Transplant Checklist: Get Ready for the Call!

ChecklistThe testing is finally over and you’ve gotten the good news, you’re on the list! Now comes the long days of waiting, and the stress of having to be ready at all times to head to the hospital when the call comes.

It took me several weeks after I made the list to finally get my bag packed and myself ready.  I talked to my transplant center and reached out to friends on Facebook to gather their suggestions on what to take. Even with lots of input beforehand, my husband still ended up shuttling necessities back and forth to me throughout my hospital stay. And then there was the mad scramble to get everything ready for my homecoming! If only there had been a checklist ….

Well, now there is! With additional advice from the transplant community and insights from my own experience, I’ve created a checklist of what to bring with you, what to prepare ahead, and what to have ready for your recovery at home.

Let me preface everything with a reminder that an organ transplant is complex and all-encompassing, It’s a shock not only physically, but mentally and emotionally as well. Apart from a few basic supplies, concentrate on creating calm and comfort for yourself.  Don’t worry about appearances. If it works for you, it’s important. Remember, too, that these are just suggestions. Pack what you are most likely to use.

Hospital Bag Checklist

Basic Essentials

  • Toothbrush (new/unused)
  • Toothpaste
  • Brush and/or comb
  • Lip balm (new/unused)
  • Lotion (the hospital supplies this, but if you prefer a specific brand or scent, bring your own)
  • Hand sanitizer (I kept a small bottle so I had it available whenever I needed it)
  • Dry shampoo (sponge baths only for the first three weeks!)

Comfort Suggestions (Whatever works for you)

  • A favorite pillow or blanket (wash well)
  • Stuffed animal or other “snuggly” (clean well)
  • Pajamas and/or robe (you’ll be in a gown until the catheter is removed, and on a heart monitor the entire stay. If you choose to wear your own PJs, bring a few pairs so you can stay fresh

Entertainment and Communication (Distractions!)

  • Phone (to keep everyone updated, take pictures of your progress, etc)
  • Tablet or eReader (watch movies, read books, post to Facebook, etc.)
  • iPod and headphones
  • Books and Magazines
  • Notebook and pen (write questions for your doc, document your thoughts and feelings, or use it communicate if you are trached and can’t talk)
  • Disposable camera with flash (if you want photos from surgery. Confirm with your center that they allow this. Keep the camera sealed in its foil pouch and write your name on it)

Other Suggestions (Confirm first with your center)

  • Gum
  • Mints or hard candy
  • Small snacks

Home Needs Post-Transplant

  • Clean and sanitary (infection is always a threat. Hire a service or ask family/friends to clean the house before you get home. Remember germ hoarders like door knobs and light switches)
  • Shower chair or bench (you’ll be weak for awhile and don’t want to risk a fall)
  • Raised toilet seat (high-dose prednisone especially turns quadriceps into jelly)
  • Protein drinks and snacks (you may have little appetite when you get home — protein is essential for healing)
  • Full-time Caregiver(s) (Until you can drive, you will need transportation to and from frequent clinic and therapy appointments. For the first two to three weeks as gain strength, you may also need help with things like preparing and taking your meds, meal prep, basic chores,  etc.)

Your transplant center will have its own checklist for you. Different centers have different policies and requirements, which always take precedence over suggestions you find here or anywhere else. But this is a start, and will help get you thinking and planning.

Do you have additional suggestions? What were your “must haves” during your recovery both in the hospital and at home? Please share you thoughts in the comments below.

 

 

 

Rub A Dub Dub

shower_benchI remember when a shower was pure delight — hot water pelting sore muscles, luxurious lather washing away the grime of the day, and fragrant steam rejuvenating every pore. I could stand there for hours (or as long as the hot water lasted), feeling the tension melt away. It’s been a long time since I had a shower like that. Bathing now is something to be endured rather than enjoyed. It has become an Activity of Daily Living (ADL), like grooming, dressing and “toileting”, all of which elicit groans from me and my fellow puffers.

Insurance companies, therapists and doctors focus a lot on ADLs because they indicate the degree of debility.  Everyone wants to know how much assistance I need with my ADLs — none, a little, significant.  How do I answer that? I still dress myself, bathe myself and brush my own teeth, but it takes a lot of time, a lot of effort and more than a lot of gasping. And, I’m not that far away from asking for help with stuff like washing my hair and scrubbing my back.

Bathing, actually is a frequent topic on puffer discussion boards. I think people are surprised at how difficult something so simple can be. But believe me, bathing can be a puffer’s worst nightmare. It doesn’t have to be, though. I’ve learned quite a bit from the pf discussions, and discovered a few things for myself, which have made bathing a little less daunting. I wouldn’t call it enjoyable, but it is tolerable now.  So I’m passing these ideas on to you.  We begin with two very basic, but very important rules:

  1. Never bathe alone.  Bathing is hard work and you are vulnerable.  Make sure you have somebody with you who can step in and provide whatever assistance you need.
  2. Never bathe after eating.  Remember when you weren’t supposed to go swimming for 30 minutes after eating? Well, I give myself a good couple of hours before stepping in the shower. Full bellies make it very hard to breathe, and this is one activity where you don’t need added stress on your poor lungs.

The rules will keep you safe.  The following tips will make everything a big easier:

Get the right equipment.

  • A sturdy shower chair or bench is a must. You can find them at just about every pharmacy as well as Wal-Mart, Target and the lot.
  • A hand-held shower wand makes it much easier to rinse the hard to reach places and is invaluable when it comes to hair washing.
  • And lastly, a good terry cloth robe will keep you warm and allow you to “drip dry”, foregoing the need for toweling off, which can zap energy very quickly.

Give yourself plenty of time.  “Quick showers” are a thing of your past. Plan for at least an hour — I usually give myself 90 minutes.  You’ll avoid rushing, which invariably leads to gasping. And you’ll have plenty of time for frequent “breathe breaks”.

Get ready.  This is the time to ask for help!  Place your chair/bench in the shower; position the shower wand where you can reach it; hang your robe on the shower and get your towel, wash cloth, shampoo, soap, etc. all ready to go. You may also want to place a chair or stool outside the shower so you can sit down and rest when you’re done.

Stop, breathe, recover.

Get set.  Bump your oxygen to your activity level — even though you are sitting, you are using your arms a lot, which increases your heart rate and sucks up oxygen big time. Get undressed, turn on the water and while it heats up…

Stop, breathe, recover.

Go.  Have a plan to be as efficient as possible while you bathe. I start with my hair, since that is the most exhausting and I have the most energy at the beginning. I’ve learned to hold my elbows down while I scrub my scalp so it isn’t as tiring. Then I work my way from top to bottom at a steady pace. Bending over compresses the lungs, so hang on tight to your wash cloth!

Before you get out, stop, breathe, recover.  It’s tempting to climb out of the shower as soon as you’re done, but don’t. You’ve worked hard and your muscles are tired.  It’s very easy for your sats to drop suddenly at this point, so give yourself a moment. Make sure your sats are in the 90s before you do anything else.

Drip dry and relax.  Wrap up in your robe and sit in a chair or curl up on the bed.  Give yourself plenty of time to recover (I take a good 15 minutes) before you even think about getting dressed.

Keep it positive.  Sometimes the angst over showering can make it seem much worse than it is. Take your time, relax and breathe through it.

One more tip — I’ve started using a non-rebreather mask when I shower and it’s helped a lot with keeping my sats up. It makes it a little more cumbersome to wash my face, but it is well-worth it!

Whenever you bathe, just listen to your body and you’ll be fine.  Clean still feels as good as it ever did — maybe even more so because these days it’s so hard won!