So I just found a CF message board (http://forums.cysticfibrosis.com/) and read about a nebuliser called eFlow (http://www.paripharma.com/technologies1.htm). Apparently, this makes taking meds go much faster. It takes like half the time compared to what I am using now. If I could get one of these, I would have an extra hour of free time every day!!! I want one soooooo badly! Tomorrow I'm calling the coordinator at my CF clinic to learn more about this!
The big news of Week 2 is that my chart shows I ovulated!!!! Now, this is exciting for a CFer because research has shown that we are less likely to ovulate than non-CFers. However, a few odd things did happen: I never got a positive OPK (although I could have missed my surge), and I didn't have any fertile CM until after my temperature rise. I don't know if this is a result of coming off the pill (because cycles can be out-of-wack after the pill), or something else. I'll just have to wait and see over the next few months.
Other than that, this week was similar to the first (less bloat, more sex drive), except I did experience some ovulation pains and a lot of nausea the day of ovulation. Now I’m just waiting for good ol’ Aunt Flow.
I met CF mother on the Nest.com baby boards yesterday, and she mentioned to me that it was inspiring to hear from an adult with CF who is doing well. That touched me so much and made me decide to share CF story for any CF parents who may read this. This is a relatively long story, so I will tell it in multiple parts. Here is Part 1:
I was born in November of 1976 in Portland, Maine. A few months after I was born, my grandmother was playing with me and nibbling on my toes, when she exclaimed, “Oh my! She is so salty!” This concerned my mom, who had heard babies with salty-tasting skin should be tested for CF, and mentioned this to my pediatrician at my next appointment. The doctor shrugged it off and said “there is no way she has CF” because I had no symptoms or family history of CF. However, my mom, wanting her fears relieved, insisted they perform a sweat test to confirm I did not have CF. Much to everyone’s shock, the sweat test results were positive.
Me as a Baby (Wasn't I Cute?)
My parents refused to believe that I had a fatal disease and took me to the Children’s Hospital in Boston for second opinion. Again, the doctors said, “there is no way she has CF” but the sweat test came back positive.
My parents were told that I would probably live about 16 years.
So began a lifetime of medication for me. I remember being very young and taking this gross liquid medication daily (it was an antibiotic) and fighting my parents tooth-and-nail over taking it. I also remember having to start every meal with a bowl of applesauce that my mom had emptied my digestive enzyme capsules into – I hated it when the little enzyme beads would be stuck in my teeth because they tasted awful.
However, I never exhibited any symptoms of CF for years. I remember my doctors sweat testing me again when I was older just to make sure I really did have CF. It wasn’t until I was 12 and got really sick that my doctors conceded that yes, I had CF.
I've noticed that, when I get really hungry, especially around lunchtime, I start coughing up gunk. Today I didn't get to eat my lunch at 11:00 like I usually do, and I was starving by the time I could eat. And I was coughing up lots of lovely green stuff. I wonder why that is....
On a related note, I hate coughing up gunk at work/in public because I know it grosses people out.
I just finished my first week off the birth control patch (actually, I have been off it for two weeks, but the first week was my standard "withdrawal week" that patch wearers do every cycle so they get their periods).
Here are my comments on the first week:
It's cycle day 12, and no signs of ovulation yet (CM or OPK-wise)
I am not good at taking my temperature at the same time each morning, which means my Fertility Friend chart has a lot of open circles
My boobs always ache a little bit
I am not bloated anymore (yay!)
I have more sex drive now (double yay!)
CF-wise, I haven't noticed a difference. I had one day with a fever of 100.4, I coughed up green phlegm about 5 times yesterday, and I still have my usual sinus headaches. However, with all that said, I feel great most of the time and don't cough much, but I've felt great since I started hypertonic saline a few months ago, so I don't attribute it to going off BCP.
I've added a link to the chart on the side, in case anyone is interested.
I skipped happy hour today because I had to make up work and exercise I missed when I was sick on Wednesday...after working late, working out, showering, and doing my meds, I am finally drinking wine at 9:30 (Yum...wine). Greg is passed out on the couch already :) Hopefully we will be hanging out with friends tomorrow night!
I feel like crap today, as I usually do when the mold count is high. My whole body aches, I have chills, and I am coughing up green gunk. I don’t know exactly why my body responds this way to mold (I don’t get the usual watery eyes and sneezing) – my theory is that it irritates my body enough for my ever-present pseudomonas to have a party. It’s worse than usual today, but I am trying to suck it up at work because I use way too much of my sick time and I only have 2 days right now. Time for some Advil….
I’ve been missing some treatments lately because I ordered all of my meds through a mail-order pharmacy (it’s less expensive this way). I placed the order over two weeks ago, and I still haven’t gotten all of my meds. I have run out of some meds at home, and my insurance won’t pay to have them refilled at Walgreen’s because they already paid for the mail order stuff. I haven’t had albuterol in over a week, I ran out of Advair two days ago, and I am a week late starting back up on Colistin. Grrrr…I guess this is my whining post for the week :P
Last month was my last on the birth control patch! My OB/GYN recommended I stop birth control a few months before TTC to allow time for my cycles to regulate. Our plan is to abstain or use condoms during times I am likely to be fertile, however, we are aware this is risky to do right after birth control, because my cycles may be all out-of-wack. However, won't cry if it doesn’t work and we get pregnant a few months earlier than planned :) Luckily, our finances are ready to go! We are waiting because we have a few vacations coming up.
I started charting my cycles with the help of fertiltyfriend.com, (recommended by my OB/GYN as well as TheNest.com message boards), which means taking my temperature first thing each morning and tracking my cervical fluid and cervix position. The book Taking Charge of Your Fertility is a great resource for anyone wanting to learn more about charting. This should give us an idea of when I am fertile, and it will come in very handy once we are actively TTC.
I am curious to see if being off birth control will have any positive affect on my CF. I’ve read that one way the pill works is by thickening the cervical fluid (mucus), and I’ve wondered, if it thickens the mucus in my cervix, why wouldn’t it thicken mucus everywhere else? It probably won’t make a difference, or will be so minute that I won’t notice, but we’ll see….
Another time-consuming part of my CF routine is exercise. Now, I know that every person should make time for exercise, but I seriously believe (as do many CF doctors) that exercise is a critical part of CF care. The primary goal is to include lots of cardio to keep my lungs in shape, but research has also shown that patients with more muscle mass tend to be healthier. Weight bearing exercise also helps prevent the bone disease that many CF patients face.
Luckily, for me, I was an athlete in college, which got me into the routine of exercise. The only times I do not stick to my routine is when I am sick or traveling. I’ve had four different CF doctors now, and they all believe a big reason I am so healthy is my commitment to exercise. My weekly routine consists of the following:
A total of 2 hours of cardio, usually done in 20-35 minute sessions (this is divided between running, recumbent bike, elliptical, and Stairmaster)
11 lifting moves, 3 sets of 12 for each, twice a week (chest, biceps, triceps, shoulders, lower back, upper back, 2 types of crunches, quads, hamstring, and leg press)
I work out 5 days a week - usually 3 weekdays (after work), Saturday, and Sunday. I love the way working out makes my body feel (and the way it makes my body look!).
And now I must be extra diligent about sticking to my routine to prepare my body for pregnancy!
Last night Greg and I discussed our financial goals, and we agreed that we are doing well enough to go off the pill after one more cycle!
Then, this afternoon, I was on my way home from the gym, and a deer decided to run in front of my car. I couldn't swerve because there were other cars around, so I slammed on my brakes and skidded into it. Luckily, I was fine and I think I hit the deer on the side, because I didn't drive over it. I saw the poor deer in my rear-view mirror, lying in the middle of the road, twitching, and then it lay still. I pulled over, burst into tears, and called DH, sobbing, "I killed a deer!"
I had no idea what to do, so I called our City’s information line. They told me a police report would not be necessary for my insurance to cover me, and then they transferred me to the City Warden. While I was on the phone, I turned back to look at the deer, and it was gone! The Warden said I might have just stunned it. I was soooo relieved!
Now I have to deal with my car. The front of my car has a huge dent and my lights are busted, and I can't get the hood open to see if there is any damage inside. Grrrr…there’s a bunch of money we weren’t planning to spend! I guess that’s why we need an emergency fund!
We won’t know if we really can TTC next cycle until we find out how much this is going to cost. If it’s only our $500 comprehensive deductible, it won't be too bad. We’ll see….
My blog definitely contains a bit "TMI" (Too Much Information) at times. But I really wanted to be very open about my journey, and I am a very open person. (And yes, people do sometimes say “Thanks for Sharing” to me in real life :) If you don’t want to read about "womanly" issues, you probably doesn't want to venture any further into my blog! ;)
I am 39 years old with cystic fibrosis. For the CFers who may be interested, my FEV1 is 115%, my genotype is dF508/R117H, and I am pancreatic sufficient. The primary way CF impacts me is chronic sinusitis and repeated bronchitis and mild pneumonia. My sputum cultures show pseudomonas aeruginosa(PA). I have only been hospitalized twice. I have been on Kalydeco since February 2015.
My husband, Greg, and I have two daughters: Lily, age 5, and Grace age 3.
I started this blog to share our journey towards conceiving our first child, and to share the information we learned along the way in case it may help other women with CF. During our struggle with infertility, this blog was a wonderful way for me to connect with other women who were dealing with similar struggles.
I now write this blog to share my life as a mom with CF! It has been an amazing journey!
2WW = Two Week Wait (the time from ovulation to menses) AF = Aunt Flo BFN = Big Fat Negative (regarding a pregnancy test) BFP = Big Fat Positive (regarding a pregnancy test) CBEFM = Clear Blue Easy Fertility Monitor CF= Cystic Fibrosis CM = Cervical Mucus CP = Cervical Position ENT = Ear Nose Throat Doctor EWCM = Egg White Cervical Mucus IUI = Intrauterine Insemination KU = Knocked Up LP = Luteal Phase O = Ovulate OPKs = Ovulation Prediction Kits OB/GYN = Obstetrician/Gynecologist PCP = Primary Care Physician PG = Pregnant RE = Reproductive Endocrinologist TTC = Trying to Conceive