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!

Transplant Evaluation Day 4

I have been putting this entry off for a while. Partly because I have been busier with the nicer weather, but also because I just wanted to move on. When I first got back from my evaluation I was wanting to process what I had gone through (we actually went on a little getaway right after which was why my blog posts were delayed). I wrote the 2 entries right away, but then I felt my feelings switch and I just wanted to tuck it away in a quiet spot in my mind and move on. But I know how much I wanted to hear about the evaluation process when I was waiting and so here I am writing about my final day even though so much of me wants to shut the computer off and forget that piece of my life. I clearly, have bad coping skills!

Thursday was the day I had scheduled for my heart Cath. We had to leave our air BnB by 11 and my appointment was for 12:30. We packed up all our food (bringing food and staying in an air bnb was such a money saver btw) our clothing and then went to find gas knowing it would be a long day and we had a long drive when it was over. We got to Stanford early and checked in around noon. The heart cath area was so busy. They had screens with case numbers (which we were given when we signed in) and everything was color coded so while family waited in the waiting room they could watch the progress of the procedure via the colors on the screen. If your loved one's case number was glowing green you were getting prepped, if you were orange you were in the procedure, etc. It reminded me of an airport! It also made me feel a little less nervous seeing how many people were undergoing some variation of the heart cath. They clearly do a ton of them at Stanford!!

I needed to be fasting and I was surprisingly hungry. The various fasting requirements and the schedule made me feel like I was in a calorie deficit and I was starting to feel it by the 4th day. The average age in the waiting room was probably 70+ so I felt my husband and I looked very much out of place. There was an elderly couple that were sitting across from me and I couldn't help, but hope that my husband and I can still be alive and well when we get to their age. Unfortunately, the heart cath was very behind. I was finally called back after waiting for what felt like forever. I had to go alone and they told my husband that after I was prepped they would come get him. They then asked a million questions before the procedure. She asked a few questions about my husband and I and then commented that we must have married very young. I got married at 26 which is relatively young in todays standards (and even more so for our area). The nurse acted surprised and then asked how old I was. She was shocked I was 35. CF patients are notorious for looking young and I did during my whole malnourished underdeveloped stage. But being fair skinned in a sunny climate hasn't been kind to me and I think I look my age so I instantly loved this nurse. Of course, like I said the average age in the heart cath was 70+ so I doubt my nurse had a good gauge on how old 35 year olds are supposed to look. She also told me about a friend of hers whose daughter had CF and had a lung transplant.

During my intake a nurse came to access my port. This was the first time at Stanford that I felt like the nurse was unsure of how to access a port. My intake nurse was trying to tell me a story about how they are using something from a squid to do CF research. I am sure (like many nurses over the week) she was trying to distract me from the port access. However, I can NOT be distracted during a port access because I am super controlling about it. I felt rude, but basically ignored the intake nurse and was focusing and giving advice to the nurse working on my port. She explained she used to access them all the time, but it October was her last access after changing departments and she was having trouble feeling the 3 dots on my power port. The second she poked me I told her she missed (I was right), but she got it the second time and it was fine. After they brought my husband back and Ii figured the procedure would begin soon after, but we had no idea just how long our wait would end up.

The nurses seemed to switch around and it seemed like person after person was being called back and we were left to wait. We tried to ask what was going on, but it seemed everyone we asked said they weren't on my case anymore. I am still not sure which nurse was mine towards the end (I had so many switch to different patients). The woman across the way (we were all lined up in a big room separated by curtains) was someone that was in my lung transplant class. We exchanged thumbs up as she was wheeled to her procedure . I tried to nap and watch videos on my phone but the hunger and thirst (the worst!) and the nerves were getting to me a bit. I guess while I was napping the elderly man from the waiting room (his wife was having the procedure) popped in to check in on our progress. It was so very kind for him to show concern for us when he clearly  had big concerns of his own. Later, when he was leaving he walked by our waiting area and waved and wished us the best of luck. Writing this is bring tears to my eyes. It was such an emotional week and this particular day was hard because we waited so very long and I was so nervous. To have a stranger reach out and show some support when he had his own concerns and struggles reminded me how kind hearted people can be and it meant so much to the both of us.

A little before 5 (!!!) the surgeon finally came too talk to me! This was 5 hours after getting to Stanford and after fasting for way too long. The first thing the surgeon said was, "where is your IV?" When I told him my  port was accessed he said the port was great for anything they will give me during the procedure, but he needed an IV as a guide for the catheter. I seriously wanted to scream. I was so dehydrated I felt like I was a raisin after fasting (both liquids and food) for so many hours and they wanted to start an IV. That should have been done at 12:30 when I had only been fasting 6 hours or so. Of course, the first IV failed and the nurse called someone else. They started getting stressed because the nurse failed in the spot that needed an IV. They ended up putting it in more to the right and thank goodness the second one worked (although this ended up backfiring later).

Finally, a nurse came out and started to get me ready for the procedure. I told her the intake nurse told me I would get a valium, but since I was delayed I never got it. This nurse acted like a valium was overkill, but agreed to give me one since I requested. I have never had a valium before so I am not sure what it is supposed to feel like, but I think they gave me a sugar pill or such a low dose it was useless because it had zero effect on me. As I was being wheeled out of the heart cath a family was sitting in the last curtain waiting for their own procedure. As I was being wheeled by they all gave me a thumbs up and wished me luck. There are so many kind people in this world!!

When I got the procedure room they prepped my arm, hooked me up to heart monitors and put oxygen on my nose (although they said it was a precaution and there was no oxygen in it at the time). They used lidocaine to numb my arm. The whole thing reminded me a bit of getting a PICC line in radiology with a bit more set up and many more nurses and respiratory therapists around.

When I am having medical procedures done I have this control issue that I have to know what is going on. I think having people doing things TO YOU can make you feel out of control and the only way I don't stress is if I know step by step what is happening. So I kept asking a bunch of annoying questions. Did the catheter go in? Is it stringing okay? I bet they wish I was put to sleep. And my stress level/anxiety clearly wasn't soothed with the valium they gave me. And then I knew that something wasn't going well because with PICC lines the line is put in until it hits right above your heart. With a heart cath it goes into your heart. In distance, this isn't a big difference, but I could tell it was taking too long. So I started questioning again. The nurse was kind and turned the screen so I could watch the wire. He actually didn't need to show me because I knew what was happening. It was the same thing happened so many times in the past with PICC lines. The wire was curling back on itself because something was blocking its path. They said it may have been my port among other things. I knew it wasn't my port because this was an awful dejavu that I had been through a dozen times before. It was some weird anatomy of my veins. The next thing I knew some woman came out of a back room and said that my arm wasn't working so they were going to try through my neck. I groaned. They decided to try one more time on my arm. I protested a bit because of my history with PICC lines. Considering my last PICC line took 9 attempts I was more concerned about getting it right than going through my arm.

It is interesting because I haven't had a PICC line in over 6 years. It was amazing how quickly I was thrown back into all the feelings and stress that came with all the failed attempts. The heart cath procedure wasn't bad, but it brought back a lot of old feelings that I had forgotten and somehow felt so much heavier and uglier when they resurfaced.

So they tried the second time. I asked them to tell me when the catheter was placed, but heard the distinctive POP that comes when a vein is accessed so I told them before they even had a chance to tell me that it worked. I have a feeling they hated me and my nonstop commentary. When I asked if the wire was able to thread they assured me it had. I felt so much relief until the nurses started rushing around my bed and the mood of the room changed. I looked around for someone to tell me what was going on, but everyone was clearly very occupied. I finally said, "Is everything alright? Am I alright?" Apparently, my heart monitors stopped showing clear readings. They assured me that it was nothing to do with ME, but the monitors were acting funny. At this point I was really wishing the valium had helped, but instead I watched the clock on the wall trying to pretend it was 10 minutes later when the whole thing would be finished.

Soon enough the doctor assured me that my results were good and that my CF had not negatively effected my heart and I was off to recovery. Unfortunately, because I had two catheters in I had to go to a step down recovery where my husband could not join me. They needed a nurse to remove my catheters and hold pressure on them for 15 minutes and so I needed too be in a step down where a nurse could give me the needed attention. The nurse that did remove my catheters was actually my favorite nurse of my stay in Stanford.

Finally, I was moved to a regular recovery area and I was finally able to see my husband. And thank goodness for him because one of the first things he said was, "when can she eat?" The nurse got me a snack kit with brie, crackers and grapes. It was one of the best tasting things I have ever eaten. I was so happy to have food and water again! At this point it was just about 7:00 and I was so ready to say goodbye to Stanford and get back home to my kiddo. Unfortunately, (I am using that word a lot), the worst was yet to come...

Transplant Evaluation Day 3

To start with Day 1 go here.

I woke up Wednesday and turned to my husband and said, "I am over it. It was fun, but now I want to go home." I had a lot of adrenalin the first day and some of that carried into Tuesday, but by Wednesday it had warn off and I was ready to go home. But we were half way done and had no choice, but to continue on! So I put on my big girl panties and went to my first test.

Echocardiogram with Bubble Study: I checked into the echo lab around 8:45. I went back into the medical room where they had me change into a gown with the opening in the front (opposite of the norm). The nurse came to start an IV. I asked if she knew how to access ports and she said she was more than happy to use my port instead of a peripheral line. I was so happy! My port was coming in so handy! She left to get port supplies while the tech (Dr? Sorry, I had so many tests I wasn't sure who was a Dr and who was a tech) started the sonogram. It was very reminiscent of when I was pregnant, but instead of looking at a beautiful baby growing inside of me they were looking at my beautiful heart. Again, I was watching the screen, but it was a lot less fun than looking at baby feet and baby hands. All the pictures looked the same so I was only half paying attention. The tech was so warm and kind though which seemed to be a trend at Stanford!

When the nurse came back she accessed my port and we started the bubble portion of the test. They push saline with bubbles in through your IV and watch how they pass through the heart. Apparently, they are looking to see if any bubbles find their way to the left side of your heart. If they do, it means you have a small hole in your heart which apparently is somewhat common. When the nurse pushed the bubble saline into my port it traveled through so quickly they actually missed it! The combination of using a port which is much closer to the heart than a peripheral in the arm and my very fast heart beat made the bubbles travel faster than they anticipated. They repeated the test and then did it one more time while I clenched my stomach (like I was going to the bathroom) which apparently puts more pressure on the right side of your heart. I am 99% sure I failed this test, meaning I have a small hole in my heart. Nobody ever told me what this actually means as far as transplant or life in general. Hopefully, it isn't a huge deal since nobody mentioned it, but I will be asking my CF doctor about it next clinic.

During the test the nurse in the room started asking about my schedule for the day. When I mentioned I had blood work she told me that I should get the labs taken from my port. I wasn't sure the regular outpatient lab would do that so she started making calls to see if someone could take blood from my port. Finally, she told me she would walk me down to the lab, wait with me and then ask the phlebotomist if she could do the draw instead. You guys, that was so insanely nice and was the overall feel at Stanford! Everyone went so above and beyond what was expected of them and they just all genuinely wanted to make my life as easy as possible. So we went to the lab together and she drew 8(?) more vials of blood and then took out my port needle.

Lung Transplant Clinic:

After my labs were done we went over to transplant clinic. I was surprised to find other people with CF (pre-transplant) in the waiting area. In recent years my current clinic usually brings us back pretty quickly (where we still wait forever) to avoid having too many CF patients in the waiting room at the same time. Just like my current clinic we waited forever to be seen. Also, like my current clinic we saw a team of people. I had to give an overview of my medical history and any family history of diseases. I was glad my dad was there because outside of my immediate family I wasn't sure on family history as far as health issues. The social worker stopped in and said I was a good candidate from his end. I was able to skip the nutritionist because my weight is fine which saved us a bit of time.

I was told pretty quickly that I was not ready for transplant. My 6 minute walk was good, my lung function numbers are not good, but not at transplant level yet and I am not on oxygen. We went in anticipating this result, but I felt so much relief knowing that I could put transplant off a little bit longer. It does scare me a little bit though because I was told without hesitation that it is not time. I think about how low my energy is and how often I feel sick and I can't help, but feel a sense of dread for what things must be like when it is time. It is one of those times that it is better to just not think about the future and try to stay in the moment because no good will come from thinking about your inevitable decline.

Clinic was the last appointment of the day. I was hoping to feel relieved that I was almost done with my week at Stanford, but I was absolutely dreading my right heart catherization and finishing day 3 meant that I was one day closer to the heart cath.

Transplant Evaluation Day 2

**Start here for Day 1**

Tuesday was much shorter (which means a much shorter blog post too...whew!

I had to start the day fasting again. I know it sound silly to complain, but I know I was at a calorie deficit from the day before so I woke up really really hungry!

10:00 Esophagram: I checked in for my esophogram at 10:00. They had me change into a gown and explained the test. Then I waited for a really long time. I guess they were finishing up with another patient and it was taking longer than expected. Finally, the doctor came in to get started. I was given a cup of barium with a straw. I was told that I would be asked to take a large mouthful of barium and not to swallow it until instructed. I would then be moved into various positions and asked to swallow the barium. They were going to watch how the barium travelled down my esophagus and into my stomach. I had heard Barium was chalky and gross, but honestly it wasn't bad. It tasted like a  flavorless Ensure. It is much easier to drink than the syrup they make you drink for diabetes testing!

So I took gulps of barium while standing up, then while laying on my stomach, and on my back. Then they had my lift my legs in the air, put them down and lift again. I believe they were doing this to look for reflux. I was trying to watch the monitor while the test was going on although it was at a weird angle so I only got quick glimpses. It was pretty fascinating watching the way food travels through the body.

I thought I would be excited to break my fast, but I had so much barium that I actually felt full. I ate a little something anyway because I knew my next appointment would be long.

Class For Transplant: This was a 2 hour class. I was in class with 2 other transplant hopefuls and all of their support people. It was a full house. I was nervous being in a class with other people with lung disease, but it was obvious none of them had CF and I am sure they didn't pose a threat to me, but I wore my mask anyway.

None of the information was new to me and I had heard it all before through research or being part of the CF community. But I surprisingly started to get a bit teary when they talked about donors. It is hard to think that your only chance at life is if someone else's ends tragically. It also made me think about if I ever lost my loved ones in a sudden tragedy. There is no getting around the weight that all transplants represent earth shattering loss mixed with life saving hope.

We were done by 3, but for some reason I left feeling a bit shell shocked and exhausted. Like I said the class didn't cover anything new, but maybe talking about transplant in regards to yourself feels very very heavy! I was glad that this day was shorter and we were able to go back to our Air BnB to relax and get ready for the next day.

Transplant Evaluation Day 1

My evaluation started on a Monday, which is standard for Stanford. It was the day I was the most stressed about because the schedule looked so full! It ended up being a very long day. We got there at 6:30am and didn't get to leave until about 7pm! I had appointment scheduled for 7:30, 9:45, 12:30, 3:30, 6:00 and 6:20. I was also given 3 tests, blood draw, EKG and Chest X-ray, to do "at my convenience." This is a detailed breakdown of my day. I wanted to include a lot of details so maybe someone in the future that has an evaluation at Stanford can get an idea as to what they are in for:

6:30 Labs: My paperwork said I needed to get my blood drawn first and foremost when we arrived at 7am and that it needed to be completed before my first appointment at 7:30. I needed to be fasting for the blood draw. We were told the lab opened at 7am, but since we had never visited the hospital before we wanted to leave early and get there with plenty of time to find the lab. We took a Lyft and arrived at 6:30. We were so excited to find that the lab was actually open. I was told by the phlebotomist that one of the blood tests ordered for TB couldn't be done until 8am (due to it needing to be incubated and that wasn't available until 8??) and that I would have to come back to get that test done. They said I could either do all the other tests first and come back just for the TB which meant I could break my fast, but I would get poked twice. Or I could just wait and do it all at once with only one stick, but I would have to fast until I came back. Food trumps needles in my life so I decided to do all the tests minus the TB with the plan to return after 8. I gave about 15-20 vials of blood and was a bit worried I may feel a bit dizzy from fasting and giving a lot of blood, but I felt fine. I also gave a urine sample. I had extra time so I decided to get a few other unscheduled tests done.

7:00 X-Ray: I tried to get my EKG done, but it wasn't open yet. So I went to get my x-rays done. It was a basic chest X-ray. One facing the screen and one standing sideways. It was the same as every other X-ray I have ever had for CF. It was super quick and easy.

7:30 Bone Density Scan: My husband and I packed a backpack cooler full of food, water and snacks the night before. I also packed my Symdeko and morning pills because the morning was so busy and we just weren't sure if we would make it to the cafeteria in time. I don't love fasting or going hungry so we wanted to make sure we had food with us. I got to break my fast after checking in for my dexa scan. Whew! Soon after they called me back for my scan. This was my first scan and I wasn't sure what to expect. It was quick and painless. They took a scan of my lower back and each hip. I had to sit still for 2 minutes for each body part they scanned. It was similar to getting an x-ray. Simple!

8:00 Blood Draw #2: We ran back to the lab to get my TB blood draw. The amazing tech left my file open so when I got to the lab I did not have to wait in the line again and was brought back immediately. One vial and I was done. Super fast!

8:15ish EKG: We were ahead of schedule and I was so happy to be cruising though my "extra" tests because I did not want them hanging over my head. Since we had time we went over to the EKG lab. We tried to check in, but they said that walk ins (which is what we were) couldn't be taken until 9:00. Since my next scheduled appointment wasn't until 10 we decided to wait it out. At 9:00 they called me back and I got an EKG. It was super simple and fast. They put some monitors on my ankles and chest and took a reading for a few minutes. The tech gave me a print out of my results to bring home. I had no idea how to read it, but it looked cool so I took it. Simple and painless.

9:45 SNIFF test: We checked in at 9:45 for a 10:00 appointment. This test was easy! The brought me back to a room with a huge bed that was standing upright (as in the foot of the bed was on the ground). I stood against the bed while they brought a machine (essentially an x-ray) in front of my chest. The tech was taking scans while asking me to breath normal. Then he took a scan(s?) while I took a deep breath. Finally, he told me to sniff 3 times while he did one last scan. Apparently, this test checks to make sure your diaphragm is working in unison and properly. I passed. I have no idea what it means if you fail or what problems it can cause in terms of transplant, but since I passed I didn't bother to ask.

12:30 Social Worker: You guys, this was a hot mess. Going into it I assumed they would ask the basic social worker questions. But the social worker came in with a packet of questions and I knew he was judging if I would make a good transplant candidate. The problem was the more (random) questions he asked the more I started to wonder if I would pass. For example, one of the first questions he asked was if I had gone to public or private school. Internally, I kept thinking, "wait, what does this have to do with transplant...does your elementary education really impact transplant??" Obviously, I was over thinking these questions, but I was starting to wonder what the relevance was. After taking a step back I think they were just getting a profile on me, but at the time the questions made me nervous as if every step of my life was being  judged. The other part of the social worker meeting that made me panic a bit was when he asked about finances. We are a single family income. After we told him our income he did mention that the cost of living near Stanford (which is required 3 months post transplant) is much higher than where we live (and basically completely unaffordable for us). For reference, the average home value in Stanford is $3 million which shockingly is not affordable for us. And even though we wouldn't be buying a home in Stanford post transplant, clearly rent would probably be significantly higher than out mortgage. Considering we hope to keep paying our mortgage while we rent in Stanford I was wondering how we would possible pull all the finances off. So I was internally freaking out now thinking they are going to reject us for sure! After it was done he explained that they do not disqualify people based on income. I wish I knew that upfront! This is getting long, but the last part that I will mention is that I hate mental math. So when he asked me to count down from 100 by 7s I got nervous all over again and lets just say I will never trick anyone into thinking I am a math genius. It wasn't pretty!  

3:30 Pulmonary Function: Next I had an appointment with a respiratory therapist (who was insanely nice and encouraging). We started with an atrial blood gas test which is when they take blood from an artery in your wrist vs a vein in your arm. After hearing it was painful from various people (including nurses) I was really nervous! Luckily, they gave me some lidocaine which made the test way less scary. She missed the first time and had to do the test twice to get a sample. I only felt a bit of pain on one attempt, but the other was painless. After, we had PFTs. I had to do the first one without any inhalers (I had to stop inhalers 4 hours before meeting the pulmonologist). I was having a good lung day and lucked out because my asthma can get out of control. Not taking my inhaler before PFTs was actually one of my biggest worries about the day. We did several lung functions tests which can be exhausting, but having CF, these tests were nothing out of the ordinary.  

6 Minute Walk: Next was the 6 minute walk. We were able to go to a hallway where there were not any other patients which meant I could take off my mask. Whew! The took my vitals then had me walk the hall for 6 minutes as quickly as I could. I then had my vitals taken again before being dismissed. Pretty easy and painless test!

Fasting Again: I could not eat 2 hours prior to my CT scan so at 4 I started my second fast of the day.

CT Scan: The last test(s) of the day was a CT scan of my chest, abdomen, and sinuses. They were able to use my Port so I didn't need an IV which was a huge relief. This was my first time with contrast. The tech explained I may feel a bit of a headrush and then I may have a sensation like I am peeing my pants. He told me a story while he was pushing the contrast into my port which in hindsight I am sure was a ploy to distract me from any sensations I was feeling (and maybe to monitor if I was having an allergic reaction which is very rare, but can happen). I was pretty distracted, but did feel a bit odd in the head and chest followed by a very warm sensation as if I was peeing myself. I was glad for the warning. The test was pretty easy and besides  the port placement it was painless.

The End Of Day 1

That was a super long post for a super long day! Needless to say we were pretty tired by the end of the day!

Pre-Transplant Evaluation Concerns

So I spent the past 4 days at Stanford getting a lung transplant evaluation. For me, the hardest part about going to the evaluation is that every aspect of the process was a complete unknown. Despite trying though a few avenues to learn about the evaluation process (via people who have been through it) I was going in pretty blind. I am a planner. I do not do spontaneous, unknown, unprepared well. So this week was a challenge to say the least. I had eight million questions and nobody to answer them.

I did however, find a blog from someone who was transplanted in 2012 and she wrote a detailed explanation of the evaluation process. Despite her transplant evaluation taking place several years ago her schedule looked almost identical to mine. I read through her post several times as a way to prepare. And even so I had so many more questions. So I am going to go through each day (through multiple posts), but today I wanted to clear up some of my biggest concerns that I could not find addressed anywhere else.

The schedule they give you is pretty intense especially for Monday! I had 8 appointments in that single day. 5 were scheduled and 3 were to be done "at my convenience" throughout the day. My first concern was things getting behind schedule. I was really worried I may end up late to appointments or even completely miss them. I was reassured that if a test was running late we only had to talk to the front desk and they would make the appropriate calls to keep us on track. Also, every time I had a test the tech (or whoever was preforming my test) was well aware from my chart that I was booked for tests all day and they kept things running smoothly. Actually, my first blood draw couldn't be completed because I was there at 6:30am to get my blood drawn and the TB test couldn't be taken until after 8. The lab technician left my case open so when I returned for my TB I wouldn't have to wait in the long line that had formed. Every test up until my clinic visit was right on time. Of course, after clinic was a whole different story, but I will get to that later.

Some of my appointments were scheduled very close together and had different wings for checking in. I have been at the same hospital for my entire adult life and I often find myself lost in the hospital walls because everything looks the same and feels a bit disorganized. I pictured myself wandering lost and late for appointments. Stanford is the most organized and easy to navigate hospital I have ever been to. It is almost impossible to get lost. And if you are confused there are so many people more than willing to help. A janitor walked us completely across the hospital to show us where the heart cath lab was located.

Another really nice aspect of Stanford is that they have valet parking for only $2 more than regular parking. It took so much stress off of trying to find parking and walking to the hospital. It also meant my husband and I weren't separated like we would have been if he dropped me off and then left to park. The parking attendants were so nice and recognized us everyday. Side story about the parking attendant, at one point during my evaluation I stepped outside the side door to cough into my sputum sample cup because I was trying to cough in privacy. The parking attendant just happened to walk by just as I spit a huge loogie in my sample cup. At first I was horrified because...gross, but he just gave me a thumbs up and a smile. I swear everyone at Stanford was so so nice.

Overall, the evaluation went much smoother than  I expected. The last day was rough, but I think that was because we ran into a few issues that I assume are not typical. If it wasn't for that last day I would say the experience wasn't nearly as bad as I had imagined. Even the tests, for the most part, were pretty easy and pain free.

Surprise

Sometimes I look back at my mid-20s and I think about the days that my husband and I were both working. We woke up each morning to go to our perspective jobs, both off to do important things. Joining our incomes for the first time was exciting and we were setting off to build this life together. We were young and naïve and totally clueless to how life really works, but that added to all the magic. We were playing house and figuring out this thing called life together. We felt strong and powerful and ambitious. We made plans of buying houses, having babies and making a beautiful life. The options seemed endless.

And somewhere along the line we made so many dreams happen. We bought a house and had an amazing baby. I started off working and then became a mother. I felt so lucky to stay home and raise that perfect little baby. But as everyone experiences in life, some of our hopes and dreams did not come to fruition. There were sacrifices and losses and grief, but we endured them together. And here I am 10 years later in my mid-30s looking back at the last decade and I sometimes feel a bit as if life went on and I somehow stayed stagnant. As Kaylee has grown older and started going to school full time I notice my limitations due to CF so much more. I didn't go back to work like planned. I still need mid-day naps even though my night sleep is no longer interrupted by a fussy baby. And there are more and more days that I am sick and in bed and unable to fulfill my basic household duties. There are more days my husband works and comes home to do housework and dinner and care for Kaylee while I lay useless in bed. On those days I feel like dead weight. I feel like a burden. And sometimes in the dark corners of my mind I do wonder if sometimes my husband feels a bit resentful of how much more work he puts in to keep our little family afloat. He would never utter those words out loud, but I do wonder if in the dark corners of his mind he wonders what it would be like if he married a healthy person instead.

So when I walked through my front door at 5:00 on my birthday to see my living room full of friends from all different phases of my life and heard "Surprise" ring through the whole house I felt so loved especially by the man who does the lions share in my home.  He secretly had a friend who is a chef make food, and a friend who is a bartender make a cocktail. He secretly invited my friends and coordinated with my sister and mom to get my out of the house. And one of my longest standing friends flew in just for the day to take part in the celebration. And just 5 days before I was scheduled to have my transplant testing done I was so filled with love and excitement that the high carried me through the next few days. And even when I start to get worried or stressed about my evaluation I just have to think of my birthday to remember that I am loved. And when I start to feel that I am less of a wife for not bringing home and income or for having so many "bad days" I can just think about all the thought and work and love that my husband put into this party that was meant to show me how much people care about me before I step off into this new scary and unknown adventure. 

The restrictions CF has put on my life can sometimes make me feel less than. I am such a different person than I was when I was healthier and working and productive according to societies standards. It can be hard to feel as if your life is slowly closing in on you and is made up of treatments and IVs and sick days when you once had a taste of living a "normal" life. But knowing I am cared for and loved just the way I am, CF and all, is forcing me to slowly redefine a successful life.

Kaylee Chatter Part 11

Kaylee and I were talking about her upcoming 7th birthday.
K in an exasperated voice, "I have lived a loooooooooong time."

Me: "Sorry it smells smokey in here. There was something that dripped on the bottom of the oven"
K: "I like the smell. It kinda represents us as a family."
Uhhhh….

Kaylee sleeps with one of my childhood stuffed animals.
Kay, " Whenever I miss you at night I just think to myself I have her in my arms (meaning my old stuffed animal)"

Ready Or Not

The last time I wrote I was feeling a bit lost with all the changes going on in my life and my health. I felt overwhelmed by the whole transplant evaluation and the thoughts of the future. I think I am finally feeling some peace with everything happening next week (NEXT WEEK!!!). I am starting to feel better health wise. I had a cold 3 weeks ago and I feel like I finally got over all the lasting effects from the cold, the weather has turned, and I am feeling more optimistic in general. Kaylee and I have even spent the past 2 weekends going to the park and playing badminton, basketball and volleyball. It has been so fun and her being 6 and completely inexperienced means I can keep up with her with my wheezy lungs! Feeling health enough to get outside and play with my daughter pulled me from my scared and sad state has left me reenergized and feeling more confident with what is to come.

 I am absolutely still nervous about the whole evaluation and the endless lists of tests hey are going to do and how jam packed the schedule is. For someone who isn't in good health the schedule seems very rigorous. I am hoping for more energy than I usually have, that I won't get too lost in the hospital (I have never been) and that things run on time because the tests are booked close together and we all know how slow hospitals can be. I am not sure what to do if we get delayed and start missing appointments! But despite these little worries I do feel like I am ready for the tests. I keep reminding myself I have gone through scary and painful procedures before and I came out the other side okay. This won't be any different. Scary and maybe painful, but doable. There have been so many other CF patients who have done it before me and so I know it can be done.

In other news, I turn 35 this week. I honestly am not sure how I got so old! Not that 35 is necessary old (although in CF terms I guess it probably is). It is just that life seems to be going by at an incredibly quick rate. I remember my mom's 40th birthday as if it were just a few years ago and somehow here I am halfway to 40, but how could it be possible that much time has passed? I imagine it will just keep marching by and I so hope that I get to be around with these lungs or donor lungs for a very long time!

Seasons

The end of winter brought late rains and unusually dreary weather. Winter is my least favorite season and too many days without sun makes me feel so glum. The wet dark overcast days seemed to reflect the heavy feelings that were floating overhead as I set a date for transplant testing and received the information  packet in the mail.

I always knew when the time came I would get transplanted and I often thought that being able to go through the process and knowing there was a second chance of life would bring some excitement and maybe even peace knowing that even when CF have ravaged a body beyond repair there is still a chance at a prolonged life. So many blogs seem to highlight gratitude and hope and joy towards transplant. But if I am honest, the heaviness and the sadness that has enveloped my heart is nothing like I would have ever expected. I keep waiting for my perspective to change, but I feel stuck in dreading every aspect of transplant.

I know some of the feeling fighting for space in my mind may not be 100% logical, but they are there just the same. I am trying to honor the process, the grieving and hope that it will make way for acceptance in due time. I know in the CF world blogs and social media often portray CF patients as beacons of hope and inspirations of bravery and strength. But I am sharing my raw uninspiring emotions in hopes that someone else may read them and feel that they are not alone in their real and raw feelings. Because to be human is to feel the whole spectrum of emotions and I think it may be a disservice to ourselves and others to only show the world the feelings that are inspiring. Because to be inspiring all the time is not human and it is not authentic. So know I am writing this not as a way to be pessimistic, but to say that in the realm of all emotions right now I am feeling some of the ones that nobody enjoys, but we all experience from time to time.

So much of having CF is holding on to hope and often a bit of denial because it is what helps us face each day especially when hardships arrive. When my doctors told me that I needed to get evaluated for transplant if it was an option I wanted to have in the future I felt as if they were giving up on me. I know this isn't logical and the logical part of my brain is saying that they are being proactive and doing what is in my best interest. However, it felt like they were washing their hands on the situation and passing me off to someone else as if they had no hope that they could help me anymore. It squelched the feelings of hope that maybe I will stabilize, maybe the 3rd correctors will help me, maybe I can persevere.

In combination to this feeling of being given up on I also feel so many feelings of failure. Again, the logical part of my brain keeps saying that as someone born in 1984 I have had a good run and nobody would have expected a CF baby to live to 35 (almost 35, but I figure I will make it another few weeks) and for that I should feel like a huge success. But the truth is that just because I made it longer than was expected for someone with my disease doesn't mean that I feel satisfied with 35 years and I want to live as long as every other damn person wants to. So feeling like my lungs may be failing me is sad and hard and feels frustrating no matter what the circumstances are. And I wish so badly that I could keep pushing on and break records (oldest CFer alive anyone?) and do so much more.

I feel scared! I feel terrified of the barrage of tests that take place during the evaluation, I am scared of the pain, the wait for lungs, the decline in my health, and the idea of dealing with a whole new unfamiliar disease. I am scared of the life expectancy and almost every detail that is involved in transplant. I am not scared to admit that I am 100% afraid of what lies ahead. It is not inspirational and it isn't brave, but damn it I feel scared!

I know this rainy dreary season in my life is just part of the human experience and I am trying to allow myself grace and understanding as I sort through all the emotions that seem to be passing through me each day. I want to experience each negative emotion and know that these feelings are valid and they are probably very normal and that this season will pass, but it is okay to not be okay at this very moment.

The second day of spring the rains stopped in Northern California and as I stepped outside to prune the fruit trees I noticed butterflies swirling around above my head. And the longer I stayed out the more and more I saw. Soon the whole sky seemed to be filled with these fluttering painted ladies. The late rains brought an abundance of butterflies migrating from Mexico and they found their way to my little part of the world and filled the skies with hope and beauty and a touch of magic. I can't help, but hope it is a sign that after the hard dreary days in this phase of my life lift that maybe when I step back out into the sun I will be surprised with how beautiful life can truly be.

Leprechaun Tricks

Being a new mom comes with a lot of surprises and a bit of a learning curve. Being a new mom of a school aged kid does too! Last year, on St Patrick's day Kaylee came home from school and was quick to inform me that most kids in class had a leprechaun visit their house while they were sleeping and that he had played tricks on their family. Kaylee was upset because a leprechaun had not come to visit us. I did not see this coming! The only aspect of St Patty's day I remembered from childhood was that if you didn't wear green you were sure to get pinched in school. This year, I was convinced not to be that mom.

Kaylee made several leprechaun traps and hoped for the best. I made a quick and easy plan to make some green mischief (mainly using a bit of food coloring in milk and our bathroom soap and flipping a few things upside down). Then the unexpected happened again. A few kids in class claimed  they had caught a real leprechaun and was keeping it as a pet. Which actually now that I write it sounds pretty messed up considering leprechauns are not animals and it really isn't legal to keep people locked in a container against their will. But now Kaylee believed she may actually catch a miniature magical man. There was no way I was pulling that off! Ha

When it was all said and done Kaylee got over the fact that she wasn't able to kidnap a tiny human and had so much fun believing in all the tricks the leprechaun played on her. It was so fun to see her absorbed in the magic of the day. It went even further when she got together with her cousins and magic seemed to be happening left and right! Jelly beans were changing colors and other magical things happened that may or may not have been figments of their imagination.

After Kaylee was tucked in bed that night she called me back to her room. "Mom, I heard the sound of a leprechaun throwing glitter in the air. You know that magical sparkly sound?" And as I kissed her one last time and joined my husband in the living room I realized that this may be the very last year she believes in leprechauns and St Patrick's magic. It makes me wish I started this tradition years ago because these little kid days go by much too quickly!

HillRom Monarch Vest Review

It has been a month since I received my Monarch vest and I have racked up just under 40 hours of use. I feel like I have used it enough to give it a fair review. Considering how many hours I have spent on my Monarch I bet you can guess how I feel about it. (This is long...brace yourself)

I will start by telling you all the things I have done while vesting in the Monarch over the past month because I think that alone speaks volumes. In the past week I have done my Monarch while cooking, cleaning the house, doing laundry, playing soccer with my daughter, harvesting produce from my garden, getting ready for bed/day, getting my daughter ready for bed/school, watching tv, and riding in a car (probably not safe and maybe illegal so I wouldn't recommend it, but it was still awesome). This has been a life changer!

I wasn't sure how much more convenient the Monarch would be because I do not have a portable nebulizer. Here's the thing though,  I do my vest SO much more often. Recently, my doctors told me to up my treatments from 2 times a day to 3 times a day because mucus plugging has been such a big issue. My whole life felt like it was stuck sitting in my living room Vesting. With the monarch I often do my Vest 4 times a day or I will do it for over an hour at a time. If I am stuck over the stove making dinner I just throw on the Monarch. If I need to do easy house chores…why not Monarch at the same time? It just is so easy to go above and beyond being compliant which is pretty amazing!

The other life changing aspect to Monarch is that it is quiet! You know how if anyone wants to watch tv and you come in to vest there is a collective groan and everyone evacuates because the vest is so darn loud you have to break your tv speaker to hear over the humming? Not with Monarch!! In fact, we watched a movie as a family...all in the same room, with my monarch ON! What?? It felt like a miracle!!

These are the two aspects that made me fall in love with Monarch, but it isn't all sunshine and rainbows so on to the nitty gritty details comparing the two.

Putting the Monarch on the first time I immediately wanted to take it off because it was uncomfortable. It is stiff and hard and feels like armor which is vastly different from the soft fabric of a deflated Vest. And the first few days I found it pretty uncomfortable, but manageable. The one thing to keep in mind is that I have had several people (RTs, Nurses and CF Drs) say that they tried using the (original deflectable) vest and found it so uncomfortable they needed to take it off. So likely the older vest was uncomfortable the first time we tried it too, but through the years we got used to it. This was the biggest reason that I kept pushing forward with Monarch. I am happy to report by the first week I was 100% used to the feel of the Monarch and although it isn't comfortable per se I would never consider it uncomfortable anymore. The old inflatable vest and the monarch are probably a tie in comfort in my opinion, neither feels like a cozy pair of pajamas, but nothing to complain about either..

The percussion felt so much more harsh than the vibrations of the vest and this was a huge improvement for me, but I could see some people not liking the feel. It felt so much more like manual CPT vs a gentle vibration (old vest), but this was a huge plus in my opinion. The percussion of the Monarch actually made me cough...a lot! I coughed the whole first week nonstop all day even after treatments. It was equally annoying and miraculous. Was this because the percussion was better or was it because it was something my lungs hadn't grown accustom to? I am not sure, but I was happy that I was moving mucus. In fact, after the first week I stopped the incessant all day coughing and started coughing out old nasty plugs. I have been coughing them out almost daily for the last month which tells me that for me and my body the Monarch is SO much more effective!!

There are a few downsides to the Monarch. First, the battery doesn't last as long as I would like and I find my Monarch warning me that my battery is low often. But I also use my Monarch a lot so this may not be an issue if you use it for the typical twice a day. I find the Monarch uncomfortable when my port is accessed. The gave me foam to put around my needle (it can be used even when your port isn't accessed, but now that I am used to the feel of the Monarch I don't feel the need to use the foam when not accessed), but it still just wasn't as comfortable as I would have liked. This is especially troublesome because when we are on IVs it is even more important to do extra treatments. My port is dead center of one of the pods so depending on your port placement or how long your needle is it may not be an issue. It is the one aspect that is a bit disappointing considering the majority of CF adults (Monarch is only available to adults) have ports. I feel like this should have been addressed during development, but I still feel the good outweighs that bad significantly.

The only other downside may be if you are a very small person it may feel heavy. It is 13lbs which is a bit of weight to have sitting on your shoulders. I think this may have been partially why I found the Monarch uncomfortable at first, but again I got used to it and the weight isn't an issue anymore.

I was a bit nervous to make the switch because I have heard such mixed results. However for me, the Monarch is more convenient, more effective, and overall a much better product.

Snow Days

My childhood memories are speckled with the magic of waking up in the morning to the first snowfall, and the thrill of sledding down my own driveway, and the sheer elation that of school closing due to a snow day! These are memories that are completely void in my daughter's (and husbands) childhood. We live in a climate that just doesn't see snow and even though as an adult I am so happy that snow is not a part of our lives, I know that there is something magical about snow in childhood. So every year we pack up some snow gear and drive about an hour to the Sierra Nevada and have a snow day.

This year we pulled Kaylee from school on Wednesday (avoiding the ski crowd) and made a day trip to the snow. We drove to a recreation area and because it was a weekday we were the only people around. There was a huge frozen lake and about 4 feet of snow. We built a massive snowman, went sledding, and had a picnic in the snow. All the while the snow kept falling. It was so neat to see my family experience a true snowfall (and man was it coming down). Being a bit of a worrier I kept asking my husband, "Do you think we should head out soon. There is a lot of snow coming down." And his response, not being much of a worrier at all was, "We are fine." I am not sure why I trusted someone who grew up in a tropical climate to give snow advice. By the fourth time I asked my husband decided he would start packing  up the car. As he trudged to the car Kaylee and I put the finishing touches on our snowman and upon his return he let us know that maybe we stayed a bit longer than we should have.

I am positive someone who lives in snow would roll their eyes at us, but as two people who have never had to be an adult in snow we were a bit worried that the road had disappeared under a blanket of white and we were a mile or so down a windy road. We helped Kaylee get out of her snow gear (can I just say I have so much respect for all the parents out there that have to deal with snow and small children. Man, it is a lot of work dealing with mittens and snow pants and boots and children covered in snow! And my child isn't even  that little anymore!) and we got our way out of the small snowy town we visiting and back to the freeway right as all the snow plows were making their way back to the roads.

Although I find snow absolutely beautiful I am much more of a beach person than a snow person and so usually after we get home and pack  our snow gear back into boxes into the garage I feel a sense of relief that we did our yearly snow trip and we don't have to go again for another year. Maybe because our trip was cut short by the excess of snow, or maybe it was the excietment of having a huge park all to ourselves, or the whimsy of snow dancing around us the entire time we were playing, but for some reason, this year those boxes of snow pants and gloves tucked away on a shelf in the garage seem to be calling to me again already.

Monarch Vest by HillRom

I am in utter shock! Why, you ask? Because somehow my insurance approved the new portable Monarch Vest by Hillrom. I just received it yesterday and it is totally embarrassing how excited I was to get a piece of medical equipment. I feel like I haven't had it long enough to give a thorough review of the product because I have only used it 5 times and it is soooo different than the old vest. It feels so different on my body, it feels different to put on, it feels different in the way it percusses. It really feels like it doesn't even belong in the category of the old vest, a completely different beast. After using the old style Vest for 20 years I feel like I need too give it at least a week before I can give a fair review. But I will be back with a review!

I did want to give some info on how to get a new vest for yourself. This is just information that was very helpful to me and I wanted to pass it on.  Hillrom doesn't even know I wrote this so this isn't sponsored (but hey hillrom feel free to cut me a check for this ;) ). I knew about the portable vest, but I wrote it off as something only people with amazing insurance could get so I never even bothered mentioning it at clinic. I think this had to do with my past experiences trying to upgrade from the 50lb original Vest to the much smaller and lighter 105 model years ago. Every time I tried to upgrade, my insurance said they already issued a Vest to me and so I should be happy with what I have. It took me 14 years to upgrade to the 105 so you can imagine I wasn't hopeful in getting an even newer Vest in a shorter span of time.

Here is the good news. Apparently, most insurance companies used to see the Vest as a lifelong machine and therefore many companies were not willing to upgrade. The only way I got a new Vest was that my insurance company changed so the never issued my once in a lifetime machine, hence the upgrade. But things have changed and now most insurance companies see the Vest as a 7 year investment. This means that if your Vest is 7 years old (which most of us adult CFers have had our Vests at least that long, but many of us have had them much much longer) there is a decent chance that you can get a new vest. I wish I had known that when the Monarch (or even afflovest) first came out because I would have gotten one as fast as possible. The best part is that if your insurance paid off your old vest you get to keep your old Vest too. How amazing is it to have a backup Vest?

Of course, insurance may not cover the whole thing and it is super expensive even when broken down into monthly payments.  But it is totally worth asking your clinic and seeing if/what your insurance will cover and then figuring out if it makes financial sense. It is good to know that the majority of insurance companies won't downright say, "no" if it has been 7+ years.