My CF Chronicles

I'm Holly. 20 year old Cystic Fibrosis fighter. CF sucks, and this is where I will share my experiences. I also have been diagnosed CF related Diabetes, Depression, and Anxiety.

[dreamingofbreathing]

I just read your comments about Bates Motel and am happy to see my opinions about the writing of the character reflected in yours, an expert. The representation of CF struck me as ridiculous. I don't have CF but I am asthmatic and when my Ashma is bad, even I can't do half the stuff she does - and I've never needed oxygen! You should be annoyed by this, I am. It so 'Hollywood disability'.

Exactly! Hollywood is all about trying to glamorize what living with a disability really is like (the show Red Band Society did it even more so) and it's really frustrating. People whose only identification they have with illness is from these TV shows are given an unrealistic idea of our lives and would expect us to live life in a way that we physically are unable to. I'm glad someone who doesn't even have CF was able to pick up on that as well!

[dreamingofbreathing]

And we are BLESSED to know you and be able to learn from these things you share with us! Thanks! - - Jerry

No, thank you!! You’ve always been so supportive and I can’t express how grateful I am for that! 

[dreamingofbreathing]

blessed

There are two ways I could look at my life: positively or negatively.  Choosing one or the other will change nothing about my situation, but only how I move forward, live my day today, and my personal mood.

Recently, I’ve been guilty of seeing everything in a negative light. That’s what depression will do to you. I think about how I’ve been unable to work or go to school because of my health. I had a breakdown when I had to go back into the hospital a few weeks ago thinking how unfair my life was. My peer’s lives seem like they’re getting really exciting and busy with school, work, sports, being able to go to different events and parties, and having a basic idea of what there life could look like in five or ten years and be happy about the future. Meanwhile, I’ve felt as though my life has been left in a standstill of not progressing in terms of schooling or my career. So naturally, I acted and felt very bitter towards the people in my life who are happy, healthy, and living their lives.

Tonight something switched in my head and in my heart. Yes, my life is very different from what most people in their early twenties experience, but that’s okay. I am blessed. My health may hold me back a bit, but there are so many other people with Cystic Fibrosis (many whom I’m friends with) who would love to have their lungs as strong as mine. I don’t have to use home oxygen and a lung transplant for me is in the far out future. Blessed. I have an amazing supportive family who allows me to live at home rent free, pay my bills, and care for me emotionally and physically. Blessed. I have surrounded myself with some of the best friends and community ever. They’re always there for me, always visit me when I’m in the hospital, keep me grounded, and are some of the most caring and fun people I know. Blessed. I am lucky to have the most supportive boyfriend ever. He always makes me feel beautiful and loved, even when I’m sick in a hospital un-showered for days and high on pain meds. He’s there for my good days and bad days and couldn’t ask for anyone better than him. Blessed. I have a roof over my head, a car to drive, food in the kitchen, and dogs laying beside me. Blessed. My managers at my work are the sweetest and make sure I take off as long as I need to when sick, knowing that my job is going to be waiting on me when I’m well enough to return. Blessed. 

Things aren’t easy. It’s a process of learning to accept my current life and health situation and move forward. I can’t let it cripple and consume me or else five years will pass by and I’ll find myself sitting in this same spot feeling the same way and not making the most of my life while here on earth. I am completely blessed by God by having the insane amount of love and support that I have in my life. I know He would never give me anything I can’t handle and with His guidance and my trusting faith, I know God will be able to use me to do amazing things. Although, I don’t understand why He allows some of the things to happen in my life, I know it’s all so He can use my position to glorify Christ. For that I am blessed. 

[deactivated-blog]

I am a Christian with CF and I feel so deeply for those who are non-believers in this community. I just know how depressing and hard this disease is and know the only reason I’m able to have a more positive outlook on my situation is because I believe Jesus is by my side through it all and is ultimately in control. Knowing after this hard life I’ll get to be in heaven is my drive. I feel so bad for my friends with CF and others I see who are atheist who are bitter and depressed and turn to drugs or alcohol to cope… I wish they could see there is another way, but I don’t know how to without pushing them away.

Share Your Secret | These Resources May Help (via mycfsecret)

[dreamingofbreathing]

A friend recently posted this quote from an unknown source. You might find it quite appropriate! "Flowers grow back, even after they are stepped on. So will I." Stay strong! My thoughts and prayers are with you!!! - Jerry

Aw I love that!! Thank you so much for your love, support, and prayers!! 

[dreamingofbreathing]

Hold on. Dont give up. You're beautiful and you're important. You're so important and i hope you beat this. I pray for you often and think about you. You are never forgotten from my mind and you will always be just as important as you are right now.

Thank you so much, lovely!!! I really really really appreciate it!! Your thoughts and prayers mean the world to me! 

[dreamingofbreathing]

youre amazing. keep fighting. you are so important. <3

thank you so much!! <3

[dreamingofbreathing]

[dreamingofbreathing]

well hello again.

Hey everyone! It’s been quite a while since I’ve posted or updated and I guess it’s time to fix that! 

I have officially been on Orkambi for three months and wow... where do I even begin? 

It took several weeks of IVs, pain medication, patience, treatment compliance, and prayer, but I made it over the hump! My lungs were finally healing from my MAC infection, I had gotten over my viral infection, and the side effects from Orkambi had subsided and I was feeling great! I began walking at the park, playing tennis with my boyfriend, and even began running more and more! I’m not going to lie, I had a huge motivation factor- my boyfriend had planned us a trip up the Tennessee for a weekend away where we would be going hiking. Don’t judge me for my reasons for wanting to quickly get healthy, but somehow I did it! The hike in the mountains was long, steep, difficult (think less walk in the park and more like man vs wild-rock climbing-one with nature-craziness) and the air was cold and dry, which completely burned my lungs and throat every time I took a deep breath in. But the this crazy thing happened... I was able to keep up more than ever before! Yes, I still got out of breath and had to take stops, but what usually would have been a 5-10 minute break had now become a couple minutes tops! For the first time since I was probably 14 and in really great shape, I could feel my lungs expanding and working in my favor! I was bringing up much less mucus and what I did bring up was thinner than I would have ever imagined for myself! Overall, I would call the trip and weekend a success! 

That success rolled over to the next week. I went to my clinic for my first follow up appointment since ending IV therapy. My weight had gone up 5 pounds (as of today, I am up 10pounds and my weight is at an all time high) and my lung function had hit the highest it’s been since August 2014!! My FEV1 when starting Orkambi was 55%... However, I was battling two infections when I started and my normal baseline was 80%. When I went to clinic that day, my FEV1 was at 94%!!! That number is never seen by me!! I began tearing up!! My health was finally making progress!

Personal life updates, I started back to work a few weeks ago after being out on medical leave since the end of June and I couldn’t be happier! I haven’t talked about him much on here, but I am happily in love with a man named Cameron. We met/started dating in the beginning/middle of June and we’ve been “official” since August. He has been such an amazing support system for me, that it’s amazing! He’s stayed overnight with me in the hospital, rubs my back while I’m coughing or throwing up, helps me with my medications, constantly wants to know more about CF, encourages me in every aspect of my life, will drop any and everything to be with me when I’m not feeling well, and is honestly a complete blessing to me. I couldn’t be happier! 

But with all good, comes a little bad. During the holiday rush of everything, I forgot to place my delivery for Orkambi as soon as I should have. This resulted in the specialty pharmacy saying that it would be in on Tuesday (I would have ran out of meds on Monday). I tried to get them to expedite the shipping, but everyones hands were tied. “No big deal, it’s just 24hours without medication. I’ll be fine,” I thought. Well do to UPS (or Fedex, I’m not sure who we used) being so backed up from all the holiday online shoppers, my Orkambi didn’t come Tuesday...This really became a problem, because I was leaving out of town for a few days on Wednesday morning. My mom called the pharmacy and they promised it would be there the next day. Around noon I became anxious knowing I was behind schedule and needed to leave ASAP, so I called the pharmacy and demanded the shipping information so I could track my delivery. There in large bold print on the website it said, Expected Delivery Time: 8:30PM... I couldn’t wait. Frustrated, upset, nervous, and angry I got in my car and drove off without my medication, knowing I was already a few hours behind schedule. I ended up going 5 days without Orkambi... Learn from my mistakes, if I can urge you anything it is this: DON’T GET OFF OF THEM FOR ANY PERIOD OF TIME!!! I am currently going back through all the side effects, because my body had adjusted back to it’s old self, pre-drug. The lung pain, tightness of chest, coughing until throwing up, hot flashes, exc... it’s all back. I’ve had to call my doctor and get my oxycodone prescription renewed and called out of work for a couple weeks until this all dies down. It sucks, but at least now I know that it does end and when it does, I know how good I’ll be feeling! 

I hope everyone had an amazing holiday season, Christmas day, and here’s to a healthy and happy 2016 for all of us!!  

[chronic-confessions]

Confession #320

No matter how much pain I may be feeling at the moment, I never complain to my friends. In fact, I don’t even tell them how awful I’m feeling, unless they specifically ask me about it. I don’t know, I just feel like I’m seeking attention and being selfish when I bring it up myself. So I only talk about it when I don’t have a choice.

[dreamingofbreathing]

Month 1 of Orkambi Recap

Yesterday was my last day of my first month’s dosages on Orkambi. 

If you want to read in detail about my first week you can find that post here. 

The second week on Orkambi was extremely similar to the first in terms of the side effects. Still a lot of pain and tightness in my chest that I couldn’t shake that kicked in roughly an hour after taking the medication- like clockwork. However, towards the end of the second week I started being able to wean myself off the pain medication. I started pushing through the pain during my day doses, because I hated feeling drugged and helpless during the middle of the day. However, I did continued to take the pain medication during my evening doses so I could sleep comfortably and not be up all night in pain and unable to breathe. By the middle of the third week, the pain had fully alleviated!! The hot flashes stayed very consistent until probably the 25th day. The amount of mucus I’ve been bringing up has gone back to my normal amounts. No longer has it been insane amounts, like during “the purge” process and it hasn’t been less than before. I will say that my mucus has become noticeably thinner than ever before! It’s more of a watery consistency and been easier to move out.    During the second or third week, I did have an episode where I was coughing up blood. It wasn’t enough for me to be worried about and stopped on it’s own within a few hours. I told my team and they didn’t seem too concerned, because it wasn’t more than a few tablespoons amount.  I had been admitted to the hospital during my first week on Orkambi because of some gnarly infections I have/had in my chest. While admitted my lung function (FEV1) was at 55%. Last week, I went for a follow up appointment and my lung function is now up to 80%!!  Overall health wise, I’m still too sick with infections to be able to tell if Orkambi is making a difference or not. I’m on home IV antibiotics and oral antibiotics still and will be for another couple of weeks. The weird thing about Orkambi being such a new drug is that everyone on it (minus people in the trial) don’t really know what to expect and when to expect it. We’re all just figuring it out together. I wish a bunch of people could just say, “Don’t worry! You’ll start feeling like a million bucks because of ‘x’ and ‘y’ reasons after being on it for 2 months.” But that’s not how this is happening. The drug has reacted so differently with so many people that it honestly seems like a free-for-all guessing game in terms of figuring out what to expect and when to expect it. 

[archliches]

CF stands for 'chronically fucked'

I’m a doctor now that’s what it means

[ceepstyle]

As a disabled person, I don’t like that my life is viewed as a constant reminder to non-disabled people that it could always be worse, and I don’t like that I’m considered inspirational simply for living the life I’ve been given. Disabled people don’t exist to inspire non-disabled people or to remind them that there are no excuses in life, or that life could always be worse. We did not ask to be feel-good story on the 5 o’clock news when we go to football games, get asked to prom, or graduate high school. Those are just normal teenage things and it shouldn’t be any more inspiring because you do them sitting in a wheelchair or with some other disability.

What You’re Really Saying When You Call Me “Inspirational” (via ceepstyle)

[dreamingofbreathing]

Week 1 of Orkambi Recap

Let me start off by saying, everyone wasn’t joking about these side effects. Like clock-work, forty-five minutes to an hour after each dose, my lungs cramp up. It starts with coughing. I’m not talking about normal CF coughs. Theses are coughing attacks that last and last that leave you gasping for air, that albuterol treatments don’t help with.  Another part of the lung cramps is intense lung pain. It’s hard to tell if it’s more muscular pain from all the coughing or from all the tightness, but it’s not pleasant in the slightest. The only thing that I’ve found that’s helped alleviate the pain is oxycodone.  Thirst. I don’t know how more people haven’t talked about how incredibly thirsty this medication can make you. I’ve drank more water and powerade this week than I have in a very long time. A very annoying, but harmless side effect has been the hot flashes and perfuse sweating. It’s no joke. I’ve had my hospital room set at 60degrees all week, yet I’ll still be sweating, red in the face, and burning hot in shorts and t-shirts. It reminds me a lot of when a high fever breaks, but I haven’t had any fevers. My first few doses, I felt kinda floaty and woozy, but that has completely subsided. 

THE PURGE: The amount of mucus that has came out of my lungs this week is alarming. It’s kinda scary to see if all come out, knowing that has all been sitting in my lungs for so long. I will say though, that my mucus is now the thinnest it has ever been in my entire life! It’s pretty cool to be able to see how much that has changed in the past seven days. My doctors have asked me if I wanted to stop the Orkambi for a few more weeks while I’m being treated for my exacerbation. They wanted to make sure that the Orkambi wasn’t to blame for my 30% loss in lung function and make sure the lung pain wasn’t being caused by something else. However, I told them I want to try staying on it and just powering through the side effects. We agreed that if in a couple weeks my lung function hasn’t improved, then I’ll try stopping it. So I’ll keep everyone posted.

[dreamingofbreathing]

Hey, so I don't know if you're interested but one thing I hate when I have an infection and a drop in my FEV1 is feeling so out of control and how heavy my lungs feel!! One thing I found really helps (or at least helps me not feel helpless and heavy) is just a drop of essential oil on my wrists, usually lavender or lemon grass, in the morning. Then if I panic or feel heavy or anxious, I smell my wrists and I really do feel better. :) I know it's no cure, but I wanted to share. Get well soon! <3

I’ve tried lavender before for anxiety and I truly think it helped! I don’t know how much I think it would help with my actual lungs, but I’ll have to look into that for sure! I totally believe it could help with mental help. Thanks for the idea though and wishing me well! 

[dreamingofbreathing]

30% drop in lung function

I knew I was really sick and that I feel worse than I ever have before, but that didn’t prepare me for the number I would see when I did my pulmonary function test yesterday.

My baseline FEV1 is about 85%. My last FEV1 was 82% back in July.  The best I was able to blow yesterday was 55%...

I have never been this low before and honestly I can feel the extreme difference in every way. Before now, the lowest I had ever been was 70% and I thought that wasn’t fun... Being at 55 is honestly just a shock to my system in every way.

Turns out I am culturing pseudomonas like usual, the MAC micro-bacteria like I was before, and tested positive for the rhinovirus. I’m now on 3 IV antibiotics, 1 inhaled antibiotic, and 2 oral antibiotics... Hopefully they’ll all do the trick though and I’ll be able to get back to my baseline soon enough. 

[dreamingofbreathing]

I'm glad you had a fun weekend at Music Midtown. Hope your body recovers quickly!

Thank you!! Hoping this admission isn’t too long or stressful