Alternative Medicine

During a clinic visit a few winters ago, while discussing ways to keep lung infections at bay, my doctor said that my option was to start a low dose antibiotic (azithromycin, I think it was) that I would take every day. When I said that I wasn’t too keen on taking antibiotics forever, her reaction was ‘Oh, I guess you like to take a more “natural approach” to your treatment’.

Well, now, I’m not opposed to going to doctors and taking prescription medicine, but being on antibiotics forever doesn’t seem like the best approach at this point in my life. I know that sometime down the road it may come to that, but for now I’d rather avoid that particular option if possible. I was a little put off by her tone and unwillingness to look into or discuss other means. Around this same time the owner of the print shop that I was working at became a doTerra rep.

I’m sure at this point most everyone has heard of doTerra, or any of the other essential oil companies that are being marketed on facebook by people on your friends list. After listening to my boss talk about how amazing the oils are I decided to try some for myself. I bought a few that I thought would be beneficial to me, such as Breathe, DigestZen & Peppermint, and after a couple months of ordering through my co-worker I decided to sign up for myself so I could get the discount. I won’t go into all of the drama, but let’s just say that having your boss be in your upline of a multi-level marketing scheme is not the best idea. I was told that I HAD to spend the minimum amount every month or her to make money and host so many classes and recruit more reps. Well, after using the oils and dealing with the drama for over a year, I wasn’t seeing the miraculous changes to my health that I was being told that I should be (according to my boss, I shouldn’t even need to take any prescription medicine, including my digestive enzymes as long as I was using the oils. For the record, I was not gullible enough to quit my normal routine, I had really only wanted something to supplement it from the beginning) so I decided I needed a break from it altogether.

Fast forward to a year and a half later, I feel like I’m ready to really give them another shot. I probably won’t do a lot of what I was told to do before, such as put the oils in my drinking water and spend a small fortune on the doTerra vitamins. But I would like to see if I can’t study it a little more on my own and figure out a way to use them that works for me.

I just got a diffuser so that I can have Breathe or Lavender in the air at night while I’m sleeping and I’ve also jumped on the Himalayan Salt Lamp bandwagon. I’ve had a lamp at home since last winter and I can’t with 100% certainty say that it’s helping my lungs, but the shelf that it sits on is dust free compared to others in the same room, so I know it definitely keeps the dust at bay. I just got a small one that I can keep at work since that’s where I spend the majority of my waking hours, to hopefully cut down on dust and allergens as well as help with the winter blues that I seem inclined to experience. I would love to be able to diffuse oils at work as well, but since I work in an open cubicle style office, I don’t think it would be very respectful to my co-workers. I’m going to give this some time to see what I think of these antibiotic alternatives.

Surgeries

The incision on my stomach was pretty big!

My first surgery was at 2 weeks old. I had a pyloromyotomy (say that 3 times fast, I dare you) to widen the opening between my stomach and small intestine. The official term for what I had is Pyloric Stenosis, a blockage of the opening, due to a thickened pyloric muscle. Considering stomach/digestive issues associated with CF, it's surprising this is completely unrelated to it.

My parents were in Casper visiting family and showing off their adorable new baby, and I was having major issues with projectile vomiting. My mom took me to the doctor to have it checked out and found out that all 6 lbs of me would need emergency surgery. I do need to mention here that the doctor that diagnosed me with this is the same doctor that will 5 years later diagnose me with CF. Shout out to Dr. Green and my mom for essentially saving my life, not once, but twice!

Now I can't image that sending your new baby into surgery is a walk in the park and I was so small that they had to put the IV into my head. After surgery my mom was able to see me and the IV had slipped and started filling the space between my skull and scalp with fluid. She tells the story much better than I can, but needless to say she was a little shocked at my new alien-like appearance.

The surgeon wasn't exactly delicate with their incision or sutures so I still have a pretty distinct scar on my stomach. I'm told that it looked like a caterpillar because of the way the sutures stuck out of my stomach and to this day it still looks like a giant bug.

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Luckily I was able to make it several years without having to go into surgery again, but my second major one was just as unplanned. I was 25 and living on my own in Denver. I hadn't been feeling well and started to develop severe pain in my abdomen and wasn't able to keep much food down. At this point I hadn't really been seeing my CF clinic on a regular basis, so I went to an urgent care clinic. After a blood test (high white count), vaginal ultrasound (maybe it was ovarian cysts), and a CT scan, I was sent to see a surgeon to take out my appendix. They also saw a spot on my liver in the scan so I had a liver biopsy done at the same time.

A week after having my appendix out and still not feeling any better, I got a call from the surgeon that my tests came back negative for appendicitis, which was very frustrating to say the least. I called my CF clinic and explained everything to the nurse, and in a heartbeat she said that it was DIOS (an intestinal blockage) and made an appointment for me to get that treated. She was correct, and that was my hard-learned lesson to always check with my CF clinic first.

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My last major surgery was a few years later to have my sinuses cleaned out (scraped) along with a septoplasty and shaving down of my turbinates. Sinus issues are a big part of having CF and most CFers get this surgery every so often to clear things out. Incidentally my non-CF sister had to have this same surgery, so it's tough to say if mine is fully CF related, or if I'm just super lucky.

This surgery was quite possibly the best thing that I've ever done. I was having daily debilitating headaches by the time I had it, and though I still get sinus headaches, they're nothing like they were before. Every few years I get a CT scan done of my head to make sure my sinuses are still clear and luckily I can say that they are. Most of my sinus problems now are just due to swelling, which is why I use a nasal spray every day.

Interesting side note: I found out that I don't have a sinus cavity above my right eye at all, it just never formed (insert hard-headed jokes here). One way that chronic sinus issues can be treated is to obliterate the cavities, so I'm partway there naturally!

My Seester!

We are the world's okayest
sisters!

When you have a disease that takes up a lot of time and energy, it's easy to forget that you're not the only one the disease affects. My younger sister, Alaina, has always been by my side and one of my biggest supporters. I asked her a few questions about what it's like to have a CF sibling.

How do you think having a sibling that has a terminal illness affected you when you were growing up?

Ya know, I've thought about this before, and I kind of feel like when we were younger, it wasn't really a "big deal". I feel like Mom and dad always did a really good job of not highlighting the fact that you had a terminal illness (at least to me) It was just something you had to deal with a little differently than a "normal" kid. I don't ever remember feeling sad or scared about your CF until we got older and I had a better understanding of what it was. 

I’ve read articles about parents that are worried that their non-CF child will be jealous of the attention that the one with CF gets. Were you ever jealous or resentful of any additional attention that I might have gotten?

I'm sure there were a few times growing up where I was jealous of the extra attention that you got, but again, I think mom and dad did a pretty good job of making me feel equally as special. If anything, I think I maybe got away with more stuff than the average kid may have. I do remember plenty of times that you were angry or annoyed that I got all the same privileges as you even though I was 2 years younger. i.e. same curfew, same allowance, etc.

Both of us have made the decision to not have children. Did the fact that you may be a CF carrier play a part in your decision?

It did play into it a bit, but that wasn't the only deciding factor. If I had really wanted children, I would have definitely had myself tested for the CF gene prior to finalizing the decision to do so. 

Since I was pretty healthy growing up, we didn’t deal with a whole lot of CF stuff. I kind of feel like I missed a “CF 101” class along the way and still get caught a bit off guard when people ask specific questions about it. Do you feel like you could adequately explain what cystic fibrosis is to a stranger?

I feel pretty confident now while explaining what CF is when people ask me about it, but when we were younger, no way. I knew that whatever it was, it made you cough all the time, mom would always ask you about your poops, you had to take a buttload of pills with each meal/snack, and we had to take frequent trips down to Denver because of it. As I got older I realized that I hardly knew much about it and took it upon myself to research it more thoroughly. 

You are a massage therapist and yoga instructor/owner of Om On the Range Yoga & Massage. Do you think having to go with me to the hospital every 3 months for our whole childhood led you to a career in in the health industry?

I had never really thought about that. I imagine it probably had something to do with my interest and comfort level of being in hospitals and health centers. It did, however play a huge part in emphasizing the importance of breathing! I remember going along with you when you would do your lung function tests and having the docs give me a shot at it as well. I remember them teaching you how to take deep belly breaths and that has always stuck with me. In massage school and Yoga Teacher Training, they say how many folks never use even half of their lungs when they breath and I found it as shocking since taking big deep breaths was such a second nature thing in our household.

If you could give any advice to a kid that has a sibling with CF, what would it be?

Love them and treat them just like any other sibling. Don't treat them differently than you would just because they have CF (within reason. I realize that not all CF kids are as capable and healthy as my sister was, and may not be able to take part in all the "normal" kid activities). But play with them like they're your sibling, and fight with them like they're your sibling, because that gives them some normalcy in their lives. But, also, be curious about their illness and ask as many questions as possible, and be there for them when they need you. And just because they may be sick, doesn't mean that they can't be there for you when you need someone to talk to as well.

Follow Ups & Flu Shots

Yesterday was quite a busy day. I had a follow up clinic appointment at 11am and since I'm out of vacation days I worked from 5-9, so I was up quite early to get ready (I'll be spending the rest of the week working through lunch to make up the other 4 hours). We left town at 9 and made it to Seattle just in time to check in.

My appointment went pretty well. My lung functions are up 6% which makes me extremely happy and helps to make it feel like all of the extra treatments I do now are worth it. It's a huge relief to have my lung function be closer to 90% than to 80%!

My husband tried to get video of me doing my PFT, but the RT kept standing in his way. One of these days I'll be able to get a video so I can show you just how much fun blowing into a machine is. I didn't have to do much else at this appointment since it was just a follow up to see how the Pulmozyme is doing. Now I just have to wait for the results of my sputum culture to see if I grow Pseudomonas and have to repeat the treatment for that.

I also got my flu shot, so I'm going to add a little PSA here about how everyone should get a flu shot. You may not think you need it because you don't fit the stereotypical mold of being sick or elderly, but it helps protect everyone around you. I loved that last year we had them done at work, since I figured it would cause more people to get them instead of having to go on their own and therefore I would get sick less. Unfortunately they weren't offered this year, so I'm hoping it's a mild flu season.

After I was released, we treated ourselves to some lunch and shopping to make a day of it in the city. Got back to town in time to get dinner and catch up on The Walking Dead.
**We didn't get to watch it on Sunday night because we were busy watching the Sounders smash Dallas in their playoff game;)

Lungball

I know by now I've mentioned a couple of times that I've only ever been hospitalized once (I'm not counting surgeries, that's another post). Well let me tell you the story about that one time, cause it's a good one. It was about 9 years ago and probably the longest and scariest 10 days I've ever experienced...

My husband and I (not married at the time) were back in our hometown for our friends' wedding. I don't really remember feeling bad, but I was freezing and could not get warm. It was the middle of July in Wyoming so there's no reason I should have felt this way. I distinctly remember borrowing a hoodie from my sister and sitting on my parent's front porch in the sun for a long time and still not being able to feel warm. But we had things to do and people to see, so I went on with business as usual. The night of the rehearsal dinner I started noticing that I didn't feel well. When I'd take a breath it felt like my lung was going to pop. I tried going to the bathroom to see if maybe I just had a gas bubble, and my husband tried popping my back to see if something was just out of whack, but neither thing worked. As the pain intensified and I could barely take a breath in, I decided it was time to call the hospital and see what I should do. They told me that I could have a pneumothorax (air between lung and chest wall) and to go to the ER right away.

So scared, crying, and in pain I headed to the hospital. Luckily it was late at night and not very busy so I got in pretty quickly. I had x-rays done and blood drawn. The nurse that did my blood draw was more interested in flirting with my husband and ended up blowing a vein in my arm (thanks a lot lady). An ER doctor came in and told me that I had a cyst in my lung and I would need to be admitted. I panicked. I had no idea what a cyst in my lung could mean and I remember asking if it was something that they could fix. He kind of chuckled and said yes, like I was being over dramatic. Doctors just assume that when you have CF, you're used to things like this happening. I also was running a pretty high grade fever (hence the freezing) and my brain wasn't thinking super clearly.

I was checked into the hospital and had more tests done. Needless to say I missed the wedding and after two days in that hospital we decided that it would be better if I went back to Denver and saw my CF doctors. I won't even go into how horrible my experience at this hospital was, but if I'm ever back in my hometown and have an emergency, I'm screwed. I checked out AMA (against medical advice) and we started the journey back to Colorado.

The x-ray from after my lungball
had been popped. It was in my upper
left lung.

It turned out that the 'cyst' was really a MRSA infection abscess. The x-rays were actually kind of amusing, I wish I still had a copy. It looked like I had a rubber bouncy ball lodged in my lung, like the kind you find in the quarter machines at grocery stores (why we called it my lungball). I was outfitted with a PICC line (an IV line inserted into my upper arm that ran to just above my heart), since I would be on antibiotics for an extended period of time. They also had me start using the Vest (first time I'd ever heard of the jiggly vest) to try and pop the abscess so the antibiotics could reach it. This whole time my lung functions were above 100% and my O2 saturation was at 100%, the doctors found it very odd and I even had a medical student write a paper about me, neato!

Well nothing worked to burst my bubble, so they ended up having to do a chest tube to pop it manually. Not really an experience I wish to ever have again. Luckily it wasn't an emergency so I was under the influence of some heavy pain meds, which helped. After 10 days of total hospital stay I was going a little bit crazy and managed to cry my way out of there. Hospital stays are no fun. You barely get to sleep since someone comes to check on you every hour and draw blood. Side note: thank the heavens for PICC lines because then you don't have to get stuck every time they draw blood. The second night I was in the hospital in Wyoming I had to beg the phlebotomist to draw out of my other arm, because they kept using the same one and it was so raw and sore. She got super huffy about it because my IV was in the other arm so she had to have a nurse stop it. Cow.

Once I was released I had to go back every morning and evening to get my hard core IV antibiotics. This meant driving across the city of Denver (quite literally) and back twice a day and going to work in between IVs, the fact that I was totally okay with doing this is how much I wanted to get out of the hospital. Eventually I was placed on some lower dose antibiotics that my husband could administer from home. He had to learn how to flush out my PICC line and setup the IV. He was amazing through the whole thing, he slept at the hospital for several nights, but since we lived across the city and he had to work I talked him into sleeping at home and just coming by after work. Once the home IVs were done and all of my follow up tests came back clear I got my PICC line out, which was just a nurse saying "take a deep breath" and pulling 3-4 feet of IV tubing right out of my arm. Yep, that is as fun as it sounds.

I had a lot of firsts during this time that are old hat to most CFers, so it was quite a learning experience for me. It was all very scary and exhausting, but luckily I came out the other side of it okay, if a little bit (a lot bit) paranoid. I called into the CF clinic for every little twinge for a few months and probably drove the nurses a bit crazy. I haven't tested positive for MRSA since then which is fabulous. I really don't want a repeat of that experience again.

New Habits

How do you change 30+ years of habits (or lack thereof)? How do you deal when one day everything changes and you have to say to yourself “Ok, this is me now. This is my new reality.”?

I know I say this a lot, but I’m going to say it again. I’m really lucky with my CF. I know that I am and I can’t even express how deeply thankful I am for it. Most people with CF don’t get to live the essentially normal life that I’ve been able to lead up to this point. But right now I’m feeling like it is coming with it’s own set of drawbacks.

The Vest & nebulizer corner where I
spend time every morning & night.

If I had had to do chest therapy for my whole life I’d be used to it. It would be part of my daily routine that I wouldn’t think twice about. But now instead of coming home from a long day of work and crashing on the couch, I have to go put on my Vest and have my body pounded on for 30-45 minutes while I nebulize saline. Instead of hitting the snooze button a few times, I have to roll out of bed at the sound of an early alarm to do my nebulizer(s) and sinus rinse. Instead of doing whatever I want when I want, I have to make sure to plan around my treatments so I don’t miss any. Instead of taking days off when people come to town, I have to use half of my vacation days for doctor appointments.

Could things be worse? Yes, 100% they could. Do I feel grateful for the fact that I’m still relatively healthy? Yes, completely. But does that mean that I can’t grieve for the way of life that I’ve lost? I’m at the point where a lot of the novelty has worn off and I’m having to come to terms that this is how it will be forever. That more will be added down the road. I’m trying really hard to make all these new things a habit, but it’s hard. I’ll be the first to admit that I don’t have the greatest of will power. I have to lecture myself everyday about why I need to use the Vest. I’ve had my setbacks, missing a week or two by taking a day off and then repeatedly telling myself that I’ll start it back up again tomorrow. I’m having to learn that a life with CF means no days off from treatments and it’s a bit overwhelming.

I’ll make it through this period of change, I know I will, there just might be a little kicking and screaming along the way.

*My parents did have do chest percussion on me when I was a kid, but at one point the doctors said that we didn’t need to and even later in my life when I got the Vest it was a “do it when you feel like you need it” kind of thing, not a strict regimen.

Fitting In

I just got done attending the first BreatheCon, a virtual conference for adults with CF. It was quite
something to get to meet so many other people with CF and hear their stories!

I have to say that I didn't say too much in each session beyond introducing myself. As I listened to some of the other people talk, I felt that I shouldn't share my story too much. Yes I have CF and that gives me several things in common with them, but I don't feel comfortable trying to get someone that's in their 20s with a 30% lung function to commiserate with me about just now having to start a "typical" CF protocol.

Attending BreatheCon 2016

At one session the discussion came around to some of these new CF drugs (that I don't qualify for because of my mutations) and how they've kept people out of the hospital and off of IV antibiotics for a year. How can I possibly come in and say that I've only ever been hospitalized and on IV antibiotics once in my whole life without sounding like a smug asshole? So I didn't say anything and just nodded in appreciation of how great these new drugs are for cystic fibrosis.

CF is already very isolating, but when you don't fit the "mold" of a person with CF it can be even more so. I walk this weird line every day, I'm not healthy because I do have CF, but I'm not sick enough to really be a part of the CF community and I'm not sure how to deal with that and I've honestly struggled with it for my whole life. I was really hoping to meet some other people in the same situation, but either they weren't at the conference or I just didn't end up in any sessions with them.

So I'm left feeling a little disappointed, but at the same time a little inspired by some of these amazing people that deal with so much on a daily basis and take it all with such grace. I can only hope that when it does come time for me to go through some of this I can handle it half as well as they do.