Passing of time

I was surprised when a friend mentioned my long absence from this blog. So few people check it now for updates. Very few seem concerned with my trips to Cleveland and so much time has passed they’ve forgotten I’m still not out of the woods.

Several months have passed since I last posted. Since my last post several people in my support group have died, including my friend Janet from pulmonary rehab and Craig, who got his transplant only a couple months after I got mine. Their deaths forced me to reflect on the horrors transplant patients face. Many transplant recipients seem to possess an essence—a deep quality that is never afraid to take life by the horns. I think it may have something to do with being swept out of the arms of death and having that second chance. So it really sucks when these wonderful people fight with everything they’ve got for their second chance and then they die. Five years later. Three years later. Eighteen months later. One year later. Five months later. It’s never fair.

As I approach my fourth year anniversary I struggle with several health issues due to the surgeries and immunosuppressant medications, but I continue to be happy simply because I have escaped death. As I get closer to the four year mark, my transplant friends continue to die, and my body continues to hurt and fail me in little annoying ways. I am now in stage three chronic kidney disease, have joint pain, IBS, chronic migraines, and osteopenia. But I try not to complain. With all the hurt in the world right now, I always feel like I shouldn’t overshare my problems. I just continue to do what I can to reduce my risks on a daily basis, like wearing masks out in public and constant hand washing. I take my medications and listen to my body.

Each day I hold onto the hope that I will outlive the statistics. I am thankful for my donor and his family who gave me his lungs and the team who works so hard to keep me alive. Thank you to those who continue to walk beside me through it all. You are the best of friends.

One year!

Happy one year to me! I am officially past my one year anniversary of my lung transplant. In the transplant world this is a huge milestone. In a more recent article of the Journal of Heart and Lung Transplantation it states that "patients who live past the first year... have a sixty-three percent likelihood of being alive ten years post... and a twenty-seven percent chance of being alive twenty years post." I like that statistic more than the one I normally see with the median extended life of  6.5 years.

I got emotional. Mostly because I was thinking of my donor's family and his death. I know some people will say to not let this bother me, but that is easier said than done. His life is important to me. The anniversary of his death, such a tragedy, brought hope into our lives. The end of his life brought continuation to mine. (And perhaps to several others.) I will always honor his memory as part of him is now part of me for the rest of my life.

I will be going back to Cleveland in a few days for my one-year check up, complete with biopsies of the lungs to check for rejection. We are hoping for good results.

I'm still struggling with the usual side effects. I guess it's no longer news and I feel as though I should stop reporting them here with risk of boring you. I've been in the ER at least once a month and that is getting really old. The Botox injections in my head and neck have helped decrease the frequency of the migraines somewhat, but when I get them, they are still bad. The nausea and vomiting have not decreased. 

I was also caught off guard last month by a bout of food poisoning. It reminded me how fragile I am and how careful I need to be. Generally I feel less anxious about my limitations and transplant life, but still have my moments when I am reminded of how much I miss how things used to be before I was sick. I can't dwell on those things. I've had to make changes, and I continue to move ahead or else grief consumes me.

Onward. A new year awaits...

A New Hope

Five weeks ago, I received the call. Cleveland Clinic had lungs for me. A match... finally!

Five weeks ago I was wheeled into the surgical room. Lines were placed and anesthesia was administered. An incision was made down my chest and my sternum cut open to reveal my heart and lungs. I was kept alive on a bypass machine while my heart was stopped and my diseased lungs removed. My new lungs--a precious gift--took their place and I was patched back together, sternum wired shut, and drain tubes placed.

After the surgery my heart protested. It had worked hard keeping me alive, overcompensating for the lost lung function. I spent a week in ICU--over 168 hours--heavily sedated and spending most of it in a lost world of hallucinations with glimpses of the real world around me. (That's the equivalent of watching approximately 70 average feature-length movies.) During that time I was extubated, had problems, and re-intubated. The second time I was extubated I was able to experience breathing with my new lungs for the first time. Shortly after, my doctor removed the cannula from my nose. "You don't need this," he said.

Two weeks ago I had a bronchoscopy and the biopsies revealed no rejection. My donor's lungs are making oxygen for my body and doing a good job. My lower legs have returned to their normal color--they are no longer splotchy purple. I don't feel like I'm suffocating. I was out of control of everything for so long that I feel a little lost... like I am coming back from some other dimension, trying my best to figure out the world I missed.

I now sit, five weeks later, at my computer. At my desk. In my home. Breathing. No oxygen. No IV line in my chest. Despite all the pills and the side effects, it's worth it. The pain is relatively tolerable. I know many friends wish to hear more details. And, those should come with time. But for now...

I have a new hope.

A new year...

A year ago I received a diagnosis that changed just about everything in my life. A terminal illness that would take me down in a short time. My only hope--a lung transplant.

I'm still here. This is good. And, I'm still at home. Also good. A year ago I was in ICU and doctors were not sure how my body would react on the strong IV medication they were administering. Fortunately I did okay, and the medicine provided me several months to work my way through the testing needed for transplant.

I had some routine testing on Thursday at the clinic and saw my doctors. Testing revealed my breathing is worse, my oxygen saturation levels are lower, and my already failing heart is working harder. For the best recovery after surgery, I need to stay as strong and healthy as I can within my limitations. I also have to avoid sickness and infections of any sort because they could potentially make me lose my chance for surgery if lungs became available. There is no wiggle room. Any little thing could send me to the hospital and that is not where I want to be. At least not for those reasons.

I know many of you are standing by me, cheering me on. I totally appreciate it. I know it must get tiresome for some to keep making exceptions for me. I can tell some are getting tired of the wait and tired of me and I don't blame them. I'm tired of everything--the sickness, the exceptions, the waiting, the testing, and the difficulties. I feel like the last two years have been stolen from me. And in the last year, it seems more like I've just existed rather than lived. I'm on the sidelines... and it sucks.

I was ready to ring in the new year with new lungs. It didn't happen. But, I'm thinking 2014 is full of hope and potential. And, soon we will have a whole new reason to celebrate.

Two roads diverged in a yellow wood...

Two roads diverged in a yellow wood and neither will lead me out. One goes straight to the cemetery... so I am taking the other one. I will journey on as long as I can and hope for a successful surgery and a speedy recovery. Transplantation is not a cure. But if all goes well enough, it will give me the opportunity to live for several more years.

A few more years in these woods.

In an earlier post I mentioned the amazingly talented Charity Sunshine Tillemann Dick, who has had two double lung transplants. After her first double lung transplant she did everything asked of her. She took her medicines on time, avoided crowded spaces, and did everything suggested to reduce her risks of rejection and infection. But, when she went for a regular checkup, expecting a clean bill of health, she learned her body was rejecting her new lungs. She was angry. "I feel like I've done my time," she wrote in a blog post, "and I was looking forward to doing some more pleasant time in the the coming years."

Charity explained that even though we do something well or we get through something challenging, it doesn't mean the work ends or that there won't be other challenges. She continued, "While I might not be "out of the woods," there is more beauty and love inside of them than I could have ever anticipated." Charity is right. Even though the road has been pretty rough so far, I have learned so much and have met some wonderful people. And, since I will never be out of these proverbial woods, I won't mind setting up my abode here for the rest of my life. I'll have plenty of visitors and some great neighbors.

Optimism

There is something I wish I had right now. It is something I miss that so many take for granted. And, that is health.

I realize I will never be completely healthy again. So, I will happily take the only option left for me... a few additional years on recycled lungs.

To prove how optimistic I am, I bought myself a gift... a five year journal and a seven year pen.

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.