Sunday, March 1, 2015

Great Conversations & my lil Rehab

It Gives Ya Hope:

Hope, what? I'm never not full of HOPE right?  No, I always have hope, even when I don't think I do, Sometimes all you need is a reboot, being around family or friends, or just certain conversations.

I came home (to my hometown/ parent's house) this weekend. Yes, I call Princeton, home still. But in my defense, I also call my current apartment my home too... I was excited to come visit! My sister, dad, mom, and I don't all get together as much as we would like to. Sadly, Andrew didn't get to come with me, he had to work all weekend. He's saving his time off for 1: our wedding (this August) and 2: any future medical mishaps I have (where he has to take off work) AND you never know with me. So he was bummed to not
be able to visit, but Mom, Dad and I skyped with him last night. hahaha. It was hilarious. Mom sitting in front of the computer in her armchair and me and dad stooped over to get our heads into the camera view. Haha.

Ada was even home for a bit (before the weather started getting bad), and overall, it was just nice goofing off, chatting, and being lazy around my folk's house! We all hang out in the living room, dad sprawls across the couch, mom has her little chair/ ottoman, surrounded by her enormous amounts of yarn for crocheting. Then usually, Andrew and I will sit on the little love seat and make Ada sit on the couch by dad. And its sooo silly, but just thinking that makes me smile. Some of my favorite memories or trips are home, are when we are just hanging out and chatting in the living room! Plus, Ada, Andrew, and Mom love to bake (so there are usually goodies). I like to lick the spoons of course....Haha, I help, but I cook more than bake ;-)

I'm so glad I came home a little early before the lunch meeting and got to spend time with my sister. I loved all the time I got to spend with my family this weekend. Also, the lunch meeting I had scheduled went great. I met with another Team Leader who is doing the Great Strides Walk in Princeton, IL (yay!). I'm really trying to get about 5-6 teams to sign up, with at least 150-200 people total in attendance this year! Last year was the first year for the walk (read about it here), this being our 2nd year the CF Foundation listed us as an official Great Strides Walk site! however, I've been doing great strides walks since 2008. I formed a "real" team in 2012 and it doubles or triples every year (so far, I'm very lucky to have such good friends, family, and community). So this Team leader met with me to pick my brain a bit and learn more about CF  & me. He had lots of great ideas and it was a great way to start our Great Strides Season off! That's right so much more to do! I got the sponsor letters, donation letters done, etc. But still so much more to do!

So Saturday was full of great conversations, things to look forward to and so much more. Last night, I hung out with my family ( who doesn't love hanging out with my parents) and friends in Princeton, even got a nice piece of blueberry dutch pie from my favorite cafe!

However, there is one conversation that is sticking with me that I had last night. I'm so glad we got on the topic of working out. Here is where you may want to scroll down or read my last post (here). As you can tell I've been struggling with lung and GI issues. I'm going all my meds ( 11 breathing treatments a day) and was on IVs for awhile. Well, I'm not excepting this lower number as my new baseline for my lungs. There has to be more I can do. Well, I did need that machine to use the Cayston medicine that my body needed and had been without for months!  YAY!  So I added that med into my routine, but still I'm not satisfied. I want my 60% lung function back. Well, last night someone asked me to do a walk/jog 5k with them in May!  It supports Colon Cancer too (which my uncle had & beat in the last 2-3 years). So I love this idea. It gives me something to work out for that I'm passionate about. PLUS, I wanted to do the 5K for ALS in July. However, more people run that one and I thought for my first 5k in 3 years I wouldn't be able to do it! But with my first one being a slower speed in May and a 2nd in July, I should be okay!

I further discussed how I have trouble working out. When I'm sick I don't work out, cuz I'm exhausted and not feeling well. Well, after my typical 2-3 weeks of being sick, its like starting all over again. Almost like my own little rehab. I also have super tight muscles from my Cerebral Palsy, and bad joints and bones from Arthrtitis. My hips pop in and out of place a lot. So I have to be careful. Its takes me sooo long to train and work up to walking even a mile. Let alone a 5K. But last night someone said to me not to get defeated when my first time back on the treadmill in months seems small. I can only do a few minutes, before I'm huffing and puffing.  Usually I get upset and don't go back to working out for another week or two, repeat, repeat. So nothing is being done. They told me to keep doing just that 5 minutes everyday for a week. Then do 10.... Start super small. It's gonna get frustrating, but with one 5K supporting Colon Cancer that my Uncle had and one 5k supporting ALS (which my friend Sean has. He guestblogged on here before), so I know I won't give up!

And why is this soooo exciting??? I'm hoping this new exercise routine will pay off big. I mean in 2012 I was my healthiest ever. jogging at night, being able to work part time, keep up with meds, weight was 110 lbs and lungs around 60%. I felt great, at the time I didn't realize how good I had it. Now I'm 48% and only 100 lbs I can tell I struggle more to breath, and do daily activities. So I need to give this go!!!!

Please help me, ask me if I'm doing it or how it's going? I need help to keep me accountable! I've had a roller coaster of a 9 months and I'm hoping this may help me turn it all around.

Plus, I want to be the healthiest I can when I marry Andrew, to start our life as a couple with me in the best health I can. That is the single greatest gift I could give him! Love him! 

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! 

Monday, February 23, 2015

Not the Outcome I Wanted

Doc appointment: 

This is gonna be a quick blog post. I just got home from the Doc's and I'm super tired. So here's the update. Mid January I went into the hospital and was on IVs for 2 weeks (my pft was 48%). After the hospital/ IVs it only went up to 52%. So doc added some nebulizer antibiotics. Today I had another check-up and my lung function tests were low. Like lower 40s. So Doc had me take a couple puffs of my albuteral inhaler and retry the pulmonary tests, they went slightly up (around 49%). So pretty much the hospital & IVs didn't do anything,  and neither did the Colliston nebullizer.

So what now? Well, Doc wants me to continue the Colliston & Tobi, but add a 3rd albuteral & vest per day. So that means 5 nebs, half hour vest in morning, 1 neb & half hour vest mid day, and 4 nebs & half hour vest at night.  Picture right: My night meds tonight!

Also, I'm going to be going back on prednisone (20 mgs a day) for another. Meanwhille, I'm going to try ordering that Cayston machine (I've been needing for the last 9 months, but insurance refused) tomorrow. Once I get the machine & nebs (hopefully) I will be switching off Tobi and going on Cayston 3 x a day instead.

So that's the lungs part and Doc's plan. I'll go back on March 9th to see if I've made progress, if not then we will dicuss other options. But Doc's hoping that since my body hasn't had the Cayston, maybe this is my lungs way of repsonding & thinks getting it back will help!

For the other stuff: As you know I've had lots of GI issues and abdominal cramping, bathroom issues, and more. Well, doc asked a lot of question and when he felt my abdomin, I guess the spots I said were tender might indicate to him colitis or something similar. He referred me to a GI specialist and wants me to make an appointment for this week if possible (or next week). So hopefully, the intestinal issues will get resolved soon.

Also on March 9th we are re-testing my liver numbers to see if it is still getting closer to normal.

Lungs, colon issues, and liver. I think that pretty much covers it.

So even though the news wasn't what I wanted and I am frustrated, at least I'm on track to perhaps get some answers and finally resolve some of the problems. I'll keep you updated.