I'm determined more than ever now! I had CF Clinic on Tuesday. If you didn't get to see our vlog that Andrew & I made afterwards, check it out on YouTube here!
So yes, we are pretty happy about the step up in lung function and my stable weight. It doesn't mean I can slack on meds or stop trying so hard. There is no break with Cystic Fibrosis. But a good clinic gives us hope. Andrew & I hang onto every good clinic we can. Especially since lately my health has been a yo-yo, always going up & down. I'm hoping to break that cycle and continue upward.
I want to work my hardest during my nebulizer treatments. Believe it or not, even though I do them all, I get os used to them that sometimes I forget to breath them in. I put them in my mouth and start chewing the mouthpiece and breathe through my nose. I don't even realize I'm doing it. It's a horrible habit. I'm also excited it is warm out again!
That means I can start walking (and trying to jog) more often. I am preparing for my first 5k of the year on April 22nd! AND it is a 5K for Cystic Fibrosis near where I live. If you live in Central Illinois make sure to check it out! More info is on their facebook page HERE!
I'm also going to get back involved with the PiYo class in town and even start working out as much as I can.
As Dr. K said "this is only step towards 60%" -which is the ultimate goal. Also he would like me to reach 115 pounds. I am hesitant, considering how short I am, but I made a bargain to gain it. He made a good point that I can gain muscle & gain it slowly. I do agree I need to be at my healthiest!
And I haven't forgotten about those surprises I said we have to announce soon!! Keep tuned...
For everyone celebrating Easter, I hope it is a beautiful Easter!
Thursday, March 30, 2017
Lately, I have been posting A LOT about CF. Yes, this is a blog about my life with Cystic Fibrosis. and yes, CF affects almost every aspect of my life. BUT... It is not my whole life. So I wanted to take some time to talk to you about the non-CF stuff that has been going on.
We have a lot of exciting news to share with everyone.
First of all, we have been very busy lately updating our house a bit. We bought our bungalow in June of last year (2016). It had a lot of the rooms that needed a bit of TLC. The original wood, doors, windows, floors made it all worth it. We tackled the living room & dining room first. Yes, we still have a few things to add & do in those rooms, but overall I'm very happy with how they turned out:
We are currently updating our bedroom and the bathroom this week! Pictures coming soon! I promise! Next, we will be turning our 3rd bedroom (from it's current laundry room state) back into a bedroom. Then we will updating our 2nd bedroom too! These will all be done before end of May!!!
Otherwise, Work is going okay. I had another closing last week! So far I have been primarily working with first-time home buyers and I love it. I love being able to help someone purchase their first home. For Andrew and I we hope our first home turns into our forever home! I'm expanding with work and doing more workshops over the summer. I recently earned more certifications, which I will be posting those on my business facebook page soon! I've been really focusing on helping people find agents where they live. My referring an agent to someone in another state, costs that person no money. Plus, I find them an agent that fits their needs & they feel comfortable working with. I did quite a few referrals in 2016 and hope to double that number in 2017. So if you need an agent where you live, contact me (Cheriz Kunkel, Jim Maloof Realty) on my FB page!
There are lots of other big surprises being announced in the next 2 months but we have to wait to share them!
Hint: Work and Family related.
Also, I'm currently working on a new blog site. I love my cheriz.org blog. VERY much, but I have a husband now. It's not just my life, it's OUR life. Also, our lives are much more than just CF. While CF is probably the biggest contributor to my blog, we would love to expand it to talk about Andrew & I's life together. Focusing CF, Work, Home, Life, and everything in between! I will have a lot of upcoming posts about this, when we are ready to navigate to the new site!
Also, we road tripped to Carmel/Indianapolis, IN on Tuesday-Wednesday. I gave presentation about CF to high school students. They asked a lot of great questions & I was happy to educate them on CF, the CFF, my life, and our mission for a cure! I will be posting it on YouTube in the next few days! While in Indiana, we toured the James Whitcomb Riley Home and we ate a few really good restaurants. We like to always tour a historic home and eat at "Diners, Drive-Ins and Dives" restaurant when we travel. We were thrilled to do both!
It was our 5th Triple D Restaurant & our 3rd historic building together (I've been to quite a few more than he has...). We had a great mini-trip!
We even managed to have my Orkambi shipped directly to the amazing Bed and Breakfast that we stayed at. This will be our last overnight trip for 2017 most likely. But we hope to do other day trips in the summer!
I will keep everyone updated on the big news in the next few months & will let you all know how my CF Clinic on April 11th went!
Sunday, March 26, 2017
Are you a mom, wife, husband, dad, brother, employee, volunteer? What do you do every single day? What does your life look like?
Here are the things I do to remain healthy:
- I keep my weight up (eat a ton of calories a day around 4,000 a day. Since Orkambi I don't have to force myself to eat, because I'm always hungry. I take around 15 enzymes a day to help digest all my food).
- I take 5 vitamins a day (including over 50,000 units of Vitamin D per week), still they always seem to be a little low.
- take zithromax (the only oral antibiotic I'm not allergic too). I take zithromax (AKA: z-pack) 3 x a week. This help keeps the bacteria (CF germs) in my lungs under control and helps with inflammation
- I take two inhalers daily. Spiriva & Advair (the 2nd is a steroid) and both help with the "asthma type" component to my CF.
- I do at least 9 breathing treatments (nebs) a day. I do 3 Abluterol, 2 hyperontic salines, 1 pulmozyme, and then my antibiotic nebulizers (3 Cayston or 2 Colistin or 2 Tobi). Lately I have been trying to do 4 albuterols a day (like I do in the hospital). I have to switch up the anitbiotic nebs every month to keep my CF bacteria from becoming resistant to it. However, in the last 3 months we found out my Psuedo is resistant to Cayston. Which means I'm switching just between Tobi & Colistin now. Each neb takes an average of 10 minutes to breathe in. They take 10 minutes to wash properly after each use (Then I sterilize in Wabi for an hour- kills psuedo/other germs in the water). That's 2 hours of my day just for nebs!
- I do 2 vest (chest percussion) treatments a day. I wear a vest for a 30 minutes a time. It shakes me, helping the gunk loosen off the lung walls (allowing me to cough it out & breathe better). I struggle with this (due to my small airways- we think from being 12 weeks premature).
- drink nutritional supplements. I try to get my calories by food (avocados especially, yum!). But I usually drink at least 1 ensure a day (2 if I'm on-the-go).
- I'm also taking Orkambi (since October 2016). It's a gene-targeting drug. It helps make the CF defective gene work about 20% more correctly. It's a not a cure, but a step in the right direction. Orkambi has to be taken 12 hours (9am&9pm) apart and with 20 grams of fat. It makes me very hungry all the time (doubling our grocery bill per month).
- Once a month I get my mediport flushed (with a needle and saline) to maintain the flow (to keep it from clogging). A Mediport is an automatic IV line. It directly channels into a major artery in my neck for IVs. We can not draw blood off mine (due to another medical problem I have). I had it put in at age 12 after exhausting all options (Ivs in between my toes, legs, arms, hands, even on my head once). I have had a few regular IVs since. typically it's 4-6 tries before getting an IV started.
- Blood draws, labs, tests, scans, are very routine. At least one per every other month (almost every month). I have 1 good vein left, I get all my blood draws off that one spot. In a hospital after 2+ draws per day its start to build up some scar tissue though, so they baby it more.
- Doctors visits. I have been going to clinic typically every other month for the last couple years ( I have been struggling more for the last few years).
- Working-out is what I struggle the most with. I walk 5,000 steps per day and I have been doing a PiYo class (30 minutes) 1x week. It's not enough, but it's all I can do right now.
Having 3 pharmacies, and 20 prescriptions per month is a lot. Adding in the 2-3 hospital stays per year. I typically stay in a hospital for 3 reasons:
- I'm having surgery: I have had 4 bowel resection/intestinal blockage surgeries. I've had 5 hernias, 2 mediports, 2 stomach feeding tubes, surgery on both my eyes, and wisdom teeth (if it counts as a surgery). I've had a bronchoscopy, endoscopy, colonoscopy, and a camera inserted into my groan (run up through an artery... That one was my favorite. I was awake, it felt like a
- I have pneumonia, lung infection, a virus, or even the common cold. Yes, a cold can turn into something real nasty very quickly for someone with CF.
- My clinic results are very low or something may be going on and we aren't sure what.
For example: In November I was admitted due to my lung functon dropping to 32% -we thought it was due to my starting Orkambi. But since my baseline from 2007-2016 was between 50-55% we knew something was going on.
When admitted I am on many medications. I'm always usually on 2 IV antibiotics: Tobramyacin (which comes with bloodwork to keep an eye on my levels) and Zosyn or Meropenem. I'm allergic to Keflex, Bactrim, and the Levaquin/Cipro family. Plus, my psuedo is resistant to Cayston/Aztreonam. So it gets a little tricky for us once our bodies start to become resistant. I'm surprised and lucky I even have options at my age with all my allergies.
Even with doing everything we are supossed to, still sickness happens, refill gets missed, insurance won't pay for a med, etc. Our health sadly suffers each time. I have been 32%-48% lung function since April 2016. Meaning my baseline technically in the last year has been 40%. I refuse to admit it and still hope it was just a bad year. I want my lungs to get back to 55%. Only time will tell. The lower they go and longer they are low the harder it is to recover lost lung function (permanent damage and scarring happens).
Everyday I have meds to take, nebs to do, vests to do, nebs to clean, food to eat, chores to do, errands to run, pharmacies to refill meds, meds to pick up, a career to handle, and house to clean. I feel as if every single minute of my day is busy with things I have to do. I have always had this kind of schedule, so I have learned to deal with it. My family & friends always understand when I just don't have time to travel to see them or have to do meds at their home.
Right now it just seems it is a bit more difficult. Insurance problems with Colistin combined with the weird weather has dropped my lungs to 37%. Hoping April 11th I will get good news and be back up somewhat (enough especially to do the clinical trial that is coming up).
This is what life is like in my shoes. Please help us cure CF. Spread Awareness, Share our Stories, or even donate to the cause!
Thank you for reading and following my Blog & CF FB page!