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.

Kaylee Chatter Part 10

Kaylee was laying on the living room floor reading.
"Mom, this book has bald words in it!"
"What are bald words?"
"You know...BALD words!"
"Can you give me an example because I am not sure I do know."
"The words you see when your reading and you know you can find them in the glossary."
"Oh, YES! I do know what bold words are."


"Save the last for best! I learned that in school."


This one wasn't from Kaylee, but was funny nonetheless.
Kaylee had a cold and was losing her voice.
J (a kid at school): "Kaylee, what happened to your voice?"
K: "I am getting sick"
J: "Oh, you kinda sound like your mom."
Good old CF voice :)

Thursday Traditions

Getting ready to list for transplant has made me feel a strong urge to document more of my daily life with Kaylee. Just in case. I know that sounds morbid and I promise I am hopeful for a future. But if things don't end well she will have a great record of our lives together. And if it does end well then we will both have a great record of our past. Win, win.




My husband has always worked late into the evening on Thursdays. There were other evenings that he works until after Kaylee is in bed, but this is one particular day I don't see him before bed either. When Kaylee was little this made for a long evening especially in the winter when we were trapped inside. Born from this less than ideal situation came my favorite tradition with my little girl.




Every Thursday Kaylee and I made homemade pizza. In the past I used to make dough with her, but admittedly have gotten lazy and started buying store bought dough in recent years. It was a fun dinner because even at a young age Kaylee and I could do it together. She would stand on her little chair next to me, we would both put on aprons and create our own pizza masterpiece. Back when the tradition first started Kaylee insisted that we only call one another "pizza lady" instead of our real names. After the pizza was done she would often be found marching around the house shouting, "Pizza for sale!"




The next part of the tradition actually started as a separate tradition that eventually merged with pizza lady Thursday. When Kaylee was little there were times that I really wanted to watch TV especially on those long winter nights. Unfortunately, I really hate kids cartoons. So I opted to watch cooking shows (we used to watch Pioneer Woman the most) because it never had inappropriate content and we both found it interesting. Kaylee would spend the entire show talking nonstop, "That looks yummy, Can we make that? I like broccoli, ooh I bet that is yummy...." and I essentially couldn't hear a single thing. But it was still better than a kids cartoon.




Fast forward to last year, and we started watching a cooking show (she loves the British Baking Show) and eating pizza on the living room floor. At first, I felt bad eating dinner while watching tv because it was so very different than how we were raised. The dinner table was for eating, not the living room floor. But then I got over it. 6 days a week we sit at the kitchen table and talk over dinner so one day eating in front of the TV can't hurt and has turned into such a fun tradition we both look forward to.




And the last part of the tradition just started last year! When my husband would come home and crawl into bed it would often wake me up and sometimes I would struggle to fall back asleep. When Kaylee got a full sized bed I realized that there was absolutely room for two people especially considering she is still so small. Thursday night I started sleeping in her bed. That way I don't wake up when my husband gets home (around 2 am) and he doesn't wake up to my early alarm. We both sleep better and Kaylee counts down the days every week for her mommy sleep over.


And now Thursdays are known as our pizza lady, baking show, sleepover nights.