Letting It ALL Hang Loose

So I rarely write twice in a day, but I had a story I HAD to share with everyone! Since the weather is nice and I am trying to work out as much as I can in order to increase my lung function, I decided to pull out the old bathing suit and give the pool a try. Now I need to add in a little detail, I only own a bikini. Well, in the past when I want to do laps I don a beater (tank top) so that people won't be offended by my lack of official bathing suit. Great idea, right? I thought so.

So I get to the pool and am glad I have my shirt on. There is one other girl with a bikini and it looked so out of place, nothing like me in my official bikini covered by a tight little tank top! Okay, so I looked ridiculous, but at least I wasn't slutty looking, right? Oh, if only that were the case!

I jump in the pool and realize that my tight fitting beater became 2 sizes too big in the water. No biggie because it still covers my exposed stomach. So I am swimming along which I must admit is MUCH harder than I remember. so I am more like swimming 2 laps and huffing and puffing for 2 minutes and then attempting 2 more laps..details details. So mid lap, I notice my not so fitted t-shirt is feeling even bigger! Wow, this is awkward! I swim a few more feet and realize...OH MY GOD!!! My bathing suit top came untied!!! Because of my stylish too large t-shirt I am not sure how much of my girls were exposed, but needless to say I am never swimming at that time slot again in case someone saw more of me than they bargained for. And that my friends is why wearing a bikini with or without a beater to cover your extra skin is NOT, I repeat not suitable swim wear for laps. I am off to buy a frumpy one piece...

Much Too Sensitive!

So I was on a cycle of 28 days Cayston, 28 days Colistin every other month. Well last month, I started Colistin and instantly felt tight and irritated in my lungs. I decided to hold out a week to see if it improved. I noticed the symptoms were much worse immediately following inhaling Colistin and started to ease up as the day went on. I also noticed that if I skipped a dose the symptoms weren't as bad. So I went to the clinic and my CF doc took me off Colistin permanently.

My little lungs can be so annoying sometimes! They are so sensitive! I wish they would understand that these inhaled meds are HELPING them, but they always freak out and get inflamed. I am now permanently off Tobi and Colistin which means I now only have a month of Cayston and then a month of NO inhaled meds. This really freaks me out.

I just completed my first month without inhaled meds...I seem okay. I do feel like I started them in the nick of time because I can feel my energy level dropping slightly. My Doc said that I could potentially stay on Cayston every month, but he wanted to see how I do every other month first. I really hope that Cayston does not start bothering my lungs because I would be out options until the inhaled Cipro becomes approved.

I wonder if there is a way to desensitize your lungs when it comes to inhaled meds like there is for IVs. Hmm anyone ever heard of this?

A CF Mommy!!! (not me)

BEF Foundation posted this on youtube....so inspiring!!

Thanks "Dr"

So I love when others decide how severe or mild my CF is. The doctors don't even label my CF so why is it that others feel they know how mild/severe my CF is. People see me when I am out in public, they look at my age, they look at me. To the world, that does not see me in my home doing treatments, meds, supplements, I am super healthy. I am bubbly, outgoing, and seem full of life. What they don't see is how much work goes on behind the scenes to make me appear this way. They don't see the boxes and boxes of meds I have stashed in my closet. They don't see the bottles among bottles of vitamins and supplements. They don't see the hours of time that I sit on my vest, breathe in my nebs, and blow into my flutter. They don't see the sinus rinses. They don't know that I require 8 hours of sleep during the week and that I need catch up sleep on the weekend. They don't know that if I don't spend an hour every morning and an hour every evening doing treatments I feel AWFUL and as if an elephant is on my chest!! They don't know that if I skip my afternoon treatments too many days in a row I will need to be on oral antibiotics. I love that people that know nothing about CF except outdated info that it is a childhood disease say things like, "well if you are 27, you must have a very mild form." It is true that some CFers don't make it to 27 and in that aspect I am very lucky. BUT CF is not a mild disease. CF requires work and lots of it. CF is a DAILY battle that requires time and dedication. CF will never quit and so CFers can never quit fighting it EVERY SINGLE DAY! So next time someone is going to tell me I have mild CF, I am going to make them spend 24 hours doing what I do every single day and ask them if they really think that it is mild.

In the meantime

I have discussed all the different Dr appointments in the process of getting healthy enough to try to have a baby and now the waiting begins. There are only a few days a month that it is even possible to get pregnant and they say that even if the timing is right there is only ~30% chance of actually conceiving. Also, CFers sticky mucus (which is everywhere in your body) can make it more difficult to get pregnant. So the next few months while waiting to see what happens, I will go back to reviewing medications/treatments I currently use or have used in the past. If you have a drug you love that I don't mention, please let me know because I love learning about different meds. Especially, since my Drs seem to be slightly conservative when it comes to meds and so I am always the one trying to get them to start new things. I like using the big guns!

Green Light

So I went to the high risk OBGYN and she gave me the green light! She said that she has very few concerns. Here is an overview of the appointment.

My weight looks good. She said I was one of the few patients she tell they can gain the whole 20lbs during pregnancy. She said most people start out overweight and need to gain much less. She said exercise is fine as long as I can gain enough weight otherwise I may need to cut back on the gym.

She said my FVC is fine (in the 90s), but my FEV1 is low. She said that even though my FEV1 is 50% she really wasn't worried especially with a high FVC. I asked her if she ever had to end a pregnancy due to FEV issues or other CF related complications and she said, "Never." She was so optimistic and really reassured me that everything would be okay.

I would be able to stay on all my meds and wouldn't have to change anything. The only problem is no cipro, bactrim, or levequin which are my oral tune up go to drugs. That is a little scary, but I will have to talk to the CF docs to see what backup I could use.

The only thing she was concerned about was gestational diabetes which CFers have an increased risk for. She did say she would be watching me like a hawk for CFRD and would do their best to keep it under control if it became an issue.

The only other concern I have is how long it will take to get preggo. When I asked if CFers seem to have a harder time getting pregnant she just said she wasn't on the infertility side and had no idea. Cross your fingers because I am not getting any younger!

Sadness With A Touch Of Relief

So last yesterday I had a mini pregnancy "scare" except replace the scare with hope(?) After ovulating I ALWAYS have 14 days till I get my period. I have been tracking (not with temperature) since we got married (I also off of birth control at this time) so it has been this way for a very long time. My period has never been even a day later than 14 days after ovulating. I know they say that a woman's body isn't always like clockwork and that it is normal to be a day early or a day late in to which I used to say, "That's not true for me." Now I officially have to say, "Sometimes that's true for me too." Blah! I knew that it very well could be a little on the late side and mean absolutely nothing, but last night I couldn't sleep with the what ifs. Part of me was sad to see AF here this morning around 10:00, but a little part of me was relieved too. I was NOT expecting to get pregnant before talking to the OBGYN tomorrow and so I had a few glasses of wine (or a little more than a few) this week and several glasses of coffee. I know a few glasses of wine can't really hurt a zygote and will probably not hurt a blastocyst but considering I am already considered high risk I didn't want any other worries on my shoulders! But rest assured, AF has made her grand entrance and I will be ready next month, alcohol and caffeine free and filled with knowledge from the OB.

Speaking of the OBGYN I have my appointment tomorrow!! I am so nervous and excited. I wish I knew a Cyster that has been to the high risk OB because I would LOVE to hear what to expect. I have written down over 20 (yes, 20!) questions to ask. I am hoping she answers most of them before I have to ask them. My dad hasn't told me what he wanted me to ask for him yet so that will probably be 20 more. He is a scientist and always asks the most in depth, scientific, probing, mumbo jumbo questions that always flusters the Drs, but he finds fascinating. That is the great thing about having a genius for a father, the Drs always love him because they respect how smart he is and it is neat to see their face light up with surprise when he asks an in depth question and then go into this long complex explanation. I think they like being able to share their knowledge rather than the dumbed down version the rest of us get.

Stocks Fall After VX Press Release..So What?

Before I explain what this post is about I want to get one thing straight. I am not a hopeless optimist when it comes to CF cures/meds...in fact I am EXTREMELY hesitant when new developments come out because I do not want to disappoint myself by being overly optimistic.

So now to the post. I read that stocks dropped after the news release about the VX770 and VX809 (for cytics with Delta F508) and although it raises some concern I will explain to you why, the non-optimist, is still optimistic. Okay, stockholders were hoping for better outcomes even though the outcomes of this trial were not bad. I know stockholders goals differ from mine and so this is why I am not letting the drop in stocks deter me from being excited.

In my opinion as long as the results are somewhat positive I am stoked. Okay, say the VX drugs aren't THAT amazing for DF508 cystics, but they still have a positive effect on CFers. Is that something to whine about? No way!! If it helps add even 1 or 2 years to my life by very slightly slowing the decline in my health and allow me to have 1-2 more years with my handsome husband, my friends, and my family. I am all for it! Also, it is a PILL!!! So if something that takes 30 seconds to swallow (versus say 30 minutes to neb) I am an even HAPPIER camper!

Say worse case scenario. The drug just isn't showing enough scientific evidence to be worthwhile could we complain? Sure, but remember no matter what all this research is getting us closer to something that will work!!

In my opinion I do not need a cure. Would I want one? Yes, more than anything in the world. All I care about is that more and more meds will be available to allow CFers to live longer and longer. Maybe there won't be a magic bullet, but if a combination of meds/treatments would allow me to grow wrinkly and grey I would say that is enough for me.

Yay!

Yay!!

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/6-9-Phase-2-Study-of-VX-770-and-VX-809-Results.cfm

VX news release (very detailed)

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=583683


I am trying not to get too excited, but I think it is okay to get a little excited. BTW, sorry that I wasn't able to link it. You will have to copy and paste it.

I Hope You Like Salt

Just a random quick note. My husband and I were on the couch talking the other night and he gave me a big fat kiss on my forehead. Then without much thought he wiped his lips with the back of his hand and said, "whoa salty!" It was a very warm sunny day and I have CF, enough said. I always thought that being a salty was a perk, but I guess you have to be a fan of salt to agree.

Very High Maintenance

I never considered myself high maintenance. I wear minimal make-up and since I have long straight hair I usually let it air dry from the shower. Even before my mornings were consumed with meds I never really worried about getting done up for work/school.I realized recently that despite my easy getting ready routine I am very high maintenance. I have to wake up early tomorrow, for a Saturday, and I am so not looking forward to it. I need to leave my house at 9:00. Okay, that may not sound early to you and really it is not early considering on work days I leave at 7:30, but because I am so high maintenance it ends up being an early morning.

Here is my weekend morning schedule. I usually try to do a more extensive health regime on he weekends because I (in theory) have more time. On weekends I wake up and shower/dress which takes about 20 minutes. I then start my treatments which take an hour with multitasking. During this time I often brush my hair and make coffee :) After treatments I finish getting myself ready in non-health ways such as putting on deodorant. I then start breakfast and pull out all my morning pills/vitamins. By the time I get out the door it is usually 2 hours since I woke up. This routine is a little shorter on weekdays because I shorten some of my med times. So tomorrow instead of sleeping in I will need to wake up at seven. I know it really isn't something to complain about because it really isn't THAT big of a deal, but sometimes I wish I could just roll out of bed, hop in the shower, grab a granola bar and be out the door like "normal" people.

Genes and Severity of Cystic Fibrosis

We all know that CFers seem to have different experiences with their disease. Looking at CF forums some Cfers receive lung transplants in their teens or die before their 18th birthday while others are in their 30s with PFTs in the 90s. Drs, scientist, and patients alike would love to know what other factors besides mutation type leads to these variations in severity. This article discusses just that. Although, it is still being researched it is great to know that the more we learn about the disease the better the prognosis will be for all of us.


Genes Tied to Severity of Cystic Fibrosis Identified - US News and World Report