Thursday, February 28, 2013

My Skin Vs PICC

**WARNING: Graphic photos of a skin reaction below. Do not scroll down if you are in the middle of eating***

In a battle between my skin and my PICC line my PICC wins hands down. It is funny actually since my skin isn't particular sensitive to anything else. I have never had a sensitivity to creams or lotions or detergent, but I apparently am very sensitive to adhesives. So after trying a new adhesive that is specially made for people with allergies to adhesive, I still got a reaction.

I have had my PICC two weeks now and we only had the adhesive on my skin for a few days before I started reacting. In order to try to let my skin heal we wrapped my arm in gauze for about a week. The problem was my skin was weeping through the gauze. Because of the excessive weeping we are trying duoderm (which is like fake skin) and then putting the tegaderm (tape) on the duoderm so it is still protecting my PICC, but not touching my skin. Here are the results:

Duoderm is brown, but as you can see it looks pretty white in this picture. This is because it absorbs the liquid weeping from my skin and traps it. When it is full of liquid it turns white. The "skin" by my PICC is not my actual skin, its duoderm, but my skin underneath is covered in blisters and is as red as my upper arm. My skin is beyond irritated and the weeping is getting excessive- through gauze changed up to 5 times a day, through clothing, I even woke up to the weeping dripping down my armpit last night.

At this point I am not sure what to do. My skin isn't getting better and is pretty painful and I don't think it will improve until I pull the PICC, but my lung function isn't where I want it to be. At this point I am considering pulling the PICC Monday and if my lungs are still bad trying for another in the other arm or waiting for my skin to heal more and trying again.

Tuesday, February 26, 2013

Bad News All Around

I went to clinic yesterday after 10 days of IVs and I sort of wish I didn't bother to go because it was one huge disappointment. My weight is down to 118lbs. At 5'4" this isn't horrendous, but for me it is pretty bad. I usually weight 125lbs so the drop was pretty significant. I will admit that several days went by while I was sick in bed that I didn't eat anything. At all. So I knew my weight would be low, but I still hate seeing any numbers below 120.

My PFTs are down by 7% which is pretty bad after 10 days of IVs and because I don't feel like at this point I have a lot to spare. I never got my PFTs done while in the middle of the flu, but I am curious what they would have been...I have a feeling I would have been horrified if I had seen those numbers. I was pretty terrified that my doc would come in and admit me to the hospital since everything looked so grim. When he came in he asked me how things were going. I explained that I was sick in bed for 2 weeks straight (which he knew). That I hadn't been eating, exercising (not even walking because I had no energy), and felt as if my lungs were full to the brim, BUT after 10 days of IVs my mucus was getting lighter and it was getting much easier to clear out. I also told him that I knew my body wasn't ready to stop IVs based both on my numbers and how I felt. He said that swimming prior to getting the flu probably helped me more than I can know even though I feel disappointed with my numbers and slow recovery. He wants me back to exercising as soon as I can. We decided to do one more week of IVs and then we will reassess. So no hospital admission for me yet which was a huge relief.

I feel a lot of pressure to get my PFTs as high as I can in the next 6 days because I am terrified of what will happen if I don't. I know very little of my recovery is in my control at this point which makes it much harder to deal with. I am doing all my treatments, doing all my meds, and even have IVs so there seems to be very little more I can add on to my daily health care. I feel this intense pressure to do better, get healthier, raise my PFTs, but I also feel like I have no idea how. I need to find something I can do to feel like I can control. I have decided to gain weight since this is somewhat in my control. I know my lung function is always higher when my weight is good. I am also going to try to exercise as much as my low energy will let me. The weather should be beautiful this week, in the high 70's, so I am thinking I can manage a walk everyday for the next 6 days. I find this disease can make you feel defeated very easily. I think back to 3 weeks ago when I swam a mile with ease and came home to take an hour walk with my daughter. Now the thought of walking up the stairs is overwhelming. It is amazing how quickly life can change. I just hope that things can return to how they were 3 weeks ago.

**EDIT: I should add that my flu symptoms are pretty much gone. I no longer get fevers and I actually get up and get dressed and I even managed to put on makeup yesterday. So I guess it is not bad news all around, just bad news mostly around**

Sunday, February 24, 2013

Never Get A PICC From A Resident

With this flu I decided to get a PICC line since I knew my lungs would not be able to handle this extreme sickness without some help. The PICC has turned into a disaster all its own, but that is for a future post. A few PICC lines ago the PICC nurses gave up on me. My veins are shot and are impossible to work with. I became radiology's problem territory. This was actually a nice change. Instead of spending an insane amount of time fishing in my veins, puncturing my arm a dozen times and leaving me black and blue, radiology would use their fancy machines and the PICC would be placed on the first attempt every time. Except this time because this time I had a resident place my PICC.

Here is what took place during ym PICC placement. I was also feeling like crap, feverish, sleepy, and didn't have much of a voice left.

I am all prepped and ready to go when this very young woman comes in and explains she is a resident and will be helping with my PICC placement. I am cool with a helper...

"I am going to ultrasound your arm now."
"Okay." Where the heck is the real radiologist
A substantial amount of time passes. The real radiologist comes in.
"Dr, I found 3 veins, which one do I use?"
What the heck? You don't know? Shouldn't you at least say, I found one I think would be perfect can you double check? But instead you make it clear you have no idea which to use!!
"Did you try compressing them?"
She quickly starts compressing my veins. They exchange a few words and I am just praying that she lets the real radiologist do his job. The radiologist leaves and I am alone with the resident. Or maybe he was across the room...I was strapped to a bed so it was hard to tell, but all I know is he was nowhere near me.
"Okay, I am going to numb your arm now."
Holy crap! Holy crap! This lady is going to do my PICC?? How do I tell her to get the hell away from me without offending her.
"Soooo, how many PICCS have you placed?"
"Uhhh, several."
Wait just one minute! First off, why the hesitation??? Second, the way you said several I would assume you meant more than a few. I am now assuming this is your 3rd or 4th PICC placement. I am actually more nervous now than before you opened your mouth!
"Um, I would feel much more comfortable with the overseeing radiologist doing my PICC." You can request things like that, right? Well, I am going to try.
"Yeah, well I haven't even put the needle in your arm yet!" I am not an idiot, I know you haven't done anything yet...this isn't my first PICC and I know what a needle feels like.
"I understand that, but I am requesting the radiologist put my PICC in."
"You can't. He will put it in if I fail." If you fail? This is getting worse and worse.
"I am sure you are capable, but I..." crap what do I say to not offend her...."am nervous" that you don't know what the hell you are doing!!!
"You need to try your hardest not to be nervous because the more nervous patients are the more nervous the doctors are."
Are you kidding me!? Did you just admit to being nervous!? And I think most people would be nervous when getting a PICC by someone who doesn't even know what vein to use!
I decided to relax and let her try. I was numb after all and I realized she is not going to give in and I was completely alone so it wasn't like someone could save me.
I can feel her accessing a vein (not painful)....
A looooong time elapses.
"Can you keep me informed on what is going on?" I like being in the know because it helps keep me calm.
Much more time elapses.
"Did you get the PICC threaded?" I am sure I was annoying the crap out of her, but it had been a very very long time and even though I rarely get nervous for PICCs anymore it had been so long I was starting to get worried.
"No, I am ultrasounding your arm again."
"Oh. Okay, can you let me know what is going on. It helps me feel less nervous."
Silence. In fact, she never spoke to me again.
The radiologist comes in and says, "How is it going?"
"The vein I attempted wasn't any good."
He then stands there and walks her through step by step. She has stuck the needle in, but is having a lot of trouble. The radiologist finally yells for someone to get him a gown.
Thank God this lady is getting away from me!!!
She screams, "I GOT BLOOD!!!!!!
Is that good or bad?? Am I going to die!??
"I am in, I am in!!!"
Okay, I guess it is a good thing.
The radiologist then walks her through the entire process and often has to intervene because she wasn't doing it right. Finally, he looks at me and says, "You can relax! We are done!"
I think I wanna throw up I am so happy.
One of the nurses comes over and looks at my PICC and says to the resident, "Did you do that yourself? Great job!"
"Well, not really, I had help." That was an understatement.

Well, I lived and she didn't puncture my heart or forget to wear gloves or sneeze on my line so I guess all is well, but next time I sure hope that they send the resident to someone else's room. Or at least I hope that my next resident pretends to know what they are doing, or has a personality, or actually knows which vein to access.

Wednesday, February 20, 2013

Beauty In Sickness

14 days of sickness. 14 days of fevers that left me shivering and useless in bed. 14 days of coughing until I saw little stars dancing around my eyelids. 14 days of an insatiable need for sleep. So many times during these past 14 days I have longed for them to disappear. I found myself thinking, I wish it were next week when this sickness will be behind me. When I can feel more myself than I feel now. But as I was wishing away the days my little girl was growing older. Her beautiful blonde hair was filling in almost daily, getting thicker and longer. She started sitting on her knees or squatting which I hadn't noticed before. Even her eyes seemed to be changing to a new shade of blue.

I realized that these precious days with my 8 month old, despite being filled with sickness, were fleeting and beautiful. And I have found beauty in my sickness.

There was beauty in the days I couldn't get out of bed and my husband would crack open the bedroom door letting light fill my darkened room. He would set Kaylee in the bed where she would quickly crawl to me, cold hands and feet finding their way against my skin. Her warm mouth searching for her source of nourishment. She would drink until she was drowsy and we would drift off into sleep together. There was beauty in the day that Kaylee sat completely still in my arms watching the birds dance wildly in the raindrops, her eyes fixated on their every move. There was beauty in the morning that neither of us felt like crawling out from the warm covers and she layed next to me, latched on, but not drinking looking around the room lost in thought. There was beauty when I sat in the corner of the living room unable to get up and move around the house, and my silly little girl made goofy faces and funny noises until we were both laughing.

Not everyday is perfect, in fact the last 14 have been as far from perfect as I can imagine, and yet, there is beauty in everyday. There is even beauty in sickness.

Wednesday, February 13, 2013

The Flu Has Hit Home

I think I caught death in a cold or the flu...something like that. And you know what? I don't so much mind the crazy nonstop fevers, chills, obscene amounts of mucus everywhere, the lack of energy, the lack of appetite, the fact that every muscle in my entire body is sore from coughing. Okay, I actually do mind, but it isn't nearly as bad as how much I miss being a mommy.

I miss waking before the sun and quietly sneaking out of the room as to avoid waking the hubby. I miss padding across the carpet to Kaylee's bedroom, picking out her outfit and getting her ready for the day. I miss our morning breakfast where she tells me all about her night as I prepare things for both of us to eat. I miss the way she bounces up and down in her high chair when she sees the food is ready. I love the way she chats at the breakfast table as if she knows that at mealtime that is what you are supposed to do, chat. I miss her contagious happy morning energy. I miss letting her play while i clean up breakfast. I miss that when she gets lonely she comes crawling back into the kitchen saying, "mama mama mama" until I scoop her in my arms. I miss playing on the floor with her and laughing. Oh, I miss the laughing.

Instead I am cooped up in bed, coughing, sleeping, struggling, coughing. I am listening from my half awake half asleep state to my husband getting breakfast ready, the breakfast K and I are supposed to eat together. I hear her telling him about her night, the stories she should be telling me. And I hear them laughing. I hear them laughing and I am crying. 5 days is too long away from being a mom. 5 days is 5 days too long.

Tuesday, February 12, 2013

8 Months

Dear P,
You are 8 months old today. You have grown in leaps and bounds in the past few months and you continue to amaze me all the time. You are a champion speed crawler, standing by yourself (!), happily eating everything you can get your little hands on (including little pieces of dirt you find on the floor), and you got your second tooth! Your personality is coming out more each day and your Papi and I think you won the jackpot on personality.

Things You Like:
You have a fake laugh now. If we are being silly with you, but we aren't funny enough to elicit a real laugh you have this very fake laugh you'll give us as if to say you appreciate the effort. It is pretty darn cute. You are very very playful! You love when we play peek-a-boo around any corner and your Papi plays it with you so often that whenever he leaves the room you watch and wait to see if he peeks back in. You think life is a constant game of peek-a-boo. You know what you like! If we are doing something fun with you and you don't want to stop you are sure to let us know. For example, your Papi puts you on his shoulders and bounces around the house. You absolutely love it! When he stops to catch his breath you bounce wildly on his shoulders as if to say, "Again! Again!"

Things You Dislike: You know what you want and sometimes I think you are too smart for your own good. This leads to some frustration on your part and so we have seen a few mini temper tantrums this past month. Yikes, we may be in trouble! If we take something away from you that you had no desire to part with you  complain loudly while slapping the ground. It is pretty funny actually, but I doubt it will be funny when you are two and doing it in public.

What I like About This Age:
Oh little one, you can make us laugh so hard. You know when you are funny too because you make this goofy scrunched up face and show off your teeth when you do something goofy. You also show us how much you love us now. You will be crawling around exploring your ever expanding world and all of the sudden you will stop, crawl over to me or Papi and lay your head on us for a moment and then venture back into the world again. You also like to give us kisses when we least expect it, an open slobbery mouth against our cheek, leaving a mark of baby drool sliding down our skin. Oh, those baby hugs and kisses are one of the few things in life that are complete perfection.

Thursday, February 7, 2013

Sometimes Things Work Themselves Out

I had a good friend in college that moved across the country about a year after we graduated. He comes back once a year to visit family and friends with his son. This past weekend was his one time a year visit. I was supposed to get together with him Monday, but he was unsure as to what time.

As life sometimes gets in the way of plans ,Monday morning my husband's car was having trouble so we drove to the dealer and sat and waited and waited and waited. During this waiting I realized I forgot my phone. At home there was a message, "Can we meet at 3" sitting unchecked on my cell. 3, of course, is naptime. We returned home late without my husband's car. My husband had to take my car to work and I tried to figure out how to see my friend despite the fact that I was completely stranded. We couldn't coordinate it. It just wasn't in the cards and I was disappointing that I would not see my friend for yet another year.

The next day I see he posted on Facebook that he feels bad for anyone who has to sit next to his son because he has an awful hacking cough. Interesting that so many things made it impossible for us to see each other and yet, it actually worked out perfectly!

Wednesday, February 6, 2013

Vent Mama, Vent

As mothers we often are afraid to talk about the hard times with other mothers. Maybe we think if we complain other mothers will think we don't love our children with all our hearts and souls. Maybe they will think we are ungrateful for our precious children. Maybe we worry they will think we obviously can't handle motherhood. But in all reality ALL mothers have moments, hours, or even days where being a mom is tough so why can't we openly talk about the hard times?

I was so beyond lucky to have my best friend of 16 years experience pregnancy and motherhood at the same time as me. She has given so much to me in the past 16 years that I could never repay her, but the best gift of all was her willingness to show me all her feeling of motherhood both good and bad.

From the moment her baby was born (2 months before K) she texted me almost daily. Sometimes the texts went something like this:
Motherhood is so amazing. I can't wait for your baby to be born so you can experience this intense, all consuming love. It is pure magic.
While other messages went like this:
OMG! Baby will NOT stop crying and I think I am losing my mind!!

I didn't realize at the time what an amazing gift this was until one day a I could NOT get Kaylee to fall asleep for the night despite the fact that she was already overtired. I was so beyond frustrated and the frustration continued to grow until I started to feel as if I might just burst into tears. I picked up my phone and texted
Going on TWO HOURS of trying to get K to sleep. REALLY!? REALLY!? Losing my mind.

She knew exactly what to say. She had been there many times and knew the feelings I felt without me needing to elaborate. She knew my thoughts, my frustration, my feelings of failure. She just knew! And instantly my crazy frustration melted away knowing other mothers out there had nights like that too.

Recently, I had a good friend who seemed to make motherhood look easy as pie come over for one of our regular visits. I have been a mother long enough to know all mothers have hard days so I decided to let her in on my texting secret. I explained what I had going with my BFF and how much it helped to vent to a mom who just knows! I told her if she ever gets to the point that she feels like the frustration is building up too much to text. The very next day she she sent me a text venting about a little boy you was super fussy and was refusing to sleep. She was exhausted and was at her wits end. I had to smile when I got the text because I knew exactly what she was feeling. Yes, even a mom who seems to have it all put together has hard moments and needs someone who just gets it. And that is the thing, there is nothing we can really do for one another in the moment except commiserate. The great thing is that alone is enough. Because that mother on the other end of the text knows those feelings and knows that frustration. They have been there many times and will be there again. It is nice to know that not only are you not alone, but it is part of the job description.

Tuesday, February 5, 2013

Guest Blogger- Jenny

I am thrilled to introduce my next CF mommy guest blogger, Jenny, from My Life as a Livingston. Jenny is 25 years old and has an adorable 3 1/2 year old daughter named Morgan. I love visiting Jenny's blog as she can always make me laugh Behind all her humor she is always honest which in a world full of "fake" bloggers her blog is a breath of fresh air. As a bonus her little girl, Morgan, is beyond squeezable!

Everyone that has CF seems to have a very different experience. Share a little bit about your CF story or how CF effects you.
I was diagnosed at birth after having two older sisters born with cystic fibrosis (I also have two brothers, both CF-free). My oldest sister, Shannan, passed away when she was just 14 years old. Obviously because of that I knew how ugly this disease can be, but it wasn't until I was a little older that I really realized what having CF would mean for my life. 

Growing up, I was pretty healthy. I had CF related sinus and digestive issues, but I usually felt pretty good and I could definitely keep up with the neighborhood kids. My sister, Teresa, and I would go into the hospital about once a year for a scheduled "clean-out" but other than that, CF played a fairly small role in my life throughout my childhood and early adulthood.  

The first time I really started struggling with CF was after I had Morgan, my daughter. When she was three months old, I experienced my worst exacerbation and most serious decline in lung function to date, and really, things have never been the same since then. Now I feel like I'm playing in an entirely different ball game. During the past three years my health has become increasingly harder to manage. My lung function is significantly lower than it was pre-pregnancy (about 25-30% lower) and about every three or four months, I'm admitted for another exacerbation. Treatments that used to be optional or that I only did when I was sick are now an everyday necessity. Long gone are my days of ignorance and denial. CF is definitely a big part of my life these days and like it or not, it's here to stay. 

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to try to conceive.
I always knew I wanted to have a child, and deep down I always felt that I'd be able to. As I got older and my health care providers began talking about the potential risks and challenges associated with CF pregnancy, I never really took it to heart. Because my health had been so good up to that point, we actually never considered NOT trying to have a baby. 

 TTC can be a difficult journey for many CF women, how was the ttc journey for you?
Adam and I had been together for about three and a half years (actively trying to conceive for about a year of that time) when I got pregnant. Though we sometimes got frustrated and discouraged, we never sought fertility treatments and eventually things just happened naturally. We both feel very fortunate that this was the case. 

Tell me a little bit about CF and your pregnancy with Morgan. What were the biggest challenges caused by CF in your pregnancy?
My pregnancy was quite a roller coaster, but not necessarily due to CF. I had unexplained bleeding for almost the entire duration of my pregnancy. I was on pelvic rest for my entire first trimester, then off and on for the rest of my pregnancy. When I was 19 weeks pregnant I was getting ready for work one morning when I felt a sudden gush of fluid running down my legs. My first thought was that I was experiencing that delightful "urinary incontinence" I'd heard so much about, but when I looked down, I discovered that the warm fluid was actually blood. I bled so heavily that my socks were literally soaked. 

Ultimately, I went on to carry full-term and deliver a healthy baby, but it was quite an adventure getting there. Looking back, I think the only issue I had during pregnancy that could be directly related to CF was the difficulty I had in gaining weight. Even with a good appetite and increased calorie intake, I only gained about 17 lbs throughout my whole pregnancy. 

I know you do a great job retelling Morgan's birth in your blog. I remember reading it before I had Kaylee. Tell us a little bit about the birth. Did CF play a role in the delivery? How was recovery in terms of pain management when coughing and doing treatments?

I was induced at 40 weeks and 4 days. Which, for those of you counting (I know I sure was!) put me four days past my due date - something I was told from the very beginning would NOT happen! If anything, my doctors expected me to deliver early (perhaps too early) and if that wasn't the case, there was talk of inducing me around 37 weeks to relieve the pressure that Baby was putting on my lungs. But as my due date neared, I had one doctor in particular who became very adamant about holding off on the induction. She was afraid that if I was induced before my body was ready, I'd end up having a C-section and she felt that, for many reasons, a natural delivery would be easier for my body. Looking back, I'm glad she was so firm and I believe her decision was very wise. When I finally was induced, my body responded well and I had a safe and (relatively) easy vaginal delivery. 

The pain from delivery was pretty rough at first (episiotomy, anyone?) but after just a few days I was feeling much better. From that point on, I had very little pain or discomfort when coughing or doing treatments. I can only imagine how much more difficult it would have been if I'd had a C-section. I'll say it again: my doctor was a very wise woman! 

 Adjusting to a new baby is a challenge for any mother. Add treatments to the mix and it can be chaotic. What advice would you give to a brand new mother with CF?

This is something I really struggled with. I was a brand new mom, I was breastfeeding, I went back to work full-time when Morgan was 6 weeks old, and I was expected to fit treatments into the mix somehow? It was a challenge to be sure! I would always try to justify not doing my treatments by telling myself that sleep was just as important for my health, or that feeding the baby was a bigger priority. There was always something else that needed to be done and unfortunately that meant my health got put on the back burner sometimes. 

But then I got sick. REALLY sick! And when I was lying in an ICU hospital bed seriously wondering whether or not I'd wake up the next morning, I realized something needed to change. 

When I returned home, I began making myself do treatments... whether or not I felt like I had the time or energy, and even if it meant leaving the baby in her bouncer crying for an extra ten minutes or so while I finished up my treatment. I had to re-prioritize and make treatments much higher on the list. I told myself that, yes, all the other things I had to dowere important (and they truly were, it wasn't as if I was just slacking for no reason; being a mom is hard work!) but my treatments were absolutely vital in order for me to be alive to get all that other stuff done. It'd sure be hard to nurse the baby if I were dead, huh? And who would change her diaper if I wasn't around? 

Tough love? Definitely. Morbid? A little. But it worked for me! That's not to say I never missed a treatment again, because I did (and still do sometimes). But I found myself doing them a lot more frequently when I started thinking of them as "necessary" instead of "optional". 

Was your health permanently affected by the pregnancy and motherhood? If so, how? If not, how did you ensure your health returned to your pre-pregnancy status?

This one is a little more difficult for me to answer. Yes, my health has changed since having Morgan, but I don't blame just pregnancy (or motherhood). 

As I've already mentioned, I wasn't 100% compliant after giving birth. I was honestly trying, but it was very difficult for me to juggle everything and unfortunately, my treatments were usually the ball that got dropped. Also, going back to work so soon after giving birth was very hard for me. I wish I'd had a longer maternity leave or that I could have just gone back part-time, but circumstances being what they were, I did what I felt I had to at the time. And to top it all off, my doctors and I are pretty sure I caught swine flu (all of this was going on during that wonderful 2009 epidemic). All of these things were factors that contributed to me getting so sick shortly after having Morgan, and I think THAT is what I've had a hard time recovering from, not necessarily motherhood itself. 

How do you manage your health now that Morgan is a little older?
Well, the good news is that it get's easier. Now that Morgan is three, she is easily entertained by the TV, a book, or an art project while I do treatments. She also loves to exercise with me. This makes taking care of myself a much easier task! 

How do you explain your CF to your daughter?
It's only been recently that Morgan has begun questioning things. I think she's finally beginning to realize that not everyone wears a silly jiggly vest and not everyone takes a handful of pills everyday or spends so much time in the hospital. I've explained to her how the things I do at home help me stay healthy, but sometimes I get sick and need my doctors to help me feel better. She obviously doesn't understand what CF is, but she does realize there is something different about me and often calls me her "special" Mama. 

I've thought a lot about how I want to approach this subject as she gets older. The best I can come up with is to let her ask questions as she has them, and then try to answer those questions as openly and honestly as possible. I never want to hide my CF from her and I want her to understand all that it entails, even the ugly parts. But I think it's important to do so when the time is right and she is old enough to handle that information. I just pray I'll recognize the time when it comes.  

If you could give advice to a CF women who is ttc or is pregnant what would you tell them?
                  I think my advice to other women on this journey would be pretty much the same, regardless of                       whether or not they have CF. That advice would be first to trust yourself, trust your instincts, and trust your body. You know better than anyone else what your body and soul are capable of. Don't let anyone say you can't do something if you know in your heart you can, or that it's at least worth a shot. A mother's intuition begins before long a woman "technically" becomes a mom. 

Second, educate yourself and know that there are ALWAYS options. I think it's easy to become intimidated throughout this whole process and when that happens, I think we sometimes let others make our decisions for us. I often hear of women who agree to be induced early simply because they have CF, or who are told over and over that they won't be able to breastfeed/carry full-term/have a natural delivery, etc. simply because they have CF. The truth of the matter is that there are so many options for us and we are strong women who are capable of almost anything! While it is true that having CF can make it harder for a woman to do certain things or may put her at higher risk in some situations, there is NO hard and fast rule that we CAN'T do these things. Often it's just a matter of being educated and making a wise decision based on our individual circumstances. 

And finally, have fun! Cherish every single moment. And don't blink, not even for a second, because one day you'll wake up and realize that your sweet little newborn has suddenly turned into a wild and crazy three year old. The time goes too fast... but there's so much fun to be had along the way! 

To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)

Monday, February 4, 2013

Exercise Update

I am trying really hard to get my lungs back into shape. My goal is to get my PFTs up 6% so that I can be back to my pre-pregnancy numbers. A few weeks ago I said that I was going to work on being more active. When making big life changes I usually have to take baby steps. I knew that if I started working out 5 days a week I would burn out quickly. I also wanted to be careful not to lose weight because I don't want to hurt my milk supply so I added exercise slowly. I started with swimming one day a week (Thursday). Once that became a routine I added walking at least 5 days a week for 40-60 minutes. It also helped that the weather has been in the high 60s low 70s this past week. Once swimming once a week and walking became habit I added a Sunday swim. My next goal is to start jogging 2 days a week instead of walking since I have a jogging stroller.

I would love to add another swimming day, but at this point I can't figure out how I would work another day in with my husband's work schedule. For now I am just happy that I am actually working out again. I figure swimming 2x/week, jogging 2x/week and walking 3x/week should improve my lung function at least a little.

Sunday, February 3, 2013

MY TV Free Life

It is always amusing to watch the reactions I get when I inform someone that I do not in fact have television. I usually avoid telling people I don't watch tv just because of the reactions I get. But when I get asked direct questions like, "What is your favorite tv show" I have no choice, but to admit that not only do I not have a favorite tv show, but I have no idea what shows ever air anymore.

But Why!? Why, oh why would you choose not to watch tv??

I didn't set out to not have TV. After years of living with roommates I finally moved out on my own (although my now husband did move in with me about two months later). While living on my own I had an epiphany that I wanted to go back to school. I had enough savings to kinda sorta scrape by, but we did not have any extras to pay for things like television. At first it was really weird. I missed my shows, I didn't like being confused when my friends chatted about the latest episode of the latest fad show, I didn't like the lack of options when I wanted to lay comatose on the couch. I started watching shows online, but due crappy internet I had so much trouble viewing the shows that I gave up. At the time I seriously missed television.

After a year or so something strange started to happen. I started to forget about my favorite shows and I started to like the quiet. I began to fill my free time with more productive uses of time that did not involve laying on the couch not moving. I also started to have better body image because I didn't have perfect bodies displayed on a screen all day or adds blaring at me about how I needed longer lashes, tighter skin, shinier hair, and whiter teeth. Eventually, I forgot about my old tv shows and was so clueless as to what the new shows were about I stopped feeling like I was missing out. And suddenly I kinda liked not having TV.

Recently, I played with the idea of buying cable. I am home all day and sometimes I want to be comatose after I finally get the baby to bed. Then one day I was watching videos a few friends posted of their babies on Facebook and while their kids were doing adorable kid like things, blaring in the background was the television. It was distracting and sort if annoying. But more than that one of the scenes seemed extremely violent which isn't unusual when it comes to tv these days. It was strange to see and innocent child taking their first steps in the foreground with violence going on in the background. It made me think about what kind of environment I wanted to raise my family in. I want a calm peaceful place for Kaylee to grow up in and I did not want the background noise in my home to be that of the television.

The main reason I decided not to get television at this time is that without tv I have control over what messages come into my home. I do not want messages of needing more, needing to be better, prettier, richer to taint my home environment  I do not want her to have unrealistic body ideals thrown in her face on a daily basis. I do not want television ads to tempt my child with their unhealthy crap they try to sell kids. The media is powerful especially on young developing minds. I decided for now while life seems to be going by too quickly I did not need another distraction that won't add to the quality of my family's life.

Will she eventually watch tv? Of course! Will I maybe hook up the tv someday so she can watch cartoons? Sure. Will she go to friend's houses and watch tv shows I don't approve of. Yes! But for now while she is so little and the world is so new I would like to keep the media and television out of her little world.

Friday, February 1, 2013

Zenpep Letdown

A few years ago when my doctors informed me that I could no longer take Ultrase since they would no longer be on the market I was horrified! I LOVED my enzymes with a passion. Probably because I went so long with malabsorption issues. I had to switch to Zenpep right around my wedding day which I wasn't too worried about until my nurse practitioner told me there may be an adjustment period. Now I was even more horrified. Flashbacks of pre-enzyme days were haunting me: lots of gas, bloating, frequent bathroom breaks. I didn't want to spend my wedding day or honeymoon with gastrointestinal issues.

Soon after I started Zenpep (and after the short adjustment window) I fell in love for the second time in my life. I went from thinking I had very little digestive issues to realizing that this, yes this was how nonCFers lived. My CF tummy days were non-existent, no matter what I ate gas was never an issue, and I even gained weight.

Fast forward a few years and I am starting to feel that my love affair with Zenpep is slowly dying. I am not sure if my pancreas has changed or somehow giving birth changed my body (the problems seemed to happen after I gave birth. Not sure if it is causation or just a correlation). I am finding that I am getting more CF tummy days, more stomach sensitivities, and longing for the honeymoon period with my enzymes. I am not experiencing true malabsorption issues so I am not convinced I need to increase my eznymes, but I am no longer living the non-CF tummy dream.