Monday, November 26, 2012


Being at home as much as I am, and alone, I have a lot of time to think. This can be a good thing and a bad thing. When I have time to be in my 'studio' I keep the music playing just to drown out my thoughts.

Last week Wednesday afternoon I was sitting with a new doctor, a hypertension and nephrology doctor. My blood pressure has been high and my kidneys are working at about 50% of what they were before my transplant. So my current standing is this, diabetic, hypertensive, high cholesterol, kidney issues, and bone density which has decreased instead of increased as hoped. So never having met this doctor and he not having read my chart AT ALL, before coming in he was surprised to hear my whole story in about three minutes. What I walked away with other than three new prescriptions is that my life before the ventilator has become a blur. I am not sure if that is because that life no longer effects this one because I don't have those lungs or what. Every time he asked a question it was, 'I think before the vent' or 'maybe it was on the vent', I just don't know. Call it PTSD or just plain forgetfulness but how does one whose life consisted of such turmoil day in and day out forget so much?

I spend many days going between two thoughts, time on the vent and my new daily life.

Having been on the vent is such a long time ago it has been over a year since my transplant. I however can put myself back in that room in a heart beat if I let my mind. I have moments in time that I remember. I have memories of my aunt being outside my window across the street waving, that was priceless and also one of my best memories. I remember my grandma's last visit, and sadly her funeral via internet from my room as my brother set up so I could watch it as it happened. I remember when the panic would set in every afternoon toward, the end, as my mom would wash my hair, suddenly I felt like I couldn't breathe. The fear of having a machine breathing and being in control is scary. I remember the night RT Ashley sat at my bed side while I fought with the vent, feeling it wasn't in sync with me.

I remember the night before my transplant when the article came out in the paper, for the first time in months I felt calm and didn't go to sleep wondering when it would come. Chris and I had finished Seven Brides for Seven Brothers, Mark was my RT, and Nicole was my nurse. Thanks to my pastors for bringing me to a point of contentment too, I was ready to leave this earth if that was the plan, I was tired of struggling, tired of waking up at six every morning to the same routine, and hating every suction and every beating and every vest time. The best part about RT was the therapists, not all mind you but the good ones know who they are. The lack of control in everything was the worst, when you are always in control it is a nightmare to let go.

Skip forward 12 months. This past week being Thanksgiving and all about being thankful, I was blessed to spend the time with all my family this year. First meal back at my mother-in-laws house since Spring of 2011. This Thanksgiving my siblings and their children all came for Thanksgiving and I got to spend every day with them. I even had my brother, sis-in-law and the two nieces over for lunch and we got to do some artwork together. As I was moving about that day and up and down stairs I couldn't help but think how great this was and how lucky I was to have these days with all of them. I sometimes stop and wonder what would be going on if I hadn't made it. It doesn't plague me, but I do wonder. I also know that someday that will be the case, but I will cherish these moments. I will cherish the things like Kai saying the word 'her' instead of 'she', or the way he crinkles his face. I will cherish the way Josie always finds a way to be close, even as she gets older she isn't afraid of laps or hugs, or any form of affection. How Grae sits and reads a book so big I would have cried at her age if someone gave me it, but she loves it. The girls laughing together is like music. And Cooper the one who didn't get to stay, that boy has so much love in him and he is so sweet.

Each moment is priceless, and my family means the absolute world to me. I would be nothing without them, they have been through hell and back with me.

So maybe there I days I think too much, but I maybe that is a good thing. I get to chance to relive the worst part of my life but followed by the best part of my life. It may not be perfect but being able to have one more day is better than anything.

Tuesday, November 20, 2012

Defining Myself

I think I said at one point I was going to try and get better at posting. I think I will try that again, maybe I need a more specific plan. Such as plan a post every Tuesday or Wednesday. I can collect ideas through out the week. Goodness knows I think about ALOT of things, especially when I am alone, at home, cooking and or doing other things around the house.

At this particular moment I am realizing my laziness has caused me some discomfort. What discomfort you ask? I choose to cut up my Serrano chili without wearing gloves - oops. Today I have two doctor appointments so I am trying to get dinner in the crock pot, tonight's menu, Chicken Tortilla soup. I have combine two recipes, one from Pinterest and one from Ree Drummond. We shall see how this tastes.

Yesterday, as is every Monday, was transplant support group. I don't go every week, other things going on, like my MCAD class that was every Monday for two months. Sometimes I am just tired by 4 pm, so I don't go. But when I do go I feel good when I leave. I realize that support groups aren't for everyone. I started going, very infrequently, when I was on the vent. I was invited by my transplant buddy, George, so I went. The longer I was on the vent, and then when I had to leave my room only on the portable vent I went a whole lot less often. One gentlemen that I have gotten to know over the last year plus, told me the other day I had a very emotionless face when I was on the vent, or rather the same expression, possibly fear. He also told me he really thought I wasn't going to make it, and he is happy he was proven wrong! Each meeting has many similar people but then others who are past transplant recipients who come back for their check ups and others who are on the waiting list. I can't tell you how many people I have meet over these many months, but a lot.

I also learned something about myself. As I struggle with the realization that the Graphic Designer I once was no longer exists. Not that I don't do it, in fact I do, but I also have stretched my artistic talents further than just digital art and frankly I love getting dirty creating with paint, pencils, and inks. There is nothing like it. But being the CE graphic designer, in some way defined me, it was something I put my stamp on and it felt good, even though stressful at times.

I have had, since transplant, a hard time defining myself, when I was on the vent I had many conversations with my brother about this life I was living at the time, patient, CFer, unknown future. Since my transplant I have had a hard time defining what this new life means, and often times wondering why I received this gift, why I was given this chance when so many others will not be so lucky. And if I am not the graphic designer for CE, who am I, what am I?

What I am is a survivor, I have been given a chance to redefine, or rather finally define who I am and why I am here. The one thing I get great satisfaction out of is meeting other lung transplant recipients or those waiting. I realize that each one of us has a different situation, from the underlying health condition to the place we live in this country. But the one things that is the same is that it is a struggle to understand that someone will die to save our lives, and what will life be like with new organs. Will the pains, and difficulties with transplant ever subside. Those are the things that bring us all to the same point.

I have meet another CFer, who is walking the same path I did a year and a half ago. I can't do much for her physically but I can give her the encouragement she needs to make it through this. I think support is the greatest thing anyone needs when dealing with this kind of situation. She is in great hands medically. CFer's are already resilient people, they know how to fight with all they have. But that positivity is imperative.

So, back to what I realized. There is nothing I know more about then what I have gone through these last many months and my knowledge, however difficult some of my memories are can help me help others. When it comes to life I think that is what it is about, our relationships with other people. It is our responsibility to help others when we have the knowledge to share. I love being able to share, and in some cases ease people's hearts. I spend 45 minutes talking to a woman I had never met about her husband 5 day old double lung transplant, by the time we were done she visibly was more comfortable. I didn't tell her things would be perfect but did say, bumps were normal and time would improve things. I remember having more questions than answer after transplant, and I know what these people are wondering.

What I realized is that I am an expert, of sorts, in something I never looked to be an expert in. Sometimes we look so hard we don't see what's right in front of us. I am still not exactly sure how to define this, but I will figure out how to fully share this knowledge I have. It makes all I have gone through worth something, suffering is difficult when going through it but if there is something to come of that suffering for someone else, it is worth every difficult moment.