Saturday, May 2, 2015

Guest Blogger- Anika

It has been a while since I have been able to say this so I am extra excited to introduce another mom-to-be with Cystic Fibrosis. Anika is 26 year old and author of the blog, Faux Islander. She is more than half way through her pregnancy at 24 weeks!
Everyone that has CF seems to have a very different experience. Share a little about your CF story or how CF effects you.

At six months of age I was diagnosed with cystic fibrosis as I was not gaining weight or thriving as normal babies should. Other than not being able to digest food without taking enzymes, the CF didn’t start to affect me, well my lungs in particular, until I was 22 years old. I started getting reoccurring chest infections and had to be hospitalized for the first time with IV antibiotics at 24 years of age. As my lungs have always been healthy, it’s a bit scary for me now as I get older to see them deteriorate so quickly but I am very diligent in exercising and doing my nebulizers which helps to keep them infection-free. Regardless of the hospital admissions and lower FEV’s, I am very blessed to be as healthy as I am with CF; it is something I do not take for granted.

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to ttc.

 Having kids and a family is something both my husband and I wanted, it was just the timing we were unsure of as we are newly married and didn’t know if we should work for a few years and then ttc or just go for it! In the end, we decided to just stop using protection and see what happened as I wasn’t even sure if pregnancy was possible for me due to my CF. It was definitely a surprise when, one month later, we found ourselves on the road to parenthood with a positive pregnancy test.  

What were some of your biggest fears regarding the pregnancy itself? So far have those fears been warranted?

Wondering how my lungs are going to cope is definitely the biggest fear I had, and still have with my pregnancy. I wasn’t sure if getting pregnant would cause my lungs to deteriorate faster and thus leave me worse off afterwards but the doctors and my CF team have told me there is no evidence to believe that getting pregnant takes years off your life in regards to the strain it puts on the lungs etc. I found this very reassuring and was thankful they addressed that fear because my lungs have suffered more infections during pregnancy than what is normal for me and it is easier to cope knowing that exacerbations during pregnancy are normal and will (hopefully) only be temporary. I am 24 weeks and have had IV antibiotics twice as, both times, I got sick with a normal cold and couldn’t get the infections cleared solely with oral antibiotics. I am very diligent in exercising and doing my nebulizer (hypertonic saline) with the hopes that I can prevent more exacerbations, or at least extend the times between them.

How has your pregnancy gone so far? What have been some of the biggest challenges in your pregnancy so far?

The biggest challenge for me has been trying to avoid getting sick. Ironically, the actual pregnancy itself has been such a pleasant experience; I’ve had no morning sickness, no nausea, no heartburn, and no food cravings or aversions. Sure I slept a bit more in the first trimester and I have the occasional ligament pain as the uterus expands but from some of the stories my friends have told me of their pregnancy experiences, I know mine has been a cake walk in comparison.

How do you feel your pregnancy is different that a non-cf pregnancy?

 I think the biggest difference (as best as I can theorize) is that moms without CF don’t have to worry as much about their own health; their stress and anxiety is aimed mostly towards the well-being of baby where as a mom with CF is hyper-aware of every little difference she feels in her lungs (or body in general) as it is hard to know if it’s just a normal pregnancy symptom or a CF symptom which needs to be dealt with.

What are your doctors doing in order to ensure your pregnancy is healthy (more doctor appts, change meds, etc)?

 Anticipating my need for more frequent IV antibiotics, my CF doctor inserted a PICC line in my left arm which will stay in until after I deliver as it allows for quick and easy administration of the meds. Having the PICC has actually been such a blessing by taking away a lot of my stress because I know that if the need arises for IV antibiotics, I can basically get them started instantly which is vital to managing lung infections; the sooner the treatment is started the better the results.

What are some of your concerns about mothering and CF?

Initially, I am quite concerned about the first few months of motherhood as the needs of the baby are in high demand which means little sleep for me and, inevitably, result in a weaker immune system to fight off colds. Once the baby sleeps through the night I am anticipating and hoping things will then stabilize and I can just carry on carrying on.
I do think about the future and the scary thought of leaving behind a young family if I die earlier than later but not doing things in life (like not having kids) because of fear or because of my CF is not the way my husband and I have chosen to live our lives. No one can know what the future will bring, so just be thankful for every day the Lord gives you…… and live!  

If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?

 I would say, don’t lose heart or get swallowed up with fear if you are constantly finding yourself fighting off chest infections; frequent exacerbations are normal as making a baby puts huge demands on the body causing even perfectly healthy women to suffer more. Also, try and make sure you have supportive people in your life to encourage you and help you. My husband has done an absolutely amazing job at calming my fears and remaining positive when I hit some of those lows; he is my constant companion and helps out in any way he can. My family has also been a huge support and I am comforted to know they are here to help once when the baby finally arrives.
Pregnancy is hard on the body so take the time to care for yourself, whatever that may be.  


Wednesday, April 29, 2015

Two Months Since Zosyn

It has been two full months since I had my port deaccessed and stopped IV antibiotics. Two full months of feeling like myself. Two full fever free, ache free, sick free months. The people at the gym know me by name and the pool feels a little like my second home. This is the longest I have felt "normal (like CFers ever feel normal) in a really long time. I know better than to get my hopes up, but for now I am enjoying the old me once again!

Wednesday, April 22, 2015

Toddler Talk Part 6

Language development has been by far my absolute favorite part of watching my daughter grow up. The most fascinating and comical aspect of language development of an almost three year old is how one moment she can use words that seem far beyond her years only to completely botch the very next word that comes out of her mouth. So despite the correct use of words like disgusted, delightful, and homesick she also says the following not so correct sentences/words on a regular basis:

1. "Yummy to my chum chum chummy!"

2. She calls an oven mit a "hand bra"

2. Wrinkly fingers from the bath she calls "crumbly fingers"

3. Excuse me is said, "scoo scream"

4. Whenever she cries and her eyes are full of tears she calls them "blubbly" (like bubble with an extra l)

5. When I got home from the hospital, but was still on IVs we watched the Daniel Tiger where his mom is sick a lot. In the episode Daniel Tiger sings a song, "when you are sick rest is best." Kaylee still loves to sing, "When you're sick rest is rest" which seems a little redundant, but who am I to judge?

Wednesday, April 15, 2015

Allergic To Life

As a teen my dad would always bring me to my CF appointments with a pen and notebook in hand. He would scribble everything the doctor said and keep track of all my stats from the appointment in that notebook much to my horror. "Dad, you don't need to take notes. This isn't school," I would plead, but my scientist father paid no mind to me and kept those books until I started going to appointments alone. And although the notebook was not my style I learned the value of keeping track of my health and trends over the years. So I started a calendar (visual learner much?) and kept track of my PFTs, O2, clinic appointments, and took careful notes of everything important that took place during my appointments on the calendar.

So when April rolled around, only 6 weeks after IVs, and my lungs felt like they completely closed shop leaving me gasping for air I turned to my 2014 calendar. I was wondering how I felt last April when I was only a few months out of the hospital. Sure enough April was my worst month last year. I wrote that although I didn't FEEL sick I was tight! So tight that my lung function plummeted and I was using my inhaler up to seven times a day. There were nights I woke as if I were suffocating and puffed my inhaler until I felt well enough to sleep again.

Exactly a year later the symptoms were the same! I felt so tight my inhaler was glued to my side and I found myself gasping for air as if I were drowning at the smallest of tasks, but besides being short of breath I didn't feel that bad. After April my health improved a lot which led me to believe allergies may have been the culprit. I went out and bought a new allergy pill (to add to my year round Singulair) and within 24 hours I felt a huge improvement. My 7 puffs of Combiovesnt a day was reduced to three or four and my PFTs continued to climb over the next few days. I am still not at baseline, but I am significantly higher than I was before switching allergy pills. It also confirmed that even though my 14 year old self was ashamed of my nerdy dad taking notes as if he were in a lecture hall rather than a tiny clinic room he really knew what he was doing. Sometimes you have to admit that your parents really were right all along!

Sunday, April 12, 2015

Quality Control

I got my first vest at the age of 14. That obnoxiously large Vest shook my chest walls throughout my teens and followed me to multiple dorm rooms, apartments, and even saw the first few years of my marriage. At 28 I finally got an upgraded Vest, not because it was broken (although the timer no longer worked and the peddle sometimes needed a little encouragement to get the thing to start), but because my insurance finally approved it. The new Vest came when I was heavily pregnant, but even with a Vest that couldn't be fully snapped, I was delighted with the much smaller, lighter and programmable Vest.

And then within two years it broke. Just stopped working. So I got a new one. This time with locking hoses (!!!) so that less time was spent popping tubing back into the machine. Although the tubes did wiggle their way out of the machine from time to time I was still excited to get an upgraded version that would make my Vesting experience more enjoyable... enjoyable as sitting in a Vest that violently shakes your chest for 30 minutes can be.

And then with only 200 hours clocked on the machine the new and improved locking hose broke. A little over 6 months and the tube is completely useless. As I wrote "call the Vest company" on my Monday to-do list I couldn't help but think about the old, loud, HEAVY vest that lasted 14 years without a problem which seems to be 12-13 years longer than I can get the newer model to last!

Tuesday, March 24, 2015

Bulk Up Coffee Lovers Recipe

There is this new fad among coffee drinkers. I heard about it several months ago when my dietitian told me about this buttered coffee fad. Another patient had mentioned it to her and she proceeded to mention it to me. Just as I was intrigued but ultimately confused, so was my dietitian. She wasn't sure the recipe or how it even worked, but she knew you blended butter into your coffee. Yes, you read that correctly, butter in coffee! You can imagine why we were both a little confused.

Now the recipe I am sharing is not this buttered coffee, but you can find it on many food blogs including Pioneer Woman's blog under crazy coffee. I tried it myself because butter, oil, coffee and a blender is something I just couldn't NOT try because it is just so weird. My first sip all I could muster was a perplexed, "huh?" As I sipped the last few drops in my mug I was still a little confused by what I was tasting. I still wasn't sure I liked it, but I didn't dislike it. So here is my own new and improved version of this butter-free buttered coffee:

Bulk Up Coffee
8oz fresh brewed coffee
2 T Coconut Oil
2T Half and Half
Put all ingredients and any sweetener you may use in a blender (or if your blender is broken like mine a food processor works, too. Hey, sometimes you have to get creative)
Blend till coffee looks frothy.
*If you like your coffee HOT then you may need to stick it in the microwave for a few seconds.
**Coconut oil will solidify when cold so putting this coffee over ice isn't an option.

The best part?
Total fat: 34g fat
Total Calories: 200
Add that to your regular high fat/high cal breakfast and your are starting your day off right!

Sunday, March 22, 2015

Toddler Talk Part 5

K got in a fake fight with her rear end the other day. Her rear really wanted a turn painting, but she kept insisting that only people paint and behinds can not. The fight went on for several minutes where they were arguing back and forth. Eventually, K won the fight against her rear end and he..err..she... err, the rear end never got a chance to paint.

Along the lines of talking body, after telling her she needed to listen to her body referring to when she is full or needing to go potty she decided to take it somewhat literally. She now makes her tummy talk on a regular basis and then responds to their needs.
"Mom, my tummy is hungry." Using a high pitched voice as her tummy, "I really need a snack. I am so hungry." Or "My tummy is so thirsty it needs water."
Her other body parts talk too which makes for a lot of high pitched squeaky voices in our house since apparently all her body parts have the same high pitched voice. Recently her brain started talking too.

I called K a wild woman because she was wildly dancing around the living room. She stopped and laughed saying, "MOMMY! I am not a woman I am a girl. DADDY is a woman!" (She also calls me "daddy's husband" She gets really confused about these labels).

Kaylee was coloring with her favorite marker, green, for an unusually long amount of time. I went to check on her and noticed her mouth was green.
Me "Kay, why is your mouth green?"
K: nonchalantly, "Oh, I just tasted my marker"
Me "Kay, markers are not for eating"
K: Annoyed I would be dumb enough to think she tried to eat a marker, "I didn't eat it. I just sucked it a little"

One of Kaylee's friends just became a big brother. It was the first set of friends who became a big sibling (many followed immediately after). After a playdate with her friend Hayden and baby sister, Lila, Kaylee was beyond confused about the family dynamics. She just couldn't comprehend how there could be two children in a family. She finally decided her 2.5 year old friend must have been Brittney's (the mother's) husband and Lila was the child. As much as I tried to explain otherwise she wouldn't have it any other way.