Busy Busy Busy!

I’m sorry I haven't posted in a while. Greg and I had a crazy busy week. Some friends of ours were in town visiting last week, and we went to Nashville over the weekend to celebrate Greg's brother finishing his anesthesiology residency. Now we are playing catch up.

On other news, I got a promotion (and a 10% raise) on Friday! Whooo-hoooo! This will really help us build our emergency fund.

I have so many things I have been wanting to blog about, hopefully I will get around it soon. In the meantime, here are a couple of pictures from the weekend:

Greg and His Brother at the Ryman (The Old Grand Ole Opry)

Me at the Hotel

What We Are Doing About Cervical Mucus

A few posts down, Carolyn was kind enough to comment that she knows women with CF who have taken guaifenesin (which is in Robitussin and Mucinex) to help thin their CM. I figured it was probably a good idea to mention what we are currently doing to deal with this issue.

My doctors said we will likely have trouble getting PG because of the thick sticky mucus, which is the primary reasons CFers get sick. This mucus is difficult for our cilia to sweep out of our lungs, so it ends up stuck there, growing bacteria and causing lung damage. It also clogs ducts in other major organs of many CFers, such as the pancreas, which is why most CFers must take pancreatic enzymes with food. (I am on of the lucky 15% of CFers who is pancreatic sufficient, which means I do not need these enzymes, and is a big reason I am so healthy.)

This problem with this thick, sticky mucus also includes cervical mucus. Sperm have a hard time swimming through it to reach the egg, and there is often a mucus plug at the opening of the cervix, creating a sperm barrier.

I am very surprised that none of the three doctors I have seen about getting PG (my CF doctor and two OB/GYNs) have mentioned any action we could take now to address CM issues. However, thanks to the book Taking Charge of Your Fertility and The Nest message boards, I did learn about taking guaifenesin, which I was taking anyway for my CF. The book and message board also taught me about Pre-Seed, which is a lubricant that mimics fertile quality CM,and we are using that as well.

I've also heard that taking evening primrose oil and drinking green tea can help with CM issues. I am not trying either of those yet, but may in the future if we have trouble TTC (and yes, I will talk to my doctor before trying the evening primose oil).

First Comments!

I must admit that I was very excited when I logged in today to see that my blog received its first few comments. Thanks for the compliments on my Glacier pictures, and your prayers and encouragement!

I've noticed on Google Analytics that most of my traffic comes from The Nest message boards. This is not a surprise considering I have a link to my blog in my siggie, and I haven't told any family or friends about it, (because I’d rather they not know all the sordid details about us trying to get pregnant!).

So, for the nesties who may read the comments and wonder who Nathan and Tricia are, check out this blog. It’s by a man who married a woman with CF, who was preparing for a lung transplant when they learned they were pregnant. It is an amazing story that will make you laugh, cry, and strengthen your faith in God.

Back From Glacier!

Greg and I just spent five days in Glacier National Park! Beautiful is not a strong enough word to describe it. If you ever get the opportunity, definitely take the time to visit! We hiked about 30 miles during our stay, so I got a great workout! We spent two nights in hotels and two nights camping. And yes, I did skip my treatments while I was there (blushing). Luckily I'm on an "off" cycle of Colistin and I took my albuterol inhaler, so I was only skipping hypertonic saline.

Here are some of my favorites of the 330 pictures we took:

On Top of the World at the End of Scenic Point Trail

Greg Hiking to the Sky

Amazing Reflection at St. Mary Lake

How Insane is That Reflection?

Who Turned the World Upside Down?

Huge Trees on Trail of the Cedars

Getting Wet at Virginia Falls

Dirty Hikers Eating a Hearty Breakfast

The Many Glacier Hotel - Where We Spent Our Final Night

There are Three Glaciers in this Photo, But They are Snow Covered

New OB/GYN

I went to a new OB/GYN today. I decided to find a new one after my previous OB/GYN told me she would see me for the first trimester, but then would I have to see another doctor at the same office. I wasn't very comfortable with that, so today I went to see Dr. Jones. I love Dr. Jones! She went over things in great detail and really listened to me. I learned a few new things today, including:

• I should start taking a DHA supplement because it's been shown to help with fetal brain and eye development
• If I spend any significant time around children, I should be tested for immunity to rubella, because it's been shown to cause birth defects (however, I don't spend time with children, so I don't need this)

Dr. Jones also said the same thing my previous OB/GYN told me - that we will probably have trouble getting pregnant and that I should come see her if we are not pregnant in six months. Fingers crossed it won't come to that!

I Have Thrush :(

I went to my Primary Care Physician (PCP) this afternoon because my throat has been hurting and I noticed some white patches on it. It turns out that taking an inhaled antibiotic (Colistin) and corticosteroid (Advair) has given me oral thrush. It's not that big of a deal, except that the thought of having a fungus growing in my mouth grosses me out to no end!

This used to happen to me when I was on 250/50 strength Advair, but it stopped when my CF doctor dropped my dosage down to 100/50. Last month, when I asked my CF doctor to calle my refills in to the mail order pharmacy, he accidentally prescribed the 250/50 for me again. My fingers were crossed that I wouldn't get thrush this time, but, no dice. The sucky part is I have to keep using the 250/100 for two more months because my insurance won't pay for the 100/50 until I use up the prescriptions they already paid for. Boo. Time to stock up on gentian violet.

(My doctor wrote me a prescription for clotrimazole, but I don’t have the time to go to the doctor to have it refilled every time I get thrush. Gentian violet is an over the counter treatment I can get at the holistic drugstore, and my doctors have confirmed it works, but it is messy, and painting it onto the back of my throat makes me gag A LOT!).

Week 4 Off Birth Control

Most of Week 4 was just like Week 3, except I got my period 17 dpo. So my first luteal phase was 16 days. AF was very light (but definitely more than spotting) and lasted about 2 days (awesome). Now I am onto Cycle 2 off BCP and Cycle 1 of TTC!

Cycle #1 of TTC!

I think this is one of the few times in my life I have been this happy for AF's arrival. She showed up today, which means we are officially on Cycle #1 of TTC! Now time for some Advil.

My CF Story (Part 2)

My CF symptoms started around age 11. When I was in 5th grade, I developed a constant stuffy nose. I always needed to blow it, and it was this thick yellow mucus, not your wimpy watery nose stuff. At the time, I didn’t know this was CF related, but, in retrospect, I realize it was. I blew my nose so much that my teacher told my mom “her nose-blowing is disruptive to the class” (this teacher was like one of those devil-teachers you read about in books). My mom went ballistic, of course.

Then, at age 12 (6th grade) I developed pneumonia. I remember playing with my friend on a Saturday and saying I felt weird, and she said “you are short of breath” – I didn’t even know what that meant! The next day, I had a fever of 101. The third day, my fever was even higher and my mom took me to the CF clinic in Portland. A doctor saw me, some chest x-rays were taken, I was diagnosed with pneumonia, we were given meds, and we were sent home. I remember having such a hard time breathing that I was putting Vick’s vaporub under my nose.

That evening, my temperature spiked to 105 and I could not breath at all, so my mom rushed me to the ER. I remember the nurses pretty much attacked me the second I walked in – I must have looked really sick! The nurses ripped off my clothes and rubbed me down with alcohol and put a Tylenol in my butt to get my temperature down. Out of everything that happened, I remember the feeling of the Tylenol up my butt annoyed me the most…in retrospect, I think that’s bizarre, but, when you are a child, I guess you just don’t always realize how serious things are. I also remember the doctor had such a hard time getting the IV needle into my vein that my mom almost fainted and had to leave the room.

It turned out that my lung had collapsed and my throat was so swollen they almost had to perform a tracheomety. I spent that evening in ICU, but I responded phenomenally to the antibiotics and was moved to the children’s ward the next day. I spent 10 days in the hospital, and for some time after I was discharged, a nursed visited my home daily to administer IV meds.

When I was older, my mom told me the head doctor at the CF clinic yelled at her in the ER for not taking me to see him earlier in the day. And, the CF clinic changed their policy based on this incident – from then on, anyone who came in with an infection was immediately admitted to the hospital. My mom was also told by my doctors that I may have died that night if she had not brought me into the ER. And, that was when they said “yes, now we definitely know she has CF.”

My Fantatstic 5th Grade School Photo

Week 3 Off Birth Control

Week 3 has been all about waiting for AF to arrive so we can officially begin Cycle 1 of TTC! Here are my observations of Week 3, comparing them to my PMSing week while on BCP (AF should be visiting any day now):

• I have been coughing up more mucus than normal. I have no idea what is up with that, and I don’t this it’s related to being off BCP, but it is a bit concerning. I feel fine, but I cough up a bunch of green gunk every morning, usually between the hours of 10 & noon.
• I haven't experienced any acne, something I've heard many women just off BCP get while PMSing. This is a plus!
• I had some very strong AF cramps last Friday (8 dpo). I did not get PMS cramps while on BCP. I was positive AF was going to arrive the next day and was worried that I may have a short Luteal Phase (LP). The LP is the time between ovulation and AF, and if it's too short, the egg doesn't have time to implant. However, the cramps went away the next day and haven't been back (yet).
• My breasts are not as swollen and sore as they were when I was on the BCP. However, they are still a little sore.
• I haven't had the same ravenous hunger, but I have still been pretty hungry, and it has lasted more days than it usually does.
• (TMI warning) I usually get super "in the mood" while PMSing. Not so much this week :P
• For most of the week, I was more tired than usual and had a very hard time doing cardio. I would get exhausted easily and have to take frequent breaks while working out. I did not have this problem today, though – I felt great on 7 hours sleep and worked out like a champ. Hmmm...now that I am typing this, I am slightly concerned that this may be related to the first bullet on the list...I must keep an eye on that.
  

No eFlow :(

(I had to wait a few days to post this because I was so upset.) The CF coordinator returned my call on Thursday and said they will not prescribe an eFlow for me because it hasn't been FDA approved for certain medications. Thus, my dreams of actually having time to spend with my husband during the work-week were quickly crushed.

This news was especially hard to take because I am currently in the middle of an "on" cycle of colistin, which has been taking me a half hour to do lately. This means I’ve been spending two hours a day doing my meds. I try not to complain about this too much because I know I am blessed to be so healthy, but today is my complaining day :P

The thing about being so healthy is that no one really sees me as having CF. This is great most of the time, except that people expect me to have the free time that every "normal" person has. I don't skip happy hours because I am anti-social. I don't decline putting in the extra hours at work because I am a slacker. I didn’t give up learning the violin because I am boring. I physically can't do those things because I have to take care of myself. And it’s gotten harder to squeeze things in as more meds have been added to my regimen. Here's my typical weekday:

6:30 am - alarm goes off
6:30-7:30 - do my meds
7:30-8:15 - get ready for work
8:15-9:00 - drive to work
9:00-5:30 - work
5:30-7:00 - drive to the gym and work out
7:00-7:30 - drive home
7:30 - 8:00 - take a shower, check the mail, say hi to Greg & the cats
8:00 - 9:00 - eat dinner & clean up (that Greg has cooked for me)
9:00-10:00 - do my meds
10:00 - 10:15 - get ready for bed
10:15 - in bed

So, during the week, I have about an hour and half a day that I get to talk to Greg, and there is no time for working extra hours or hanging out with friends. I seriously do not know how CFers with children have jobs. There is no way on earth I could ever do that!

Luckily, on the months I am not taking Colistin, I get an extra hour of time each day, and I feel much less stressed. I also usually take Thursdays and Fridays off from working out, so I have an extra hour to play or run errands on those days. I am just very stressed a lot of the time because I can't live up to expectations that others have for me, or those that I have for myself.