Thursday, February 26, 2015

Did I get the Pretty Purple Machine?

Follow up:

First of all, look Andrew & I are making banana bread. It's either to celebrate the good news of the purple machine arrival or console me for not getting it.... We'll see. And yes, for those of you who know Andrew
went to culinary school. This WAS a joint effort. haha, I cracked the eggs & put the banana in..... and we used our awesome Christmas present (Love our KitchenAid).

If you aren't quite sure what I'm talking about... a pretty purple machine? It's been the topic of conversation on my Facebook page called "Cheriz: Living with Cystic Fibrosis"  (consider "lliking it" to keep updated on everything) and I've also talked about it a little bit on my blog over the last 9-10 months. See, It's about getting a new Cayston Machine.  Cayston is one of the nebulized antibiotics we (CFers) can take to keep infections & the bacteria in our lungs at bay. For example: 80% of CF patients have psuedomonas aeruginosa in their lungs. I have psuedo & pretty much have my whole life. Other bugs CFers can catch and culture are: MRSA, Staph, and a particularly difficult one is Cepacia B. (burkholderia cepacia). I've never cultured any of those, only psuedo! So we take antibiotics orally and nebulized (daily or routinely) to keep our lung infections & spread of lung damage to a minimum.

For example I take zithromax (500 mgs) 3 x a week (Mon, Wed, Friday). I also do 2 doses of an antibiotic nebulizer each day. I always alternated every other month between Cayston and Tobi. Currently, I'm doing doing double doses to try to get my lung function back up. You see it has dropped over the last 6 months or so... and in fact my baseline is usually 58% ish and usually after IVs I jump up into the 60s! However, after this last round of IVs in Jan ( a month ago) my numbers didn't improve and I'm struggling to even stay at 50%. So doc has me currently doing Tobi & Colliston both every day ( so two doses of each).  So why are we not seeing an increase you may be wondering....

Well, I used to do Cayston & Tobi every other month. By switching them up my body doesn't build up resistance to either one and it switches up the fight. Kinda like switching up players in a hockey game! One drug is gonna wear down after a while, so we alternate. I've been doing this since Cayston first came to market. YEARS ago!

Then in 2014 I did some clinical trial where I wasn't allowed to do the Cayston. After that 6 month trial I went on Cayston again.  After only 2 days on the med my pretty little purple machine died and the Cayston medicine can only be done with the Altera Nebulizer System (AKA pretty purple machine)... So after calling back and forth ordering replacement parts for a month. The company that made it, officially decided it was broke and I'd need a new one...

Long story short, my insurance denied me for a new machine (which only costs $900) and they denied the appeal. So I haven't had Cayston in my system since before the last trial (almost a year ago). AND I've had to continually do Tobi every single day since September. my lung function numbers kept decreasing and by Jan of this year I could tell a HUGE DIFFERENCE in my energy, coughing, and ability to breathe.

I couldn't do regular errands walk through grocery stores, do loads of laundry, or keep up with day to day activities.  I kept waking up at night more than my usual 1 or 2 times. More like 4-5 times coughing and I just couldn't stand it anymore. So We decided it was time for a tune up! Yes, "tune up" like car maintenance.

So middle of Jan in 2015 I was admitted, 2 weeks of IVs, steriods, blood draws, 4 rounds of nebulizers a day. I gained weight in the hospital but lung function didn't increase. I went home on IVs and steriods. After the full round IVs only a slight 4% increase in lungs. Which I then lost and went back to where I was within a week from that...So I'm still on the steriods and have been doing 10 nebulizers and three vests a day! 

8-10am: Albuteral neb, Vest (30 mins), Hypertonic Saline neb, Pulmozyme neb, Tobi neb, Colliston neb
3-4pm: Albuteral neb, Vest
7-8:30pm: Albuteral, Vest,  Hypertonic Saline neb, Tobi neb, Colliston Neb

Doc thinks I need Cayston. And all while this is going on, he has been arguing with pharmacies to give me one for free. He thinks he has finally won the case and it should be arriving with the batch of meds I ordered. We are really hoping it will boost my lung numbers back up, give me more energy, and overall help my health. Of course, I have GI troubles too right now. My colon is cramping and inflamed again (like in 2013). Doc was feeling the area and said he thought it could be colitis or IBS. I dealt with these issues off and on for years. I've cut down my dairy, greasy, sugary foods and eliminated caffeine almost all together. I'm super careful about what I eat, how much I eat, and when I eat it. They did a colonoscopy in 2013 read about it here: Oh, the Joys of a Colonoscopy.

My intestines looked clean so no crohns, but she said it could be something else. Well, that episode ended and quieted down, so we put it to rest for the time being. Now, its back. Except this time I have really bad cramps with it, bathroom issues, and bad (like super duper) bad breath. Like knock them over dead bad breath and yes, I have good hygiene and no dental problems ever. So its probably infection related.

So our plan. DO all the nebs/vests (except Tobi) switch Tobi for Cayston 3 x a day along with Colliston (2 x day)- IF I get the Cayston! Plus, keep on steriods, take two regular doses of mirolax, and once I get into the GI specialist on Wednesday, we can re-evaluate and figure out what is going on in my body right now. Also, I'll be getting another liver test on March 9th.

Oh my body, its such a mystery.   I made this picture awhile ago for another post. But it sums up a lot of what is going on... Now, just sit here wait for the package of meds to arrive!

Anyway, the package never arrived today. I'm assuming the bad weather delayed it another night. Doc said my pretty little purple machine should be in there! But I won't know for sure until it is delivered and in my hands! Stay tuned on my CF Facebook Page or Twitter to know when/ if it arrives! 

2 comments:

  1. Would you be interested in going on an anti-inflammatory diet? Things like wheat, dairy, soy, etc. can really inflame your gut. Lots of people go on the Autoimmune Paleo Protocol (AIP) diet for a period of time and feel a LOT better!

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  2. I've had some non CF friends with Gluten allergies, and not eating gluten has really helped them. And It's amazing how many people today are finding problems with foods that are giving them GI problems. My Doc has been cutting things out of my diet, since I was kid, due to these problems. As an adult I don't eat greasy foods, (severely limit dairy) to one piece of cheese and one activia yogurt. I also don't eat or drink any caffeine (very Rare). I eat fresh fruit, potatoes, veggies, beans, meat, and that typical day to day for me. I take two probiotic pills a day too. Doc and I have ruled out our non-medical testing ways of figuring it out. I have family members with IBS, colon cancer, etc. So they want to do tests to be safe. Plus, with my history of intestinal surgeries we have to make sure that's not the problem again. I'm hoping something silly. LOL I'll let you all know,..I wish It went away with diet change. THANKS THOUGH! :-) A lot of people don't think about diets and food sensitivity!

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