Monday, March 18, 2019

CF Appointment 3.14.19

And just like that, another 3 months has passed by.  I headed to my CF appointment on Wednesday, March 13th.

I saw lots of my favorite people including the doctor, dietician, psychologist, and social worker - I didn't see the respiratory therapist though.  And I can't forget the CF nurse!  I truly enjoy seeing everyone and catching up on what's happened in the last 3 months.  I'm so thankful for a team that I feel so comfortable with and that I truly believe care about me.

I gave feedback on the Tobi Podhaler, which I was on day 8 of my second cycle using it instead of Cayston.  Like I shared in a previous post (here), I like it...a lot!

I brought up a side effect of the Tobi that I have some concern with - hearing loss.  Basically, I've noticed over the past year or so (not just since starting Tobi) that I can't hear people as well as I used to.  I find myself often asking people to repeat what they say or I totally just misunderstand.  I also think people mumble when they talk and that doesn't help me - annunciate your words people!!! So, I'm going for a hearing test tomorrow so we can see if I have any loss compared to my last test (which was over 10 years ago) and to get a new baseline of where I am.

Another thing I've noticed is my vision isn't a great as well - I'm not able to read things as far away as I used to.  So, I let them know I'm going to the eye doctor at the end of the month.  This getting old crap is for the birds!!!  35 has smacked me upside the head a few times with things I never even thought about before - acne, hearing loss, bad eyes...sheesh!

I'm going to be adding another supplement to my list - glucosamine.  Since I workout a lot, I do get stiff joints or some discomfort from time to time.  With having osteopenia and the risk of CF related arthritis, I wanted to make sure adding it into my list of meds was OK, and she agreed.  Like I said, getting old sucks! haha!

I was not able to produce sputum, so they gagged me.  We reviewed my cultures from December, and I had pseudomonas and stenotrophamonas too.  Damn it! Prior to December, the last culture that showed it was in February 2017.  So, who knows what that's all about.  I feel fine, so I'm not gonna fret about it!

So, here are my numbers:

3/13/1912/7/182/14/182/7/17
FVC100%104%103%96%
FEV192%95%95%88%
FEF 25-75%72%77%79%71%


Overall, I was very pleased.  Just a few percentage points dropped, but nothing to worry about.  I've felt great, been taking Claritin everyday because the pollen is INSANE!! If you have never encountered a spring in South Carolina, be thankful.  Everything is yellow!  It's just a miserable time to be here...when a breeze comes through, you just see clouds of yellow pollen flying through the air.  All cars look yellow no matter how many times you wash it.  We need some good rain showers to get this crap out of here!!!  I never used to be bothered by pollen, but that's one of the joys of getting older...every year it seems like it gets worse for my sinuses.

Other than that, nothing to report.  Staying on course with my Tobi Podhaler, exercising 6 days a week, vesting with hypertonic saline daily, and taking my pills & vitamins everyday.

And because it's been a while...here is a picture of my loves in their St. Patty's Day bandanas!




Monday, February 4, 2019

Tobi Podhaler Review

At my CF clinic in December (read here), my doctor and I discussed starting the Tobi Podhaler to switch up Cayston.  Just like Cayston, Tobi is used to treat the bacteria,  Pseudomonas Aeruginosa, that lives in my lungs.  Due to the holidays and our travel plans, we planned that I would wait until my next cycle to start (as I was due to start Cayston the week of Christmas).

Well, long story short...I started Tobi earlier than planned.  I missed the start of my Cayston cycle because I forgot to order it (like an idiot) and my insurance changed so that caused a slow down.  So, I said let's just go with the Tobi now being that I was almost 2 weeks behind schedule.

So, once I got my insurance straight and used the pharmacy they wanted me to (they switched that on me too!), everything showed up on January 8th and I took my first treatment on January 9th.  Thankfully my insurance is pretty good to me - my copay was $50.  Tobi also offers a copay assistance program that can help get the cost even lower!

Tobi Podhaler has arrived!
A box for each week, plus an extra Podhaler
Tobi Podhaler is a twice a day thing, so I waited until I got back from the gym that morning to do my first treatment...didn't want to risk having a cough or anything during my workout.

As my respiratory therapist explained, it would feel like flour/powder being thrown in your face on the first inhale.  And he was right.  All my medications (inhalers/nebulizers) are misty/wet when you breath them in, where the podhaler is dry.  So yes, I coughed, but not too bad.

What's the process?
The weekly box contains 7 packets of capsules and a podhaler
Daily dosage - white side is for morning, blue side for evening

There are 4 capsules for each use.  You insert the capsules (one at a time) into the podhaler and puncture the capsule but clicking the button.  Then after expelling all the air from your lungs, you take a deep breath in and hold for a count of 5 before releasing.  Take a few normal breaths, then do it again until the capsule is empty (each capsule has taken me 2-3 breaths).  Then you repeat for the remaining capsules.  Pretty easy!

It makes me cough just a bit, but not every time.  Like when I use Cayston, I take a puff of my inhaler a few minutes before to help keep the airways from getting too aggravated.  It's helped.  I didn't use it once, and I felt like I coughed more during and afterwards too.

Overall, I'm very happy with trying out the Tobi Podhaler.  I even told my hubby that I felt like I could breathe better and that my lungs felt more clear!  Thats a pretty wild thing for me to say as I've always felt like I can breathe fine.

The goal is to space out the treatments as close to every 12 hours as possible and this works out pretty well for me.  The minimum time that must separate treatments is 6 hours.  Now that I'm comfortable with the medicine, I use it in the morning before I head to the gym (usually around 8am) and then in the evening (around 8pm) while I'm watching tv and contemplating my evening snack...hehe.

I'm still using my Hypertonic Saline while I vest in the afternoon.  So it's still 3 treatment times in a day, but at least in the middle of the day I'm done after vesting!

Here's my comparison of Cayston vs Tobi Podhaler:

Cayston Tobi Podhaler
Frequency3 times a day, 28 days on/off2 times a day, 28 days on/off
SpacingAt least 4 hour gap between treatmentsIdeally 12 hours apart, no less than 6 hours
UsageMix the solution and put in a handset, then just breath until its gone.                Requires power supply.4 separate capsules that have to be switched into the podhaler.                                No power needed.
BreathingBreathe normalFully exhale and then hold medicine for 5 counts before exhaling
Side effectsCoughCough
Clean upHandset has to be cleaned and disinfected after use.Wipe mouthpiece with clean tissue and put it away


Overall Thoughts
Cayston - Nebulizing is easy!  The downside is that the packaging can cut your fingers when you open it. And when traveling, there are more parts that you need to take and have to sanitize (and require power to operate).

Tobi Podhaler - Very little equipment needed!  Downside is the powdery taste & dry feeling.

I think they both take close to the same amount of time to do the treatment.  However the cleanup of the Podhaler is much faster and easier!


Side note: I traveled with my Podhaler last weekend.  Typically with Cayston, I would keep it in my carry on bag to be sure it didn't get lost if my luggage went MIA.  Never had any issues.  With the Podhaler, I wasn't sure if I could take it through security because of the sharp part used to poke the capsule.  I asked a lady at the airline and she recommending checking it (as I was checking a bag anyway) if I didn't need it during flight (that's what I did).  So, anyone with knowledge on taking the Podhaler through security, I'd appreciate the feedback.

Tomorrow will conclude my first round of the Tobi Podhaler.  I'm definitely going to use it again for my next 28 day cycle!!  I'll start my next round the week before my next CF appointment, so I'll be interested to see how/if that impacts my PFTs.

I had said how I felt like I could breathe better, but my darn sinuses have been giving me issues the past week, so that's frustrating.  Hopefully I can get rid of this funk soon.  Thankfully, I feel great, just have some sinus congestion.





Wednesday, December 12, 2018

Recital, Med School & a Blog

It's been a busy week and it's only Wednesday!

On Monday, December 10th, I had my very first Piano Recital!!!  I talked about starting lessons in a prior blog (here).  I had always wanted to learn and now I know!  I'm still quite the novice but I thoroughly enjoy playing & practicing.  To officially knock it off my bucket list, I felt I needed to participate in the Christmas recital (yes, with all the other 6-10 year olds that are taking lessons).  So, along with my teacher, we selected "Have Yourself A Merry Little Christmas" for my song.  While it wasn't perfect, I'm still proud of myself for getting up to do it.  I was so nervous, and I have no idea why!! My heart rate was in the 120s prior to going up and I was literally shaking - haha!!  That may account for some of the flubs...hehe.  Enjoy!



Then on Tuesday, the 11th, I went to Augusta University to join my doctor in her Cystic Fibrosis lecture to 1st year medical students.  I think this was my 8th year joining in the fun.  She presents the nitty gritty details of CF - genetics, diagnosis, treatment, etc., and then I get up to give the class a good look at CF and tell them about my life and treatment plan.  I thoroughly enjoy the class every year!  We had two guys come up to us after class to tell us they too know someone with CF.  One was a close childhood friend that passed away about 4 years ago.  It was still very emotional for the doctor-to-be and he said that his friend was his inspiration to become a doctor!  The other doctor-to-be had a roommate at UGA with CF.  I'm always surprised (and excited in a weird way) to hear when strangers know another CFer!

AND also yesterday, I had a blog published through the CF Foundation.  You can read it here.

It's always an honor to be asked to share something with the the great big CF world.  There were a lot a positive and encouraging comments as well - which brought a smile to my face.  Its nice to know there are others out there that think like me :)

Monday, December 10, 2018

CF Appointment 12.7.18

The best way to start the holiday season is to get a great report at my CF appointment!  I wasn't quite sure what to expect since I battled a sinus infection around Thanksgiving.  I was living on DayQuil and nasal spray, just so I could feel like my head wouldn't explode from the sinus pressure.  Thankfully I felt fine other than my sinuses being clogged up - never felt anything move into my lungs! Yay!! That's always my fear - got to keep it out of my lungs!  I'd say I'm not 100% done with sinus issues, but I can survive off the medicine.  Just need to keep some tissues with me in my spin class - for some reason my nose starts running in that class...haha.

As usual, the appointment started with PFTs:

                             12/7/18     8/22/18     11/17/17     11/1/16
FVC                      104%          99%          99%             99%          
FEV 1                     95%           90%          89%             89%  
FEV 25-75%          77%           68%          66%             69%

I'm up some since August and even up just a bit more than I usually am this time of year.  So, that's cool to see.  I'm currently off my Cayston cycle - I'm right at 2 weeks off.  So 2 weeks to go and I'll start back - Merry Christmas to me!

My doctor and I discussed Cayston and having Pseudomonas Aeruginosa (that's the bacteria the Cayston treats).  There is another drug, Tobi, that is used to fight PA.  It used to be in a nebulized formula, which I actually tried 10+ years ago.  It tasted awful - I couldn't handle it...so I stopped.  Then I learned of Cayston and have been on that since.  Back to Tobi....there is a new formula that is used in an inhaler, the Tobi Podhaler.  It's putting a capsule in a device, the capsule is popped so a powdery substance is inhaled.  Its twice a day for 4 weeks, then 4 weeks off.

We discussed giving the Tobi Podhaler a try.  I won't start it in December since I'll be starting at Christmas - with travel and just overall craziness with the holidays I don't want to throw in a new medication.  So, I'll wait til the next cycle which will be in February.  Plus that will give me more time to get insurance approval and all that fun stuff.

We also discussed a trial that is starting for CFers with one copy of F508del and a minimal function mutation.  That would be me!!! I have F508del and 621+1G-->T.  So that's pretty exciting to see my mutation show up on a list of trials!!  It involves taking ivacaftor, tezacaftor and a new drug VX-445. You can read about it here: Trial Enrollment

My clinic was able to select a patient to participate in the trial.  While I would have been happy to participate, I wasn't selected.  Thankfully my lung functions are too high and I wouldn't be eligible.  While I'm bummed that I can't be a guinea pig, I'm more happy that I'm healthy.  The purpose of these studies is to determine if the drugs work...so its important to use someone that can see improvements from the medication.  So, I'm anxiously awaiting the results of the study!!

That about sums up my appointment.  I produced some sputum but not sure that it would be enough, so they took a culture too.  Yuck!  Always hated that part when I was little.

Happy to being feeling well!!



Thursday, November 1, 2018

Pupdate

It feels like forever since I've done a pupdate!  So, I'll catch you up on the life of my babies.

In September I had to take Sarge to the vet when we were up in West Virginia.  I noticed his one eye was starting to get a bit goopy, but it wasn't overly worrisome.  Until Saturday morning.  He could hardly open it and he wasn't himself, so it was definitely causing him some discomfort,  Thankfully we have a couple vet offices nearby our cabin, so away we went.  Turns out he had an ulcer!  Ouch!!   So we got drops, ointment, pain meds and some serum (they drew blood and spun it into a serum that you put in his eye - crazy!).  We then planned for a follow up back home in SC with our regular vet.  And when we did that, he was doing great and healing just fine!

As for Stella, she too had to go to the vet on 10/19 - the week before their scheduled bi-annual visit.  Of course, we couldn't hold off a week before getting an ailment.  Turns out she too developed an ulcer in her eye! WTF is going on?  How are these bullies getting ulcers?  Well, it could be from simply rubbing their faces on their bed or the floor, or also from something getting in the eye and then rubbing it.  Due to our backyard being a mess they don't have many places to potty at the moment, so they go back into the bushes a lot.  The leaves could be irritating their eyes - so we have stopped allowing that to happen.

We did the same process with Stella - eye drops, serum, pain meds. Unfortunately hers didn't heal as fast as Sarge.  I took them to their bi-annual visit on 10/26 and Stella's eye had actually gotten worse. My poor girl.  So, we took some fresh blood to make new serum and were to follow back up on Tuesday, 10/30.

At their checkup, all else (besides the eye) was great!  Good lungs & strong hearts!  They have gotten a bit overweight, so we need to lose a few pounds.  With all the meds, they get lots of treats so now it will be carrots for them! And now that the weather is cooling off, we can get outside and take some more walks!!

Hanging at the vet - look at those neck rolls!

At Stella's follow up on 10/30, there was some improvement in her eye - thank heavens!  If not, they were going to sedate her, and have her 3rd eyelid pinned up to help the healing...she'd be a 1 eyed pup for 2 weeks.  BUT, we didn't have to do it!! We go back Monday, 11/5 for another checkup.  Send my girl some happy thoughts please!!

Sarge trying to get Stella's attention!

Sweet babies

So fresh and so clean after a trip to the groomer!!

Wednesday, October 24, 2018

Anxious Much?

Generally, I'd say I have great mental health.  Thankfully I don't suffer from depression or struggle with the fact that I have CF.  I do stress out about some things that I have no control over, but nothing too bad...I think everyone gets stressed at some point, right?

I definitely have some OCD tendencies and am a germ-a-phob, so that can make me a bit anxious at times.   For example, tubs of butter can really irk me....mine is pristine without bigs hunks dug into it and we definitely don't have any crumbs in it.  I used to have a cow if I saw a nasty tub of butter, but I'm getting better! 🤣

The things that have been giving me some more anxiety mostly have to do with my house.  Granted we have almost lived in our house a year now, and we've spent a majority of that time having things done - carport, landscaping, and a swimming pool! All great things, but it makes for a lot of people around....and quite a mess!


1) I DO NOT like shoes being worn in the house.  I've gotten progressively worse about this.  I just think of all the places I go in my shoes and I don't want that in my house.  I mean public bathrooms are disgusting!!!  Yes, my dogs are on my floor, but I guarantee you they are cleaner than a public restroom.  If they get dirty feet, I clean them! It's a combo of the germs, the actual dirt being tracked in and scratching my hardwood floors.  Yes, again, I know my dogs run like maniacs and have scratched them...that is OK with me.

Just the other day we had some guys come fix something at the house and he marched straight through my house in his big old muddy boots.  I about died.  What did I do?  I locked him out and made him use the back door (which is where he needed access to anyway).  Too bitchy?  Oops!


2) I do not like letting strangers use my bathroom.  Now I'm sure you all are thinking, why would you do that?  Like I said, we've been in a construction zone for a while now.  We did have a port-a-potty in the yard for the long part of building, but not the last several weeks or so.  Then, you get asked if someone can use your bathroom.  What?  Drive 2 minutes down the road and go to Bojangles is what I want to say.  I mean if you just have to pee, guys can go behind a bush, right?  One was a lady, so we had some sympathy that she can't just whip it out and go on a bush.  So, we let her in.  BIG MISTAKE.  She took a dump, then proceeded to leave DIRTY toilet paper on the floor? OMG.  Thank God Will saw it first and cleaned it up.  I mean, don't you inspect to make sure you don't leave a mess, especially in someone else's house?  Then we had a guy ask me and all I could think was "he's got to shit".  So, I awkwardly said OK and pointed him in the direction.  He was in there for a while.  I wanted to curl up and cry.

Sure, this may seem like no big deal to some, but it totally freaks me out.  I had to go hide in my closet and do some organizing to get it out of my mind.  Not normal, right?  Thankfully we are just a few weeks away from being done around here!!!  I will have so much relief!! I can't stand the chaos, dirt everywhere, and the random people I will see in my yard.  I mean, I have to get dressed and put a bra on just to take the dogs out, cause I never know if someone will be in my back yard when I get up.


3) Dog hair drives me insane.  I could vacuum on the hour, every hour and it would still be there.  Why aren't bulldogs non-shedding?  Then they smudge my floors with drool.  I love those nasty drool balls of fur and would rather have the mess then not have them at all.  But, some days I just can't take it....so I vacuum and vacuum again.

Another part of the gross dogs...I got home from running errands and as I was taking my shoes off (no surprise there) and I see a big ole drool smudge on my pants. 🙈  Geez, wonder who all saw that on my pants?!?!  The joys of bulldogs!


4) Everyone knows I don't like flying.  Yes, I jumped out of a plane and that was totally different!  I don't like being in a live rocket flying through the sky.  I'm getting better, but just thinking about an upcoming trip makes me anxious.  So, if I fly...you know its something I really want to do or I'm going to see someone I love more than life itself!


OK - just needed to vent.  I feel better now 😊


Wednesday, October 10, 2018

Insulin, Blood Sugar and Counting Carbs...Oh My!


I think a majority of people can say they know what Diabetes is and the basics of needing insulin to help control your blood sugar. Kind of like CF, I take enzymes when I eat, but with Diabetes you need insulin.  Easy enough, right?

Hell no.  I'm an idiot for thinking that.  Diabetes is no joke and it's not for the weak!  I knew I didn't ever want to be diagnosed with diabetes because I certainly do not want to be limited on my candy intake (I think my body is about 75% candy).  But all joking aside, it's so much more than I ever knew.   Being that CFRD (Cystic Fibrosis Related Diabetes) occurs in 40-50% of adults with CF, I have a whole new appreciation for not having it!!

My nephew was recently diagnosed with Type 1 Diabetes, at age 5.  And let me be the first to tell you that this little dude is a rock star.  He hasn't let it slow him down and I am BEYOND proud of him.  Just when I thought I couldn't love the little guy any more, he shows me that he is so brave and can roll with the punches.

I went up for a visit a couple weeks ago and I basically got Diabetes 101 and Diabetes for Dummies all in one visit.  OMG.  You need a calculator when you eat!  You have to read every label.  If it doesn't have a label, you have to rely on google to tell you what you need to know.  I mean, how did we function before smart phones?

Each meal the steps are:
1) Check blood sugar
2) Count grams of carbs to be consumed at the meal (you need to measure and/or weigh the food....even little things like how much ketchup you dip your fries in!!!!)
3) Do a fancy mathematical equation based on the blood sugar results, desired blood sugar and carbs to determine how much insulin is needed
4) Then the insulin injection

Try that one day.  Measure how much you consume and calculate the carbs.  It's time consuming!!  What you think is a tablespoon is probably wrong!

He's still in the early stages of diagnosis, so things are probably a bit more complicated now versus in a few months/years when it's not all new.  But right now, every part of the day has changed.  He'll get one of those glucose monitors you wear all the time to save his little fingers from all the poking.  And eventually an insulin pump will help too.  But before all that gets started, it's the finger pricking before meals and bed, shots at meals and bed too.

Hungry between meals, a low carb snack is fine.  You want a granola bar?  Guess what, that's probably going to require shot!  I was a label reading machine - so afraid I would over carb my little buddy while I was babysitting.  Thankfully, we did good!!

I have a much better understanding of Diabetes, and still have a lot to learn.  I want to be sure to know the ins and outs so I can be sure I'm prepared when I'm with my nephew.

It was definitely a diagnosis you don't want to hear.  The consequences of your blood sugar getting too low or too high are scary.  But, it's manageable.  Just like with CF, you have to take care of yourself.  Do what you have to do for YOUR body.

On my visit, I was on my Cayston cycle, so I made sure he saw me do my treatments.  I showed him all the pills I had to take when I ate.  I wanted him to know that he's not the only one that has to do things a bit different than the rest.  I want him to know it's OK to take medicine to make your body work better.  It's OK to be different (personally, I think its even cooler to be different).  Diabetes will not define who he is.  Its just a part of his totally awesome package.

If anyone has any resources you think would be beneficial for me to share with my brother and sister-in-law, please comment below and I'll pass it on!

**Do not take any of the above as medical advice!**




CF Appointment 3.14.19

And just like that, another 3 months has passed by.  I headed to my CF appointment on Wednesday, March 13th. I saw lots of my favorite peo...