New Journey

I had my six-week follow-up and another bronchoscopy this week. No rejection. How lucky I feel. I'm still sore from surgery and I'm still weak but I get stronger every day. Despite that and the side effects from all the medications, I can do more now than I did this time last year.

I'm still trying to wrap my brain around everything that has happened and is happening to me--the illness, the surgery (and the world I lived  in while sedated and on narcotics in the ICU), the new lungs, my donor, my new life. Honestly, I feel a bit lost. I'm finding my way back to a world I was part of. But everything is different--my life, things around me, what I can and cannot do, my friends and family... and my perspective. Another paradigm shift. This time, so great that I'm overstimulated and overwhelmed.

Since returning home I've spent most afternoons on the phone with mail-order and specialty pharmacies, doctors, insurance companies, etc. We had to switch insurance plans (long story). It's nothing short of a headache trying to to get all the medicines I need for survival. When I'm not on the phone, I take pills. I realize it will get easier and things will resolve. It already feels wonderful--producing the oxygen my body needs--even though I haven't done anything overly significant lately. Oh, but I suppose I have. I survived the greatest battle I've ever faced in my life. And, my friends and family, I could not have done it without your help and to my donor and his family. 

I'll never be out of the woods. I'll always have restrictions of some sort. I'll always be on medicines. My immune system will always be compromised. I'll always have the burden of medical costs. I'll always be tethered to Cleveland Clinic. But that's okay. I've accepted that. So please, my friends, have patience with me as I start this new journey.

An empty hen house...

Saturday morning I woke up to an empty hen house. Throughout the day I kept glancing out of the window, expecting to see the hens lounging about in the sunlight or scratching about for little morsels to eat. But they were not there. The backyard seemed life-less. It was the first time in years, and the only time since it was built, that the coop was empty.

See, the transplant team questioned my choice of pets. Although my hens have caused no harm, they suggested we move the coop further from the house because keeping birds of any kind when one has respiratory issues is risky. I should not interact with chickens (or any birds) and should not clean the coop. And, I shouldn't be around the straw used for their bedding because it can harbor air-borne pathogens.

After we discussed it, we decided not to move the coop. We started raising chickens in order to have our own supply of healthy eggs from happy chickens. This was a few years ago, when backyard eggs were harder to find. But now, I can easily get eggs that are not raised in industrial settings. The chickens though had became our pets and part of our daily lives. We watched their antics from our window, fed them kitchen scraps, and gathered eggs just a few feet from our back door.

Moving the coop further away would mean I would no longer be able to watch them. Going out to the collect the eggs would seem more of a chore. I can't interact with them. I can't even put straw in the coop. So, we asked some of our friends to adopt the hens and on Friday night we took our hens to their new home.

I am no longer the chicken lady. I am no longer the friend who raises chickens. Yet another thing that once defined me is taken away because of this disease. However, I still care about the health of egg-laying chickens and the nutritional benefits of eggs. I'm still a wife and mother who cares deeply about my family and I wish to stick around here as long as possible. If being around birds is too risky, then I won't be around birds. I'm serious about living, even if it means waking up to an empty hen house.

Getting my ducks in a row...

After two days of testing and appointments at the Cleveland Clinic at the end of May, I arrived home in a bit of a fog. Shocked, but yet, not surprised. I felt better after a hug from my daughter and a night in my own bed.

I was told I don't have long without getting new lungs. I have to finish the testing and get listed. Soon.

June was a blur. I overdid things, especially in the later part of the month. And, I paid for it... ill and swollen, and it has been taking several days to recover.

Remember those two bags I talked about? I'm still packing. Most days I feel like I am trying to beat the clock and doing so with limitations due to my medical condition. I'm getting my ducks in a row, making end-of-life decisions, going through personal possessions, and working on scrapbooks. I won't get everything done. But then, that is what the other bag is for. Everything else gets packed in there. Sentences around here are frequently started with "When I get my new lungs" and "When I can breathe again."

Not all ducks are orderly. There are a few that weave in and out, and another that always stops to look at something and falls behind. I'll probably never get comfortable with this uncertainty but I must accept it. I may not know where I am going, and my ducks are in a, er... sort of a row, but I must paddle onward.

The Talk

People have asked what I've shared with my daughter. They want to know how much I've told her about my condition, this disease, and the outcomes of not surviving lung transplantation. I've told her mostly everything. The next question is usually: "How is she handling all of this?"

My daughter is handling this as well as can be expected. She will be nine years old next month and she has a pretty good grasp on what is happening and how lung transplant works. She knows that I am really ill and that I can die. I can die waiting for lungs. I can die in surgery. I can die of infection or rejection after transplant. She's probably more matter-of-fact with it than most of the adults I know. No walking on eggshells, nothing to hide. Just pure honesty and curiosity. She's been going through all of this with me... some times in silent contemplation and some times with extra cuddles and a few tears.

"If you are not here," she asked the other day, "is it my job to make sure daddy eats healthy food?"

I love that kid.

I sat down with her on Friday and I explained that we needed to work on funeral plans, just in case. She expressed her feelings of how she thinks it's unfair because I was healthy and never smoked and there are other people who do not take care of themselves and will live a whole lot longer. I agreed, it sucks. And, it seemed, once we both acknowledged it sucked, it was easier to move into talking about organ donation, cremation and burial, and memorial services.

I know a couple different women who lost their moms when they were young. Their moms downplayed their illnesses so much so that one of them told me she did not realize her mom was dying. She didn't even know what hospice was. They both expressed disappointment that they had missed that opportunity to know beforehand. Each had their own reason or rather, a few different reasons, they wish they had known. Had they known, the death would not have been such a shock. Had they known, they would have asked more questions or spent more time with their mom. Had they known, it would have been easier to get through the hurt of losing her.

I am doing my best to provide the opportunities--opportunities these women missed--to my daughter. By doing so she can work through some of the emotions and ask questions while I am still here. When I first learned how serious my condition was I found a publication by the American Cancer Society called "Helping Children When a Family Member Has Cancer: Dealing With Diagnosis" helpful. It gave me simple steps to start a conversation. And, even though it is geared towards cancer patients, I feel the publication can benefit anyone facing terminal illness.

A butterfly for me...

Is it human nature to want to have a symbol, token, charm, color, crest, or some other totem to call our own? Every college has colors, and along with political parties, a mascot. Professions and organizations, like fraternal orders and scouts, have their insignia and uniforms. Even diseases have acquired symbols and colors that those who have suffered, and their families, have used as a form of solidarity. For example, the blue cornflower represents ALS and the zebra represents pulmonary hypertension. And there are ribbons campaigns and silicone wristbands in all colors of the rainbow.

I've seen the butterfly used often as a symbol for new life through lung transplantation. There are stories and legends that indigenous people and ancient civilizations from around the world thought the butterfly symbolized transformation, change, and good luck. So, using the butterfly to symbolize new lungs seems fitting indeed.

There are purple butterflies for sarcoidosis, red butterflies for lung cancer, orange butterflies for COPD, and red and blue butterflies for pulmonary fibrosis. But I couldn't find a butterfly for rare lung diseases like pulmonary veno-occlusive disease or pulmonary capillary hemangiomatosis. So, I decided to adopt one. I chose the Common Buckeye butterfly, a beautiful brown butterfly with decorative markings of burnt sienna and cream, and distinctive eye-spots ranging in colors from blue to violet.

Now I have a butterfly--a totem and mascot--for me. She will symbolize my new lungs, my hope.

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.

Whittling

For over a year now I've been whittling. As my energy level plummeted and my health worsened, I started cutting down on responsibilities and engagements. I've stepped down from various committee positions, volunteered less, and said no to more requests. I've taken on no new overly zealous projects and made no promises.

Some days I feel as though I'm not the one doing the whittling... that it is the disease that is whittling away at me. I can no longer be a leader or the person that everyone counts on. I can no longer be in charge of important things, events, or finances. My life is too iffy. I have handed over things I once controlled and it has been hard. Painful. Once so active in so many things, now I move slowly through my days. I take half a hospital just to leave the house.

Just like a block of wood, my life, as it was, is slowly getting smaller as little shavings are being whittled away. Each shaving falls to the ground and is blown away by the wind. Each shaving holds a dream, a project, a once upon a time, a bit of what was me, a hope of what was to come in the future.

Whittling through piles of paper, folders, and drawers. Adoption paperwork... in the recycle bin. CPR training to be renewed... how would I breathe for someone else when I cannot breathe for myself? Pinterest boards pinned with ideas for retirement... delete. Photocopies of archival materials and old research... sent to fellow historians. Papers, projects, and more... handed over.

I have hope, that after all the whittling, my future will be something just as marvelous as I once believed it would become.