, so it is now sticking fingers and lots of Insulin shots. Crowds of doctors have dropped by to marvel at my rash, as apparently Dermatology (the entire staff dropped by for a visit about two hours ago) has determined that the rash is GVHD -- a very rare thing during the acute period after transplant -- and unfortunately very dangerous. Now they are talking about full body wraps with steroid creams. At least for now my kidneys and liver a functioning normally (under stress).
Changing
My diagnosis seems to change by the hour, and the approaches to treatment change as often. Their flexibility is incredible, if confusing to the patient, so I have plenty of questions. The change from medication allergy to GVHD is a major diagnosis change and does raise the severity of my condition. Skin problems rarely are seen until the chronic GVHD period starts (about six months out from transplant) and include diseases like scleroderma and others.
Perhaps, it can be less fun to be unique.
I remember being unique in the hospital before. In 1964, I got gangrene in my appendix. I had a stomach-ache in the late night and complained of tremendous pain on the right side of my abdomen. My folks were used to a 14-year-old's growth pain complaints, and treated my groans with the usual casual care...until I barfed green stuff in the bathroom.
They piled my in the car and headed for Garden City Memorial, the nearest hospital. All I remember from the ride was my dad leaning over and whispering: "You'd better be sick." Surgery was less than an hour away, as my gangrenous appendix nearly burst. The surgery was a success, but as often happen back then, I contracted pneumonia as a side-effect of the surgery.
This meant I needed an oxygen tent for a couple of days. It also meant no reading lamp and I could not use my transistor radio. The worst was yet too come.
Tag team?
GCM was under a new construction boom and rooms were limited. To conserve resources I was placed in a room with three infants suffering from pneumonia in their own oxygen tents. They formed a crying tag-team. As soon as one settled down, another would start -- hungry cries, I have gas cries, my pants are full cries, and the quivering plaintive "I'm alone, where is my mommy?" cries. This went on around the clock, although it was quieter when the mommies and daddies were there.
My folks brought my books and National Geographics to read. My Mom was a good visitor and conversationalist, but always managed to wake up one of the babies, even talking in whispers. My Dad, as always, was stoic and stayed, but I could tell the caterwauling was getting to him, too. I could read until dusk, but without a reading lamp the time was limited.
I began keeping a mental record of each baby's crying jags and the patterns and length of time each night, so I could answer their parent's questions the next day. The rest of my time was spent blowing up balloons -- common therapy for pneumonia patients in the early 1960's.
The day I arrived home, I ran to my bedroom, shut the door, and had a love affair with (semi) silence. Still, I learned a lesson from my overnights at the hospital...doing the service, counting coup on coughs and cries made the nights passable and giving the daily reports to the parents was pleasurable.
And now...
It seems I will be in-hospital for awhile yet, as they try to tame my flaming skin. I will report as I can. Typing on a bed table is not an easy task.
I shall report again tomorrow with whatever diagnosis is in vogue at the time. I am fighting on as best I can and I remember every day that I am one of God's children I and know He will hear my plea no matter how many crying children surround me.
Your voices, prayers, chants, good thoughts and wishes reach His ears as well, and I thank you all for them. The e-mails, messages and cards help tremendously.
God bless you all for your help and support in this new battle with a wily foe.
Mick