Hurricane Holly
December 2022 Intensive
Game Night Fundraiser

Last July I was able to try out the medical grade cold laser on my lungs and cerebellum. I went into the experience with a blank slate. I didn't know what I could expect and so I had no expectations, however, I could feel the difference after just 30 minutes! After lasering my cerebellum, my hands were less shaky. The morning after doing my lungs was the best morning (from a respiratory standpoint) I could remember having. 

The year (approximately) since then has been very different than the year preceding my first use of the laser, so again I went in with no expectations. To my surprise, not only were my mornings better, but so was the rest of the day and night! Upon waking, I felt as though my lungs didn't hate me - for the first time in forever. I coughed and still needed to do my usual breathing treatment (1 hour of Vest and 6 nebulizer medications), but everything I did seemed more effective. One morning, because my lungs felt so much better, I even showered before starting my treatment! I literally cannot remember the last time I did anything before my treatment. I still coughed during the day, but it was much easier to move the mucus.

As of the last 6 months or so, Cayston (one of my nebulized meds) has caused more and more airway constriction to the point that after my midday dose, even after doing my albuterol inhaler I struggle to breathe well and I count the hours until I can do my next breathing treatment and open my airways up again. This week I had to run from the clinic back to the house to do my Cayston (because I forgot to bring it along). And (because I'm forgetful), I had to wait to do my albuterol inhaler until I got back to the clinic. But by the time I got back to the clinic I'd totally forgotten about doing the inhaler because I was just breathing.  J U S T   B R E A T H I N G ! ! !

I slept more deeply during the nights because my lungs weren't distressed - even when it got rainy and humid! Even today, over 24 hours since my last laser treatment, I can still feel the difference. It's an amazing feeling to just breathe, to feel as though my lungs are not my enemies, to do my treatments and feel the increased benefit. It literally brings tears to my eyes to think about it - about the blessing of the experience and also having to go back to life at home where everything is as it was before. Some effects of the laser are, as I've been talking about, near instantaneous while others are cumulative.

My CF clinic and I have just come to the conclusion that my month-on/month-off antibiotic Tobramycin is not only no longer helping me, it's actually hurting me. In 2 weeks, my lung function dropped 13 points and I've been really struggling with shortness of breath and the sensation of drowning in mucus, not just in the morning, but all day long. And this just after finishing a round of IV's and getting my lung function back up to baseline. It's been a long 9 months of trials and tests, but it's pretty definitive. The problem this presents is that I now only have 1 antibiotic I can use month-on/month-off and I have no antibiotic coverage for the in between months. I have recently been struggling with the remaining antibiotic as well, though not to the point that I have to stop it - yet. What this means is that I have only the one medication to try to keep my colonized pseudomonas in check. I've had a whole year out of the hospital, but I have no idea what this will mean going forward. 

This is just one reason why pursuing FN is so important. It works through other methods. And, we've already gotten a glimpse into how effective they are in treating my CF and brain injuries. Recently, in addition to the improvements I've already written about, I realized that since we've begun the work with Dr. Isdale of The Austin Center for Developing Minds my stomach cramps have stopped and I've been able to shop at a big grocery store nearby. The shopping thing may not seem like a big deal, but let me explain. Two things - there are a lot of household/homemaking things that I'm no longer able to do, but doing the grocery shopping is one of the things I still can. Before chemo and Gamma-knife for the second brain tumor I never had a problem doing the shopping. Soon after starting I began to really struggle with getting overwhelmed and stuck in that fight-or-flight mode. I would literally get stuck in the middle of a store (especially a big one or one that was new to me), panic, and have to leave immediately abandoning my cart and all the energy and work I'd already done.

It's been 9 years since I finished chemo. If my brain was going to heal on its own, it would have by now. I haven't seen any improvement until starting the FN protocol phase 1 in January! Now, shopping at this big, new store is really no big deal to me. I've even been able to help a friend who was struggling to shop there!!! Not only that, I literally could not shop there a year ago. I tried and got stuck and had to leave. I tried several times with the same result. And now I think nothing of running in! Praise God for neuroplasticity!

Today I began my second month without an inhaled antibiotic. I have no expectations for how this will go, so I’m just waiting to see.

I have really enjoyed and been blessed to feel well lung-wise for 3 months in a row! I am continuing my FN protocol including using the far infrared lamp on my lungs.

For over 5 years (I can’t remember exactly how long) I had been on inhaled antibiotics constantly, alternating one on odd months and a second on evens. I am still taking Cayston (nebulized aztreonam) during my odd months.

Update From A Better Me, Naturally!

Holly is scheduled for an intensive this December 11 - 14.  Intensives are great because we can accomplish so much in a relatively short amount of time.  Holly's job is to continue with her home care plan to keep the gains made and to continue to push forward as she can between intensives.

This is a particularly important time for Holly as she now is only able to use 1 antibiotic.  The danger of opportunistic infections getting a foothold is very real.

The fundraising goal is to provide the intensive, a new tool for Holly to take home and implement in her home care plan and travel costs.  $2,000