How Cystic Fibrosis Laughs at My Attempt to Plan Anything

In a way, it seems so long ago that I was last in the hospital, but it’s really only been four weeks.

Home! But…Healthy?

I completed my two-week course of my antibiotics exactly one month ago.

Normally after getting out of the hospital, I go through a period of recovery – still fighting the bacterial infections that landed me in there in the first place, and then trying to regain lost strength and energy from being laid out for so long. My body also has to recover from the effects of the strong antibiotics that, while killing off the bad bacteria in my lungs, also causes problems to other organs and systems.

I would experience a time when I felt GREAT (comparatively). This time, however, I missed out.

Right before I left the hospital, my hubby caught a virus. A few days after returning home, I got it. Scratchy throat, ears, cough, 103.7 fever, runny nose – what I call a “rat cold”.

I was sick from the virus for about ten days, which abutted the day of my CF clinic checkup. Thankfully, despite having a rat cold, my lung function still showed improvement from while I was in the hospital, so I am pretty sure that if I didn’t catch the cold, my lung function would have been even higher.

Still, though, we were happy that I had made progress, and left the appointment feeling positive about the future.

Making Plans

The immediate future included two rather big events:

  • A trip to Las Vegas for hubby’s side business in November, that included two extra days for “vacation” fun. We thought that there would be enough recovery time after getting out of the hospital, that I should be “at my best” to travel.
  • The plan to finally start taking the new CF drug Orkambi. Because of the high potential for respiratory (lung) side effects during the first month(s) of taking Orkambi, my doctors wanted me to wait until I was sure I would be home just in case I need their help.

Throwing Wrenches

Wrench 1:

We haven’t traveled much in years due to me getting sick right before any planned trips. We thought I’d be in great shape come NOvember, which would have been 6 weeks after my hospitalization. I usually have a good 4-6 weeks of total recovery time – that includes still healing from the infections, regaining lost strength, building up my energy, and getting over any leftover side effects from the antibiotics.

The next day after my Doctor’s appointment, however, my lungs exploded with a new flareup of MRSA infection in my lungs. MRSA is a strain of Staph Aureus (which is a common bacteria that causes colds) that doesn’t respond to a widely used family of antibiotics. It’s a “Superbug” which is difficult to eradicate, especially in CF lungs, where mucus provides a warm, moist environment in which to grow.

In me, MRSA infection causes sudden fevers (as high as 103), increased cough, very thick, tin-tasting, yellowy-orange mucus, extreme fatigue, and localized chest pain. I go from “feeling unwell” to “feeling terrible” within less than 24 hours.

My doctor immediately started me on the bigger, stronger oral antibiotic, Zyvox, as it’s very powerful against MRSA.
I usually feel some improvement pretty quickly, but for most of this course (I’m on day 11 of 14), I hadn’t yet felt an overall difference.

Now what?

We weren’t sure if this meant that I’d end up back on IV antibiotics in the hospital. There are many reasons to not want to experience another 2-week IV course so soon afterwards.

  • The memories of some crisis moments are too fresh in my mind.
  • Having to take these super strong IV antibiotics that may and do often cause a lot of other problems (kidney injury, C-diff infection, diarrhea, colitis, rashes, and possibly allergic reactions) so close to each other allows less time for my systems and organs to recover, therefore upping the risks of recurrence.
  • My husband, who takes a lot of time to help me when sick, spends a lot of time with me and doing everything at home since I am not there, PLUS has to still work, just went through a month of helping me before and during this hospitalization. I’d like him to have some normal work weeks!
  • Finally and most importantly, someone would have to successfully place a PICC line somewhere in my body. My last PICC line placement took several attempt, and I ended up with a last ditch effort of doing a Tunneled PICC line which goes into my chest, is threaded through my jugular vein, and then into the heart.  NOTE: Yes, I have spoken to my doctor about getting a PORT, but we are still working on it.

Wrench 2:

The simple act of traveling, which would be an all-day deal going from East to West coast, demands that I am not only “not sick”, but actually in a really good place, physically. Should I have to go back into the hospital again so soon, even if it was over and done before we traveled, I’d still have to go through a recovery phase (see above). This risk alone was enough to seriously reconsider our plans, but then other things started to happen that just told us, maybe now is not the right time. two after we’d get back.

Given the virus I had, and then another MRSA flareup, I’m still not feeling anywhere near great, and I don’t have a strong feeling of which way this is going – it’s only 3 weeks until we would be leaving and that’s not a lot of time to play with.

So many things popped up, in fact, that they elicited a gut check – responsibilities at both Ken’s work and his side business, family stuff, and things related to the holidays all came up, needing time and effort dedicated that we wouldn’t have if we did go on that trip. I also always get sick after traveling, and I don’t want to be sick for the holidays. Again.

Whenever I have followed my gut, I have never been wrong. The times when I tried to “suck it up and go” ended being those times that I had to leave early and ended up feeling even worse, or stayed but felt pretty poorly, to the point that people had to ask “what’s wrong?”. And who wants either of those things to happen?

So we ended up canceling the trip.

I know that there is a minute chance that the stars will align and I don’t end up in the hospital again so soon, or that I don’t get sick after traveling, and that I would be able to do all the other stuff coming up, but there are too many unknowns.

There have been times that I got actively sick on vacation, and didn’t have access to a CF hospital, and had to manage medications over the phone across the country until I was well enough to fly home (I refuse to go into a non-CF hospital for CF-related issues unless it’s an emergency), and it sucked. Imagine having the flu, pneumonia and bronchitis at the same time. Yeah, now imagine having that and being a 5-6 hour plane trip away.

Oh, and you’d better bring every single medication you take with you on every trip, even a day trip, whether sick or well. All 25 of them with original bottles and pharmacy stickers, your machines (nebulizer, Vest), your monitoring equipment (Glucose monitor, blood pressure monitor, airway clearance devices, thermometer, and pulse/oxygen monitor), and fit them all into a carry-on (hint, you can’t) or hope the plane will accommodate you and store them accessible should you need anything.

Making Plans? Maybe next time…

This is what happens when we get even an idea of “going somewhere” or “doing something” – trips, concerts, etc. – that require planning. Anything more than 3 hours requires a whole bunch of planning on my end – so I don’t want to waste that effort. I always mitigate any excitement over doing something like the above with the thought “things might happen”. No, it’s not “worry” – it’s being conscious of my capabilities and limits.

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