April is Donate Life Month

April for the Transplant Community, is special. Why? Because April is Donor Life Month. It is in the month that we as recipients, team staff members, doctors, caregivers - everyone involved - recognize those that make all of these amazing and incredible things possible - the donors and their beautiful families. 

Throughout the month, this is done in various ways. There are walks and runs, charity events like galas and dinners, campaigns online to raise awareness, or even smaller events around the community to encourage organ donor registration. 

Last week, I received an invitation to The Methodist Hospital Celebration of Life. It's a very special event inviting the Methodist Transplant Community together to recognize the donor families and their special importance to all of us. 

Yesterday at support group, we talked about what would happen there. I've never been, obviously, because I just had my transplant last month. It's not like a marathon run or a gala. It's for our Transplant Family to get together and meet each other and donor families. The will be ceremonies of appreciation, speeches, and stories. The social worker there described it as, "very emotional." 

Just sitting here thinking about it, I imagine it as being "very emotional." 

I'm extremely excited about attending this event and feeling a part of this. Being able to see my fellow recipients, meet them and talk to them about their experiences and where they are in their lives right now.

But most of all, I look forward to being to meet and express myself (if I have the courage) to some of the donor families. I have not had contact with my own donor family as of yet, so being able to speak to them and maybe express to them a few of the things locked in my heart, those deep words of gratitude (although that doesn't even seem to be an adequate word, does it) would feel... 

Gosh, I really don't think there's really a way to describe it in normal human vocabulary. I think that's why it would take so much courage. 

Everyone that really knows me knows that since I was a kid, I cope with the stress of my illness through deflection with humor, and disassociation of just removing myself from a situation I don't want to be in, either physically or mentally, if necessary. Yes, I just admitted this to the entire planet. This isn't news, people. (Ah, there it is. Deflection.)  Now that I have my new lungs, I want to heal myself of all of these yucky bad habits, and feel and react like a normal person who wasn't sick her whole life would. I know this isn't an overnight thing, and will take work and time, but another thing about me is that I'm extremely stubborn and determined. That's why I've done so well so far with my recovery physically, add why I'll do even better with this part, too. Anyway, I digress.

I think I really, really digressed. Sorry.

I think, for me, expressing myself in this way will be healing. I have a deep, deep emotional gratitude for my donor and their family for what they did for me and mine. Without their gift, I wouldn't be planning for my future. I wouldn't have had one. Gratitude? Appreciation? Those words are tiny in comparison to what I think tansplant recipients really feel. What I really feel. 

So, April is Donate Life Month. How are you celebrating?

And off with her... Lungs?

 

So, the most common question I've been getting these days is,  "How does it feel to breathe with different lungs?" It's a common misconception that a transplant patient will feel like super person directly after surgery.  For example,  in lung transplant patients, the airways of their new lungs have to be reopened through breathing exercises and treatments, as well as the secretions removed through a series of several bronchoscopies. 

"Wait a minute, Strike that. Reverse it." - Willy Wonka

If you haven't already heard,  I had my double lung transplant on March 6, 2015 at 4PM. It was completed by 8PM,  after which I spent 7 days in CVICU.  Now,  I'm on the transplant floor,  working hard to be able to go back to our rented Houston apartment. 

Did I forget to mention to you that I have my new lungs? 

Now,  back to your question, "How does it feel to breathe with different lungs?."

It feels 

weird

fantastic

scary

stiff

wonderful

hopeful

like a privilege

When I first had the ventilator removed,  it was pretty disconcerting. I wasn't used to breathing in that manner.  The respiratory therapist explained that transplanted lungs need to be opened up; the airways forced open through breathing exercises and walking.  Also,  coughing is a must.  The post-surgical secretions, known by me and mine as "lung butter," need to get out of my precious new breathing machines! It's all very painful,  but you do it anyway,  because you know it'll be worth it in the end, and because you want to honor The Gift.  

Breathing without supplemental oxygen is awesome!  My nose is finally clearing up.  At first,  I would mildly panic when there wasn't something on my face because I was so used to a cannula or mask. But now,  I'm loving it.  Yesterday, I was sitting with my mom in our quiet, end-of-the-hall,  room with a big window,  (thanks Tracy and Erin!!! ) when suddenly I burst,  "I can carry a purse now!" It's the small things in life I want, like a Michael Kors bag.  Simple. 

They took out the final chest tube three days ago.  Those things are HUGE!  I was finally able to take really good, deep breaths.  It was amazing.  I'll have these lungs opened up in no time.  

Yesterday was the first day someone asked me,  "How do you feel?" and I thought about it for a minute,  and I a cut all you replied,  "I feel good." Now,  as for tomorrow,  that may be another story,  but I feel that everyday feel good will increase as time goes on. 

Unless you've had a transplant, there's no way to fully explain it.  But,  I'd like to share my experiences with you.  

Until then,  take a deep breath.  The O2 is fine out here! 

"Am I A Useful Thing?"

So, having been in hospital now for almost three weeks waiting for my sparkly new lungs, I've made a few observations. 

Natural sunlight is in fact necessary to human function and sanity. Loss of it results in loss of time awareness, such as:

"What time is it?" 

"10 AM" 

"Oh, I thought it was 6 in the evening." 

This also results in thinking either less or more time had passed than has really passed at all. Frustrating when waiting for an important event, for example, a lung transplant. Times like this really call for a TARDIS. 

Nurses have much better enunciation and handwriting then doctors. And manners. And personalities. And hair. 

The more you drink sub-par, watered-down hospital coffee, the better you think it tastes. Seriously, at 5 AM, it's simply fantastic.

But, most of all, the observation I've had the absolute pleasure of making the three weeks is that I simply have the most fantastic group of family and friends of any person on the planet. Hands down. Period.

When my illness first became intense, I went through a sort of culling period, where I realized that some couldn't handle my situation, and that I was going to have to come to terms with the fact that I was going to lose people during the progression of my illness. I think anyone who's gone through a serious health trauma has experienced this. While understandable, it can be shocking at first. 

But I soon recovered. I realized that the people that stayed with me would always be there, no matter what. And that quality is what really matters, not quantity. Life lesson. Check.

When Leland and I relocated to Houston for my transplant, I'll be honest, I was nervous. But, there was no need. The floodgates of our Christian brotherhood was opened to us, and we have been overwhelmed by the love and hospitality of all of our new friends!  We've had food, drinks, crafts, books, pampering supplies, games, cute stuffed animals, etc, etc, all delivered right to my room by smiling faces every single day. 

Not to mention all the calls, cards, emails, tags, and texts from my dear friends everyday.

My greatest fear I think was that I would sit in my hospital bed and life would go on and everyone would forget I was there and I would be alone. I said as much to our dear friend Sterling early on I this process. He told me that would never happen. And he was so right. 

Recently, some friends came and played a game with us where you guess a card you can't see on your head. You continue to ask the other players questions until you can figure out your item. One question Leland asked us about his card was, "Am I a useful thing?"

To my support system, my friends, family, congregation here in Houston and at home in Jasper, I say to you, you are a useful thing. The most amazing useful thing to me right now. And I thank you for all you do. And for who you are. And for being here through it all.