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.

Distractions

My friends are great. They pay attention. In fact, I've been reminded by those who don't live on Facebook (and are not close enough to check in on me) that I haven't posted since the 14th. I really should do a better job.

But, at times, I cannot focus and have no idea what to write about. Or, I'm just too tired to write... or think. The medicines and lack of oxygen to my brain have certainly made me less cerebral. I surprise myself at times. Some of it is just... well, so random. (I risk sounding like my daughter.) For example, I started watching the Ellen DeGeneres Show. Me watch TV? And it's not a documentary. I know! And, yesterday morning, I actually clicked an internet link to take me to Tiny Adorable Animals That Will Make You Squee. (Apparently squee is a word. Where have I been the last few years?) Then I was lured to click on another link: 32 Reasons Robert Downey Jr. Is The Most Perfect Man In The Universe. How could I not click that?

That Iron Man and me, we have something in common. We both need to be hooked up to devices that keep us alive. Tony Stark, the Iron Man character played by Robert Downey Jr., was hooked up to an electromagnet in his chest that kept shrapnel that was in his body from an explosion from reaching his heart. He invented an implantable version that made him more mobile. (Comic book nerds are welcome to correct me on any of the technical details.) In some ways, it's like the Hickman catheter implanted in my chest. But, in shape and style, it reminds me of the pendant-style oxymizer that is used to maximize oxygen concentration. I think I could have a terrific Halloween costume in the works. I'm just not sure an oxygen tank would fit in the Iron Man suit. Perhaps Stark Industries could come up with something. Hey Tony, can you work on that?

But I realize that even though Robert Downey Jr. is certainly a worthy distraction, an update is overdue. After returning from Cleveland we tried titrating up on the Flolan again. I didn't do well... again. I felt sick and agitated. My oxygen level was dropping more frequently and recovery time was longer. So, last Thursday I came back down to the same amount of nanograms I left the hospital on in January. Needless to say, there were a couple weeks in there that seemed more rough than usual.

Also, I'm getting better about being open to accepting help and allowing my life to be more transparent. I can no longer hide behind this nasal cannula or my super hero persona.

Homeschooling

A few people have asked me how we are handling the homeschooling and if it has been stressful on me.

In a typical month we school Monday through Thursday, and occasionally on Friday. The majority of schoolwork is completed by lunch or early afternoon each day. At times we have field trips or special projects that may cause us to rearrange our schedule, forcing us to work in the afternoon and/or catching up on a different day. We've always used a computer program for math. But, since my diagnosis, we've been trying some additional online curriculum. This frees up some of my time because the online program does the preparing for me. It's already set up and ready to go when my daughter gets on the computer in the morning. Through the summer we have continued to school but with a much lighter load--approximately two mornings a week. We don't take time off for spring break. Nor do we take too much time off around the holidays. This enables us to keep ahead and take off time when we need it throughout the year.

Once a month we have Girl Scouts, American Girls, geography; and at times, other classes and activities done as a group with other homeschoolers. Our Girl Scout troop is very active and always doing fun activities that are helping the girls develop interests and help their community. The American Girl group is a chance for the girls to share their love of reading and American Girls. The group coordinates crafts and activities alongside the books the girls are reading and we use the books as a springboard for additional history studies. Since starting the group, we've gone from the 1700s to the 1860s. The geography class meets once a month to give the students a chance to give a presentation on what they've learned about a particular country. Each month they are assigned a new country and they can pick what they want to focus on. It can be the clothing, politics, food, a particular animal, etc. They prepare their report and then show up ready to present what they learned--geography and public speaking rolled into one. Also this year, we've done some science and Ohio history with another homeschooling family, sharing talents and supplies.

Stress? Some days can be frustrating. How many times do I have to explain the order of long division? But, really, what would I rather be doing? Last week was filled with math and grammar and US map skills. And, we had geography. We studied Spain and my daughter wrote an opinion piece about bull-fighting. I watched her stand in front of a group of people and confidently deliver her report. When we returned home we made milkshakes and relaxed. Sick or not, I don't want to miss a second of her childhood. We do things together. We create. We learn. If this were my last day, this is what I'd want to be doing.