Posts Tagged With: Duke Transplant Center

It’s Easier The Second Time

I’m back in Durham, NC with my daughter, Anna. She has been listed for a double lung transplant. That means she is in the national registry of patients waiting for donor lungs. The first time she was listed 6 years ago, we thought the call would literally be in minutes after being listed. The wait was 19 days. When thinking in seconds, that seemed like an excruciatingly long time. This time around, we know not to hold our breath. We have been prepared by the Drs that this wait will likely be longer. Anna’s body has figured out some details about her current lungs that make it more likely to spot the second set more quickly if they have similar antibodies to the first set. So we have buckled in and are ready for the wait.

I love knowing, being aware of what is going on or likely to happen. So much of Anna’s journey has been filled with the opposite and I have to work super hard to just be in the moment. Honestly, I don’t really know what’s going to happen with her second transplant journey but I like to fool myself into thinking I know something. I do know the area, literally, and can drive with more ease as we go to appointments, classes and pre-transplant rehab. The classes help educate the patients and caregivers so we know what’s going on and what to do about all things transplant. For the most part they are refreshers since this isn’t my first rodeo. But there’s a lot of new information and classes they didn’t have 6 years ago. I am thankful to learn and relearn.

I feel more patient this time around. I like that feeling. On the flip side I also feel more dread. I don’t really know why but I do. Transplant has all kinds of nasty worse case possibilities from loss of fingers to death. I feel the weight of that more this time. It’s hard to hold my daughter loosely; remembering she is not mine and I do not have control over how her life goes. I was reminded of this in our Caregivers’ Support Group. It felt good to let myself connect with my fears and my sadness. Sometimes I can get wrapped up in tasks that I forget about the fragility of this journey.

Categories: Anna the lemon, emotions, lung transplant | Tags: | 6 Comments

Another Anna Update

Anna was at Duke University Clinic last week for a check up.  She had a bronchoscopy (bronch) and learned she does not have rejection!!!  No rejection means longer spans between bronchs and are a sign that her body is, at least for now, accepting her gently used lungs.  She has an infection and started a round of antibiotics that should take care of it.  It’s not debilitating and she continues to go to classes and work on making friends.  She says Pepper has more friends than she does.  This is not hard to believe because cute fur balls who love people generally attract a lot of attention! 🙂

Today is a big day for Anna.  It is her Golden Birthday!!!  In case you don’t know the magic of the Golden Birthday, it’s the day you turn the age of your birthdate.  Today is September 24th and Anna is 24!!!  I seriously can’t believe I am the mother of a 24 year old.  I’m turning 50 at the end of this year so I guess it makes sense, but I still have a hard time believing how quickly my first-born has reached this Golden Birthday!  We are all certainly thankful she has!  I don’t really care that I have to get older in order for my children to age.  There’s something about the years marching on that brings me a sense of “this is how life should be” and I like it.  I could do without the slowing metabolism, disintegrating muscle tone and loose skin but if that’s part of the price I must pay to watch my children flying out of the nest and on into their lives, then so be it.  I’ll try to keep my vain complaints to a minimum 🙂

If you want to wish Anna a Happy Birthday you may do so at her blog or on her Facebook page.

Happy Thursday!

Karen

Categories: Self-Help | Tags: , , , , , , , | Leave a comment

Purging Disappointment

Sometimes life goes the way we want it. In that space it is easy to be content, even filled with joy. We smile and laugh easily. The world around us tends to take on rich, extremely pleasing hues. I love that space! Reality is we aren’t in that space all the time every day. How do we find contentment when life isn’t going our way?

I’m finding myself in this very place right now. My daughter and I have been away from home for seven weeks and she is still waiting for her lung transplant. I had an expectation I would be home by Christmas. As the days slip by, my expectation becomes less and less a possibility.

Some days I find joy and peace. I sit comfortably in the place of waiting and examine the positives in my experience. I understand at a deeper level the disappointment of circumstances not cooperating with my expectations. I know what it feels like to want, to wait, to be let down. Without these experiences I cannot truly empathize with the rest of humanity. I would become isolated from reality. The disappointment and waiting parts of me are getting a workout right now.

Some moments I am angry, discontent or sad. These are not negative states. I see them as the eruptions of toxins inside of me. Volcanic eruptions, boils, whatever analogy you’d like to visualize. The icky stuff inside of me which is a natural byproduct of disappointment must come out before it turns into something more sinister and destructive. When I feel it surfacing, I let it out. Sometimes the release is in writing, sometimes pouring it out in a conversation with a friend or my daughter who is the best at really understanding because she feels it, too.

We have dump-fests now and then. The verbal purging of our frustrations or sadness. We don’t respond to the other with a positive, “it’s all going to work out” because we have learned those types of phrases really don’t help. We know deep down that whatever happens is part of God’s plan. But in a purging moment, we’re getting out the stuff that gets in the way of accepting that. The well-meaning words are like dams to our purge.

After a release of the ick, I feel better. I experience a balancing within, an acceptance of reality, a surrendering. I’m ok with being here however long it takes. I let go of my attachment to expectations and I find myself settling into the sweet spot of being at peace with my circumstances. I don’t stay here all the time. There’s a cycle:

1) Peace and contentment

2) Disappointment sets in as a result of wishing my life was different or my daughter gets a call there might be lungs for her which later turns out to be a “no” or I hear of a friend getting his transplant (excitement for him, sadness for us) or…

3) Anger or sadness begin to surface I think about it, churning the situation in my mind, creating stories of how long we’ll be here, seeing the worsts, getting madder or sadder or simply just feeling the reality which is sad and frustrating

4) Talking to my daughter, a friend or writing down what I’m experiencing, allowing a free flow of thought and emotion (usually tears) to pour out of me uncensored

5) Receiving a hug, words of understanding, essentially sitting in the pit with me without condemnation

6) A renewed sense of being able to get up, get out of the pit and journey on, at least for this moment

7) Peace and contentment

There’s no magic or short cut. I think this is the way we deal with disappointment, get stronger and simultaneously more compassionate.

Categories: Depression, Self-Help | Tags: , , , | Leave a comment

Get Through This Breath

Taking life a moment at a time has never been more profound than in this season of my life.  I’m away from my husband, my other children, my family and my friends while I have taken on the role of primary caregiver for my daughter who needs a double lung transplant. We are in Durham, NC awaiting her transplant at Duke University.  Some days I just move along fluidly in this current. It is effortless to be here but it is intensely strenuous to stay here. I’ll explain because that seems a bit incongruous. When I’m in the current it requires very little work on my part. I’m going the direction of the path I’m on. Moments arise when I’m looking at the river bank or an alternative current and I want to go there. As I struggle to fight my way into the other current or seek safety at the river bank, I get exhausted.

I want to go home. I want to be with my husband hanging out and enjoying his company. I want to be in the kitchen when my son comes home from school. While he’s busy getting himself something to eat, he talks to me.  I treasure that time before he disappears into his room to do homework, surf the net and play games. He’ll be graduating in two years. My youngest child will be going to college and our kitchen talks will be gone. I want to meet with my friend, Karen. We get together every other week at Starbucks to connect and challenge one another to grow. I miss hopping in the car and within a few hours being with most of my family. I miss the camaraderie of my Tuesday night Solutions group. We laugh and cry with each other as we learn to live healthier lives while watching and discussing Henry Cloud and John Townsend’s Solutions DVDs. I miss the comfort of my own home and I miss my dog!

I feel a bit like an Israelite wandering in the desert. God is providing for every step of our journey. I’m thankful for that but I also miss a lot! I wasn’t in slavery in Egypt like the Israelites. Colorado really is my home and the place I ultimately belong. It is not where I find myself today. When I think about all the things I don’t have and the place I am not, I begin to sink. When I think about how long I will have to be here, waves of panic crash within me. I can’t breathe. I freak out. Before I lose consciousness and succumb to the drag of the water, I remember one very important detail. I do not have to survive this for a really long time. I don’t have to think about being here for three months, six months, a year. All I have to do is focus on this moment. I just need to get through this breath. That’s it. Ah, relief! I can do this. 🙂  I know I can’t survive being here very long. But I know I can survive being here for this breath.  As time goes by all those breaths add up to an hour, a day, a week and so on. That is so much more manageable.

Live your life one breath at a time.  It really is the only way we can survive or enjoy the current we find ourselves traveling.

Categories: Depression, Relationships, Self-Help | Tags: , , , , , , , , | 2 Comments

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