Tuesday, July 30, 2013

The Best Kind of Friend

Life has a way of beating you down when you least expect it. After feeling amazing, exercising, and enjoying my summer I was shocked to lose 15% of my lung function in what seemed like overnight. Life also seems to have a way of lifting your spirits when you need it most.

A week ago I was venting to my very best friend on the phone. Despite living six hours away she has been my constant support through all the hardships life has tossed my way. I was telling her about my lung function drop and how much it effected my energy, my spirit, my life. She listened to everything that was bothering me and responded with all the right things because after 17 years of friendship she just knows what I need to hear. I felt better just letting everything that was swimming around my mind go free.

Fast forward to this past Wednesday. I was home with my daughter when I received a text from my friend saying she was in town. She drove six hours through the night with her one year old son to be there by my side during an extremely hard time in my mommy life. She came to help me with my treatments, my daughter, my housework, my sadness. She stayed in a hotel nearby and came to my home to clean, to chat, to love on my daughter. The four days she was here I was able to do my treatments while someone (well two someones- my bff and her baby) entertained my Kay. I had someone bring me coffee, dinner, and do my laundry. I had someone to lift my spirits and remind me that I have backup when it comes to dealing with CF.

My lung function is slowly, but surely going back up. I have 6% till baseline, but that is a huge improvement from the past few weeks. CF has a great way of bringing down your spirits, but lovng friends have great ways of bringing your spirits back up.

Tuesday, July 23, 2013

What Went Wrong

Continuation from my last post...

We both agreed that I did not have a major infection as I did not have any infection symptoms. After listening to my lungs he thought, due to little air movement, that I was just full of mucus. I was a little baffled as nothing had changed. I had been completely compliant with treatments and I had been exercising. The only explanation the doctor could give was that because of a heat wave (it was between 108 and 111) for a week straight that I may have gotten dehydrated and so my mucus got dried out and stuck. This made sense to some extent. I have had lung function drops in the past after extreme bouts of heat, but the drops were usually a percentage or two, not 15%!!

My husband and I decided to take a spontaneous trip to the ocean so that I could breath in the salty ocean air. I always feel better by the ocean and even though we only live a little over an hour away Kaylee had never been to the ocean. While at the hotel, I discovered what may have been the biggest issue with my lungs. I was nebbing and realized that it was taking a really long time. I looked in the cup and realized after 20 minutes it looked as if I never even started treatments, the cup was full. Suddenly, things started to fall in place. The prior week I noticed my neb was a little slow and had replaced the tubing twice in one week. I also noticed I wasn't coughing much during treatments, but thought it was because I was swimming so much that I didn't have a lot of mucus to move out. I realized that my neb (which was only a year old) was dying on me, but I really wish I would have discovered it sooner. I think the combination of the heat, dehydration, and a broken neb is what destroyed my lungs.

The good news is now I can work on getting my numbers back since I know what went wrong. I also don't have an active infection so it shouldn't be too hard (hopefully) to get my numbers back. The other interesting aspect is it proved to me how vital my treatments are. I absolutely would not be alive today if it weren't for albuterol, hypertonic saline, and pulmozyme. Missing a week (or two) of effective treatments proved that to me! It makes all the time I sit doing nebs feel worth it even if it is a pain.

The only glimmer of good news is that I gained a lot of weight! I am not quite back to baseline, but I am very very close! Hoping by next clinic I will be back to 125lbs!

Monday, July 15, 2013

Lung Function Dropped 15% in 15 Days

It has been an eventful two weeks here in the Hope home and by eventful I mean terrifying. Let me back up to two weeks ago (give or take)

Life was grand at the end of June. Summer was in full force and I was feeling great. My days were spent in the garden tending to my vegetable plants, cooking obscene amounts of food from produce picked from said vegetable plants, swimming almost everyday, and spending time with my new little nephew. I felt really healthy and CF was behaving for the most part.

What felt like overnight I started to feel a little bit more congested and full in my lungs. I started waking up with a cough in the night. I started to feel a little more CFy (so not a real word) than usual. I had a clinic visit in a few days and didn't feel like I had an infection so I wasn't overly worried and made sure to keep up with treatments.

The weekend before clinic (why does everything bad happen over the weekend) I could tell something wasnt right. I did not feel like I was getting enough air even when I was completely inactive. My husband and I went to the pool (Kaylee too) and as we often do we had little competitions in the pool (while Kaylee was the official judge). You know, competitions you have in the pool when you are seven years old, yeah we still havre those. This particular day we had a treading water competition- I totally won, but could seriously tread water for hours...hubby on the other hand can last about 30 seconds before the lifeguard needs to be called in. Next, we wanted to see who could stay on the bottom of the pool longest. Hubby sinks like a rock, I float so I made it about .02 seconds and totally lost. I blame it on air pockets in my damaged lungs, but hubby doesn't buy it. We then tried to see who could swim underwater furthest without taking a breath of air. This is actually a fair fight because he holds his breath longer, but I am a much faster swimmer so it is always a close match. This particular day I lost so horribly I was actually ashamed. I knew my lungs were bad at the moment, but this was just depressing! After our competition I had to do my laps, but after 3 laps I felt as if I couldn't breath. I just couldn't catch my breath and had to get out of the pool to sit down. I was terrified for clinic the next day.

At clinic the doctor came in and I explained what was going on. I thought maybe it was an asthma flare up so he listened to my lungs. He quickly ruled out asthma as my lungs were quiet...too quiet. In fact he heard very little air flow. This was not good. Next, I got my FEV1 results. I was 15% below my low end baseline, 20% below my high end baseline. I am not sure I have ever seen numbers that low and the thoughts racing through my head were terrifying. How could I go from feeling amazing to completely breathless in such a short period of time with no sign of infection? I almost did not want to hear what the doctor had to say.

Up next- What the heck happened and what happened at todays clinic (one week later).

Saturday, July 13, 2013

13 Months

Dear BuggyBoo,

You are 13 months today! My Nana (your great-Nana!) said from 1-2 years is her absolute favorite age and now I know why! You make Papi and I laugh all the time! You are getting to know your world and trying to find your place in it which is fascinating to watch. You know what you like and dislike and make it known- sometimes to our pleasure and sometimes to our horror! You ask for things now using the limited vocabulary you have and you tiny pointer finger. For example, your Papi plays a game where he takes of his shirt and whips it to make wind in your direction and then throws it over your head. You LOVE it. Whenever you see his undershirt you pull at it saying, "mas, mas, mas"

Not only do you know what you like and dislike, but you also stand up for yourself which I love to see. You are a strong little girl and I know will grow up to be a strong woman! Once in Spanish class a little boy wanted to take your toy. You buried it in your arms and ran away saying, "no no no!" Everyone in the class was laughing because it was so cute.

Things You Like: You love to reenact everything Mommy and Papi do. You try to put on my shoes, you try to put on your own shoes, you try to put on my sunglasses, and everything is a cell phone. Your cell phone conversations go something like this: "hi, dada!" "lalala(which sounds almost like a yodel)"....(fake laughing and bending over because you are "laughing" so hard)..."lalalala" (more fake laughing)....bye!

Things You Dislike: Clothes and especially diapers. You are my little nudist and since it has been so hot you stomp around the garden in your birthday suit. It is hard not to smile seeing you marching around naked! 

What I Like About This Age: I love that you understand humor now. Sometimes you will pretend you are going to bite our toes and then pull away at the last minute laughing. You love to put things on your head because you know it is silly. You also totally get when we are trying to be silly too. It makes for such fun interactions.

I also love that you are more socially aware. Papi and I were eating at a restaurant the other day and there was a group of elder women at the table next to us. You were intrigued (and not yet socially aware that eavesdropping is rude) and watched them the whole time laughing when they laughed, looking serious when they were serious, and chattering away with your babble when the conversation got lively. 

New Words: Nana (my mom), Papa (my dad), ojos (eyes in Spanish), ball, ouch, hot, agua (said perfectly now), bom bom bom (when you want to hear your song, bom bom bomberos!), and of course pee pee, poo poo.