First, Waiting to get Better, Now Waiting for Fun!

I just wanted to write a quick update because things have been a little busy around here and you know how that gets..

After my belly issues at the beginning of March, I’ve been dealing with infection on and off and try to stay off antibiotics as long as I could. That was until about two weeks ago.

I had my regular CF clinic visit, ended my PFT tests, and my numbers were pretty good. They were pretty much exactly the same as they were last time… Not improved all the way back from everything I lost after my experiment of taking the new drug for CF, but it hadn’t gone down.

So when I came home a couple of hours later and I had a fever of 100.1, thought that said my streak is over.For seven weeks, I had experienced several episodes where my infections are flaring up and I had several days of strong symptoms, but you’re doing extra vest treatments and lots of rest and vitamins, and lots of fluids, I actually made it through without loading antibiotics. My immune system *sometimes* does work!

 

This machine measures how much air I can blow out in 1 second…and a few other variables…that help define my current acute and chronic lung disease.

 

By Wednesday and Thursday everything started ramping up and I just knew that I was not going to make it through this without at least some oral antibiotics. My sputum culture test showed that my MRSA I was growing and when the highest rates of plan, so my doctors focused on treating that with a single oral antibiotic.

Day 8

The first week, I got about halfway  better, so I wasn’t sure which way this was going to go – sometimes they change meds, sometimes they add them, sometimes they have to admit me for IV antibiotics. I spoke to my doctor on day 8, and we decided to wait to change anything. But overnight Friday, I started having anxiety – which is common for me – but it was like adrenaline rushing through my veins.

A full blown panic attack.

I tried everything – meditation, medication, relaxation, music, movies, silence, petting the cat.

It continued all day Saturday.

It was the physical sensation of my heart pounding adrenaline and blood very quickly through my veins…resting heart rate WAY too high. Walking to the bathroom. Getting up the stairs. It rarely dropped below 100, even laying down, silent and immobile.

I felt like I had been fast walking for days now, with zero break.

 

Long story short and thanks to pharmacy information, we surmised it was a side effect from my antibiotic.

Sunday morning, I sucked it up and called the on call doctor (although it was likely she wouldn’t know me). She didn’t seem very concerned, said that “if you feel more comfortable just go to the ER”.

I didn’t feel horrific enough to go to ER (seriously, I save that for when I needed immediate medical attention). This sucked, but I’d had worse episodes of Tachycardia – up to 214 – so while this felt urgent, I was not feeling in immediate danger.

My hospital uses an email system and I wrote an email to my doctors, telling them I called the on-call doctor because that this was going on, and that I while I knew that they probably wouldn’t get this until Monday, I just wanted them to know what was happening and that I did stop the Antibiotic…because my gut and my brain told me to.

I spent most of the day resting, doing things that were quiet and kept me from moving around and getting startled or upset. Intermittently, I also did some gentle Pilates stretching to help burn off some of the adrenaline infused energy that I was feeling. Ken would put on soothing music for me when I wanted to try to rest, and then when I needed a distraction he put on one of my go-to movies when I feel terrible… “22 Jump Street” because they freaking CRACK ME UP.

By a miracle, one of my CF doctors actually saw it and called me at 10 o’clock at night, to speak to me because he knows me very well and knows what’s typical for me. He said to stop the medication (which he confirmed was the best and most logical first step) and I told him that I was already seen my regular doctor Tuesday, so she could check me out.

By nighttime, things had calmed down considerably, and I just felt very spent. Spent Monday resting in making up for the fact that I hadn’t eaten all weekend. And when I saw my doctor on Tuesday, she did a walk while connecting me to the heart monitor and oxygen monitor and everything was fine.

Tick tick tick…

My ticker was okay, I didn’t feel any rebound infection….but now I had something else to count down to…

Why was I so intent on feeling better?

 

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For these people…Toni’s Titans…My friends, family, my TEAM!

Well… I am excited to announce that… knock on wood… As far as it looks right now, I will be able to attend the CF Foundation Great Strides event TOMORROW! (we missed last year due to hospitalization).

 

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Our donors!

Thank You to all who have donated to a cause that does not personally affect you…
Thank you to all who have shared our message in hopes of reaching others…
Thank you to all who have joined our Team – in spirit and in person –

We have raised $1550! And we expect our team to top out around 24 or 25 people! If you’re still interesting in donating or joining, click the above link! I cannot wait to share all the fun!!

 

Putting a Face to a Name…

I worked very hard to fundraise this year. Without having been able to hold our annual personal CF Dart event, we didn’t have as many resources to find donors. I logged hundreds of hours trying to drum up support in every possible direction
You see, I feel that I need to pay them back in any way that I can.

You see, I am thankful for the Cystic Fibrosis  Foundation in great part, due to all of the fundraising, the development, and work getting drugs to market…

…While they do not directly work with the patients, their goal is to help their patients by helping them live longer better lies and possibly growing old.

…They provide the tools, the resources, and the support necessary for patients to see an accredited care center, access resources in the community, and work with drug companies to help obtain the medications that patients desperately need.

All of this has been an integral part of me surviving 44 years old with this previously referred to as, “childhood” disease.

So thank you, Cystic Fibrosis Foundation, for how much you have helped me live a longer, fuller life.

I apologize to any friends who are sick of hearing about the event and “Facts about CF” during Cystic Fibrosis Month. The thing is, most fundraising is done by private companies and individual donors like YOU. YOU are the heartbeat of this foundation. Without your generosity – time, money, effort – where would we be?

Thank you.

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