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.

Transplant Beginnings

This was a busy week CF wise for me. As of Thursday I officially had my doctor's send a request on my behalf for a transplant appointment at Stanford. It is such a mix of emotions that I have trouble sifting through my own feelings at times. I keep trying to find blogs or info on the emotional side of listing, but it seems very few people touch on this point or at least in a way that even scratches the surface of the feelings that accompany such a huge life altering decision.


For now, I will say I bounce between so many feelings and often have several opposing feelings all at once.


I am feeling relief because at this point transplant is a security plan in case I suddenly get very sick. I feel relieved knowing that if I am in an emergency situation and quickly need a transplant at least I have the process started.


I also feel terrified in a way that I have never felt before. EVERY aspect of transplant feels scary. The testing, seeing if I am accepted, the surgery, the unknown of transplant life, the statistics of transplant survival. Petrifying.


I feel like a failure! I wasn't able to "beat CF" or "not let CF get in my way" which are common phrases in the CF community that I find damaging to anyone who finds that CF does in fact find its way to be an issue. Isn't that what CF is...a progressive disease that gets more and more in your way as it progresses. I guess slogans like, "I am learning to cope with a quality life that keeps getting diminished by CF" doesn't have the same ring except it is actually much more true to most of our journeys with CF.


I feel so much sadness. You spend your whole life knowing someday you will need to consider transplant, but you never fully prepare for that day to be today. I also feel sad that we are so very close to so many CF advances and yet it will likely be too late for me to benefit from any of them. In moments of extreme worry I worry I will get a transplant, a cure will arrive and then I will die from transplant complications.


I feel so much guilt! I feel guilt that I am putting my family through this process. I feel guilt that my daughter will carry such a heavy burden so very young. I feel guilt for how my post transplant life (mainly germs and if/when complications arrive) will burden my family, but especially Kaylee.


I feel hopeful. I love the idea of breathing well. I love the idea of no more treatments. I LOVE the idea of exercising like a real human rather than a 90 year old. I love the idea of being a person with energy and the ability to be more active in life. I feel hopeful that life on the other side will feel worth it.

Daisy

I am in my second year of being a Girl Scout troop leader. The first year there was a steep learning curve, but this year I feel like I am in my groove. Working with kids is something I enjoy and have a lot of experience with, but things like cookie sales (!!!) was a lot more complicated than I thought. And oh my goodness, a lot more work than I expected. Thankfully, this time around (we are currently in the midst of cookie sales again) the whole process is much less of a mystery and at least I know what I am doing even though it is still a lot of work!


The girls are obviously all a year older than last year and I can't believe how much one measly year makes in attention span, behavior and ability to really work together! It is so much more fun now that they are getting bigger and I hope that as the girls keep getting older we can take on more ambitious activities and outings. I know eventually camping becomes a big part of girl scouts (we are trying to do an overnight at the zoo this year), but because of all my treatments and medical equipment I am not sure how that is going to be possible for me to be a part of. Having CF means roughing it is pretty impossible. I need electricity for my Vest and nebulizers at the very least. But luckily for now, our kids are still little and we aren't planning on spending a weekend in the woods anytime soon.


This school year we have gone on a few outings. Before winter breaks we went to a planetarium and a science museum. We went to a community college to look through their telescope and saw planets, a nebula, and even saw another galaxy! I took astronomy in college, but our telescopes were nothing like this so it was a super cool experience for me too! We also went caroling around Christmas and everyone went ice skating.


It has been so much fun organizing activities and going out and experiencing new things with these girls.