Wednesday, August 17, 2016

Missing Butterflies

I have been posting so many boring health updates so I wanted to share a cute story for a change.

My four year old hates when I get IVs. She calls my accessed port "the tube" and there seems to be nothing she hates more than when I get "the tube." The last few times I needed IVs I was in the hospital so she equates IVs with mommy leaving.


Here is a picture of the butterfly after we de-accessed.
No matter how many times I took this photo
it came out blurry. Sorry!  
My doctors agreed I could do home IVs this round of IVs (before we knew how disastrous it would all turn out) and I was hoping that would change Kaylee's feelings about "the tube." When my port is accessed the safety on the needle (the part that helps slip the needle into a sleeve when it is pulled from the port so that nurses don't stab themselves with my used needle) resembles a butterfly. So I tried to rename "the tube" to "my butterfly" to take away some of the fear she has put around my IVs.

Unfortunately, she still hated my butterfly and asked me daily when it would go away. After 21 days my husband pulled off my dressing and Kaylee watched as he pulled my port needle out of my port. We all cheered because it signaled IVs were done (even though it was bittersweet for me because I didn't feel any better). As I turned to look at Kaylee I saw her eyes full of tears, "Can you just wipe my blubbly eyes, mommy" (blubbly is what she calls her eyes when they are full of tears. It makes no sense, but she has been doing it since she was really little so it has become a real word in our household). My heart sank. I thought she would be overjoyed that my IVs were officially done and yet her eyes were full of tears.

"Can I ask why you are crying?"
The tears started flowing the second I said those words.
"I am going to miss your butterfly!"

I guess the end of IVs was bittersweet for Kaylee too. Sure, the dreaded tube was gone which meant fewer doctor visits, less restricted play with mommy, and no crazy IV schedules, but it also meant her beloved butterfly would be gone.

Monday, August 15, 2016

Goodbye Spots, Hello Fevers

*warning: TMI info about sinus issues below*

After 8 days my hives officially disappeared! In true CF fashion I guess I picked up a virus because I started getting tons of sinus drainage, a very congested wet cough, and the feeling of drowning came back.  The constant Benadryl may have had something to with the sinus issues because it can dry out secretions. I had almost constant hard sinus crud " draining" (more like tumbling in slow motion and frequently getting stuck) down the back of my sinuses. It was bad! The kind you can feel wedged in your sinus and can smell the bacteria before it dislodged (tmi, I know).

And then the fevers started. I already had meds at home that I was supposed to start right after IVs because Zosyn didn't work. However, I had to wait for my allergic reaction to Zosyn to wear off before starting new meds. I am so relieved that the hives are finally gone so that I can start taking my new med combo. I am so hoping that these meds work because we are approaching two months of dealing with this exacerbation that just doesn't want to leave. I feel like I lost the bulk if my summer to being sick or trying to recover. Our family loves summer because we love hiking and going to local lakes and rivers, but this year my health has kept us home and I can feel summer already slipping into fall. Mainly, I am just ready to have a clinic appointment that actually goes well (or at least decent) especially as we approach the winter season.

Friday, August 12, 2016

Spots

I am trying to catch up on updating everyone on my summer health saga, but a lot has happened so I am back tracking a little. This is an update from about a week ago, right when I finished three weeks on Zosyn after two weeks of Levaquin.

During this time I started to improve a little and was feeling okay. I was not back to baseline, but decent. And then the day of clinic I woke up feeling so exhausted that I felt like I was sleep walking my way over to clinic. The second my doctor walked in the room he took one look at me and said, “You look tired.” My PFTs weren’t exactly what you would expect after 3 weeks of IVs following 2 weeks of orals. I was up 3% from my last appointment, but still 5% below my “minimum” baseline and 9% from my ideal baseline. We made a new and somewhat unusual plan, but more on that later.

The next day I was so excited to get my port de-accessed. After 24 hour infusions for 3 weeks I was so excited to get rid of the pump that had followed me around all day, and was my snuggle buddy at night. I had an itchy spot on my arm that morning, but didn’t think much of it. This seems like a random detail, but I am sure some of you know why this comes into play later. I pulled the needle a few hours early (naughty, naughty) and spent the rest of the day out with friends.

The next morning I woke up to find my entire torso, arms and legs covered in hives. Naturally, I was concerned, but I had a non CF related procedure that morning and was reassured by many people that my hives may be related to nerves. I popped Benadryl and went about my day hoping the hives would fade as time went on.

The next morning I woke up only to realize my eyes wouldn’t fully open. The hives had spread to my face and my eyelids were swollen shut! At that point I knew what I had suspected all along, it was an allergy to the medication I had already finished. I called my doc, who agreed that my symptoms (fevers and hives) were likely an allergy to the penicillin antibiotic, Zosyn. It seems strange to have an allergy after completing an antibiotic because often allergies to antibiotics occur within hours of the first dose. However, allergies to antibiotics can happen at any time and do occur after the completion of the drug at times, like in my case.  
 
So after 5 weeks of antibitotics including 504 hours of continuous infusions my lungs feel no different (if not slightly worse bcause of the round the clock use of Benadryl to keep my hives under control) and I have spent the last several days covered head to toe in hives with fevers.

Tuesday, August 9, 2016

Hotel ER

As a person with CF I avoid the emergency room at all cost. I don’t want the germ exposure and maybe even more importantly I don’t really trust the emergency room staff with my CF. I have found most people with chronic and complex diseases are weary of general doctors because of the complexity of our conditions that are not always understood by those in the medical field that are not specialized in our disease. A perfect example of this is the time I went to urgent care because I thought I had a kidney stone. I did not have a kidney stone, but they wanted to find the source of the extreme pain I was in and decided to do an x-ray of my lungs just to be sure. The doctor came in after a very long wait (especially for a very slow urgent care) and admitted he had never seen an x-ray of lungs with Cystic Fibrosis so he wasn’t exactly sure what looked normal for my already severely damaged lungs. I appreciated his honesty, but it highlighted exactly why I do not bother with non CF specialists.

As much as I avoid the ER, unfortunately is isn’t always avoidable. The other day I woke up in the morning and my arm had the sensation of being asleep (pins and needles). I assumed I slept wrong so I shook my arm to try to wake it as I got out of bed. After getting breakfast ready I realized that my arm was still tingling from my elbow to my fingertips. The pins and needles feeling seemed to come and go as the day went on. Like all medical problems as the evening went on the tingling got more severe. Around 10pm a blue vein started to bulge from my upper arm and the veins below the bulge were all much more pronounced than my other arm. I have a port which puts me at higher risk of blood clots. This knowledge in combination to losing two friends with CF to blood clots I decided to call the on call doc just to get his opinion.

The doctor confirmed that these symptoms may be due to a blood clot and I should go to the emergency room right away. I had to call my husband who was at work. He had to quickly find someone to cover his shift while I called my sleeping dad to come and stay with our daughter. I didn’t get to the ER until almost midnight. I had a quick assessment by a nurse at intake who said he could see swelling in my arm, although I wasn’t sure I agreed.

I knew going in that the wait would be long. However because the doctor was adamant that I needed to get to the ER right away and the fact that he said he “would let them know I was coming” I assumed the wait wouldn’t be obscenely long. Oh, how I was wrong. The hours ticked by and we weren’t actually seen until 5am which made me wish I had just waited until morning. Clearly the ER staff wasn’t worried about the clot breaking loose and wreaking havoc in my body and I wish the on call doc hadn’t made such a fuss. When they finally called me back they threw me in a bed in the hall where an ER doc told me that the ultrasound tech would not be available until morning and so there was nothing they could do at the moment. I was so irritated that I spent the entire night awake in the ER when there was absolutely nothing they could do for me. However, at this point they told me to stay because I was only a few hours away from morning. I sent my husband home to relieve my dad, especially since my daughter would be waking soon. And eventually I was taken out of the hall and put behind a curtain where I tried to sleep.

A few hours later, 7:30 am, I woken for my ultrasound which turned out to show absolutely no clot. I was not given a theory as to why my arm was numb and bulging and was released. I was so exhausted at that point I wasn’t able to think clearly and was just so grateful to get home. So I basically sat in the ER for 12 hours only to find out there was absolutely nothing wrong with me! I am eternally grateful that I did not have a clot which meant I got out of the hospital faster, did not need blood thinners, and was absolutely fine. The results could have been much worse leading to more worry and treatment. I do not want to sound ungrateful because I really am. However, I was a little annoyed that I( spent 12 hours through the night in the emergency room when there was absolutely nothing wrong with me! I had numbing for a few more days and as quickly as it started, it stopped and I will probably never know exactly what happened.

Saturday, August 6, 2016

My CF Summer


This past month and a half has been a blur of chaos and I feel mentally fatigued from all the craziness CF brought into my life. It feels so strange to think just a few weeks ago I was waking every morning and swimming, spending my days in the garden and with my daughter, my house was clean, and I was using produce to make homemade spaghetti and pizza sauce. And today, my life revolves around sleeping, treatments, and IVs and feeling sick. It is amazing how quickly life changes week to week with CF. There are times that life feels exactly as I picture my life should look and despite the pills, treatments, and extra doctor appointments I sometimes forget that my life isn’t “normal.” And then there are times that life feels so uncertain and scary and even the most simple of tasks seem completely unattainable. These past few weeks my health has deteriorated. My low pfts from last month seemed high in comparison to my numbers after two weeks of Levaquin and a week of IV Zosyn, where they sat at a mere 28%. Two weeks ago I spent 12 hours in an emergency room which left me completely exhausted an overwhelmed. Then my contact dermatitis from all port dressings which has been a chronic struggle flared up in a matter of 24 hours to a point that I wasn’t sure I could continue IVs. And then the blows kept coming.  

I miss the days that CF exacerbations were “simple.” Where I would feel sicker than normal, call the doc, start IVs or orals, continue life as normal, complete IVs and feel 100% myself. It is amazing to think that all through my 20s tune ups hardly changed my normal routine. I would’t even take time off work or school when I had IVs and somehow I would bounce back to baseline without much extra effort. I know that I am incredibly lucky to have been so very healthy for so long. I know so many people with CF would think getting through your 20s with such ease seems almost too good to be true. I am grateful every day I had such a long easy run with CF. And yet, I can’t help but feel sadness and frustration at how utterly impossible CF tune ups have been the past few years. How my lungs just don’t respond the way they used to and despite more aggressive therapy, exercise, and medications my lungs just never seem to cooperate. I guess no matter how old you are nobody can ever be prepared for the intense progression of CF.

Friday, July 22, 2016

Shame

This past May I attended our annual Great Strides event. It was the best event we have had to date, but something happened while I was there that I haven't really spoken about to anyone outside of my husband. It was one of those experiences that seems to shake you to the core and as much as you try to brush it off, you just can't fully let it go.

After the walk there was a carnival area set up for kids to play games while they waited for the lunch to arrive for all the walkers. I wandered over with Kaylee to one of the carnival games, the kind with the big wheel that spins until it lands on a prize which is one of my daughter's favorite games, and waited in line. While waiting a young girl around my own daughter's age, maybe 3 or 4, wearing a purple "fighter" shirt, which told me she too had Cystic Fibrosis, wandered through our line to get to another activity. She was young, distracted by all the excitement and was walking with her neck craned to the side watching kids across the grass cheering at their victory.

Suddenly, I was startled by a woman sharp voice screaming someone's name. The voice was urgent, panicked, and much louder than seemed necessary given the small area we were in. My eyes darted around looking for who could possibly be in danger. Everyone seemed safe and everyone my eyes met seemed to be having fun. I could not figure out what was causing this woman to panic. I looked back at the woman to see where her eyes were staring only to realize the panic, the shouting, the big scene was directed towards the little girl only now becoming aware of her mothers shrieks. As I looked back at the mother I saw her pointing a finger shouting, "SEE!?? LOOK!?! DO YOU SEE THAT LADY?? DO YOU SEE HER SHIRT?? GET AWAY FROM HER NOW!!!"

My heart caught in my throat as I realized the accusing finger was pointing at..me! She was screaming and shrieking and in a complete panic because of me?? I was the danger that this women felt was worth creating such a big scene that people stopped what they were doing to see what had happened? She quickly grabbed her daughter and loudly scolded her, "Do you see that lady's shirt? You need to stay away from people wearing those shirts! It isn't safe to be near people like her!"

I wasn't safe to be around? My eyes immediately went to my own daughter. How would she feel hearing someone scream that a young girl her own age would not be safe near her mother? Relief filled my entire body to realize my daughter was busy looking at a woman who was making balloon animals and had somehow missed the scene. Once I knew my daughter was unscathed from this woman's fit over my proximity to her daughter, I suddenly felt shame fill my body. I had no real reason to feel shame, I had done nothing wrong except to be born with a genetic defect (which meant my lungs may harbor bacteria that her daughter could catch and get sick from), the same as this woman's daughter and yet her screaming and deeming me unsafe around her child made me feel as if I were a monster.  I wasn't coughing and in fact, having seen her sweet girl I had turned slightly away from her as a way to subtly protect both of us. Somehow the interaction brought back all the feeling of shame I carried as a newly diagnosed teenager for having this broken body and being so very different from everyone else. I knew in my mind I should not take this women's overreaction and her accusing words personally and yet I have never had a complete stranger publicly point me out of a crowd and shout that I was unsafe around a child! Those are not words that are easily forgotten.

I also felt heartbroken for the small child who is still completely na├»ve to the idea of bacteria and cross infection. She was taught to be afraid of people just like her and in such a irrational way that I wondered how that effected the way she felt about her own disease. Rather than feel inspiration or understanding in people just like her, she was told she have a deep sense of fear and doom in our presence.

Finally, I felt sadness for the mother, so consumed by fear that she had to not only make her daughter feel bad, but to shame a person who knew exactly what her daughter dealt with every single day. As a mother, I understood the need to keep your child safe, but it was clear her fear of cross infection was beyond rational. We were outside, neither of us was coughing, neither of us was even talking, I was turned slightly away, and we were several feet from one another. I hate that any mother feels that much fear for their child's wellbeing, rational or not.

It was all a reminder how isolating this disease is and that even at an event meant to support, encourage, and build up those that suffer from CF we are still so very alone because we don't have the freedom to sit down with a child and commiserate with how boring treatments are, or hug a person with an accessed port and say, "I get it," or pat the back of someone doing the walk with an oxygen tank and tell them that they inspire us. That in a group of people that desperately care about the CF community we can be made to feel like a monster for simply existing.


Tuesday, July 5, 2016

Accountability

Most mornings I start my day at 5:20am. I crawl out of bed, pull on a bathing suit, puff my bronchodilator, grab a glass of milk and drive to the gym. I come home, showered, dressed, and having my workout done to a sleeping household. I quickly start my treatments so I don't waste any precious time before my daughter wakes up. She comes wandering into the living room sometime around 7-7:30am. By this point, I am sipping my morning coffee and somewhat impatiently waiting for her to wake up. My favorite part of this routine is that when Kaylee wakes up I am all hers. I can make her a healthy breakfast and sit and chat about our plans for the day. She gets a mommy that is totally present.

While I was feverish and sick I took a week off from the gym. My body was exhausted and I was able to sleep an extra 2 hours everyday which I felt I desperately needed. However, this meant she wandered into my room to wake me up when she was ready to start her day. I was groggy and tired and had no desire to get out of bed while she was bouncing with morning energy that only small children seem to possess. I threw fruit at her and snapped on the TV so I could start my 45 minutes of treatments. I was interrupted because she was still hungry, needed water, was bored watching TV, etc. She would try to tell me something, but I would be coughing so violently I couldn't respond which left her repeating herself over and over. In turn, it made me frustrated that she kept repeating things while I was coughing so hard I couldn't breathe and she got frustrated that I wasn't responding. My 45 minute treatments turned into an hour because of all the times I had to stop. By 8:30 I still wasn't showered, neither of us had breakfast and we were both a little grouchy. One morning after I strapped on my vest to start my treatments Kaylee asked me teary eyed, "Mommy, when are you going to do shaky (vest) in the middle of the night again? I like when you do that better."

Those two sentences were all the motivation and reassurance that I needed to know that my workout routine was something I needed to keep up for a very long time. It is better for my health and my lungs. It is better for me because I can do my treatments uninterrupted and in peace (the way I like it), and just in case that wasn't enough motivation, it made may daughter's morning experience so much better. Trying to fit in treatments and an exercise routine while parenting young children can be a challenge at best, but this time having a small child request that I workout again with tears in her eyes (although for selfish reasons on her part) was the very best motivation I could have asked for.