Stability feels good

"Clinically Stable". That's what the doctor's report said about me. It's been a while since anyone has described me as stable, for that matter, it's been a while since I've felt stable. Usually, when the lungs deteriorate to the point when spontaneous pneumothoraxes (holes in the lungs that cause the lungs to collapse) occur there is a downward spiral.

I've been home a week. I do not have to return to the transplant clinic until May. I only have five more days of IV antibiotics. I feel like I have turned a corner. For the past nine months my life has centered around the possibility of transplant. The fundraising, pulmonary rehab, doctor appointments, four hospital stays since last July...my life was consumed. It's time to focus on other things, time to broaden my view, search the horizon for other possibilities for my immediate future, time to move on...to what? I don't know but I'm going to have a good time figuring it out.

I'm free!

The ducks, oops, I mean doctors have made their morning rounds and their verdict is in. I've been given my walking papers. Let freedom ring. Around noon I will roll out of this hospital, pay my huge parking garage fee and be on my way. The sun is shining, the birds are chirping and all is right in the the world. (I can dream ok.)

Being in Durham for nearly 6 weeks has stretched me, at times I thought it would never end. But it has passed. I am reminded of a wise saying I picked up some where along the way-
Nothing very, very good or very, very bad, lasts very, very long. My time here is finished for now. I am going to relax and enjoy the long ride home.

IV treatment

I'm in the hospital. The oral antibiotics I've been on for the last 10 days were not strong enough to clear up my lung infection so I am starting on IV antibiotics. I'm at Duke hospital. The rooms are small but modern. The staff has been kind. Duke is a teaching hospital so when I see one doctor I see his entourage of medical students following after him, they look like baby ducks following their Mama duck. I must be getting old because these medical students look like they are right out of high school. I've got clothes older then they are. I hope to only be here for a few days. I'm ready to go home to Tennessee.

The Challenge

Rest and relaxation is good for the soul. Tom and I met up in Hickory, NC for the weekend. We hung out with my adopted family, the Hartzler's. Rich conversation, competitive rook games, playful banter that comes with people you know and love well. What more could I ask for. I feel refreshed and ready to finish my last week of pulmonary rehab in Durham.
I am overwhelmed at the thought of going home and trying to incorporate the exercise regimen I've been on. I know it is vital for my health to continue yet I struggle with feeling inadequate to get everything (cooking, cleaning, homeschooling, nebulizers, chest therapy and exercising) done.

The challenge
The needs are great
the resources are few
I am wondering how I'm going to get done
all that I have to do.

I've come this far
I will not turn back
God has provided
I have not lacked.

What's ahead I do not know
the future is hard to see
I know I'll get by
if I stay on my knees.

One step at a time
I say with labored breath
knowing I long for life
I will not give into death.

Not Yet....

I met with the doctor today. He said we are going to put off transplant a while longer. His reasons were I'm not on oxygen (some people never go on oxygen before transplant). I am relatively healthy compared to other Cystic Fibrosis patients (I always have been). Bottom line is He thinks ultimately I will live a longer life by putting it off as long as we can. His exact words were "Tina, If we did the surgery and you die then I'm going to feel really bad knowing you could have had more time with your family." OK. Reality check. More time is a good thing.

It's just that I have to adjust. Again. Transplant is still looming out there, in front of me. I was ready to get it behind me and be well or at least better then I am now. I long to breathe and not think about it. I want to make plans that don't have to be cancelled at the last minute because I'm in the hospital. I want to work again. I want to have more energy. I want it all. Right Now! Ugh, I am an impatient patient.

Bygone birthdays

Today is Austin's birthday. He is now 9 years old. I have been moody all day, wanting to be there, having to be here. This is not the way it is supposed to be. Although I can't be with him today, I hope my being here will insure that I will have many more birthdays to celebrate with him. My son is a blessing.

Monday, monday, can't trust that day.

Mondays are the hardest day for me. I have to say goodbye to my family. I have to return to pulmonary rehab. I have to adjust. Again. Sometimes it seems like life is one big chiropractic appointment, full of adjustments.

TGIF

The end of the week is better for me then the beginning of the week. Thank God It's Friday means I get to take a break from exercising and my family comes to visit. My dear husband has been driving seven hours (one way) across the mountains to come every weekend, sometimes he brings the kids. This weekend the whole family is going to the beach. Fortunately it is suppose to be sunny and in the mid 70's. We are celebrating Austin's birthday. My youngest is turning nine, last of the single digits. I cherish these moments together, they seem so fleeting.
I am not feeling at the top of my game. I am fighting a lung infection. I went to the doctor today and have begun a round of oral antibiotics. I will try them out over the weekend; Time will tell if the bug I carry will respond. Cultures take a few days to grow out so we begin treatment by guessing what germ I have based on previous experience. I have taken so many antibiotics over the years that the germs I carry have adapted and grown resistant to many common drugs. If the oral medications do not clear up the infection then I will go in the hospital to start IV treatment.
The doctors here know me and recognize that spending time this weekend with my family is important. I appreciate that they treat the whole patient and not just the disease.

The Beach

I am a determined person. In spite of a predicted winter storm that was supposedly heading our way I went to the beach. I sat by the ocean, the comforting sound of the surf was calming. The sand beneath my toes was a familiar feeling that I associate with being young, full of energy, free and frivolous.
I sat there gazing at the ocean for a long time, I prayed, I cried, I pondered, I got cold. I sat under my umbrella, bundled in jackets and blankets, rain pouring down, temperatures hovering in the 30's watching the only other people brave enough or crazy enough to venture out in the weather; The surfers, in their skin tight black wet suits looking like seals having a party. They were having a great time, getting up, riding their wave, crashing down only to rise again seeking their next wave. Near freezing temps were not going to stop them from having a good time. Perhaps when I get my new lungs I'll learn to surf. They look like my kind of people.