Why not take the plunge?

Since a bi-lateral, double lung transplant  is the "cure" for cystic fibrosis many have asked how come I don't just go ahead and get this procedure done.  There are plenty of times when my sentiments are the same.  I'm tired of being in limbo, struggling to maintain my health only to have infection drag me down again.  Enough already, out with the old, in with the new, let's get on with the next chapter in this book of my life.

Like most problems in life the answer of transplant is not simple.  The variable and complexities are many but can be narrowed down to a prime directive that dictate who gets lungs and when:  The doctors' priority is to keep you alive, so simply put, when you can live longer with transplant then without then they are ready to give you new organs.  Statistically speaking, the average lung recipient lives five years after transplant.  Ugh, the harshness of math, cold and calculating yet conveniently clear and comfortably measurable;  the language of science is black and white.  Other considerations for transplant such as quality of life, cost of care and the psychological/emotional impact of chronic illness are left to drown in the murky,  muddy waters of  feelings, beliefs and ethical dilemmas.

Life is simple.

GOING HOME.

Again.

Grateful.

Today's Longings

Entering day five of the second hospital stay of this year. I have not been "well" since the beginning of the year. I spent three weeks in February in the hospital, went home tired, completed two rounds of out patient antibiotics with no real relief so I'm back at UT hospital.

I am discouraged. Seems I've developed some new challenges. My oxygen saturation level is not stable. My hemoglobin continues to drop. I received a blood transfusion today. Now the questions are why is my hemoglobin low? Will my body respond and begin to hold onto the red blood cells that were replaced today. If not, then???????/

My experience with chronic illness is that it throws life off kilter. Getting better only to get worse again is demoralizing. I long for consistency.

Constantly fighting the resentment due to missing out on events, laying in bed on beautiful days, wrestling with the "big picture" so much that it is exhausting to think of the the daily necessary details of life AND at the same time acknowledging that I am one of the "lucky one" leaves me on an emotional see saw ride, up and down, up and down. I long for steadiness.

What does tomorrow hold?

Trying to remember who I am.

A few years ago if you would've asked me who I am then I would've spouted off a list of what I do. The list would vary depending on when on the time line you asked but may have included any combination of the following: wife, mom, counselor, professor, speaker/teacher, realtor, landlord, property manager, bus driver, social worker, home school teacher, case manager, program director, board member, grant writer...... the list would've been long because I was busy. I enjoyed being busy. I enjoyed setting and obtaining goals. I enjoyed multitasking. I enjoyed the controlled chaos of juggling family and career. I enjoyed doing.

If you ask me today who am I then you will get a different answer; depending on who's asking and my mood, I might say that I am a domestic goddess. This sounds so much more luxurious then homemaker. Or I might say I am a psychology researcher conducting a long term field study on child development i.e. a homeschooling Mom. I might even say I am a professional patient helping to identify the flaws in our current health care system (and there are many).

However, ever so slowly and painfully, I am coming to understand that who I am is different then what I do. Because of the "gift" of sickness, I do not do nearly as much as I used to do; nor do I do as much as I want to do. I do less but I am more; or at least more aware of who I am.

Wow, it's late and I am not sure I am making sense. Time to stop writing; ending this entry with this quote- “I am so clever that sometimes I don't understand a single word of what I am saying.” ― Oscar Wilde

Resurection Day

Setting aside all arguments, not getting caught up in the understanding (or lack of), choosing to dwell on the hope of all hopes, resting in pure goodness. This is what my belief looks like today.

Today I am reminded that I am not the only one who has been amazed, bewildered and surprised after being disillusioned, despaired and demoralized.

Today is a good day.

Tethered to reality

Today I went to lunch with friends to the Dam deli down by the Ocoee Dam desperately needing to get out of the house, tired of being inside. I wore my oxygen, carrying my portable tank like a backpacker out for a hike. I am accepting that I need O2 for comfort. I describe this like a luxury, an accessory, like I prefer my tennis shoes over my heels because they are more comfortable.

Before today I chose not to wear my oxygen, I didn't "need" it. I could compensate. I used to front; to make up for my shortness of breath by slowly walking. I would stop every 10 feet or so to catch my breath, standing still, trying to appear casual, looking closely at a bush or a sign, taking my time strolling. This used to be more comfortable for me for once I got where I was going, once I set down then the shortness of breath would go away and I would go about life like everyone else; Almost....... I got along fine as long as I did not move too much, talk too much or God help us all, laugh too much. Any of these activities could trigger a coughing fit that would violently shake, rattle and roll my body until everything settled down once more.

Fronting is not an option right now, strolling does not work, Walking for just a short distance leaves me gasping and coughing, not a pretty sight. So today I chose to wear the nasal cannula tethering me to earth, my lifeline that keeps me grounded. You can't avoid looking sick when you have O2 flowing up your nose. It's quite apparent something is wrong. The secret is out, all the world knows you are not right. I suppose I will get used to this new level of exposure. I struggle with people knowing something so personal about me so quickly, first impressions and all that. They see a sick woman.

I am sick AND I am so much more. After resisting for so long how sick I am slowly coming to terms. Again. I am at a new level of need, perhaps permanent, perhaps not, time will tell. May I accept reality as it. May I stay tethered, learning to live within my limitations and soar above the challenges at same time.

Sticky keys

The 'h" and "g" key sometimes stick on my lap top. I will be typing along not even realizin tat I am missin out on tese keys until i proof read later. It's better that way, if I proof read while I am typin then I will be constantly correctin myself. Te flow is missed.

Rite now I am missin the flow of my life. Seems like I am constantly stoppin, assessin, am I doing tis or that right. If I try harder, ponder more, smell te roses, rest, play, work and perfectly balance my life will I be appier? more satisfied? tranquil? ealty?

The last one is particularly tricky? ow much do I ave to work at being healthy. Work being te operative word here. Feels like I am always fitin a slippery slope of disease. I spent 3 weeks in te ospital in February. Wen I left I did not feel "riht" but tey had done all they could do; a full course of antibiotics.

Wehn I went for my follow-up appointment te culture came back positive. Te bacteria in my lungs was still there. Time to start anoter round of anitibiotics, tis time outpatient; tis time accompanied by a nitly fever, more congestion, lower oxyen saturation levels and no enery.

Today I laid on my deck all day, te oxygen teterin me like te man on te moon so I don't float away. I am very aware that I am limited rit now, tryin to live my life within different parameters. I can only ope that witout all my keys the messae will still come through; although I'm not quite sure what I am sayin. I'm just sayin.