I Got The Call!

This afternoon I learned that they have found a donor for me. I was already in the hospital, about to start plasma pheresis, a procedure that removes and temporarily suppresses antibodies. Our goal was to expand my potential pool of donors to improve my opportunity for transplant.

But “the call” came right before my first treatment. That was 2:00 this afternoon. It’s now 10:00 pm and we are still waiting for final confirmation from my surgeon that the lungs are good. I don’t think they are even here yet. It’s an involved process: recipients for as may organs as possible are found before anything is removed. So, there’s still potential that this could be a “dry run” — a no-go. I have a good feeling, though. I woke up feeling like this day was going to be extra special and so did my husband. I have faith that all will happen exactly when it should.

I always wondered how I’d feel when I got the call. When I heard the words “We may have a donor for you”, an electric “zing” ripped through my body. Could this really be it? After a few deep breaths and a quick reminder that we were still a long way off from actual transplant,  I calmed myself down. An hour later, my nurse came in and said we’re moving forward. At that point I burst into tears. During the past seven hours I’ve felt everything from pure elation to fear to sadness for my donor to an almost Zen-like calm. My emotions are truly a roller coaster, shifting and spinning moment to moment.

My family will be updating my Caringbridge page from this point forward. I will return to Reality Gasps after I’ve recovered a bit. I’ll even have pictures of my old and new lungs!


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!