I'm a newbie and after recently completing the HiCy protocol at JH I wanted to pass along notes that may help any of you that may consider having the procedure.
Your own Pillow (JH pillows are like flat rocks)!!!!!!!!!
Can get parking passes for $4 a day (outside admissions), which saves money.
Things for friends/family to do while you sleep i.e.: DVD player, IPOD.
You can take your own pjs, but a gown is actually fine too.
I slept for the first 3 days, so if your family wants to document what activities were swirling around you, it might be a great idea.
Leave dignity at home and the ‘I can do it myself’ attitude also. Accept help and understand that you will be weak.
The nurses are absolutely incredible, very knowledgeable and kind.
If you think that there is anything that you need to have in your apartment for when you are discharged, ask for it. (Ex: wheelchair, walker) The nurses/PT dept will help you get that. Remember, you will be weak for a while.
After you are discharged from the hospital, you will need to go to either IPOP or HiPOP everyday. They are two outpatient departments across the hall from each other. Each day, you will be assigned to one or the other at a specific time. Upon arriving, they will weigh you and draw blood (from the Hickman catheter). The blood is sent to the lab and will tell the nurses if your counts are dropping, if you need platelets, packed cells, and every day you will get a sub-q growth factor injection to stimulate your bone marrow to produce white blood cells (thus the rebooting part). You could be at IPOP anywhere from 2-8 hrs. Be prepared with:
Sweatshirt, slippers, etc. It gets chilly.
An Ipod is nice, portable DVD player, etc. There is a TV available.
Tell all symptoms that you have, no matter how trivial it seems. The day that my counts dropped, I fell. Falling was an everyday occurrence before HiCy, so it wasn’t a big deal to me. The bruising was amazing and because I forgot to tell them that I fell, the nurse practitioner got very upset about it.
Take a soft toothbrush to apartment—when counts drop, it has to be soft so gums don’t bleed.
I had a fantastic stay at Marriott Execustay. Church Home @ Broadway Overlook. Connie Brown (ph: 410-234-2004 ext. 11) was an incredible help. I signed a month lease, but with 5 days notice I could leave at anytime. She only charged me for the 25 days that I was there. The apartment was immaculately clean: looking almost new, 2 blocks from the hospital, internet connections, TV/cable, double bed, washer/dryer, kitchen with all amenities, and very safe with a locked gate with parking for one vehicle.
I hope this helps anyone interested in this procedure. It was well worth it to me, but everyone is different. Weigh your options carefully.
Thanks and have a glorious day!
Oh, and thanks to the 28 or so people before me at JH for forging a path for me! AND, to Keri for lending my kids the DVD player. They still talk about how cool that was!! You are truly a sweetheart!