A Day in the Life- Coronavirus

I have done a few "Day in the Life" posts over the years and I figured that this crazy time in life might be a good time to do another one.

7:30

I am the first one out of bed in the mornings. Sometimes Kaylee is awake in bed reading, but she likes lazy mornings so she usually lounges in until late. Thanks to Trikafta(!!!) I don't need to beeline to my nebulizer. Instead I go to the kitchen and brew some coffee. I then sit in the garden and catch up on the news. I have never been much of a news person, but there is so much going on in life right now I spend a few minutes each mornings scrolling though the news online.

8:00

Kaylee is usually out of bed at this time. We make breakfast and she does a bit of school (we are doing a  bit over the summer because the school years was so insane given that the schools shut down before everything was in place for online learning. If she isn't doing school she is usually lounging and reading. We also slowly get dressed, make beds and have a lazy morning getting ready for the day. 

9:00 I do my treatments an hour and a half after waking up. Can you believe it!?!? I feel 100% fine all morning and never feel like I NEED to do treatments, but I still do them without fail. 

10:00

I start tutoring online. I haven't updated in a while, but I actually did start my tutoring business and then had to transition to online tutoring as coronavirus started to spread. I do intervention for dyslexia and I absolutely love it! It used my teaching background, I get one on one time with students and I absolutely love my job! Depending on the day of the week I work between 1-4 hours on any given day.

2:00

On my longest days I am off work at this time and can rejoin my family for the rest of the day. We try to spend time in the hammocks or the garden and when the weather was nice we would do walks and bike rides. It has gotten a lot hotter and some days we end up staying in until evening. We have started doing yoga as a family. I have also been using resistance bands. My exercise routine got sidetracked by coronavirus and the heat.

5:00

My husband and I cook dinner every night and Kaylee helps sometimes. My husband and I both love cooking and we have had so much fun trying new recipes. It reminds me of life before kids when we would drink a cocktail and cook together in the evenings. 

7:00

The weather has usually cooled down by this time and we go to the garden to weed, pick produce, run around a bit (Kaylee) and deal with any garden pests. 

8:30

We spend the last 30 minutes of the day doing movie night. We watch part of a movie and eat popsicles before getting ready for bed.

9:00

Kaylee gets ready for bed and I do my evening treatments. I then lay in bed and read to her. When Coronavirus started I wanted to spend some time reading classic stories to her. We started with The Secret Garden and then moved on to the Little House on The Prairie series. We are currently on the third book. I don't think I ever read LHOTP as a child, but I adored the show. Reading the series I am kinda shocked at how horrible Native Americans are portrayed in the book. Yikes! There are lots of teaching moments in that series. 

After I read, Kaylee gets 10 minutes to read her own book before lights out. My husband and I either watch TV or sit and talk until 11:30 when I go to bed. 

Our lives aren't overly exciting at the moment, but it is such a crazy time in history I wanted to give a sample of daily life that I can look back on when all of this has faded into memories.

8 Years Old

Dear Kaylee,

You are 8 years old today. 8 short years and yet it feels like a lifetime. How could it be that just a little over 8 years ago I talked to you in my belly and you were still a complete mystery to me? Just 8 short years ago I had no idea who you were, the shade of blue yours eyes would be, the sound your laugh would have, the feel of your silken hair. It feels at times I have known you all my life. What was life like before you arrived? I hardly remember it at all.

Watching you grow into this "big" kid has been such an amazing experience. So what are you like now that you are 8 years old?

You love your cats with a fiery passion. Your whole life revolves around cats. You have memorized every cat breed, you have cat facts for days and you can't walk by an outdoor cat without trying to coax it over and wanting to adopt it. 

You love to read as much as you love your cats. You would gladly read every waking hour of the day. You love Calvin and Hobbes and the Warriors series. You recently sat down with Harry Potter and read more than half the book in one sitting. I often have to force you to put your book down to do something...anything else. You would gladly spend 24/7 reading.

You are learning to cook. You know basic breakfast foods like scrambled eggs, over easy eggs and pancakes. You aren't a fan of baking, but you can follow a recipe without my help. For some reason, you don't enjoy it much and would rather I do the baking and you do the eating. You recently told me that you wanted to learn to cook steak next so that is on our summer to do list.

Space has become a current interest and you have found yourself immersed in space books, gazing through your new telescope and looking at the NASA website. I find this topic pretty interesting too (more so than cats) and so it is fun for me to learn alongside you.

We threw you a surprise car drive by birthday party and gave you a long awaited telescope for your birthday. At night when we put you to bed you said, "Mom, I have no words for how thankful I am for my birthday celebration." And the 24 hours after your birthday you kept thanking me over and over for your party and making your birthday special. And then a few nights later you told your dad, "I am such a lucky kid. I know there are lots of kids that would love a telescope and I am so lucky to have one. Thank you."

Sometimes when you were in your "terrible 2" phase and you would find joy in pinching your sweet one year old cousin, or would shout "No!" at me I worried that maybe you would grow up to be unkind. Of course, I knew it was age appropriate behavior, but a part of me still worried.

The worries of you growing up to be unkind or selfish no longer linger. You are compassionate, grateful, and without a doubt so very kind. I love seeing you turn into a person that anyone would be thankful to call their friend.

I am excited to see you continue to grow and develop into a bigger kid, teen, and adult.

Love,
Mom

2 Months of Isolation

We have been social distancing for a full 2 months now. It is amazing to think how much our lives and the world has changed in 2 months time. 

Back in March I went out for a ladies night a few nights before everyone started thinking about avoiding crowds. It was so nice to be out with friend's from Kaylee's school. But I couldn't brush off this nagging feeling that maybe I shouldn't be out in public. The virus seemed to be looming. I had no idea that 2 days later Kaylee's school would have a confirmed case of coronavirus and our whole world was about to shrink very quickly. Kaylee's last day of school was March 13th. My husband's last day of work was around the same time as well so our little family of three (plus 2 cats) have been spending a lot of quality of time together.

At first, everyday felt a bit shocking. I would rush in the morning to check the news. This new normal felt so very foreign and almost unreal. But years of being sick and hospitals stays gave me the wisdom to know that people adapt. We can and will adapt. I have learned to adapt to lower lung function, to being able to do so much less physically, to functioning while ill and feverish, to the flow of hospital life, to existing while dying. I knew soon enough our family would adapt to self isolation. And we have. 

There are moments when the reality of everything hits me and I think, "Holy crap! There is a killer virus traveling around the world killing thousands of people and we have to wear masks, and avoid our friends and stay home as much as possible." But most days we wake up and put one foot in front of another. We do online learning, we mask up before going out, we do grocery pick up. We spend a lot of time in the kitchen cooking, baking and creating. We spend time being thankful we are together and healthy. 

It's not to say that everything is perfect. Online school is definitely not Kaylee's prefered way of schooling. And all that baking/cooking leaves a lot of dishes to be done. We miss our friends and family. We miss hugging those we care about and adventure. I oddly miss the grocery store. 

But humans are strong and we adapt. This surreal existence is starting to feel normal and we are finding our groove in this somewhat lonely, somewhat humdrum life. But we are alive and healthy(ish) and we have one another.

And I know from experience that I can adapt, but I am not naive to the fact that for some may struggle with this new normal and adapting might not come easily. We all have different life stories and we all have different struggles. Just know it is okay to not be okay. And it is always okay to ask for help.

New Normal Post Trikafta

I have been wanting to write about my post Trikafta life, but I am finding the words so hard to find. It is so hard to describe how much my life has changed in so many subtle and hugely obvious ways over the past 5 months. I am going to highlight the biggest changes I have felt.

• PRE: Treatments used to be such an exhausting all consuming part of my day. I needed to be ALONE because I would cough so hard and so violently that it took all of my focus and energy. I would get red in the face, break a sweat, gasp for air, and cough up so much mucus I needed a cup to catch it all. If it was so too soon after eating it would cause me to throw up from coughing too hard!  
• Post: I can easily play a board game, work on the computer, or hang out with my family while I do treatments because I never ever cough! I don't use up all my energy reserves to do treatments. Instead it feels like maintenance like brushing my teeth or combing my hair. Not particularly fun, but not exhausting, stressful, and painfully time consuming. 

• PRE: CF dictated everything about my life. I could not get out of bed before taking my inhaler. When I did get up I would cough and cough until I finished my treatments. In the evening if I tried to push off my treatments by a few hours (usually when we were having a fun evening) my body would revolt and I would cough and cough until I relented and did my treatments.
• POST: I can wake up, eat breakfast, stroll through my garden, and then settle into my treatments late morning if I want. I do not feel like my life revolves around treatments anymore and my body can function without using my inhaler. I went from needing my inhaler within arms reach at all times to feeling secure in knowing I can survive without it. 

• PRE: If I woke in the night and had to get out of bed (to check on Kaylee, to pee, etc) my lungs would "wake up". My heart would start racing a million miles per hour, I felt breathless and my coughing would begin. It was horrendous. I would often feel afraid that my body would quit after those middle of the night wake ups. 
• POST: I can wake up, go to the bathroom, come back to bed and fall asleep like everyone else. No racing heart, no panting for air, no coughing!!

• PRE: Every day was different. Some days I would wake up and my lungs would be okay, sometimes my lungs would be tight and congested. Almost every single day at some point I would feel BAD. Almost every day I felt like I was on the verge of an exacerbation. I felt bad significantly more often than I felt okay.
• POST: I don't notice my lungs anymore, they feel good every single day! I have days I am more tired than others or some days I feel off, but it is never because of my lungs. 

• PRE: Getting sick meant a few months of trying to get "well" again. Even a simple cold or allergy season made every single day a struggle. Even a small cold used to make my lungs react with inflammation so badly that I struggled to breath sitting still and felt like I may suffocate when walking even a few steps.
• POST: I got 2 bad illnesses since Trikafta. A bad fever followed by a respiratory infection in December and then Influenza A in February. With both sicknesses I felt awful, feverish, miserable. In December I felt so bad I was crying to my husband because I just knew when it hit my lungs I would be in really bad shape. In fact, I genuinely thought I may die. I waited every day for it to hit my lungs and for the inflammation to take over. The inflammation never came. I ended up on oral antibiotics because I was coughing up mucus, but the death grip my inflammation usually puts on my lungs was nowhere to be found. A few months later I had a similar experience with the flu. I truly believe that Trikafta saved my life.

• Pre: I never expected to live a full life. I mourned so many times the loss of growing old. I used to think about how hard CF was on my 20-30 year old body and wonder how a 60-70 year old body could survive the abuse (if I even made it that long) and it felt completely impossible. 
• POST: I fully plan to see retirement, my grandchildren (if Kaylee decided to be a mom), and to grow old just like everyone else. 

This is already long, but I feel like it is just the tip of the iceberg in how much my life has changed. I feel grateful every. single. day!! I was given my entire life back and there are no words in the english language to even describe the joy Trikafta has given me!

Everything Feels Backwards

I haven't written in a while. For so long CF was taking over every aspect of my life. I didn't want to dedicate more time to CF and talk about it in my blog. A year ago I just finished transplant testing and CF seemed to be at the front of everything. I wanted to push CF to the back of my mind and ignore it's existence. Of course, my failing health wouldn't let me and so I took a break from blogging to get a mental break from thinking too deeply about what was happening in my life.

In November, Trikafta entered my life. Suddenly, I had energy, I had health, I had hope. I was busy living life. So many fears and worries of the future melted away and I didn't want to stop living my life to write about CF in my blog.

Then March arrived and Coronavirus arrived in the US. Schools closed, my husband's work closed, and we were told to hide in isolation from everyone we knew. It is amazing how quickly life can change.

It is strange how my "corona" life has mirrored so much of my late stage CF life. So much fear of germs, wearing masks in public, missing out on fun things in the name of health and safety. It almost feels like life as usual except I am not the only one canceling fun activities, wearing a mask, slathering hand sanitizer whenever I touch anything outside my home. The strangest part is while the world is suffering and struggling I personally feel well. While thousands of people worldwide are gasping for air, suffocating, feeling the exhaustion that comes from the lack of oxygen, I am breathing fine. I no longer wake up coughing, I no longer experience shortness of breath, I can breathe. And I guess I should feel relief...and I do.

But man, my heart breaks for every person suffering right now. I know too intimately what they feel, despite never experiencing coronavirus. I know the fear, the panic, the pain that comes from lungs that are failing you. And I have had 35 years to cope with it, and 35 years of getting through so that I can tell myself (even lie to myself) that I will be fine even when I struggle to breath. But all of these people are experiencing it for the first time and the fear they feel must be extraordinary. My heart breaks for them. My heart breaks for their family.

It feels so weird to feel healthy in a suffering world when for the past few years I felt suffering in what felt like a healthy world.

The Initial Trikafta Changes

I haven't been blogging in a while and after my transplant evaluation I felt like I needed a break. CF felt like it was taking over my whole life and I just wanted to step away from writing about it in my blog for a little. It has been almost 9 months since my evaluation and my lung function and my quality of life was remaining the same. I was getting sick more often and IVs were still not overly effective, but I didn't have a significant drop or anything that affected my transplant status. I was driving to Stanford every 2-3 months to be monitored, but I was still too healthy to list.

But this update is about Trikafta and not transplant so moving on... When I heard rumors about Vertex providing Trikafta for compassionate use I tried so hard to get on it! Unfortunately, for my mutation getting compassionate use was tricky. I fell into the guidelines and applied, but then the FDA changed the criteria and made everyone reapply. My CF nurse reapplied and said I still fell within their guidelines and we really thought I would be granted compassionate use. The wait felt like it was forever and I kept worrying I would get sick beyond repair while I waited. And then I got the news the FDA approved Trikafta. I was thrilled, of course, but part of me was disappointed that it happened before my compassionate use was granted. Now all compassionate use applications were useless and I was now depending on my insurance. I called and emailed my insurance and pharmacy every day. I was going to make sure I didn't get lost in a stack or pushed to the end of the pile.

I was approved by my insurance and started Trikafta the day after Thanksgiving. What a great reason to be thankful!! So how has it been going?

One of my best friends was visiting from out of town when I took my first dose. I literally popped the first dose and left to spend the day out and about with her. I was distracted and not paying attention to how my body felt except I knew I was coughing a LOT and my coughing felt different. More wet and being productive was so much easier.

I have always been very productive and it caused a lot of issues because I produced so much, it was virtually impossible to feel clear even after treatments. Treatments always felt like a huge workout. I had so much mucus and it was so hard to clear I would often be sweating and red in the face and exhausted after treatments! Within a few days I noticed my production went way down and by day four I was not coughing ANYTHING up at treatments. My cough just disappeared!!

This lack of mucus and coughing both thrilled and terrified me. I have a huge inflammatory response and normally when I get less productive it means my inflammation is out of control and I start getting a lot of plugging which is a nasty cycle that feels impossible to break from. I had a hard time mentally accepting that my lungs were responding to the meds and I didn't need to cough so much. What!? MY heavy producing, never clear, highly sensitive lungs didn't need to cough? It felt unreal and a bit terrifying.

Another massive change I noticed on Trikafta was my inflammation improved so much I can hardly believe it! I usually carry my combivent inhaler everywhere I go. It sits next to my bed at night and it comes in my purse everywhere. If I go for a walk it is in my pocket! I use it several times a day when well and I use it a million times a day when unwell. I now take it before treatments (and not the second I open my eyes) and that is it! I have noticed with my home pft monitor that I still have inflammation because my pfts jump pretty significantly after my combivent, but my lungs are doing so much better I don't feel a difference. Prior to trikafta I would often feel like I was suffocating if I went to long without a bronchodilator.

Within a few days of starting Trikafta I went to cut down a Christmas tree with my family. We drive to a much higher elevation and in the past I really struggled with the elevation and hills. In fact, I wondered if I should go at all this year because I was worried I wouldn't be able to handle it. I did go, but immediately saw the hills and felt dread! We were standing at the top of a steep hill and all the kids decided to run down to look for a tree. I stood at the top and was assessing if I could make it back up the hill if I followed the kids down. I decided I probably couldn't and decided to stay put. But somehow I got distracted and ended up at the bottom of the hill. And before I knew it I was in my car on the way home before it dawned on me, I just spent the entire morning walking up and down hills without realizing it!! No huffing and puffing, no headache from lack of oxygen, not struggle. In fact, I didn't even notice. How AMAZING is that?

The last major improvement I noticed within the first few weeks was that my energy level was INSANE! Within a few weeks of starting I was helping put on a school event. I warned the others on the PTA that I would help if I could, but depending on how I was feeling I may not be able to help at all. When the day arrived, I started working at the school around 11:30am to set up, worked the entire event, and was one of the last to leave when the principal locked up the school on our way out at 9:30pm. When I got home and realized I still had energy I was astounded. Usually, my energy level is so low and if I push myself I pay for it the next several days. But I was acting like a real 35 year old!

This is getting long so this is the last thing I will say. My whole adult life my CF has been a huge rollercoaster ride. So many times I felt like my health turned around and I was so optimistic for the future, but then as soon as it improved it would all crash down. My health history taught me that the highs were temporary and the lows were always right around the corner. Years ago I would celebrate my improvements, but as my health got more complicated I learned to enjoy the highs in my CF, but to brace for the low. It was always right around the corner. And in the past few years my highs lasted a week or two before I would feel the downward slide back to poor health. My brain was so trained that for weeks I couldn't feel overly excited about Trikafta. I felt like I would enjoy better health, but like always, it would be ripped away from me before long. I have been on modifiers before and the results seemed temporary and faded just like everything else health wise. So I talk about these improvements and I noticed them and felt hopeful, but it was clouded with doubt and caution. But I felt hope, cautious hope, but real hope for the first time in years.

Trikafta

The FDA approved Vertex's triple!!!

I realize I have been mia recently, but I am still alive and well!