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I just came home from a lovely week of ATG / Cyclosporine.
A couple of learned lessons .. Some of this is common sense, and has been said before on these forums .. I cannot reiterate that you are in-charge here and to throw a freaking hissy fit if things are not right. The first lesson is that if the nurse/ptc etc has not worked with an ATG patent before, demand a change .. I ended up with a "swing nurse" who had no idea what to do when I started having it bad. I'm not sure who was more scared, her or me .. but it was not a good scene. There were several minutes of being left alone in the room with hives and major rigors while she ran to get help. I don't blame her .. I blame the hospital and my own willingness to accept things which in hindsight I should have never accepted.
The second lesson is, that when the hospital takes 7 hours to admit you (after having been on the list for a room for ~2 weeks) puts you into a situation where is not-quite-what the doctor ordered. Get out and start over. You can always come back. We might be transfusion dependent but we are not invalid. There is no reason for that type of risk..
Fortunately, I survived and lived to tell the tail ..
I am told that my reactions are/were "mild" by comparison ..
Day 0:
I arrived at medical city at 08:30, spent time getting prepped in the oncology clinic .. by noon I was in general admitting. Thats when things started to slide .. I was told that my room was not available "for a while" .. I asked them to define "while" in the form of minutes or hours .. which they couldn't. "Do I have time to eat?" -- "Maybe, we don't know" What should we do? "Let us know when you come back" -- swell .. so we wonder around the little cafe area and find some nice grilled panini sort of thing (turns out this is the best food in the place) By 5pm I'm in the room on the 9th floor. The PICC crew comes in and takes care of the installation in a quick and professional manner .. It took maybe 5 minutes after the prep to get the line installed. Things are looking up ..
not
Since I am low on platelets and red blood cells they decide go head and infuse me overnight; getting me ready for the ATG in the morning. I've had issues with platelet reactions in the past and have a pretty strict regiment of what I take when .. Solumedral 20 minutes before, Diphenhydramine 10 minutes before. We've done this so many times the doctor has standing orders ... but apparently they were not explicit enough. This place is (obviously) suffering from a too much to do, not enough focus and it should have been a clue to me [ see lessons above ] the nurse came in and gave me my meds ... then left .. over an hour passes and I still haven't gotten my blood products started. I finally push the call button and ask if we are going to get this started .. and a few minutes later the nurse runs in with my bag of platelets (who knows where this bag has been) and hooks me up .. I ask "Shouldn't we remedicate?" Oh no sir .. you'll be fine ..
within 5 minutes I was not fine .. The nurse starts the platelets up and immediately my eyes start to itch .. The nurse is gone now .. I'm alone in the room and I pounce on the call button .. -- nothing -- time passes .. I hit the button again .. my vision is almost gone now as the hives have formed in my eyelids closing off my vision .. I try to reach for the infusion clamp to shut it off but I can't find it .. and the rigors are starting up .. some part of me is concerned about the PICC line as I don't know how it works or if I can clamp it off - or how the clamps work (should have paid more attention to what they were doing) Hit the call button again .. this time there is a response "we will be right with you" ff--ukk---ck th-at-- i need -- help!!!! That seemed to be the right words .. someone comes in the room - no idea who it was .. but I remember the words "oh ****" followed by some yelling .. then the room is full of people. Things are a bit blurry on details .. I remember someone putting an O2 mask on me .. I remember several calls for medicines .. and mostly I remember the rigors and shakes ... how it hurt so much and nothing I could do would slow them down or curtail them .. Then waking up about 2am from all this covered in sweat .. everything was wet .. the bed, the floor. etc .. probably not a dry spot within 10 feet of me .. A very concerned looking nurse was in the room, she'd apparently been there since the rigors started to subside .. and I'm not sure when she left as I had fallen back to sleep when they started the red cells. (fortunately I've never reacted to those) -- I never have seen the original nurse they left me with .. But every nurse I encountered after this knew the story already so I suspect I was the subject of much shift-change conversation.
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