Sunday, May 18, 2014

Waiting on a breath, forever and a day! On the List!



Hurry up and WAIT!   That's what this whole process is teaching me.  Patience surely is something that one has to embrace. Otherwise, one could go Bonkers!  At least, that is the way it has been for me. I am one who wants things done in a very expeditiously and efficient manner.  When I am told that things will happen in a certain way, I expect them to happen that way. When they don't, I'm okay with it but I at least expect the common courtesy of a phone call or email explaining why things are different. 

I arrived in Houston on Wednesday, May 7th and expected to be placed on THE List that day, as per my coordinator.  When I hadn't even received a call back from her on Monday, after calling her and the assistant numerous times over the course of the week prior, I called the patient advocate who contacted my coordinator's boss.  Long story short, I spent a week longer in Houston than I needed to...away from my dogters and hubby.  The reason being: incompetency and miscommunication on their part. Unacceptable behavior, in my eyes.

All in all, though there was a reason for coming when we did!  We were able to meet a gal, Anne, who had endured the very same double lung transplant which I will endure, just two years previously, here at Houston Methodist. She was going to be unavailable the following week so we took advantage of seeing her and picking her brain. We had a great lunch and she is doing extremely well.  It was yet another positive influence of what this whole adventure may reveal for me. Fingers crossed!

Anne was breathing freely and doing great!  I can't wait to jump in a car, unencumbered by oxygen tubes and breathlessness, and just drive to the beach or to a calligraphy meeting again!  Seems simple and easy, but it's not in this current state which I am in. I'm  trying to make the most of my situation and am quite lucky to have such beautiful surroundings to be convalescing in. Caroline and I are as close to the hospital as we can get, yet we feel like we are living in a resort with a backyard filled with tropical plants and a pool.  The weather has been so mild for this time of year that we often sit outside and enjoy the day.  It's fun being silly with my cousin as it alleviates the seriousness of what we are really here for.

At any moment, we could be called to "GET TO THE HOSPITAL as quick as you can, YOUR lungs are here!"  We are excited and nervous about how that moment will unveil.  I know it will be when we are least expecting it. I just hope it's sooner than later.  I wish there was something I could do to keep my mind off of it entirely, but no matter what I am doing, it creeps back in, slowly and surely. 


I am trusting my faith and know that when it's time, I will be ready.  I will be ready for whatever is on my plate du jour..  I am acutely feeling each moment and breathing as deeply as I can during this time of my life. Writing and doodling in my journal is one thing that keeps me pleasantly amused. Below is one of my entries. I am happy to say that I will be happy to rid my body of these lungs which I have had for nearly 50 years.  They have helped me achieve so many goals and live my life to the fullest so far. I will mourn for them and thank them for getting me here, but I am looking forward to my donor's lungs for the next (perhaps) 20.  What a miracle it will be to have someone elses lungs in my body. I can't even fathom that.  I know that the donor's family will also be in mourning and that has been a hard thing for me to wrap my head around from the very beginning.  I don't know how long I prayed on this aspect of the whole endeavor. What a gift of life they are giving to the recipient. WHY would anyone prevent another from living by not donating?  I know that it is such a personal choice, but once you really think about it... the option seems so obvious to me.
Of course, I have always been a very giving person.  My motto always has been, though, "To each his own".

I'm feeling a little more settled here, in Houston, now, but it's still very hard fitting the puzzle pieces together.  I found a quote which I posted the other day on Facebook which I will share here. I thought it was very much the way I was feeling.

"There are moments in your life when you know you are really living. There are times when you feel a pain so simple and pure that you know you will relive that moment forever. Life hands you a box of jigsaw puzzle pieces and says, “Go for it.” Some of the pieces are for another puzzle; some are old and shapeless. You fit everything together as best you can, sometimes even finishing a large section---only to find that the cat has two heads and the sky in the picture is bright red. Starting again, you see at least one tiny corner is right, creating a frame of reference for you to start to fit the rest together. You can’t stay in that corner, admiring your work for long though. There’s a whole puzzle waiting." Anonymous

I was saying good-bye to my Vessie before I left Austin in this picture.
It was one of the hardest thing I ever had to do.


Saying good-bye
Saying by to my dogters


I didn't want to let go. Getting and giving kisses for the last time.

A gift sent to add SUNSHINE to my day, from Sue-- in our guild.
SHE is a cup o sunshine, for sure.

This signed chalk board arrived in the mail a few days after I moved to Houston.
It was sent by my best buddy in Austin and signed by all my peeps in the Austin Guild.
It came on the perfect day... I was missing everyone so much and still do, but I can
look at it and be reminded of the "Army" of love behind me.

3 comments:

  1. love you and praying for you!! ~Jennifer

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  2. Your frustration is real and expected. Keep the faith and know you CAN do this! I live with one who IS doing it!

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  3. Beth, I know... Thank you for your inspiration and for Abner's presence at support group. He is amazing, as are you, to be his caregiver.

    Thanks, Jennifer! Praise Him!

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