Saturday, January 19, 2019

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.

Sunday, January 13, 2019


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.

Friday, January 11, 2019

Science is Amazing

Christmas and New Year came and went and despite being hooked up to IVs (Avycaz) it was probably my favorite Christmas. Kaylee is young enough to still fully buy into the magic of the season, but old enough that she had a few items she reeeaaallly wanted. In the past, she used to play with everything and anything which meant she had no particular interest in any one thing. So when she asked for Christmas gifts all she wanted was "surprises" or "toys". This made shopping so much harder. This year she finally asked for specific items and spent the month leading up to Christmas so hopeful for these few items. It made shopping and gift giving so much more fun knowing how badly she wanted the gifts she received. Also, her current cat obsession meant that as long as something was cat themed she would be happy Christmas morning.

I am not sure how many more years (if any) we can pull off the Santa story so this year felt bittersweet. There have been doubts in our home about the truth behind Santa, but that Norad Santa Tracker sure helped put the seed of belief back in her mind. Watching the "video image" from the satellite she kept saying, "someone wouldn't' just dress up and ride in a sleigh to trick people..." Luckily, it never crossed her mind that the images weren't real. Maybe we can squeak out another year of believing? Or 2? Or 10? Okay, maybe not, but it was fun while it lasted.

So CF has been full on the past few months and as I was in the middle of home IVs I got a call from my doctor that may explain why I haven't been responding in the way we would hope from IVs. They found a bug in my culture (e-coli...I know it is too gross to even think about, but what can you do. Such is life). The medication I was using doesn't cover e-coli so we are going to try a different medication. I actually cultured e-coli in March and I was hospitalized for desensitization to Zosyn.

The original plan was to go back to the ICU and go through desensitization since we successfully treated it in March that way. However, apparently the ICU is a popular place in January (go figure) and the likelihood of finding a bed was slim. Amazingly, my doctor said there was another new medication available. You guys, there are NEW antibiotics for CF! This makes my CF heart so happy especially since I am allergic to so many!! It buys us all a bit of time when it comes to resistance and who doesn't want to buy a bit of time in this life? So if all goes well I will do a test dose at the infusion center to make sure I am not allergic and do home IVs. HOME IVS! No ICU!

And my cynical little self isn't holding my breath that all will work out until I am sitting in the infusion center with my test dose because things rarely go exactly as planned. And I am not 100% confident that this med will even work the way we want it to because this is my 4th month of trying to kick this infections, BUT the fact that there are even other options available makes me so happy.

Science is amazing!

Sunday, December 23, 2018

The Time My Tongue Turned Black

I was sitting in the infusion chair waiting for my port to be accessed by the nurse she asked about any crazy see effects I have ever had from all the medications I have been on. I told her that out of the few medications I am not allergic to, I have been very fortunate to not experience any bad side effects. Sure, I have normal issues like nausea, headaches, diarrhea, but those seem pretty run of the mill. I think the universe overheard me and decided I was needing more antibiotic excitement in my life.

So fast forward a few days and I was well into my third round of Avycaz and my first round ever of Zyvox. My side effects were what I would consider run of the mill. My GI system was way off and my mouth tasted like metal. Nothing too horrible. Food tasted funny and after I ate or drank anything a strange lingering after taste seemed impossible to cover up. I found myself chewing on gum a lot because my own saliva tasted bad. I also noticed a strange fuzzy feeling in my mouth. Nothing overly concerning, but annoying all the same.

And then one day I was brushing my teeth and just so happened to see my tongue in the mirror. It looked.... black... and fuzzy! I stuck my tongue out all the way and sure enough my pink tongue was replaced with a black and somewhat fuzzy looking tongue. I was horrified. It was as disgusting as it sounds. After I showed my husband he cried, "Why did you show that to me before bed? Now I am going to have bad dreams." I still can't figure out why he wouldn't make out with me after that. I tried brushing my tongue to no avail. A quick Google search told me this is a benign side effect from none other than Zyvox. Lovely. It did explain my weird altered sense of taste and the grossness in my mouth, but it wasn't exactly the most attractive explanation.

I have been off Zyvox for three days now and my tongue is slowly transforming back into its old color and texture (although I still have a ways to go). This has been by far the strangest antibiotic side effect I have ever experienced.

Sunday, December 16, 2018

CF is Weird

The title say it all: CF is weird! I went to clinic Monday and coming off a pretty horrendous cold I figured my numbers would be low(ish). I was expecting the low to mid 30s. I blew a shitty 25% which is a new low for me. And although that number is super scary low it did not represent how I felt at all. I walked 2 flights to get to clinic...I can't even do that when I am 35%. I don't understand how my numbers are drastically different than the way I feel. I knew I didn't feel like my baseline, but 25% is about as scary as it gets when you aren't on the transplant list.

Considering that number is so very low and extraordinarily scary I just knew I would be going inpatient and felt a bit devastated that I would be miss out on everything holiday related before Christmas. Kaylee's days are numbered where she will still believe in Santa and I didn't want to miss out on perhaps the last year of a magical Christmas.

And then my doctor decided to put me back on Avycaz and an antibiotic for staph which meant I would be doing home IVs. Considering everything I wrote leading up to this sentence I should have been happy with his decision, but mainly I just feel afraid. I have been on IVs 3 times since October (averaging every month!) and I just want to get better so badly. There is so much more pressure to do well when I am at home because everything falls on me. I know that even in the hospital I am the one doing breathing treatments and it is MY body that is trying to heal, but it feels like if I fail...the blame is shared between the hospital staff too. I know that sounds weird and logically doesn't make sense, but I feel like if I don't get better on home IVs I am the only one at fault (well, and CF too!). The wiggle room I used to have in my pfts have slowly disappeared over the years and I know that CF can get deadly so very quickly. I have seen it happen too many times too stay in denial.

Maybe this is a rough patch...I have had them before. Maybe this is a hump to get over to get back to my normal life. But maybe it isn't. Maybe this is a sign my lungs are too tired. I have never been the gambling type and so I won't gamble with this either. I want to be prepared if this bump turns into a downward spiral. And so with lots of tears and a long talk that went well into the night my husband and I decided we needed to start the process for transplant. I never doubted I wanted a transplant. I really do love living and I have so much to live for! How could I leave my daughter motherless?? How could I leave my husband alone on this Earth? I would do anything to live longer than CF will allow and transplant is the only chance at getting extra years.

But I never would have imagined how hard it would be to step over the threshold from "someday..." to "now" when it came to transplant talks. I feel like I failed having to admit that my journey with my CF lungs is over. I know that CF ends the same for every person and so it can't be seen as a failure, but as the inevitable, but that doesn't change the sense of failure I feel turning to the last resort when it comes to CF. I worry I am not strong enough to endure all that entails both physically and emotionally that comes with transplant. I feel sad for my lungs. They worked tirelessly even with all odds stacked against them to let me live these beautiful 34 years and I hate to see them go. I know, I know. It makes no sense to feel attached to an organ, but there is no organ in the world that has worked so hard for me than my lungs and again I feel like I am failing by choosing to replace them. I am so so afraid of what the process will do to my family. Just the thought fills me with so much mama guilt it makes my heart hurt in my chest. And what if they go through all the worry and stress and then it doesn't work?

I know none of these questions can ever be answered and the worry will never fully resolve, but I need to focus on choosing a transplant clinic that I think will suite me best. And in the meantime I need to work as hard as I can to delay the need for transplant as long as possible.

Thursday, November 29, 2018

Mr Sharpy

There are certain experiences we have as a kid that through the lens of the parent is so radically different that watching your child live out those same experiences can feel confusing. Early November brought one of those experiences to our household. There was a lot of excitement buzzing in the air because Kaylee, after wishing and hoping since the age of 3, finally had a tooth that was on the cusp of falling out. Being a young first grader and possible a bit late to bloom in the dental arena, Kaylee felt as if she were the very last first grader to have all of her baby teeth. So when that tooth finally started to really wiggle her excitement could not be contained. And one evening as I was tidying up in the kitchen and my husband was working on Spanish with her, she squealed, "My tooth fell out!!"

She was busy jumping around the kitchen when I asked to see her baby tooth. She gave me a wide open mouth grin, bearing a little empty spot in her smile that exposed a little pink gum and she quickly deposited her baby tooth in my hand. Seeing that little strip of gum shot me back to the days when her smile was all gums. And then glancing at the tiny little tooth in my palm I was remembering the day that her very first tooth, lovingly named "Mr. Sharpy" by my husband, burst through. Suddenly, with the emergence of that tiny white fleck in her baby mouth all the fussy nights and cluster nursing made sense and somehow it all felt worth it because my baby had her very first tooth!! And now, that same tooth that brought so much excitement was sitting, useless in my hand. And yes, I was excited. How could I not be with a 6 year old brimming with pride over this tiny tooth and the adult tooth that would arrive a few days later? But I also felt an overwhelming sense of sadness? Or was it nostalgia. I can't be certain, but something was tugging at my heart strings that made me want to pull Kaylee closer and demand her to stop growing older.

These milestones that our children keep hitting bring them so many feeling of joy and excitement and I clearly remember the thrill that came from losing some of my own teeth. But as a mom, these milestones come with a harsh reminder that life keeps marching on and our children keep growing older and more independent of us. And yes, ultimately this is what we want for our children to grow up and apart from us, to be their own independent beings. Oh, but this mama heart wishes time would slow down just a bit so I can enjoy being her mama for as long as possible.

Monday, November 26, 2018


It is human nature to try set goals and work towards achieving them. Nobody want to remain stagnant in any aspect of their lives: relationships, career, education. We have a drive that pulses through us so that we can continue to achieve our dreams and goals and pursue a life full of richness and fulfillment. This drive pulses through me just as strongly as it did when I went off to college, when I applied to jobs, when I went up for a promotion and when I wanted to become a mother. But I am struggling so much with taking that drive and that passion and making it a reality as CF presents itself more and more in my daily life.

CF has changed the way I view myself, specifically in the past 5 years. As my health situation has become more complicated I have trouble living the life as the person I think I am. I have always been driven and hard working and prided myself on doing well in school and in my careers. But lately my health seems to get in the way of all of my goals, not just the far reaching career and life purpose goals. Small goals like improving my swim times are constantly set back to zero by an exacerbation which leaves me too short of breath to swim more than a few laps. And even more basic goals like "I am going to catch up on laundry this weekend" get pushed aside when I wake up sick and unable to get out of bed.

In this season f my life I have been trying to focus on letting go of all expectations and just let my life ride out in the way it was meant to be (dictated by my health) and in many practical ways I have learned to adapt. I do everything early when I can because I know when the time comes I may be too sick to fulfill my duties. Like this fall when I bough Kaylee's backpack a month early, but didn't get shoes for her. I ended up sick the week before school started and she didn't get back to school shoes or other nonessential, but fun new items for the new school year. I write things on my calendar knowing there is a good chance that my health won't allow me to follow through. I say no more often than yes when given invitations trying to preserve my energy and minimize my germ exposure. But the practical ways of adapting are easy. It is the emotional adaptation that seems to be a struggle.

For so long Kaylee filled all my desire to feel successful because being a good mother is the most important job in the world and it was a 24/7 job that used up all of my energy and left me happy and full of pride each night. But as she has gotten older and needs me less and less I find more time in my day that I am not needed which makes me want to push myself to take on new responsibilities. With Kaylee in school full time I am finding myself with a lot of free time and that calling to do more, to be more is in full force.

A few weeks ago an opportunity fell in my lap that seemed to be the answer to my need to do more. A mom in Kaylee's class sought me out because she knew my background in education. Her daughter is dyslexic and she wanted my help through a specific program to tutor her daughter. She paid for the training and told me that the demand for these tutors in Kaylee's school alone was high and she had several families that may be interested in the same services. The hourly rate is high and the schedule flexible. I felt like this would be the perfect jumping off point in making money and starting my own business. Finally, I felt a little hope towards a fulfilling career. My husband was on board and we both felt so much excitement for this new endeavor.

The day before my first tutoring session I got sick. I coughed for 24 hours straight. I was able to tutor, but within hours of the student leaving my voice completely disappeared which happens every single time I am sick. The next day I wasn't able to get out of bed. The negative side of me felt so stupid for believing that maybe I could try to spread my wings and be human. I felt dumb for thinking I could push CF aside and try to do something for myself. The hopeful part of my brain that usually cheers me on even when the odds are slim was quiet for the first tie in a very long time. I haven't been well since September. Despite two rounds of IVs and a few rounds of orals, I seem to be in a pattern of sickness that my body can't pull out of. I have been here before and I know I will be here again, but right now it feels like a sinking hole I can't get out of. I also know when I sit here in the bottom of the pit of sickness my hope slowly starts to slip away. With CF the only way to survive is to hold on to hope because we really don't have anything else to grasp for.

For now, I am pausing my plans to build a business. It feels like a failure, but maybe it is just a pause button on a future success. Maybe the timing isn't right. Maybe it never will be, but if the time ever is right I know I have a plan. Maybe when I crawl out of this pattern of sickness I will reassess and try again. I will keep this one student and maybe over the next few years I can add a few more. Maybe I can't, but maybe by then I will have learned to let go of the expectations of what life should be like and just live the life I was given.