Journey update

I made it. I am done with the IV antibiotics. I got rid of my pic line yesterday. I am done with the oral antibiotics. My hemoglobin is low (8.1, normal is 12 -25) and my red blood cells are low. I started on some nasty tasting iron tablets. I will have my blood checked again on Monday. I hope to avoid a transfusion. I understand why I have felt like doing nothing for weeks. I hope my energy will return soon.

I went to Duke two weeks ago. In the past two months my lung capacity has dropped from 31% to 25%, statistically significant. However my oxygen level stays decent (in the 90's). If I can maintain a good Oxygen level with exercise then I will buy myself some time. If not, then they would like me to move to Raleigh, NC to proceed with transplant. I've been to pulmonary rehab twice so far. I can do half of what I used to do (20 minutes as opposed to 40 Minutes). My oxygen level has stayed high. I am grateful.

I recognize that I am not ready for transplant today. (Will I ever be?) I need to get my house in order, literally and figuratively. Where to start when it feels like I have so much to do? I think I need a nap.

Time Will Tell

I usually enjoy politics. I love debates, the crashing of ideas against each other, the battle of philosophies with each candidate trying to get their point across in the most articulate way possible. In November, no matter who wins, history will be made.

However this year I'm having a hard time getting into the political arena. It's not that I don't care who runs the country; It's the realization that I may not be here four years from now. I am not one to be pessimistic but my meeting with the transplant team last week leaves me with a sobering understanding of the future. Less then 2% of people die on the operating table when they get new lungs; 10% die within the first year; 50% die within the first 5 years.

I know I have always beaten the odds with this disease. I assume I'll beat the odds of transplant as well. Yet the statistics still leave me with a sense of desperation. I not only want to live, I want to live fully. I want to surround myself with people I feel connected to, I want to have long talks, I want to linger at sunset, I want to laugh. alot. I want to worship, I want to take my kids to Disney World. I swing between being purposeful and serious to being silly and frivolous, it's a crazy, schizophrenic way of approaching life. I realized a long time ago most things that take our energy are not that important. So then, how shall I live? I don't know. I sense I'm at a new place. I can not assume life will go on as it always has, at least not my life. Time will tell.

The End of a Season

Monday was labor day, the end of summer. No more white shoes; no more long, lingering evenings watching the fireflies dance during dusk; no more carefree, unstructured days without the work of homeschooling; This past summer was the best of times and the worst of times.

I've already expounded on the worst of times in my past entries. I am still in recovery mode from my last hospital stay. I have two more weeks of IV antibiotics as well as oral and nebulized antibiotics. All the medicine is wreaking havoc with my stomach, it's like having constant morning sickness without the joy of a baby.

Now let me expound on the best of times. In between hospital stays I went on vacation. I travelled to Pennsylvania where my friends gathered for a 40th birthday party/fundraiser. It is most humbling for others to do for you what you simply can not do for yourself. Not only did they raise a tremendous amount of money (nearly $7000 in donations and pledges) but they wrote and spoke the most beautiful words to me. They spoke of how I have impacted their lives. They affirmed my past, present and future. They blessed me and gave me courage for the journey. I left the party feeling elated. My life has made a difference. My struggles have not been in vain, my pain has encouraged others who have been in pain. All is not lost.

I believe it is through relationships that we receive our wounds and it is through relationships that we receive our healing. My friends have blessed me and brought healing to my life. They have called forth my beauty; confronted my depravity; reminded me of my dignity and have loved me well. My party reminded me of the power of a well spoken word, the need to speak the truth to each other, the tremendous gift of forgiveness, the value of transparency and how much we need each other as we stumble along on our way home.

Coming To Terms

It's almost midnight and I am exhausted. I arrived home from the hospital last Wednesday. I am so grateful to be free of the confines of four walls. I will be on IV antibiotics for another month along with a nebulized antibiotic and two oral antibiotics. Although the the strain of pseudomonas that I carry is resistant to each of these medicines, they seem to be having a synergistic effect and I am getting better.

I am continually coming to terms with how sick I am. I'm not sure if it's denial. I am aware of the facts: My lung capacity (FEV1) is at 31%. My lungs have lost much of their elasticity due to scar tissue caused by so many infections. I have had 3 lung collapses and statistically will have more. Pneumothoraxes (holes in the lung) can lead to respiratory distress and heart failure. Lung transplantation is not merely a life extending operation, it is life saving. I know the facts yet I still struggle to accept that I am this sick.

I am a survivor, a fighter. I don't know when or how to give up. This has served me well at times. But now I feel tired. The trials of life are wearing me down. I am coming to a place of giving up, letting go.... surrender?!? Didn't I do that already?

Waiting

Please indulge me while I put aside my usual sunny demeanor and gripe for a moment - I'm tired of being in the hospital. I'm tired of being sick. I'm tired of the future being unknown. I'm tired of waiting. I'm tired of needing others, of being dependent.

When I get in a funky mood, like the one I am in at the moment, I have learned to sit in it. I used to try to get rid of it through the quickest pleasure seeking, pain numbing method available, this usually involved food of some kind. My weight has fluctuated 100 pounds over the last couple of decades. Now that I am committed to being healthier I look and feel better. The down side is I hurt more, or at least I feel the hurt more. The price of being real.

I have found that music can comfort me. Rich Mullins is one of my favorite song writers. I love this song-

Well, sometimes my life just don't make sense at all
When the mountains look so big And my faith just seems so small
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace

And I wake up in the night and feel the dark
It's so hot inside my soul I swear there must be blisters on my heart
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace

Surrender don't come natural to me
I'd rather fight You for something I don't really want
Than to take what You give that I need
And I've beat my head against so many walls
Now I'm falling down, I'm falling on my knees
And this Salvation Army band is playing this hymn
And Your grace rings out so deep It makes my resistance seem so thin

I'm singing hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
You have been King of my glory Won't You be my Prince of Peace

hospital update

I want to walk outside before the sun sets. After 5 days in the hospital I am feeling the need to commune with Mother Nature before retiring to room 921 for another night of luxury here at UT hospital, but first, an update.

The doctors took out my chest tube on Friday and my right lung is staying expanded. However, I developed a fever that evening and my oxygen saturation level dropped low. No matter how deep I inhaled I simply could not catch my breath. As panic set in and erased rational thought my nurses (notice they are now, MY nurses, not just the nurses) came to the rescue with calming words and an oxygen catheter. They quickly reassured me that I was not some mad, mutated mermaid slowly drowning while attempting to live underwater. I was safe on dry land.

**Disclaimer- this blog was written while I was under the influence of mild narcotics so read it with a grain of pepper.

Back to the hospital

Tomorrow morning I'll head back to my home away from home, University of Tennessee hospital. The pneumothorax in my right lung has not healed itself like the doctors had hoped it would. Ironically, the scar tissue is probably helping my lung to not further collapse. I'm hoping to not be in for too long, time will tell.