Ready or not...

In an earlier post I talked about Tiffany Christensen's book Sick girl Speaks: Lessons and Ponderings Along the Road to Acceptance. It is a very positive read and I appreciate her insight on illness. In her book she described a time in her life when she was sick enough for a lung transplant and she knew what she was up against. "I had to plan for both possibilities equally," she wrote.

"I continued to plan my funeral and say my last words. At the same time I dreamed about all the things I would do once I was well. The image I used was packing two suitcases for two destinations... I had no idea where my bags would end up," she explained. She knew both were possible.

All of this seems to be happening too quickly, especially since I've been moving at snail speed for months now. But, it is time. I must pack my suitcases.

Over the next few months I should try to get my affairs in order, make my final wishes, tie up loose ends, say I Love You. That's one bag.

And then there's the other bag. I will imagine waking up with new lungs. A new beginning. I will need to pack lots of hope--hope that my body will recover from surgery quickly, hope that I respond well to the medicines, and hope that I can get a few good years out of the new lungs.

I tell myself I'm lucky. I get to pack. Some people do not get that opportunity. And, I can pack two bags. Some people only get to pack one. Perhaps I won't remember to pack everything or I will run out of time. Whatever I have packed and whatever I have managed to prepare will just have to do. And, when the time comes, I hope to return with renewed strength, a bag in hand... heavy with hope.

Lung Recipients

It's all very surreal to think that one day I will be receiving lungs from another person--a person who has died and has chosen to give me another chance at life in their absence.

Doctors assure me the surgeries usually go relatively well. It's the rejection and potential complications that cause concern. I have blogged about the statistics before. I have approximately a 50 percent chance of making it to five years on a lung transplant. I have a chance. I have hope. And, thanks to the power of the internet, I'm discovering inspiring stories of lung recipients who are on their 3rd, 17th, and 21st year. 

What some of these lung recipients are doing with their new lungs is amazing. There's Rowan Jimenez who got back into his music, biking, and rock-climbing; Alex Parker, a Jazz singer who wrote a song called Breathe In for the Ontario Lung Association; Charity Sunshine Tillemann Dick, who continues to wow audiences with her amazing singing and spirit; and Hélène Cambell who started Give2Live, a program to help transplant patients at the Toronto General Hospital.

Most of all, they have embraced life. They are powerful because they truly know what it is like to face death. And now that they can breathe, they are going to share with the world.

Agendas

My friend who has a similar disease calculated how much time she spends on her disease--everything from mixing medication to doctor appointments. She found that BEING SICK requires at least thirty hours a week--as much time as a part-time job. She pointed out that the rest of the time she functions at about 60% of normal. (Unfortunately for me, I feel as though I function even lower.) No wonder we get very little done...

Our agendas are sparse. They have to be. We can accomplish only so much in a day. And, our agendas have to include chores associated with being sick. For us, it's a matter of survival. Both of us have shared how we lament the loss of our old agendas--completing chores off a never-ending to-do list and not being hindered by illness.

Tiffany Christensen wrote a book called Sick Girl Speaks: Lessons and Ponderings Along the Road to Acceptance. She shared a letter she sent to her to her doctor after she overheard him talking about her in the hallway of the clinic. She was dying of chronic rejection after a lung transplant when she wrote: "I'm sorry that I've made your work day a little harder, a little longer. I'm trying to live with terminal illness and you're trying to get to lunch. Our agendas are so different."

How many people rush through their day, complaining much of the time, never once considering how one's own agenda may affect another? Do we leave enough room on our agendas for slowing down to help a fellow human?

Do we leave enough room on our agendas for being kind?

Freedom comes with tubes attached...

In my quest for more freedom, and within the boundaries of what my insurance will help pay for, I've gained the privilege to use an iFill system in my home. This only means I now have an E tank (approximately 25 inches tall and weighing over 7 pounds empty) that I can fill at home. It's too big to carry, so I have to wheel it around on a little cylinder cart. But, I suppose that's okay, as my back hurts anyway from the extra weight of carrying around the CADD Legacy pump and medicine cartridge sandwiched between ice packs. Now I just have to struggle getting this tank and wheeled cart up and down the porch steps and in and out of cars. I also have to maneuver it over huge cracks in the sidewalks and avoid potholes in parking lots.

To fill a tank I have to place the valve of the tank into the iFill system and turn the machine on. The machine then pumps concentrated oxygen from the air into the tank. While it does this the machine roars and clicks. It sounds like a trash truck is in my home, running it's engine. It's loud. In fact, it's too loud to run at night. And, the E tank takes over 350 minutes to fill. That comes to about 6 hours. (When I filled my E tank, it seemed to take longer than that.) I've also been warned that the iFill is very finicky. If the house gets over 80-degrees it will probably heat up the little sensor inside and it will crash. Then, I will have to call the iFill experts in to reset this sensor gizmo thing.

Yesterday afternoon we had our year-end celebration for our Girl Scout troop at the local botanical gardens. The girls had a fused glass class and then we presented them their one-year stars and bridging awards out in the garden. It was a beautiful day and my tank lasted all afternoon. I didn't have to have a friend run back to the car for the extra tank and didn't have to watch the gauge and worry about what time I needed to leave. However, as I type this, I'm having to refill my E tank. The iFill machine is roaring and clicking as it sends rhythmic vibrations across the floor.

Freedom?

I can certainly be thankful I live in a country and in an era with such technology that allows a patient to have oxygen at home. Had I lived one-hundred years ago, I'd have to seek out an institution that provided oxygen. I'd be away from my family and perhaps bed-ridden.

Freedom? Yes, I suppose we can say that.

Medical waste

Good thing I was green for so long. Now I'm making up for what I didn't waste then with all of the medical waste that comes with this illness--caps, bottles, syringes, boxes, and oxygen tubing. The amount of waste overwhelms me. There's a lot of precious resources used to create these overly packaged one-time-use products that create a deluge of pollution. It's to save my life and to avoid infections. It's the bad with the good.

We've tried our best to be creative with the items and to recycle what we can. I am asking my friends to be creative and encouraging syringe painting or drip painting, bottle cap collages, and basket-making. At least I don't feel as bad if the waste is being up-cycled or recycled.

My husband places treats for our gerbils in the empty Flolan boxes. They seek out the treats and chew the boxes into small pieces and use it for bedding. It's environmental enrichment and recycling at its finest.