Thursday, January 29, 2015

ICU

I am on a waitlist to get into ICU. Yup, ICU as in intensive care unit. I never realized there were waitlists for such places. Makes it sound like a nice restaurant or swanky hotel despite the fact that I don't think anyone ever wants to end up in ICU. Thankfully, I am not critically sick which is why I have been waitlisted. I do however need a nice dose of IV antibiotics. After calling the doc asking for a two week tune up I learned that the bugs I culture and my body have made a pact against me. It seems the bugs wreaking havoc on my lungs are only susceptible to medications my body decided to become allergic to.

The good news is that being allergic to medication does not mean you can't take them. It simply means you need to be desensitized to the meds in an environment that you can be watched closely to ensure that there is no reaction (I think anaphylactic shock it the biggest worry) hence the ICU reservation. I was told my name was on the list and an intake coordinator would call me when a bed opened up.

Na├»vely, that weekend I carried my phone everywhere I went, checking every so often in case I missed the call. Then Saturday night turned into Sunday. My hubby took Monday off in case the call came. As Monday came and went we realized this wait may be longer than anticipated. We have been waiting almost a week now with no sign of an open bed.

In the time I have been waiting I have had some orals, a week of IVs (Aztreonam) that we decided was ineffective and I have switched back to orals. I am hoping these orals do a better job of holding me over until a room opens up because I am feeling desperate for some relief.

Hopefully, in the next few days I will be updating from my hospital bed!

Tuesday, January 27, 2015

Empathy

The other day I tried to return a call from a friend, but got her voice machine. Her son is the same age as Kaylee and they often have play dates. Recently, with winter here, her friend was sick for so long we had to postpone play dates for three weeks in a row and the week after out playdate he ended up in the hospital due to sickness. As I hung up the phone, disappointed my friend didn't answer, Kaylee came walking up to me.

"So mom, how is Ethan feeling today?"
I looked up from my phone not realizing she was standing there. Her big blue eyes were looking up at me eagerly waiting for my response. I was surprised she remembered he had been sick as it has been several weeks since a canceled playdate.

"He is all better. That was nice of you to ask about him"
Kaylee responded with relief in her voice, "That is very good news!"
and ran off to play.

So much of the time I worry CF will fill Kaylee's memories. That she will remember the times we spend in the doctors office, or the nights I wake her with my cough from the next room over, or the way I always decline chasing her through the park because my old lungs simply can't run anymore. Or the times she wants me to carry her and I make excuses because I hate to tell her no, but in reality my breath is too shallow and I have days I simply can't manage walking and holding her. Or the times I huff and puff at the top of the stairs, or the times I need to nap instead of being able to play, or all the horrendous moments CF has put in our lives.

But maybe after two years of motherhood and 30 with this god awful disease I have finally seen something good come from such an ugly part of life. At two, Kaylee has learned to think of others which is something many adults have not yet mastered. Maybe CF is giving her life lessons she could not possibly learn with a healthy mom. Maybe this disease will teach her first hand about empathy and thinking of others. Having CF be such a large part of her life may fill her memories with hardship, but maybe it will fill her heart with understanding. Maybe despite all the horrible aspects of CF it will teach my daughter about the more important parts of life, to connect with and understand others. Maybe a part of her will grow up grateful for the lessons she learned from CF rather than a hatred for all it took from her. And maybe I am learning more about accepting the life I have been given from my daughter than I ever imagined possible.

Sunday, December 28, 2014

Change

The last few months I wasn't able to blog much due to a rather ancient computer that tired out and left me hanging high and dry. I am back online and hopefully this computer will stick around for a while. This past year seems to have been a blur of sickness, meds, and doctor appointments. As the new year approaches I can't help, but silently hope and wish for a healthier more stable 2015. And yet, in the back of my mind I hear the words I spoke at the end of 2013, that I hoped for a healthier and more stable 2014. I have been thinking a lot, often while sitting in the doctor's waiting room, about my health and the lack of control I have over everything. How despite being compliant and aggressive with treatments my health seems to yo-yo in ways I never imagined possible.

In recent months I have seen gains I only dreamed of in the height of sickness last April and yet just as quickly as those gains come, they seem to disappear and my health tumbles to new lows. This taste of healthier days, filled with more energy, more endurance, the ability to exercise tease and taunt my very soul, "Look how wonderful it is to be able to jog on the treadmill and feel your legs tire below you and how amazing it feels to gulp that oxygen into your open lungs. Feel how liberating it is to walk all afternoon without that all too familiar feeling of drowning. Notice what it feels like to be everybody else. Now just wait, because tomorrow you will open your eyes and for no reason your lungs will burn, your breath will be shallow, you will struggle to walk to the bathroom and you will question your sanity that this amazing day with a chest full of healing oxygen and a body that seemed to function just as it should even existed."

This has replayed over and over the past several months. Making me crazy with anticipation for when my health would return and fearful of every minute that passed that I felt well knowing all too well it would disappear with a blink of an eye.

And so I am learning to be grateful despite the endless sickness, the tiredness I can't shake and the infections looming around the corner. I need to learn to be grateful or go crazy with the instability, lack of control, and constant fear. I am adjusting my expectations and learning to enjoy the good even if there seems to be so much more bad. The days I find my breath shallow and labored I remind myself to be thankful that the fevers have stayed away for weeks. On the days I can exercise well I try not to think what tomorrow will bring and enjoy that I was able to exercise at all. I try not to look into the future, but rather stay in the moment because a good morning does not guarantee a good afternoon and a healthy few days does not mean that this disease is backing off.

The chronic, never ending feeling this disease brings can be exhausting. Thinking of my future, the slow decline, what my life will be like at 35 or 40 can feel overwhelming. I can't even begin to picture myself 15 years from now. And so for now I will take it day by day, moment by moment. I would love to wish for a healthier 2015, but instead I will hope for a better perspective, a healthier outlook on life. I will always hope for healing and stability, but knowing CF is chronic and ultimately fatal I will not hold too tightly to that hope. Instead I hope to enjoy each day that comes and find the good in every day regardless of my state of health. So much of our lives are so completely out of our control and often the only aspect we can control is our attitude. So my lung function may or may not be higher in 2015, my lungs may or may not struggle to breath more often than not in 2015, and my bacteria may or may not continue to win over precious real estate in my lungs, but I do know that I will enjoy 2015, CF be damned!

Friday, December 19, 2014

Two and a Half

Dear Takey,
You are hurling towards three and I am just trying to keep up with how fast you are growing! You spend your days trying to be  as independent of me as possible only to run back in my arms and snuggle close asking me to carry you "like a tiny baby". You are discovering who you are and who you want to be testing your wings (and at times testing me!)

A trait you have had since you learned to talk was bossiness! You also are a rule follower and you like to enforce those rules (hence the bossiness). On playdates you are quick to tell your friends what isn't acceptable, "No climbing on the table!" You shout to squirrels or cats that may wander in the road ensuring they understand the rule is, "You have to hold hands when crossing the street!" You also are wildly bossy (in a loving way) to your cousin. Recently, at my parents the two of you went outside and when your cousin ran to the (locked) pool gate you ran after him.
"Stop! Stop! Look me in my eyes. Do NOT go in the pool!!" Needless to say we are working on respectfully telling others the rules.

Your imagination is bigger than life! You pass in and out of pretend and reality that i often confuse which is which. Like when you shouted there was a black widow in your cup. I ran with the speed only a worried mother (with crap lungs) could run only to watch you coo into your cup at the imaginary black widow mommy and baby pair. There was also the time just after you turned two (before i realized how much time you would spend in an imaginary world) that you shouted to me that it was too dark to see. We were in the sun filled living room and I had slight concern for your eyesight. W
hen I inquired you explained, "I pushed this green button o
n the wall and now it is dark!" and then just to be sure I understood you assured me, "Mama, it's just pretend".

You are wildly independent and refuse help when going to the bathroom. You use a chair to turn on the light, hoist yourself on the adult toilet, you flush and even turn off the light yourself. Other times you ask me to cuddle on the couch and pretend you are a tiny baby. It this dance of running from me to be independent only to run back for reassurance. It is wonderful watching you grow and change, but I am glad my arms are still your favorite place to be.

Sunday, October 12, 2014

Where We Started

I havent updated in a few months. I am currently without a computer and trying to type without a keyboard is challenging to say the least. However, I do want to update.

My last post life was turning around after a grueling 18 months of endless setbacks. I felt I was finally getting a hint of my old life back and started, just started, to feel some hope for the future with my husband and daughter. Oh, but life is cruel and less than 2 months later I am back to my lowest lung function, 30%.

About two weeks ago after finishing another round of antibiotics I started waking in the morning with extreme lung spasms. The spasms were so bad that I would be on the floor, coughing, choking, and throwing up unable to function until my lumgs calmed down again up to an hour later. I knew it wasnt an infection because once ,y spasms would stop I would be fine the rest of the day. I went to the doctor and he believes I was experiencing acid reflux at night that was actually going into my lungs causing the extreme discomfort.

The good news is after one dose of antacids my horrific spasms ceased. However, according to my home FEV meter my lung function hasnt changed. You win some you lose some, I guess.

Thursday, August 7, 2014

No More Cough Cough

I have been doing really well keeping up with my exercise routine to the dismay of my daughter. She started crying whenever she saw me put on my exercise clothes. The other day I sat her down and explained that exercise helps mommy's lungs so that I don't cough so much. She seemed to understand and whenever she starts to get upset at the prospet of me leaving to the gym we talk about why I go to the gym and she usually calms down.

Last night, I had a horrible night cough and spent most of the night awake hacking away. Around 5am I found little Kaylee at my bedside where she whispered, "Kaylee exercise with mama so no more cough cough."  She doesn't actually know what exercise is, but she knows it helps me stop coughing. Despite waking her up two hours early because of my cough she came in my room full of love and a solution. I love this kid more every single day.

Friday, July 25, 2014

6 Weeks Later

About a month and a half after my first positive appointment in about 18 months I had a follow up appointment. To say I was nervous is an understatement. I felt much better health wise than when I was at my worse, but wasn't so sure I was any better than my previous appointment 6 weeks ago. When my health improves or declines slowly I seem to adjust with the change and it can be hard to measure the differences I feel. "Did I have this much energy two weeks ago?" "Was I coughing more than this after swimming last weekend?" can be impossible questions to answer because these changes can be so subtle.

So Monday morning as I waited for my PFTs I kept reassuring myself that as long as I didn't lose lung function I was okay. I had energy again, I was swimming again, I maintained my weight without supplements (I stopped Megace and due to an insurance issue didn't have Ensure). So although I wanted 35% (the goal I set for myself) I couldn't be too upset as long as I blew a 33.

2 months ago my PFTs were in the high 20s. 6 weeks ago I hit 33%. Last Monday I surpassed my goal of 35% and saw a beautiful 39% flashing on the screen!!! My highest PFT since getting the flu including my PFTs after all my IV abx and hospital stay.

And so this is officially my come back! My weight is stable despite being off Megace, my PFTs are climbing, and my monthly clinic visits were changed back to the typical once every 3 months. Watch out 40s here I come.