Saturday, April 30, 2011


I am feeling better today. All my cold symptoms are gone and because I don't have to work today I was able to sleep in. So far my lungs feel fine, but I am still weary that I may develop and infection. I increased my Hypertonic Saline and am doing extra Flutter treatment. So fingers crossed. Now that I am feeling better I want to review Cayston. As far as I know this medicine is only used for patients that culture Pseudomonas aeruginosa. Lucky for me I have been culturing it since as long as I have known about my CF.

I started taking Cayston several months ago and I am on a 28 day on cycle followed by a 28 day off cycle. Aside from the medicine I want to talk about the convenience of it! I have been so thrilled by how easy and fast it is that I have been tempted to write the company. No joke! You do not need to put it in the nebulizer, but rather they give you an Altera nebulizer that is so small it can fit in my purse. It is equally light. It is also extremely in silent!

The medicine has to be premixed prior to use, but even this is not a big deal because unlike other mixed meds (i.e. Colistin) it takes only second to mix. Another nice aspect is that even though the medicine needs to be refrigerated it can be out of the fridge for 28 days. I usually keep a weeks worth out of the fridge and in a convenient spot. The medicine does need to be used 3 times a day which can seem like a pain and I was a little worried about it before I started, but here it THE BEST part. It takes only about 2 minutes start to finish!!! This means that days I am running late I simply take it in the car with me. If I will be busy after work, I bring it in my work bag and take it in the bathroom during my lunch break.

I am not a good scientist and so it is hard for me to accurately review this medicine. I started Cayston simultaneously to other meds/treatments because I was at a point in my life that I wanted to fight CF hard core and felt what I was doing wasn't working well. Because I started so many new treatments at once I am not sure what to contribute my better health to, but I am not willing to stop any to determine its effectiveness. I like feeling good too much. Anyway, since staring my Cayston (plus other medicine) treatment I have had a huge difference in my mucus. Again this may be contributed to many factors, but I do believe Cayston has a large part in my health. I have always had issues with keeping my bacteria levels down. This can be determined by the color of mucus. The more green/thicker the more out of control an infection is. The dark green days are completely gone and I have not seen my old mucus in several months! I used to deal with green mucus all the time with the exception of being on IVs or oral abx, but without orals or IVs I have seen the same light yellow that I love seeing so much. Also, I do feel better on Cayston months than on Colistin months, but the difference is slight.

Lastly, taking care of your Altera is SO important. When I fist started I simply boiled all pieces and called it a day because that is how I take care of my other nebs. I then read that the metal head should be soaked in alcohol in order to keep it clean and working more effectively. It makes such a difference!! If I don't soak them the treatment time gets longer and longer. By soaking, the treatment time remains around 2 minutes. It is so worth my time to throw the heads in 70% alcohol and have shorter treatment times.

This is a really long post so if you are still reading then good for you! Talk to your Dr about Cayston if you cutlure the lovely Pseudomonas. I don't think they know the benefits of Cayston on kids under 7 or CFers with PFTs below 25% (I figure it can't hurt at that point can it?) or PFT over 75% (so wish I was one of those CFers), but for everyone else it is worth asking your Dr.

Friday, April 29, 2011

Not So Bad This Morning

I woke up feeling pretty good. In fact, I woke up and hour and a half early (I went to bed 1 1/2 early) so I guess my body wasn't in dire need of sleep. I will see after a full day of work how I feel. At least today is Friday so I can rest a lot this weekend and fit in extra treatments.

Thursday, April 28, 2011

Sick :(

So I absolutely caught something. Ugh! I was trying so hard to stay healthy, but failed. I am not overly surprised as most people at work are sick. It amazes me that some people do not have good hygiene skills. For example, when you blow your nose you should wash your hands or at least rub some hand sanitizer on them. Same goes for sneezing in your hand! I guess people think that because it came from their body it is not gross, but it is. Okay that was just a little side tracked rant. Moving on...

Like I said I came down with something and am hoping it goes away ASAP. I will continue with my medical reviews when I feel a little better. No matter what I catch I always get the SAME symptoms. A non-stop cough! And when I say nonstop I mean NONstop. I will cough ALL night and ALL day and this continues until I lose my voice and my whole body aches just from coughing. As a side note it is a great workout and muscles I never knew existed get sore. Besides the workout it is so annoying! The worst part is that I can't sooth the cough no matter what I do! I have tried everything from cough drops to cough suppressants. FYI: Cfers should never take a cough suppressant because they dry out mucous which makes it harder to remove from the lungs which increases your chances of infection. There are times I have been so desperate that i didn't care, but they didn't work anyway. In fact pre-diagnosis Drs gave me prescription cough syrup to try to alleviate my cough and surprise surprise it didn't work.

This is a random theory, but this is the only way I get through being sick because the incessant cough nearly makes me crazy. Sometimes i think that the reason I get the nonstop cough when I am sick is to protect my lungs. I cough SO much that while I am sick my mucous is usually clearer/thinner than other times in my life because I am seriously COUGHING ALL THE TIME!!!
Can you tell it is annoying?? I figure it protects my lungs from whatever is bothering me by not allowing anything to settle in my lungs. The problem is after my cold subsides I often find I am so warn out that I get a lung infection. Lovely.

So this is what I am trying to do to get better faster, but most of all to avoid any issues with my lungs.

1. I am drinking OBSCENE amounts of fluid.
I have my morning Ensure plus 2 extra large mugs of tea, two very large water bottles full of water and a bottle full of water + airborne all within my workday. I also pee about every 30 minutes.
2. I take extra Zinc and take at least 2 Airborne a day.
3. I do as much Vesting as possible
(I know what I said in my review, but I need to take every precaution)
4. An extra dose of nebbed Albuteral
5. Extra calories because coughing all day burns a bazillion calories.
6. Lots of rest
which means going to bed at least an hour and 1/2 before my regular bed time.
7. I do as many sinus rinses as possible. I usually do 2 in the morning, 2 when I get home from work, and 2 before bed.

Wish me luck in a speedy recovery. I hate being sick mainly because I worry about my little lungs.

Tuesday, April 26, 2011


Any CFer that is pancreatic insufficiency knows nobody in their right mind would give enzymes a bad review. I do believe it is important to review them though because of an event that happened about 8 months ago.

As someone with a late diagnosis, but not a late onset of symptoms I know how miserable life can be without enzymes. I wasn't diagnoses until I was a teen (LONG story), but had all the symptoms growing up. I grew up spending much more time of the John than necessary and getting really bad stomach aches. I am also forever scarred away from certain high fat foods such as any cream sauce, donuts, and anything cheesy. Eww the thought of those foods makes me cringe because of the high fat content they would reek havoc on my gut growing up and so I avoided them at all costs. My stomach knots at the thought of eating those foods even though now my enzymes can easily digest these foods. But I digress.

Back to my review of enzymes! For 12 years I used Creon MT20 enzymes to help digest my food. It was amazing how much better I felt and how much less time I spent on the John! I grew a significant amount after enzymes and lost the emaciated look. I was fine 80% of the time, but every few months I would get bathroom issues. I was never sure why because I am 100% compliant with enzymes. I was never sure the trigger, but once my gut was off I would have issues for about a week. NOT fun!!

Fast forward to earlier last year. Creon was pulled off the market and I was switched to Zenpep. The first 2 months were a nightmare and not having a fun time! I was hoping and wishing that Creon would get FDA approved and come back to put me out of my misery. Then after a few months something amazing happened! My stomach issues went away and I felt better than ever. I have been using Zenpep for 8 months now and have had NO stomach issues or random bad days.

All CFers that need Enzymes require different amounts of Lipase, Amylase, and Protease. Enzymes are not one size fits all. So I am not in anyway saying Zenpep is a superior enzyme. The point is that because we are all different you should never settle for an enzyme that isn't doing a GREAT job. I didn't know any better and compared to no enzymes I felt great with Creon. The ratio of enzymes in Creon worked well for me, but it wasn't exactly right. If you are having gut issues then maybe you need a new enzyme OR a different ratio of your current enzyme.

As always, be your own advocate and stand up for your health. Your Dr does not have to live with the stomach aches or the frequent trips to the bathroom, but he/she will work with you if you are unhappy with a current med/enzyme. Don't settle for just okay because we deserve much more than just okay.

Monday, April 25, 2011

The Vest

For those of you new to the blog I am reviewing all of the treatments/meds I use to stay well. I obviously think they are all important because I use them, but some seem to be more effective than other.

Today I am reviewing The Vest...hmmm. I have mixed feeling about it. I do use my vest, but I have to admit that I feel it does very little for me. Most CFers will tell you that The Vest is not a passive treatment (but no CPT is) and that in order for it to be effective you must couple the vest with huff coughing. Okay, but it still produces no more than if I am sitting and watching T.V. and try to huff cough.

Now studies prove over and over again that The Vest is amazing and can do wonders for a CFer, but for me The Flutter works way better. *Flutter review to come soon* In fact I would say most CFers prefer the Vest to other forms of CPT, but I just can't get much up with The Vest. Many people rely on The Vest as their main CPT and I say "Good for you!" because it works for them, but it is just not my thing. When I list my CPT to my docs they always assume my Vest is my primary CPT and the Flutter is my secondary. I always explain that no, it's the other way around. I think they assume that everyone uses The Vest as their primary. But they all agree that it is better to use what works best so Flutter it is.

So why do I use The Vest? Well, good question! I only use it on days I don't exercise or if I feel I am getting sick and I want to take every precaution. I use it while using nebulized albuteral as well as Hyper-tonic Saline. I hope that it may shake loose some mucus and allow these treatments to reach further in my lungs. I also believe that The Vest does shake loose mucus, but for me I need another device (flutter) to help assist the mucus out of my lungs. I would never use The Vest without the Flutter because shaking mucus loose just to resettle in my lungs seems pointless. If the Vest works well for you then I am jealous because I wish I could get more out with The Vest, but it is what it is.

Also, to add to my cons list I find that I must wear only a t-shirt because if any amount of skin is touching the actual vest, it gets very irritated. My skin also itches very badly after I stop The Vest so I give myself a nice scratch down after each treatment. The last con is that it is time consuming and I find I can do very little while using it. It shakes your body so I can't read or type. It is very loud and so it is too hard to watch T.V. or listen to music. I have the old Vest, the HUGE 40lb vest that sounds like a vacuum so the newer models may be quieter. Let me know if you have experience with the newer Vest because I may just ask for an upgrade if it seems worth it.

1. Studies show that it helps clear mucus.
2. It is not hard to use.
3. It's nice to have a little boost for the days I don't exercise or am sick.

1. I find it does not bring up very much mucus without the assistance of another device (flutter)
2. It is noisy and is hard to do just about anything while using it.
3. It is time consuming 30+ minutes.
4. It is ugly/huge (but I have the old vest) When guests come to my home I always get a "What in tarnation in that?"

Let me know your experiences with The Vest especially if you have a newer model.

**Disclaimer: I am not a Dr and this is just my experience using the Vest. Every CFer is different
and I am not recommending or discouraging any form of treatment, just telling you my experience. Never change your treatment plan without your Drs consent.**

Sunday, April 24, 2011


I decided to go through all my new drugs and discuss what they do for me and how much I like them. Some of the meds I use seem really helpful while others I use only because my doc tells me to. I assume similar genomes would have similar experiences although genome is only one factor in how CF affects someone. Anyway, my genome is Double Delta F508.

Pulmozyme is probably my single most favorite medicine! I have read on other blogs and forums that some people don't seem to notice the affects of Pulmozyme. Some people even chose to try Mucomyst instead. This amazes me because I feel the affects of Pulmozyme more than any other medicine I take. If I miss one dose of Pulm I notice a huge difference the next day. And when I resume taking Pulm I notice I feel back to normal by the next day. In fact if there was only one thing I could do for my lungs I would choose Pulm. I love it that much. I should so be a spokesperson for them.

I will forewarn you this next paragraph will be TMI so if mucus grosses you out skip to the next one. As a CFer my mucus is very very thick. When I was non compliant with meds in the past I had mucus so thick that it would hold a nice circular shape after I spit it out. I call it the brain consistency (I told you it would be TMI) because it looks like a little brain. I started taking Pulm twice a day and my mucus can't form a ball now if it wanted to. It changed the consistancy so much that it even changed the sound of my cough. I no longer have that nasty hacking cough, but rather a regular sounding cough. I don't know how well I explained that, but a CFer will know what I am talking about.

With that being said, when I have a bad infection I still get brain mucus despite the use of Pulm which means I need some strong antibiotics.

P.S. You know you are a CFer if you can write a whole blog about mucus consistency while eating breakfast!

For the lazy reader, which by the way I am not judging you :)

1. I feel a drastic change in my mucus upon use and an equally drastic change if I forget even one dose.
2. Makes such a big difference that it changes the sound of my cough.
3. It only takes about 10-15 minutes

1. For me none! This is my favorite medicine!!

**Disclaimer: I am a CFer, not a Dr so this is just my experience using this medicine. It may or may not be the same for you. If you are interested in Pulmozyme talk to your Dr. I think it is important for CFers to be their own advocate and discuss new treatment with their Drs. I think my Drs may dread when I come in because I am always asking them a million questions about meds on the market, trials, and meds in the pipeline. Ha***

Saturday, April 23, 2011

Hyper-tonic Saline 7%

I have recently added a lot to my new regiment for health. I really wish I had done all of this years ago, but honestly I thought I was fine and healthy (I have always worked full time since college, IVs once a year, and I am able to do everything everyone else can do with the exception of maybe mountain climbing) so I never felt I needed to add more. It's 20/20 vision. Had I known then how much better I could feel I would absolutely have added a lot more to my regiment. Oh well.

I decided to review one new med per blog entry because I can be wordy and it will make it easier for people to find the meds that actually apply to them. So today I am reviewing Hyper-tonic Saline. Oh and I don't know if similar genomes react similar, but for the record I am double delta F508 which is the most common type of CF.

If I use a flutter I am good at getting a lot of mucus out of my lungs, but anyone that uses a flutter knows it is a lot of work. I usually cough very hard and am tired at the end of my treatment. All other CPT is almost useless in getting mucus out for me. Now with the addition of HTS I do not even need to try! I use HTS and within a minute I am coughing and coughing and best of all PRODUCING! The HTS causes the mucus to come up and out of the lungs much easier and I can say with 100% confidence that its an amazing addition to my CPT. I really don't have to work at all! I always follow HTS with my flutter just to really get everything out. When I use HTS which is only weekends and evenings I cough up TWICE as much and except for the time invested it is no more work. So I am a huge supported of HTS.

Now HTS is not perfect and so here I will mention the cons.It can be irritating. When I first started using it I found it very irritating and could only do it for a few minutes. I decided to start with a diluted version and gradually used it for longer at stronger concentrations. To this day I still get mild throat irritation, but it goes away soon after I stop the med. Also, if you get bleeds it can make you bleed more often, but I am not a bleeder so I have not had this problem.

I have actually been thinking about upping the saline ratio and trying HTS 9% to see if it is even better. I will update you if/when I try it.

For lazy readers I will compile and easy to read pro/con list to all my meds/treatment reviews

1. Makes coughing mucus out of the lungs SO much easier. Almost effortless.
2. I produce twice as much mucus as compared to CPT without HTS.
3. It is easy and only takes between 10-15 minutes. Well worth it in my opinion.

1. Can be irritating and you may have to work up to a full dose over time.
2. Can increase bleeds, but I am not a bleeder so no worries there for me.

**Disclaimer: This review is my personal experience with the medicine. We all know every CFer is different, even those with the same genome, so please talk to your Dr about your illness and any meds you are taking. Also, be your own advocate if one of the meds sounds like a medicine you would like to try bring it up at your appointment and see what they think**

Thursday, April 21, 2011

Getting Pudgy

In order to get on track to make a baby and make sure my body is healthy I am trying to pack on the pounds. Psychologically, this is uncomfortable for me. I am a classic CFer. Big ribs, skinny arms and legs and a belly. Ugh. Not so sexy!I always thought I was just meant to be skinny because any extra weight I gain seems to go right to my belly. Unlike most women I would love a little more fat on my butt and thighs, but alas we can't all have what we want. So I am ignoring my negative self talk that with the added weight my belly is the only thing growing and I am telling myself curves are in. I know, I know they weren't talking about stomach curves, but if lying to myself gets me through the day so be it.

Anyway, my weight is actually healthy and my doctor gave me the weight-for-baby-making stamp of approval. As you may know by now I am an overachiever and decided that I should gain some emergency weight in case nausea rears its ugly head in my pregnancy. My doctor told me to drink 2 ensure a day. Now Ensure is thick and although it tastes decent, it is thick and rich and not something you can chug like water. So at first it was a struggle to make sure I got two a day. I found that if I take one in the morning as breakfast (I am 100% positive this is not what my Dr had in mind when he prescribed them) and one at night I get my 2 a day. This worked well until...

I think I have become addicted!!! I didn't even really like them at first and now I LOVE them. I could drink them all the time. Whenever I want a snack or am a little hungry I think, "Hey, an Ensure sounds good about now." They are easy and require no prep so they are my go-to snack. I am a little worried I will be getting a little more than a little emergency weight. Yikes!

Wednesday, April 20, 2011

Allergies or what?

It's Spring time! I take year round allergy pills, but I never think they help during Spring when everything is in full bloom. In preparation for allergens I have air purifiers on full blast while we are at work and throughout the night. I am also doing sinus rinses twice a day. I sneezed about 15 times yesterday which is making me nervous, but today so far so good. The worst part of allergy season is I never really know if I am getting sick or just having allergy symptoms. I have my fingers crossed that this is truly just allergies and not an oncoming cold.

Monday, April 18, 2011

When do you know?

So I am having an ongoing issue of not knowing when to give myself the green light to start trying. I am an over-planner and an over-thinker, this I already know. The problem is with planning to have a baby there is always something that could be better before trying. I keep thinking maybe we need a few more dollars in the nest egg or maybe a few more hundred, or thousand. Maybe I should wait until I am better at keeping my closet organized because a messy closet will be much more stressful after a baby is here. Maybe we should enjoy married life a little longer and travel more because it won't be so easy once baby is here.

Then there is the CF when? I should wait until I gain 5 more pounds (although my doctor told me my weight is fine for having a baby, but 5 more security pounds would be good). Maybe I should wait till I eat a healthier diet. Almost solely local grown, no hydrogenated oils, artificial dyes, and processed foods. I am pretty good at this, but have not perfected it. Sometimes things from cans make dinner time so much faster! What about exercise. Shouldn't I wait till I am at my physical peak. Whenever that is and I haven't figured out how I would measure it, but I am sure I am not there yet. What about my numbers? Shouldn't I wait until I have one more PICC line or until i have a few more rounds on inhaled meds???

Here is the proof that I am ready and yet I have not given myself the green light yet.

1. I take all my supplements (vitamins, pro-biotic, prenatal vitamins) without fail for several months. I have always been good at taking pills.
2. I am 100% compliant with my meds (with the exception of vacations. I am never great at being perfectly compliant on vacation, but I rarely go on vaca so I figure its okay)
3. My Dr said my weight is a-okay for baby making.
4. My PFTs have been stable for almost 6 years which my Dr said is more important than the number itself.
5. I am exercising!
6. I feel healthier than I have in a VERY long time. As in years. I am not sure what my current PFTs are, but I feel amazing.
7. My menstrual cycle is getting shorter and shorter (normally 34 days and has slowly decreased to 29 days) which I take as a sign that I am in better overall health.

My Dr gave me the green light, but I am so afraid of taking the plunge. Not for myself, but for my unborn baby and my husband. I honestly believe that if I have a baby she will be perfectly healthy, but I am afraid of what might happen to me. Again, I am not worried for myself, but I would hate to put my husband through any pain and even more than my husband I would never want my baby to have a very sick mama. I just wish I could have some sort of sign or way of knowing when we should start trying.

Oh and I know that there is a chance that it may be very difficult to get pregnant and that I may need fertility help although I am hopeful this won't be the case. I come from a line of uber fertile women and so I hope this has been passed down to me. Maybe I am naive, but I just don't want to worry about it until I cross that bridge. With that being said very few people get prego their first month so I don't want to wait too long, but I don't want to rush it either. UGH! Can you see my dilemma?!?

Friday, April 15, 2011

How does that make you feel?

I am at a point in my life that I am feeling desperate to make changes in my health and in myself. I feel at a crossroads. My health is still fine (I work full time, have a social life, go to the gym just like any other person and I only need IV tune ups every 1-2 years), but at the same time its not stellar. I don't have great lung function and I am getting older! I feel like I can either step it up and do everything in my power to get healthier/maintain my health or I can continue down mediocre path and decline much more quickly.

I choose to FIGHT!

I am looking at whole self wellness too. Not just meds and treatments. This is why I started yoga and running. *See previous posts about these activities* I have also started seeing a counselor. I never in a million years thought I would see a counselor. It may seem obvious that someone with a fatal disease may want someone to talk to about it. I have never suffered from depression (which I am so grateful for) so I never though I needed to see someone. So why did I start?

It is a funny reason that I started actually. It came as part of my insurance plan through work. Now my insurance makes me pay an arm and a leg each month. I am not kidding it is a HUGE portion on my paycheck, but being a CFer I don't have a choice. It's not like I can buy private insurance, but I digress. Since I knew I could get so many session free and technically I was paying for them in the plan I decided to try it out.

I never would have ever gone if it wasn't part of my insurance plan, but I am sooo happy I did. It has allowed me to learn so much more about myself and how I view my illness. It has also allowed me to include my husband in this side of me (since I tell him all the discoveries I made in session) and it makes me feel so much closer to him letting him know all my dark secrets.

Any CFers (or other people with chronic illness) if you have the opportunity to talk to a professional I would completely recommend it. I think everyone that deals with chronic and/or fatal illnesses probably have some pent up feeling about it and it can't hurt to try to improve yourself and your understanding of yourself.

Thursday, April 14, 2011

No, I am not getting paid to say this.

I was having a about-to-be-under-the-weather type lung day. My lungs felt fuller than usual and as a result I was coughing much more than usual. Blah. I was figuring that the week away and not so compliant vacation was finally catching up with me. I debated whether or not I wanted to go to yoga because I didn't want to be coughing the WHOLE time. I figured my health was more important than avoiding possible humiliation so I decided to make myself go. Most people know I have CF so they know my cough isn't contagious.

I got to yoga and something crazy happened. Now I must warn you I have no reason to promote kundalini yoga and do not get paid, in fact nobody from my yoga studio even knows I have a blog. I instantly felt more opened in my airways. Deep breathing was NOT a problem and I was able to successfully complete ALL aspects of the class without a problem. No wheezing, no crackles, and very little coughing. I was in shock!! I am so excited I almost want to go to yoga more times a week, but it is not cheap so for now I will be satisfied with what I have.

One last note. I know yoga did not make my mucus disappear and that I will have to work EXTRA hard this weekend at clearing my lungs to avoid infection and build up, but I can't deny how amazing I felt during the class.

Tuesday, April 12, 2011

I am baaaack!

So after being our of town for over a week I am happy to say that I am back. The good news is I went to Las Vegas with the hubby which was on my "to do before baby" checklist. I went with friends in the past and ever since I met my hubby I wanted to go with him and have a crazy and wild weekend. I also knew that once we had a baby Vegas would be out of the question for a long time. Sure you can go on vacation with a little one, but bars, nightclubs, and scantily clad women isn't really my idea of a family vacation. Also, as I get older I require more and more sleep and need to take better care of myself so I can't see myself having wild nights out in my 30s even though the average nonCFer easily can.

The bad news is that I was not overly compliant with my meds. I did Albuteral at least once a day, but it should be twice. I also did my Pulmozyme a few times, but it should be EVERY day. I took my enzymes without fail and did pretty well with my supplements and other pill type meds. I stopped Cayston because I knew I wouldn't be able to do it 3x a day and I didn't want to build up resistance. I was pretty good at doing the Flutter, but missed a couple times throughout the week when we got home really late.

I feel more that a little guilty and sometimes when I miss some treatment I feel like I have forever ruined part of my lungs. The AMAZING part is that my mucus is still light yellow which means I did not build up too much bacteria. I know that I have OF COURSE built up bacteria by neglecting some of my meds and not doing as much airway clearance, BUT it wasn't to the degree I anticipated. I assumed I would have very thick dark mucus at this point and need meds. This proves one very important point to me. Doing all this extra stuff is REALLY paying off. In the past missing one or two flutter treatments would allow my bacteria to flourish and I would be in big trouble as in needed oral meds. I know I need to work double time in order to make up for the lack of care last week, but at least I feel fine and my mucus looks okay so I will most likely not feel too many ill affects from this fun vacation.