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;)