Monday, January 20, 2014

The listed list

Not much has been happening in medical transplant world lately, or in regular world for that matter (hence my lack of posts, well that and pure procrastination!) I have realized I never posted a hospital packing list.  I looked for this myself pre-TX but never really found one and thought I should make one for my fellow TXers, so here goes

Once listed pre&post TX hospital bag

Blanket (it's nice to have a soft one the hospital ones are often kinda scratchy)
Note: although for a normal hospital stay I would suggest bringing your own bedding (pillows, sheets, etc.) in the case of a transplant I wouldn't recommend it.  The bed gets pretty nasty from all the blood and goe that it's better to stick to a blanket and maybe an extra pillow that you can easily move out of the way and use the hospitals bedding for the rest.

Soft washable pillow

Pull ups or depends (I would recommend for anyone, it's hard getting to the toilet and this provides some protection if you don't quite make it!)

Pics for the walls (it helps liven up the room plus if you go crazy like me, pics can remind you of the world out there you are trying to get back to)

Eye mask and ear plugs (if you can sleep with that sort of thing.  I personally hate them and would rather deal with the light and noise)

Good shoes for walking
Slippers or easy to get on shoes
Sox
Hairbrush
Hair ties
Chapstick
Toothbrush
Toothpaste
Safety pins (great for keeping that gown closed during walks)
Clothes to go home in
A few things to do
(Don't go crazy in this department, most of the time I was either not up to doing anything or my brain was just too confused to really do something)
     Some ideas are:
          Coloring book
          Book
          Music
          Bible (if you are spiritual)
          Simple craft
          Small simple puzzle
          Card/board game
And most importantly a new fan
I got soooooooo hot after my transplant I used up all the ice packs in the ICU before my parents went out and got me a fan.  I loved that little fan so much!  My family laughs about it now because any time anyone got in the way of my fan I would motion to them to move ( about the only firm motion I could do!)

I think I got the basics covered.  If I come up with more I'll make an amended list. The thing to keep in mind if you have been in the hospital a lot before is that a transplant hospital stay is like nothing else you have probably experienced.  It is very very different from a typical CF "tune up". I usually feel decent most of my tune up time and have energy, the motor skills and the mental capacity to do a veriety of activities.  During my transplant stay I hardly had the motor skills to surf Facebook and no where near the mental capacity to comprehend what I was doing!  Stick to simple and comfort when packing for the hospital.  Your days will probably consist of sleeping, procedures and of course walking, walking and then some more walking.

A few other hospital tips:
In case you aren't already aware don't bring food, you most likely won't be able to eat it and it will just sit there tormenting you.  If you are lucky enough to eat while in the hospital you can send someone out to get you food once you know you can consume it.

Ask a nurse if the hospital you are at has a medical cosmetologist.  They will come and wash, cut or style your hair.  I had this done twice and loved it both times.  It is so hard washing your hair in the hospital even without having had surgery, yet having clean hair does wonders in helping you feel better!
Me after my second shampooing!

Wednesday, January 1, 2014

Getting back to life

Happy new year!
So I may have fallen off the blog wagon for just a bit there, but don't worry despite the wait for you it's a good thing, it means I'm living life.  I have been home now for almost 3 weeks.  I think I'm starting to get used to it.  It was a little weird at first.  So far the altitude has not effected me!  I noticed it a little at first but I could still breath fine and felt good!  For Christmas I went up to Aspen which was great!  I had not been in over a year.  Again the altitude barely effected me, I had no problem walking all over town.  It was so nice to be able to keep up with everyone and not feel awful!

My biggest challenge with being home is sick people.  I am still trying to figure this whole immune suppression out and being around people, especially sick seaming ones kinda freaks me out.  Before my transplant I was very much a go out and do things kind of person.  I really did not like sitting at home.  Now however, I find myself wanting to stay home much more.  I also get freaked out at the idea of hanging out with people.  I am still working on being more assertive and asking people to wash their hands and of course checking that no one is sick  before I come over.  This is definitely an area that my anxiety is starting to rear it's ugly head!  Hopefully as time goes by I will get better at this and return to my old fun self, but for now I will continue to be a hermit, hiding in my protected cacoon of sick freeness.
Until next time
Anna