Life At The Moment

I opened my fridge and realized this shelf perfectly capture my life in summertime. It also represents the my absolute favorite and least favorite aspects of summer.

A fridge full of meds, produce from the garden (plums, blackberries, cucumbers, tomatoes and green beans), and sausages for barbecuing at the beach.

Night Treatments

You know you are doing your treatments too late when you mix your Cayston and pour the contents in your Pari LC plus neb cup. Sigh! I guess I will be one dose short this month!

No Cayston??

I am allergic to every inhaled antibiotic except Cayston so it has truly become a lifeline for me. My health improved dramatically after starting it and I was able to go three years without a PICC which is a good think because I am allergic to everything involved in PICC lines. I also got through a healthy pregnancy thanks to Cayston. The past several months have been tough on my health and I was relieved in the beginning of May when I knew I would be starting Cayston since I always feel a lot better during my "on" months.

Two weeks into my Cayston month I went to do my morning treatment and as usual pushed the on button without paying much attention. As I was sitting their doing my treatment I realized that nothing was coming out of my neb. I looked down and say my machine was off so I pushed the on button again. The light turned green and the welcome screen appeared only to instantly turn off. I figured it wasn't plugged in all the way so I double checked. It was plugged in perfectly. I tried again. Nothing. I moved outlets. Nothing. I tried using batteries. Nothing. I started to panic internally for a second. I didn't want to stop mid-month and I really needed these antibiotic as I have been feeling tighter in my lungs lately and want to stay on top of my lung health. 

I called Altera expecting to answer a million questions or troubleshoot. To my shock they looked up my machine which is registered under my name and said they would overnight a new one. Sure enough the very next morning I had a brand new Altera on my porch. I did miss 3 doses and noticed the difference since I coughed a lot throughout the night after my missed treatments, but I have to admit I was pretty impressed that within 12 hours I had a new machine. So I am back on the Cayston train and just hoping my tightness dies down before the end of the month.

Cayston Forever?

So this last round of Cayston was such a crazy experience. I started it a little early as I was sick and on antibiotics and during the duration of one week I coughed out 5, yes 5 very large and old nasty plugs in 7 days! I even had a fever for a bit before coughing 2 of them out. It was like clockwork. Got a little fever, did my treatments, coughed a plug, fever disappeared. I know the antibiotics must have helped bring up the plugs, but I really wasn't that sick. I got a cold and lost my voice, slept all day, and was back at work the next day. After 27 years (13 knowing about my CF) I have come to learn that no cold of mine disappears without giving my lungs a visit so I immediately go on orals.  So even though I was on orals I was still shocked that I pulled so many plugs when I don't feel like my lungs ever got too bad.

With that being said my Cayston run is over and I am nervous about stopping. I can't use Colistin or Tobi so I really only have Cayston to keep my bacteria at bay. My doctor mentioned staying on Cayston all the time when I started to show problems with Colistin, but we haven't discussed it further. Seeing how many plugs (not just this month although this month wins, but all months when I start Cayston) I am really considering going on it full time. I am not too worried about resistance because if I don't take care of my lungs now I won't live long enough to become resistant to any meds anyway. At this point, I am not resistant to any meds (one perk of  late diagnosis) and figure with the upcoming inhaled Levequin and Cipro I will have several options in the future. Has anyone else ever been on the same med every month or heard of someone doing this? I am going to talk to my doc about it Monday and will let you now what he says. For now I miss my cayston :(

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?

Cayston

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 quiet..as 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.