2014: The Year Of The Lungs

Today marks my 100th day on the transplant list. It's been a while since my last blog post, but I put this down to anxiety and paranoia, my new, unwelcome friends. December was a hard month for me, what with the air quality in California wreaking havoc on my lungs and sinuses, giving me headaches and making me wheeze, and to top it all off I ended the month with a wonderful, snot-filled cold. It was a Christmas present I won't forget.

The last time I blogged, I talked about the need to gain weight. Even though December was rough, I managed to gain eight pounds and maintained a steady if not slightly better lung-function. All of those things are great and should have made me happy, but waiting for lungs has made my brain feel a little out of control. I started isolating myself from social media, which was actually a good thing because reading about all of my other friends and their health issues was just fueling my paranoia. I thought whatever they were going through would happen to me too. To concentrate on my health as my sole job has taken its toll on me. Thinking all day long about treatments, exercise and food has brought me to this downward spiral. However, there have been some mantras that have guided me through this rough patch.

I read different blogs, and the one blog that has helped me stay somewhat afloat is Momastery. Glennon, an amazing blogger, always talks about doing hard things. That we can do hard things. Staying patient, and staying on task each day is hard for me, but I keep telling myself over and over that I can do hard things. Her mantra is "just do the next right thing". I get overwhelmed thinking about the whole day or the whole week ahead of me, so I tell myself just do the next right thing. Whether it is lacing up my shoes for a walk or preparing my high-calorie shake, just doing the next right thing has helped me stay strong physically.

Even though my body is doing well for the most part, something happened recently which brought on more stress than I could have imagined. I wanted to hold off on sharing until I could get some distance from the experience and be able to put into words how it made me feel. Last Sunday evening I was offered new lungs. Yeah, I will wait while you wrap your head around that. Okay, got it? The call came in around 11:30 pm and I couldn't believe it was truly happening. I felt like I was in the twilight zone. I could barely concentrate on the words the doctor was saying. I finally realized the call was real and rushed down the stairs to Tom. The doctor told me that the donor was considered a "high-risk" donor. I was never told about these types of donors before this phone call and I had no idea I would even get a choice as to whether I would take lungs or not. Well, I have since learned that with high-risk donors, we as patients do get to make that choice without any repercussions. There were not many details about the donor, other than he was found dead on the street and was a suspected drug user based on needle marks found all over his arms. There was no next-of-kin to vouch for the donor, nor any medical history, so I had to make my decision in 10 minutes based on what little information the doctor was able to give me. After much agonizing, I decided I was stable enough to decline the lungs and continue to wait for a less high-risk donor. Patients take high-risk donor organs all of the time, it really depends on how comfortable the recipient is with the risk of infection and where their health status is at the time. In different circumstances, if I felt sicker and closer to death, I might have taken the lungs. The doctor told me, when I said no to the lungs, that he would just go down the list and call other patients to see if they wanted them. I did not waste those lungs, they most likely went to someone else. Even though I did not accept these lungs, I am mindful of the tragedy that happened to this donor. He made a choice to give himself to others and for that I am deeply grateful.

What does all of this mean? Well, another call for lungs will be coming sooner rather than later most likely. That phone call made this whole situation feel so much more real. Tom and I stayed up until 3 am after we got the phone call. The adrenaline rush was like no other and quite frankly it left me terrified for a few days. I'm getting back to my normal routine, but I'm still dealing with a lot of emotions. I knew this process wouldn't be easy, but I have never felt so anxious like I feel now. Don't worry, I'm getting help with all of it.

I apologize for anyone who has emailed or messaged me recently. Part of stepping away was for self-preservation, but part of it was just for pure isolation. If you write to me, please know I read everything and really appreciate the thoughts, good wishes and prayers, it does help. I might not be able to get back to you, writing to just one person makes me feel vulnerable, while writing on this blog makes it somewhat less scary.

I will leave you with this. We can all do hard things, so just do the next right thing.