Cooper

I have ALWAYS been an animal lover. When I was granted a wish from the Make A Wish Foundation at a young age, I decided to get two little Yorkies, Lucy and Dobby. When Lucy and Dobby came home they quickly became part of our family, we loved them greatly and they showed us pure unconditional love back. They kept us warm, gave us kisses and made us laugh, pretty much everyday! They lived long beautiful lives together and we couldn’t be more thankful that they were a part of our family. They were our best friends. Lucy and Dobby, passed away peacefully last month. Dobby passed in his sleep with his sister by his side and a day later Lucy passed peacefully as well in bed with her mom. They were 16 years old at the time of their passings. Our family will miss them greatly and we are saddened by their losses, however we know it was there time to join God in his kingdom and we believe they could not have gone in a more beautiful and peaceful way.

In addition to Lucy and Dobby, another dog joined our family a few years ago. He is the goofiest, smartest and most loving little guy there is. Brady quickly stole our hearts when he joined our family. Once again we were surrounded by kisses and love all the time! Brady loved the yorkies to no end, he became the “protector” over Lucy and Dobby, his elderly siblings. Brady too shows us all unconditional love but he undoubtedly has one best friend…Brady AKA “B” became my Dad’s wingman, going everywhere with him and guiding him through opening his own business…. Tailor Made Dog Care, a dog daycare and boarding facility where dogs can go to run, jump and play 24/7! Brady loves his Dads choice in business!

After losing Lucy and Dobby, our home felt different… I felt myself longing for a “best friend” of my own. Lucy and Dobby gave us so many beautiful years, I knew they would want our family to keep going and provide another dog an amazing life like we did for them. My mom, didn’t seem to think a new dog was the right fit during this time in our lives…. but something in my gut kept telling me that it was the right time, that our family needed to welcome another member.

If you have been following my blog for some time, you would know that I have talked a lot about struggling with anxiety and depression. Anxiety and depression took a huge tole on my life this year… I felt like I had a black cloud over my head, moving with me everywhere I went. When I saw my Dad with Brady and other’s with their dogs, I felt like I needed my own doggy best friend to help me through the ups and downs in my life. I saw the pure enjoyment dogs brought to their owners and craved that feeling I had felt before with my own dogs. I craved the unconditional love from a furry family member.

After a lot of encouragement (from me lol) my mom finally asked me if I wanted to go to the animal shelter and look at puppies. Of course, I did not hesitate, we hopped in the car and headed to the shelter! We met this amazing little guy with big goofy paws. My mom and I fell head over heels in love with this puppy. He showed us his warm, loving, funny personality right away… He felt like he belonged as a part of our family…. turns out, he did! That day, Cooper became a part of our family! I was filled with a burst of happiness when Cooper came home… He makes me laugh even when I feel down. He is there to listen when I feel anxious. He’s a complete snuggle bug all the time! He makes any little task feel like an awesome adventure. He is the best shot gun ridder on any car ride. And most importantly, he is my my furry best friend… the best companion a girl could ever want. I truly believe he was sent to me by God. Cooper has truly made my life brighter and improved my mental health immensely. Everyday we go on journeys together and spend the day side by side, enjoying every moment. Cooper keeps me active and most definitely keeps a smile on my face. Being Cooper’s dog Mom is an amazing feeling.

At the end of the day, I cant help but think that God has a plan for all of us. God only gives us the battles we are strong enough to handle and gives us everything we need to get through the toughest of battles. God gave me Cooper to help me through my battles. I am forever thankful.

Cooper…. Mama loves you endlessly! You are so much more than “a dog”. You will always be my best pal! Love you Coop

-Mama

Trikafta… The Triple Combo!

Let me start off by saying…… WOW, I can’t believe we made it here. So many of us were told me wouldnt live long healthy lives and we we wouldnt make it to a certain age…. but here we are! I can’t believe we have gotten to the point where 90% of the Cystic Fibrosis community is treated by such amazing, life altering drugs. It is absolutely amazing that we are beginning to win in the fight against Cystic Fibrosis. Trikafta, aka the “triple combo” drug for CF has changed the lives of many, in such a short period of time! I’m talking very short time… within hours of taking the drug many CFer’s are noticing their body functioning differently!

In my own experience, this drug has insurmountably changed my life. My first day on Trikafta, I was in shock, I experienced what many CFers on the drug call the “purge”, when your body is adjusting and purging all the old mucus in you system. I was very impressed with the rapid impacts the drug took in the first couple days but for me, the weeks to follow brought absolute amazement. I have noticed incredible improvements in my energy levels, I no longer feel physically exhausted around the clock. I have also noticed major changes with my breathing, before Trikafta, my baseline breathing sounded like the little crackles of pop rock candies. I used to clear my throat a lot throughout the day and when I was sicker, my baseline cough became a junky mess! My junky lungs also made my voice sound a little different, according to a kid I went to middle school with I had a “frog voice”. However, Trikafta has changed my breathing vastly, I feel as if the air is lighter and easier to take in… like my breathing is so smooth and effortless. I no longer hear the crackles of my own breathe. I feel more confident when I talk, knowing I won’t have to clear my throat or cough during conversations and I feel as though my voice is less “froggy”. I feel like I am finally feeling something that I never knew was a feeling…. clear and easy breathing! Something so many take for granted everyday, yet I never knew how it felt. I was used to my way of breathing, it was normal to me. I now realize what I have really been missing out on for quiet some time! I am so very thankful for every single person that made this drug possible! I would say Trikafta “took my breath away” but in all reality… Trikafta quite literally gave me breath I never knew existed!

With all the great news in the CF community, it is also important to remember the losses of many who did not make it to this point in the fight… many who never got the chance to reap the benefits of such amazing drugs… We also hope and pray for the CFer’s with rare genes that have yet to receive a life changing medication… We hope and pray that the untreated 10% receives a miracle drug very soon! Although we have made incredible progress in our battle, the fight is not over! Now is the time to push like crazy, fundraise like crazy, and spread awareness like crazy…. Until every person with Cystic Fibrosis is cured!

Do It For Yourself

As my last two post have explained, I’ve been battling mental health issues for a while now (sorry if I sound repetitive, I try my best to provide background in each post for new readers). I made a post regarding meditation and mindfulness and how they seemed to help me feel a bit better. However, like most people, sometimes it’s hard for me to stick to things. So as of more recently I have not been meditating on a regular basis. Which brings me to the main topic of this post…. the complexity of the human mind. Isn’t it crazy that our own mind can play tricks on us? Our own mind far too often rationalizes the bad choices we make in life and puts off good choices for “another time”. For example, we all want to keep our bodies healthy so we can live a happy rewarding life. We know the answer to obtaining a healthy lifestyle (get exercise daily, eat healthy, self care, and pay attention to our bodies needs), however far to many of us procrastinate doing so…. We make up an excuse in our head as to why we cannot do those things at the current time and we postpone them. We often postpone these things we know are good for us so much that we never end up doing them, which means we never reap the benefits! Why are we, the people who want the best for ourselves, the ones neglecting ourselves?

Now of course not everyone is like this, but I believe a good chunk of people struggle with similar situations on a daily basis. I’ll be the first to admit I am a procrastinator. I’ve been saying I need to get back to the gym for a few months now and I’ve only gone here and there. The list of things we “should” be doing sometimes feels unbearable. However I believe I have found a method that works for me when it comes to tackling this issue. Narrow down the list. Focus on obtaining one good habit at a time. Maybe you start with the thing you believe is most important or maybe you want to challenge yourself and try conquering your hardest hurdle first. For me, narrowing my list down to one thing I’ve struggled to commit to was easy. My treatments. Everyday I dread doing my treatments just because they are so time consuming and there’s nothing else I can really do while doing them. Doing my treatments not only interferes with my day, but is also a perfect time for my anxiety to spike. Despite the fact that I dread doing them, I have to do them to keep my health in the best possible condition it can be in. Everyday 2x a day (3x when I am sicker) I have to do my treatments (side note, I previously posted a youtube video of me doing some of my treatments if you are curious to see what they entail. You can find this video by scrolling down to the post I made titled “My First Youtube Video”. Also note that my treatments do vary when my doctors think a different regimen is needed or a new problem arises). Everyday my goal has been to tackle the dreaded task of doing my treatments and I am actually doing pretty good. I’ve had a few nights here and there where the mind games win and I am “too busy” to get them done, however my compliance to my treatments has drastically improved. My next goals will be getting exercise daily and meditating at least once a day. I am not sure which I will tackle first, or if I will tackle the two at the same time but I know for sure those are two things that will greatly help not only my physical health but my mental health too. These are habits I am committing to myself that I will achieve. I hope this post motivates you to do something good for yourself. You will always be you, no matter what. The body your in now is the body you’ll be in until your last breathe. Don’t let your mind trick you into bad habits that will hurt that body. I know, its easier said than done but if you take it step by step, accomplishing one small goal at a time, you will always be bettering yourself and on the right track to a healthier, happier life. Love and prayers to all.

Anxiety? Depression? Mental Health? Lets Talk About it!

This year particularly I have been struggling daily with anxiety and depression. For what reason? I couldn’t really tell you…. However anxiety and depression has taken a huge toll on me not only mentally but physically. When you’re down in the dumps, even the smallest task can feel impossible. For me, it felt near impossible to get up and do my treatments everyday. My lack of compliance landed me sick, in the hospital for a good chunk of time. I’ve been in and out of that hospital too much in these past four months.

Depression and anxiety, for me, felt worse than having CF…. It felt like an impossible illness to treat. Yes CF is awful and hard and I hate it, but with CF there is hope. Hope for a cure and better treatments… There’s medications and treatments that manage its horribleness (for the most part). Depression and anxiety (to me) felt hopeless. Therapy had steered me wrong in the past. The medication offered didn’t seem too promising and provoked more anxiety for me. I was spiraling out of control. I felt my mind was on its own path and there was no real help for me. I was dead against seeing another therapist. I tried the medications but never felt real relief….I felt lost.

In my opinion, the worst part of dealing with anxiety and depression is the lack of understanding many people have and the lonesome feeling that comes along with it. Those that struggle with anxiety and/or depression are the only ones who truly know the feeling. It’s like saying you hate the taste of chocolate, but you’ve never tasted it. Only those who have tasted the chocolate before actually know what it tastes like. That being said, anxiety isn’t just as simple as “let it go, stop worrying”. Depression isn’t as simple as “just be happy”. Trust me, if it were that easy I’d 100% already be doing that and so would many others with the same struggles.

For me, I use the terms anxiety and depression together because my anxiety affects my happiness. When I am very anxious I seemingly always feel very depressed. I feel this sense of sadness that is so immense that normal things feel impossible. Despite the hopeless feelings that grew within me, I knew I had to try something. After all, I knew doing nothing wouldn’t help, so I stuck with the idea that something is better than nothing.

I began working with a psychiatrist who helped me give the medications another shot. When I was sitting with my psychiatrist one day, she recommended therapy to me (as everyone did). “Here we go again” I thought to myself…. Why was I so reluctant to try therapy again you may ask… Well because I had dealt with this in the past and therapy never seemed to help me. Every session felt as though I was being interrogated. I was asked a million questions and starred at with concern. “Why do you feel this way” were perhaps the words that bothered me the most…. I don’t know, I don’t know, I don’t know, I don’t know….. I really do not know! I just wanted it to go away. These sessions left me feeling worse. It was almost like an open wound that was being opened even more and then being sent home without it being stitched shut. However, reminding myself that “something is better than nothing” and not every therapist is the same, I decided to give it another shot. Before I knew it, I was booking an appointment to see a therapist.

The day of my appointment came and I was not optimistic. I began talking to the therapist and she asked me a question I’d never been asked before in therapy. She said “what are you looking to get out of this? How can I best help you”? When the therapist started by asking me these questions I knew these sessions were going to be different and hopefully helpful. I told her that it’d be helpful if she could provide me with some techniques or methods to help me manage and cope with my anxiety and depression. She did exactly that. She didn’t leave me with no suggestion or tell me to draw a picture of my feelings….She suggested some concrete coping and calming methods. She had me download an app on my phone called “Insight Timer”. It’s a meditation and mindfulness app. They have guided and non-guided meditation recordings of all kinds. I’ll be the first to admit, meditation always seemed sort of odd to me and I didn’t really see the point. Regardless of how I felt, I went home and tried one of the breathing exercises like my therapist had suggested. I have continued to try a new one every day since. She had made it clear that doing a breathing exercise once was not an end all for my struggles. So with persistence and a “something is better than nothing” mindset I kept doing it and I am still doing it. Honestly, I cannot believe I am saying this…. but meditation and mindfulness practice,along with an antidepressant and some therapy is helping me. I am getting relief. I am stepping in the right direction. Is my depression and anxiety gone? No definitely not….but it certainly has become a little more bearable. Do I feel like sunshine and roses after I meditate? Not exactly, but I feel ok. I feel peaceful. Of course not every time I meditate I feel this way. Sometimes I cant shut my mind off enough to relax. However, some days feel much better than they did before. I still have some days I feel like nothing can go right and I am not in control of my own mind. Other days I feel ok, like I am able to be me and not have the constant companionship of my anxiety. I am working everyday to become a more mindful person and I am feeling a lot less hopeless. I am happy to be doing better…..One foot in-front of the other!

This post targets a new aspect of living with Cystic Fibrosis, mental health. When I was diagnosed and all through growing up, my parents were told that many people with CF are prone to anxiety and depression. As you can see from this post, I have become overwhelmed with both recently. With that being said, I felt the need to share this with you all. The moral of the story is not that everyone should meditate and everything will be amazing. The moral of the story is that there is something out there to help you, you just have to push and fight and search to get there sometimes.

Just keep chugging along. You can and will be OK.

I Am Not Always “OK” With Having CF…Today This is How I am Feeling

Sometimes I feel like it’s impossible for something else to go wrong for me…. Then usually around 2 minutes later something else goes wrong. At this point I am tired, tired of staying strong, tired of plastering a fake smile on my face when all I want to do is fall apart in tears, tired of telling myself not to post something because people out there have it worse than me. Today, I am so tired of everything. I know people have things worse than me, I pray for those people every single day. I know I have a lot to be thankful for, I thank God every day for everything he has blessed me with. But right now, I’ve just about had it with the phrase “I’m OK”. I am not “OK” nothing in me is “OK” with the fact that I’ve spent the majority of 2019 in the hospital. I am not “OK” with the fact that CF has taken a semester of my college education away from me. I am not “OK” with having the energy level of a person 4 times my age when I am only 21. I am not “OK” with being told I have Cystic Fibrosis related diabetes and needing to take insulin now. I am not “OK” with CF. What I am is angry and fed up… So yes, this post may seem like I am complaining and at this point that is probably because I am. But hey, life’s hard. Sometimes a truthful rant about not being “OK” is called for. Sometimes being raw and authentic about how crappy you are feeling despite the fact that society tells us we have to act “OK” feels better than smiling to please others. So there you have it, the long awaited post may not have gone as usual but not every post can be sunshine and roses when your main goals are authenticity and relatability. I am human, just like anyone else… at times we all feel sorry for ourselves. As for anyone who is worried about me for making a post so different from my norm… the answer is no, I am not giving up. I am not in some huge irrecoverable catastrophe. I am not in the hospital. I am not in need of anything. I am just simply sharing another aspect of the fight and it just so happens to be not as pretty as my normal posts. Yes, I know this feeling wont be forever, but today… this is how I am feeling! As for anyone who’s feeling the same way or has felt this way in the past, you are in my prayers. Sending love to all, despite my poor attitude today.

So Many Things To Keep Track Of!

(Hello all, again sorry for another delayed post!)

As I’ve grown into a young woman with Cystic Fibrosis, I have experience different aspects of my disease. Some of these aspects I may have experienced when I was younger, but not that I can remember, my parents can give their input on that!Growing up (from what I can remember), my Cystic Fibrosis issues mostly consisted of lung infections, pancreatic insufficiency, trouble gaining weight and some GI issues. I still have all those things of course, but the list has grown. These past couple of years I have been on the brink of Cystic Fibrosis Related Diabetes, have had to monitor my liver, have had damage done to my kidneys resulting in having to monitor those too and started experiencing sinus issues (including killer sinus related headaches). Along the way I have learned so much about the endless possibilities of things that can go wrong while having this disease and I have to admit at times it can be very overwhelming! I feel as though I always have a list of things I need to get done that is never ending, including but not limited to: treatments, scheduling appointments, attending appointments, staying active and trying to spread awareness for the disease. I see this new list of things as both a blessing and a curse. The more I personally experience and learn about, the more awareness and help I can provide for others. However, at the same time, to put it quite simply it can be a real pain in the neck the majority of the time. I definitely need to find a better way to keep all these things organized within my mind!

Today I figured I would share these things with you to dive deeper into the aspects of progression and complexity of Cystic Fibrosis. I’d like to remind everyone, the problems I have talked about are not atypical for a person with CF. Progression is something most CFers experience at some point in their life. Not all of us experience it at the same time or in the same ways, but almost all of us get hit with a little bit of something as we get older. That is where the term “complex” comes into play, no two CFer’s are impacted by the disease exactly the same! The disease can span from not being diagnosed until 50 years old due to lack of symptoms, to needing a lung transplant at a very young, all the way to passing away far too young and many other variations in between! It’s truly crazy to think about. That being said, I am beyond thankful to have such a great CF team, so many great research and pharmaceutical companies and an amazing support system full of family and friends. I’d also like to recommend today if you believe in prayer, to take a moment to pray for the CFers out there that are at their worst right now. Pray for the families, friends and angels who have fought so hard but unfortunately lost the battle too soon because of this awful disease. Pray for all those with this disease. Finally, pray for the future….Pray for a cure.

Thanks again for reading.

Love always,

Josilyn

The Test That Started It All

NOTE:A sweat test is a method to test for Cystic Fibrosis. The test measures the amount of chloride in a persons sweat. People with CF have far more chloride in their sweat. This test can result in a Cystic Fibrosis diagnosis.

“Sweat Test”

By: Josilyn Gaudet

18 years years ago you changed my life. You solidified a journey no parent wants to see their child go through.

You brought tears, anxiety and fear to my family and friends.

You confused me …. a lot.

You changed my entire life in a way that my little soul at the time could not fathom.

You set the path for me and it was one I had no choice but to follow in life.

You confirmed my diagnosis.

You told me I had Cystic Fibrosis.

After that day, you were always just a faint memory in my head but today I met you again.

Today you were an opportunity.

Today you were apart of new research, to see if Kalydeco has changed the amount of chloride in my sweat and how that correlates to lung function.

Today you’re results would help better understand.

Today you’re results could not and would not impact my life.

Today you were exciting and interesting.

Today you were no big deal.

Today you felt like a victory, because today I was the one who left on a positive note.

Today you were nothing but an experience.

Today you were nothing but a test….

Today, the power was all mine.

Thank you again for reading my posts. If you are new to my blog and are curious to learn more about when I was diagnosed at age 3 go check out my first ever blog post titled “Diagnosis Period”. You can find it by scrolling all the way down until you can’t load anymore posts. Hope you all enjoyed reading. Feel free to comment and share with friends!

Growing With My Disease

Picture from when I first got my port!

First I want to start off by apologizing for not posting content on a regular basis. I have mentioned this a few times in previous posts but have not gone into depth about it. I mentioned being very busy during the college semester and some other things that have had me preoccupied. However I don’t think I’ve touched base on the biggest reason I have been slacking on making posts regularly. When I first began my blog I told my self I wasn’t going to post just to post, I wanted to make sure everything I posted was something I was passionate about, something I could use to inform and spread awareness or something that could help others through their day to day lives (with or without Cystic Fibrosis). With that being said, I sometimes struggle to find something to write about. I want to be proud and fully indulged in every one of my posts. That is also why I struggle writing posts regarding my health updates, I feel these posts can stray away from the type of content I want to be posting, but I also think they are essential in bringing you all along on my journey. If you can’t tell by now, I have been over analyzing what I should and should not post a little to much lately. I am in the process of trying to find my happy medium, so hang in there with me! Aside from my over thinking, today I thought of a topic I believe is worthy of discussion! Journeying into adulthood, with Cystic Fibrosis and just in general.

I want to start off by mentioning one of my recent accomplishments (not really sure if this would be considered an accomplishment, but in my book it feels like one, so thats the word I am choosing to use lol). A little over a month ago I bought myself a new car! A car registered, insured and financed in my name! One that I am proud to be making monthly payments on. Nothing screams entering adulthood more than beginning to pay your own monthly bills! At 20 years old, financing a car and paying some sort of monthly bills is a common obligation, but one that can be pretty difficult to accomplish at times. The process (and struggle) of buying a car at a young age with limited developed credit reminded me greatly of beginning to make decisions about my own health. Both were processes filled with mixed emotions, happiness,anxiety, hope, worries and courage. Both are major steps towards adulthood. Lets face it, going from a kid to an adult is not easy in any shape or form, then add a terminal illness on top of it… Definitely not easy. At the same time, very worth it and at times rewarding! It’s a long process and trust me, I am not all the way there yet, but I am proud of the progress I have made. My first “aha moment” happened when I was at one of my clinic visits and one of the nurses came in and mentioned beginning the transition process (from the pediatric team to the adult team). My initial thoughts were “WHAT! Nobody’s taking me from the doctor and nurse practitioner I have had since diagnosis! They know me to a T!”, but after talking more I realized, it was bound to happen one day and that I’d benefit most from embracing the process. I was also happy to find out they were not going to just throw me in the mix with a bunch of new doctors, the transition would be gradual and I would gain exposure to multiple adult docs and see who is right for me. They ended all being very great of course, but I think I found the one who is best for me! I am still seeing my pediatric team and slowly undergoing transitioning and it isn’t nearly as bad as I thought it be. If I have to be honest, I like being the one the docs look to for answers regarding my health rather than mom and dad (They still help me a great amount of course, I can’t take that away from them. They know their stuff!). I like analyzing my own symptoms and considering when I need to go into the hospital or when I need another course of treatment. I’m kind of like my own personal puzzle in away! However, in the same breathe… There are days where I miss being somebody else’s puzzle, some days where I’d rather not answer questions and much rather look to mom and dad for every answer. Someday’s it’s harder to push yourself when you don’t have your parents yapping at you to get your treatments done. But hey, thats life, life is hard and as an adult pushing yourself and being your own advocate is essential!

When it comes to rewards of my journey into adulthood and self advocacy, one thing always comes to my mind first. My Port! I have mentioned this a few times in some other posts, but a port is a catheter that sit under the skin and can be accessed with a needle to do IV treatments. A port is not taken out when it is not in use, it remains under the skin. Having CF and crappy bacteria in your lungs causing frequent lung infections can make antibiotics a necessary part of treatment once in a while and with age, the need for IV’s can become more frequent. Aside from a port, these IV antibiotics can be given a number of different ways, one being through a picc line which is only put in and taken out when in need of IV antibiotics. I made a post a while back about picc lines and the nightmare they were for me, that posts goes into greater detail than I will now. I got my port about a year or so ago. I was told I needed to go in for a course of IV antibiotics and my nurse practitioner brought up the possibility of a port. That day, I made my first big CF decision without the influence of my parents. I decided I would go for the port. Honestly, I could not be more happy with the decision I made! My port has made things so much easier, I’d consider it a Godsend! My parents obviously approve of my choice and are very happy to see me being my own best advocate. Like I already said, they are still a huge part of my team and of course always will be, our roles in my health care are just adapting and all for good reason. I am proud to be making them proud and I am beyond lucky to have such an awesome team backing me all the way.

My goal today is to try and post more often both on my blog and my YouTube channel. I have a couple of things in mind, but as always, your recommendations help a lot! I hope you enjoyed this post and I can’t wait to bring you more.

Sometimes CF Hits Like a Whirlwind

We are only 3 (almost 4) months into 2018 but I already feel as though so much has happened this year in regards to my health. Its been one thing after another and I feel as though it has been impossible for me to catch a break. That being said, I feel it is necessary for me to update you all through another blog post. I am not great at remembering dates and stuff, so I am going to try my best to sum everything up, without leaving anything out. Here goes nothing…..

Around the middle of February, I began to feel like crap. My cough began to get junky, my energy began to decline, my shortness of breath increased and I had streaks of blood in the mucus I was coughing up from my lungs. I visited my doctor and as I had anticipated, the decision was made to go back into the hospital for more IV antibiotics! It had only been about 3 months since my previous session of IV antibiotics, so I was not looking forward to another hospital stay but I managed! My body began to respond quickly to the course of IV’s (my same regimen as always, Vancomycin and Ceftazadime), so I was out of the hospital within a few days and was able to go home to finish my IV treatments.

I have mentioned this before but not in very much detail, so I will try to go into greater depth this time. The antibiotic Vancomycin works well at fighting the bacteria in my lungs, however the medication being so strong can be toxic to some other organs in the body, the main organ being the kidneys. The main job of the kidneys is to filter waste out of the body through the urine. With these organs being so essential in the human body, it is necessary that they are closely monitored when on an antibiotic like Vanco. This is done so by having blood drawn twice a week two hours after a dose while on the drug. There are two main things the doctors are looking for when they take your blood test. The first is to see if the medication level in your blood is at a level that is therapeutic (meaning that the dosage is high enough to be effective) but at the same time making sure the dose dose not pass a certain level where it can become toxic to the body. These levels are measured by a range of numbers, if your vanco level is between 15-20 (give or take some, but somewhere around those numbers) then your dosage is considered therapeutic. However if your dose is below that range the antibiotic will likely not be doing much at all and if it is above that range it can be toxic to your kidneys. The second thing the watch is the function of your kidneys to make sure they are not being harmed by the dosage. I was used to these routine blood draws because I had been on this regimen a number of times.

Each week my blood was taken and the dosage was at a good level and my kidneys were in good shape. Then one week the result came back and the dose had to be tweaked a little because it was below the therapeutic range, meaning the dose needed to be increased. At the point of my dose increase my Vancomycin dosage was at a substantially high dose because that was the dose my body was requiring for the medication to be therapeutic. After feeling great for some time, I went to the doctors and we decided to keep me on the course of IVs for one more week in hopes of increasing my lung function even more. However the weekend after my appointment I started experiencing extreme nausea and what I believe was a bad case of the stomach bug. I called my doctor to see what I should in regards to my antibiotics while having the stomach bug and I was told if I could not keep myself hydrated, I should miss a few doses until I was at the point where I could fully hydrate myself in order to keep my kidneys safe. With that information I missed 3 doses because I knew I was unable to properly hydrate myself while feeling so crappy. After missing those 3 doses I began to feel better and felt I was hydrating my self sufficiently again so I resumed my antibiotics. I got four total antibiotic doses done before going to Boston that Monday to see how I was doing and get labs drawn again. I left the appointment after I learned my lung function dropped again (which I had predicted would happen after having the stomach bug) and the thought that I could end up back in the hospital in another week to try some different antibiotics. My boyfriend and I were on our way home feeling pretty bummed out but also feeling optimistic that I could get my lung function back up with lots of airway clearance. However after driving for about 10 minuets I got a call from the CF clinic asking me to turn around. They got my lab results back and they were not good. My Vancomycin level was suddenly at 66 (very high when thinking of the range 15-20 where the level should be) and my Creatinine level ( one of the numbers used to measure kidney function) tripled what it had been at my baseline, which showed evidence of kidney damage. I had to be admitted that night to make a plan for my kidneys this time. At this point I was in no mood to have to spend more time in the hospital but I had no choice. I was admitted to the hospital at 7pm that night with really no idea what was going on in my body considering I had never had kidney issues before. I was met by a team of doctors and was told I had something called an “acute kidney injury”…. I personally didn’t think it was too aCUTE lol. They proceeded to tell me that there was not much that could be done other than thoroughly hydrating me, watching my kidneys closely and taking me off all medications that could cause more damage to my kidneys. Basically I was hit with the unknown. It was unknown wether or not my kidneys would fully recover or if the injury had impacted them too greatly to fully recover. “Only time will tell” is what they told me. That being said, I spent that week on the hospital hydrating and battling nausea. It remains unknown wether I actually had the stomach bug at all or if the nausea stemmed from my kidneys crying out for help. It also remains unknown if the incident was caused by my body not being well enough hydrated after the stomach bug or if I was given the wrong dosage by my home care company which resulted in poisoning my kidneys. I left the hospital with a small recovery in my kidney function and was to continue to hydrate myself at home in hopes that the levels would continue to drop. After being home for about two weeks, my kidneys have continued to move in the right direction and today I am happy to say they are a little above my original baseline but they are almost all the way back down and are in normal kidney function range! I am happy to say the whirlwind has ended…. for now at least!

So whats next in my journey? Is anything else happening? Ill save that for one of my next posts…..Hint: I will be monitoring my blood sugars for these next two weeks.

Stay tuned! And as always, thanks for reading and coming along on my journey! Even if at time it seems like a whirlwind!!