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.

 

 

 

The Waiting Waltz

Dance2Two weeks in and I think I’m starting to get the hang of Life on the List. Thankfully, I no longer experience that little squirt of adrenalin every time my cell phone rings. Several calls from family and friends on my birthday last week were enough to break me of that heart-pumping annoyance. Even the calls that show up “BJH” (Barnes) on my caller ID don’t get me going — I know it’s probably someone from the transplant center with a question about my next appointment.

But my nonchalance over a few chirps and vibes belies a much more delicate dance taking place.  I had my first bi-weekly appointment with the transplant team a few days ago and emerged with a different picture of my situation. While my numbers haven’t changed that much — my FEV1 (measure of lung capacity) dropped a point and my blood work is the same — I’ve been struggling with my oxygen sats at home. We know that as long as we can push enough O2 into my lungs, my body will do its Energizer Bunny imitation (albeit a slo-mo verstion!)  The problem is my home O2 set up. Concentrators don’t deliver 100% oxygen, especially when they are running full-out all the time. They get close — mid 90s maybe. But my lungs are stingy.

When I need “bonus O’s” to supplement the two concentrators, I add 15 lpm on a non-rebreather mask from one of my portable liquid O2 tanks.  LOX, however, can get cantankerous, especially at high liter-flow. The tanks freeze up and flow can be inconsistent. Plus it’s difficult to know exactly how much O2 is left in a tank because LOX uses a fish scale gauge rather than a regulator.  Combine that with freezing and I find myself sucking on empties far too often.

The result is that at home it’s hard to force adequate Os into my busted lungs.  I’m fine while sitting still. In fact, I can nail sats in the mid- to high-90s while lounging about. But any movement… who would have thought going to the bathroom — something as simple as dropping trou and sitting down — would zap my sats down into the 60s. I’ve started using my scooter to get around the house and that’s actually helped a lot. It’s much easier to deal with the bathroom if I don’t have to walk 50 feet to get there. And I’m talking to Lincare, my oxygen supplier, about adding gas E-cylinders to my home O2 set-up. Gas cylinders give a more constant flow and they don’t freeze up.  And if I can get a 25-liter regulator, I’ll be in O heaven.

In the meantime, the transplant team told me I may end up spending my wait time in the hospital, where 50-psi oxygen, OptiFlow and ECMO machines will make it easier to stay oxygenated. For now, they are leaving that decision up to me. As I long as I feel like I’m getting what I need at home, I can stay put. And that’s exactly where I plan to stay, as long as I possibly can.

What the Heck is Going On?

Once I get The Call, my family will be updating everyone about my progress through CaringBridge.  The easiest way to keep in touch is to sign-up for email alerts from my CaringBridge page.

Until the Call comes, I’ll continue to post about “Life on the List” right here at Reality Gasps. So keep checking in!