Duke Transplant Friends

Revised Sept 17, 2011

I recently began actively making preparations for double lung transplant surgery by starting the intensive physical therapy program at Duke's Center for Living. All lung transplant candidates are required to attend 23 full sessions of Duke’s specialized and personalized exercise program, which prepares patients for the actual surgery and recovery. These sessions are from Monday through Friday, 12:30 to 3:30, and then 2-3 times a week we stay an additional hour for lectures. Many of the exercises are designed to strengthen the body in preparation for specific physical tasks and activities encountered during the time patients are in the ICU and Step Down “In-patient recovery stages” of post-transplant hospitalization. For example...making us do squats will enable us to go to the bathroom by ourselves. Bet you never really thought about how strong your legs need to be in order to lower and raise your body from a toilet seat. Actually, by the time patients find themselves in end-stage lung disease, even the simplest of tasks become enormous mountains to climb over. Things we previously took for granted such as washing our hair in the shower, now take monumental effort and we are exhausted after bathing, brushing hair and re-dressing. The simple act of tying sneakers or picking up something dropped can be a challenge because bending over is quite difficult for COPD patients due to the over-crowded conditions of our chest caused by the expansion of diseased lungs.

So... I am now on day 17 of 23 required sessions before transplant. I was fairly strong to start with, unlike many other patients who have different medical diagnoses such as cystic fibrosis or pulmonary fibrosis. No two people experience the same thing or are on the same level. I do feel quite fortunate to be as strong as I am. I have had to stay in shape for my job as a park ranger, training for personal protection and physical endurance of foot patrols, and walking boundary lines. Of course I have been on light duty for more than two years, and the prednisone steroids I have had to take caused me to gain weight and lose muscle tone, but it is all coming back nicely and the weight is slowly leaving. I sometimes feel like I am on the Biggest Loser show...only my program is The Biggest Winner Club of Duke Lung Transplantees!

Our day's journey starts by getting ourselves ready to go to the Duke Center for Living’s Health and Fitness Center. We start hustling around in our temporary homes around noon to get ready to go. We either want to be able to volley for a good parking space, or be dropped off by a caregiver. I like to park in a place that is shady when I come out in the late afternoon, so I plan ahead. I tend to get there a bit earlier than most of the afternoon crew. The place is already hopping with folks in other activities so the parking lots are nearly full. I have to trudge up the hill (in order to leave handicap spots for those who really struggle or require assistance in mobility). I recently decided to buy my own mat and leg weights and dumbbell weights, so while making my way up the hill I am carrying my mat, a bag of the HEAVY weights, and of course, my ever-present backpack with my oxygen tank, books, ID card, snack, water bottle, gum, therapy stretch band, extra cannula (nose hose), loop of beads, chewing gum and whatever I have brought to entertain me for the next 4 hours. It makes for a long and struggling walk and I am usually majorly outta breath by the time I get to the building. However, I look at the bright side. This extra 25 pounds I am carrying around will help me strengthen bone density and help fight the osteopenia a bit more than just taking calcium and Vitamin D. For someone who never knew what a calorie was or cholesterol, nutrients and supplements were up until a year or two ago, I sure have come a long ways into knowing stuff that helps keep me strong and healthy! Love my almonds, walnuts and pistachios (but do wish they were Reese’s Pieces, Brach’s Candy Corn and caramel Rolos instead!) There is another plus to hauling all this weight around on my back and that is to help strengthen me for my celebration mountain hiking goals post transplant next year. I must be a glutton for punishment! LOL

There are approximately 35 people in my current "23 day" group consisting of both pre and post-transplant patients. There are another 40 or so who already graduated from the initial 23 day requirement, but are taking advantage of a graduate program to help them stay in shape until they are either listed or transplanted, or well enough to leave. The group size is always changing as people come in to the program, get "the call", or return after being released from the hospital for their final 23 days, come for tests, medical issues, etc. Some people have to have additional surgery to help protect the lungs through a stomach wrap procedure before they are released. This helps eliminate acid reflux from damaging the fragile lung tissue so they will continue in the graduate program if needed. Everyone HAS to do the “23 days” both before and after surgery. The graduate program on both ends is optional but highly recommended to remain a viable candidate and make for a speedier, healthy recovery.

Arriving at the building breathlessly, I pray someone sitting by the door will press the automatic door pad to save me the extra steps....and I am struggling with breath too much to try to pull the heavy doors open too. Great! Someone is leaving and they can hold the door. I can tell you one thing, I will, from here on out, ALWAYS, ALWAYS, ALWAYS hold doors for seniors, people with disabilities and anyone who looks like they could use a little assistance. After transplant I will even LOOK for opportunities to help someone in a parking lot, by volunteering to take the cart back. Man, oh man, is that ever hard for me after unloading groceries or packages at a store into my vehicle. It is so exhausting. By then, I am feeling like I am suffocating and can’t take another step. I can barely make it to my car seat in order to catch my breath. I have had about 3-4 people see me struggling and offer to help...which was VERY hard to accept - but I will NEVER take opening doors and pushing carts for granted again.

After checking in to the center by scanning my ID card, I grab a couple towels, head to the women's dressing room to weigh myself, stop by the counter and get a pair of medical gloves (required to help keep us free from passing or getting germs from equipment). I look for the milk crates filled with clipboards and attached pencil on a string and check to see if the pencil stub is relatively sharp, If so, I claim it as mine. I do wish the pencils were sharpened more regularly. Thank goodness knives are not banned in the gym! I, and others, reach for a pen-kinfe on occasion. How would we ever cut up our apples and oranges and sharpen our pencils? I must admit as I watched one patient sharpening his pencil today, I wondered if he would ingest lead at snack time! LOL Okay, so they are made of graphite, not lead…but it’s what I thought!

I have to swap out my oxygen tank for one of theirs because no two oxygen delivery styles are exactly the same. Duke says we are all required to use their "E" tanks for convenience and quality assurance. Some people use walker/seat combination carts for stabilization, which will also carry their tanks, while the rest of us have to drag our tank burdens behind us. Depending on lung function, some patients may need to haul more than one tank at a time in order to sustain the high level of oxygen needed. If we are lucky, the two large class sizes and patient level make-up will leave enough equipment for everyone. Otherwise, some equipment swapping will be done during the floor exercises. That's another reason I like to get there early. I can get a tank cart with a long enough handle to make my dragging posture more comfortable, and not require me to slouch because it is too short. I learned that lesson the hard way; the adjustable handles are not always what they seem to be. It takes a few seconds of unwinding myself from the length of hose I am trying to connect and fasten to my face. I have grown very comfortable to this medical contraption and it feels really weird if it isn't on. I can always tell when something is “wrong”...not to mention the fact that long term deprivation of Oxygen leaves me sucking for air a bit more passionately. I make haste to swap out.

Once all that is done I take a seat alongside the other patients and wait for the staff to begin their routines. They come by with our medical charts in hand and start drilling us with questions.
"Do you have a clipboard yet? Are you in pain related to this program? Where? On a scale from 1 - 10 how would you rate the pain? Do you have to take your blood sugar? What were your readings? How much did you weigh today? What level oxygen are you on right now? Give me your finger." (How much is my oxygen? I wonder.) "It's 96 percent. That's pretty good." (I think: 96%? Well, you shoulda took it when I stumbled through the door a little while ago!!!!) "Okay, let's get your blood pressure now."
And so it goes...until all 35ish of us are done.

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