My Double Lung Transplant

Monday, June 16, 2008


I'm getting bored of rehab.

Is that completely horrible of me? Am i such a horrible person that i'm getting bored of the very thing I fought so long to get into? Maybe i'm not bored per se....just 'bored' in the sense that i'm finding it repetitive. Aye. This bordom however is not enough to make me stop going to rehab - lord knows i never would...maybe i'm just tired of the activities.

So what is it I do, you ask?'s the run down:

- resting O2 sats (5 minutes)
- walk to the doors and back (1x)
- arm circles (10x)
- high stepping (10 x)

- bike 20 minutes (i'm finding i need to take breaks every 5 minutes, so i go 5,5,5,5). My speed is lower too. Today my heart went over 180 beats per minute and over 200. Not good
- 1/4 squats with 2lbs weights (10x)
- chest expansion (10x)
- side bending, overhead stretching (10x each)
- 2lbs arm curls (10x); 2lbs tricep curls (10x)
- leg weights, 2lbs
- abduction (10x each leg)
- excision (10x each leg)
- quad stretch(10x each leg)
- and some more (10x each leg)
- calf stretch, each leg hold 15 seconds, (10x each)
- box step, 2 steps, (10x)
- treadmill, 20 minutes

- walk 1 time to doors
- deep breathing 5 minutes
- check resting sats


WEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!! So that's what i do at rehab Mon, Weds, and Fri. It takes me about an hour and a half now. When i first started it took about 2 hours, so I've got it down a little bit. So it is quite the workout, and i'm very thankful that i'm actually getting to do this so I can get in and sustain the best shape possible for transplant. The whole purpose of rehab is to stay in the best physical shape possible to maximize recovery time and also lessen the amount of muscle you lose immediately post tx. I know it will pay off.

Someone I go to rehab with, Bob (who's been listed since the end of Jan) got a call last Tues! Unfortunately it was a false alarm, but a call nonetheless which means he's closer to the top of the list now! I'm afraid of false alarms to be honest (is it safe to admit that?) I'm afriad b/c I'm smaller than the average bear, and what if it takes them eons to find another match?? I know it's a reasonable fear but a fear nonetheless. I guess I won't know until the last minute.

Friday when I was on the deck, I heard a hissing sound. I thought it was a snake. It wasn't a sound i had ever heard outside before (I don't think), so I was pretty scared when I in fact heard it. I listened more closely and still it came, so I went onto the grass, barefoot, to investigate this potential snake. Not a wise idea one would guess....investigating a potential snake while barefoot, but i did it, and I found nothing....but i still heard the hissing and was convinced there was something a miss.

Today when i was putting my make up on (you still need to look pretty regardless of if you're waiting for a tx - at least to me, it makes me feel normal!), I heard the hissing again. Was the snake in the wall?!? Did the snake follow me and find me in my bed room? I stopped everything I was doing. I stopped and stood still and I listened, and then I heard it...

It was me.


ME DAMNITT ME!!!!!!!!!!!! *falls to the floor dramatically and cries*

I sound like a hissing snake! A bloody hissing snake!!! It brought back memories to the winter when i was convinced there were mice fighting in the wall....and upon closer inspection it turned out that the copious amounts of squeaking was actually me! Me and my squeaky lungs!!!

My squeaky, hissing lungs!


There is nothing I can do. I have to accept that. The squeaking/hissing won't go away until new lungs come and for now all i can do are my treatments like a good lady and ignore the sounds.

Lungs, come soon (please!)


Alice said...

You're SOOO funny!!! My lungs always sounded like a plastic bag being crumpled!! May those lungs come soon!!! The rehab programme lokks great. I could never do all of that when I was listed... would just fall over and die!

BreathinSteven said...

Hey Beautiful You!!!

I agree with Alice -- I love reading your blog and you usually always make me laugh! (I think sometimes you don't mean to make me laugh so I don't laugh then -- but then you make me emotional or pissed...)(At whatever you're pissed at...)

And Bree -- it is boring... it is FUCKING BORING at times while you're waiting... And no, it isn't completely horible of you... But those repetitive, boring exercises you do are so very important -- and unfortunately, as boring as they are they may get more difficult as you lose a little more lung capacity. But you'll probably also find your strength improving so maybe that will offset the capacity thing!

And just wait until you try doing a few of those exercises with your beautiful, new lungs -- the difference is mind-boggling... It's been eight years for me and I still think about it... I'm off work today and I went out and had an "Epic Burger" (a new chain by us and I find I'm OK with the name!) Then I went for a brisk walk on Michigan Avenue (downtown Chicago) and I took off my shoes and socks and splashed in the little wading pool in Millenium Park and walked back home -- at a stoplight on the way home I felt it again and my eyes started welling up -- what I felt was that not too many years ago I couldn't have possibly done this...

I'm waiting for you to feel that... And I hope you still feel it after eight years...

And I hope you're not bored to tears now... They told me I'd wait 10-14 months for my beautiful, new lungs... I waited 31 months to the day... There were people who were listed a year after me who got their lungs 6 months before me... (Allocation in the U.S. was very different than it is now...) My "job" became surviving day to day -- it's a freaking boring job -- and when it's exciting it's excitement you really don't want!!!

You won't wait that long -- you won't wait nearly that long... Keep up those excercises -- I did -- keep up your weight!!! I know you're a skinny-minnie and are image conscious -- but right now, pack a few pounds as insurance for recovery... I did my bestest to do all of the above -- I was in the hospital six days -- I was walking in my courtyard seven days after transplant -- I walked a half-mile (round trip) to Starbucks 10 days after transplant...

The day of my transplant I walked less than a city block to a little restaurant -- my oxygen was cranked up -- it took me 25 minutes to get from the corner of our building to the entrance of the restaurant... 3 weeks from that day I walked a mile in just over 15 minutes...

And I remember the hissing snake -- actually, "bloody" hissing snake ain't a bad description because often enough there was blood... And my breathing while I was waking up in bed in the morning sounded like popcorn popping, or a creek gurgling... All that goes away and the feeling is amazing...

I hope the lungs come soon too, Bree... Alice -- I think you're beautiful!!! (I think you are too, Bree...)



Dragonfly said...

Those false alarms are so hard.....(though I have only seen it, not been in that situation), I am not sure if knowing you are close to top of the list helps or not....

Matt Todd said...

I have pretty much the same experience as you wearing oxygen. But i think I've told you that before. Mine always gets caught on the springy thing on the back of the bedroom door, under the bathroom door. Or the worst and most frequent is that the dogs always seem to know exactly where to sit/stand so they are either on the tube it will get wrapped around them and get caught on them. There are two of them and i swear they tag team me. Its the worst in the kitchen. They're always there and they're either on my tube or tripping me. My canula yanks me in my nose more so than my ears. Not sure why that is, but that's what happens. I ran out of oxygen overnight last night. So i woke up rather tired this morning. But since i was out of oxygen i didn't see a need to wear a cannula that was doing me nothing. So i didn't wear it for a few hours until the guy came to refill it. But it sure felt odd not having the cannula on. I have gotten so used to wearing it that i almost have phantom cannula feelings when i don't wear it. I find myself trying to adjust something that is not there. It's weird. I guess same kind of thing when people loose a limb. But obviously not as drastic.