Full-time Patient

A few of my online CF friends have "full time patient" or "works at CF" listed as their careers on facebook. I used to kind of snicker when I saw that. Like, seriously, I've been the patient for years and I still manage to have a very full and productive life that does not revolve around CF - spare me the drama.

It's the same for some healthy people who may see "full time mom" listed as a career and think, seriously? That's all that defines you now? That is your life work?

But now I understand. Because CF really and truly has become my full time job. It takes me a minimum of 2 hours to get out of the house to do anything in the morning - and I'm often late to everything these days. I am trying to get a fourth vest treatment in every day. On the days I have pulmonary rehab (Tuesday and Thursday every week), it is amazing if I can get anything else done that day...doubly amazing if I have the energy to BOTH go to the grocery store and cook dinner. I used to run "errands" but now it's more like "errand."

But my home is still my castle. And even though things may pile up for a couple of days, I still manage to keep things looking decent, especially for visitors. Really, I have to or I would go insane.

And I have so many appointments...  I try to give myself Mondays off, a day to catch up on phone calls and house work. For example (and this past week was pretty light) Wednesday, had I not started on IVs, I was going to see my shrink and acupuncturist. Friday, I had both Tobra levels and a gynecology appointment at the same time! (first time for everything) Then in the afternoon, I drove to Chapel Hill to have a Doppler scan to make sure the pain in my arm wasn't another blood clot (it was not - thank god!!)

Oxigination

Sometimes I try to step back and see how much my life has changed in the last three months. Coincidentally, this is the amount of time I have been on short-term disability from work. I SO wished the extra time dedicated to my health would have me in better, not worse, shape than when this all started. But sadly that's not the case.

Probably the most obvious changes are a constant nasty cough and the need to wear oxygen more and more of the time. Well, and my depleted energy, but that's not always noticeable to people if I'm acting like my normal bubbly self. I am trying to embrace this new roll, but it isn't always easy. And I've learned pretty quickly that I have to let a lot of things go - whether it be house work, a non-essential errand, or that thing I've really really been wanting to get done but just haven't had the time or energy.

My biggest challenge right now is the mental game, though. I continue to research everything and visualize the possibilities that lie ahead for me - both good and bad. I want to try to prepare myself as much as possible. I know that things are going to get much worse still, and I want to be able to accept things as they happen.

I am aware of all the scary possibilities, but that doesn't mean that they have to happen to me, or, if they do, that they have to be scary. Not sure if that makes sense. I am training my inner Zen master.

On surgery and such

Big lapse of time since I last wrote. I wanted to pick this up again because I like keeping people informed of my health but I don't think that everyone I am friends with on facebook necessarily wants to know about all of the details. So I will write the details here, and then link to it on facebook so that people can choose what they want to read.

Back surgery was a success!

Recovering with kitty

Because of an extremely bad flare-up in April that left me with a decent sized portion of my right leg being numb and scarred from the amount of pain that I had been in, I decided to go ahead and have the microdiscectomy surgery for my back. Surgery was on May 22 at Rex Hospital. Everything went very smoothly, the general anesthesia was not an issue and I was home the same day.

I have had very minimal leg pain since the surgery, so I have good reason to believe it was a success - although, I have not yet gotten back to my baseline of exercising. Unfortunately the numbness has not gone away or decreased at all, but I can live with that over pain.

  Bandage still on

Bandage off! (day 10)

The hardest thing about the surgery was following the restrictions afterward. Pain from the procedure was really minimal. I was on pain meds for a few days but then it really tapered off. I was feeling so good that I wanted to do as much as I felt like I could...but had to constantly pull back and remember that I really needed that initial time post-surgery for healing.

A few weeks after surgery - and, I believe, unrelated to the surgery or anesthesia - I started having some shortness of breath and feeling really tight, like with an asthma flare-up. I did everything I could think of to try to remedy this. (For three weeks after surgery I could do no exercise except walk so this possibly could have contributed.) I had a lung appointment but we didn't think it was good idea to do PFTs so soon after back surgery so all we knew was that my oxygen saturations (sats) were a little low, that I was having the shortness of breath and that I was just starting to be able to exercise again.

View of Grandfather Mountain from the Blue Ridge Parkway

Mountains, Ho!

We went up to the mountains with a friend the following weekend. I now see the mountains as a very good litmus test for my lungs. If there are problems in Raleigh, there are most certainly going to be problems a few thousand feet higher in a musty mountain house! My sats were terrible as soon as we got up there. We went for a hike on Saturday and (honestly, I was probably de-satting, although I pumped myself up with Prednisone so I was able to do it without too much shortness of breath) my breathing was efforted enough that I was again starting to think about wanting/needing to get a portable oxygen concentrator that I could have in situations like this.

Silly self portrait with Todd tying on a fly at the fishing hole/waterfall we hiked to

When we got back to Raleigh, my sats, which I was now paying very close attention to, were still in the low to mid 90s - I am usually at 98% or 99% when healthy. I thought this might be a good time to retest to see if I could qualify for oxygen. Having cleared it with my back surgeon, I also was going to do PFTs to see where those stood.

The morning of the 6-minute walk oxygen test, I *might* have forgotten to take all of my allergy and asthma medications...Prednisone, Advair, Singulair, Allegra, Flonase. I was determined to fail the oxygen test - I needed this! I busted my butt on the 6-minute walk test. And after 5 minutes I de-satted (fell to 87%). I had never been happier to fail a test.

Now for the PFTs, which I was expecting to be bad because of said "forgetfulness" stated above. Well, they were garbage. As in, some of my lowest ever. Awful. So, being happy to have qualified for oxygen, I now had to figure out how to get my lung function back up.

Dr C's answer was IV antibiotics and a Prednisone burst. (If you care for more details, read on, if not, you can skip to the next paragraph.) I started Tobramycin, Meropenem (both IV), Minocycline (oral) and Colistin (inhaled). A good cocktail that I've done before. Unfortunately, after 5 days or so the Tobra started making my ears ring - this has happened before and, I believe, happens from time to time as the drug builds up in your system. So I stopped the Tobra and switched to inhaled Tobi (same drug), Cipro (oral) and dropped the Colistin.

After one week I went back in to check my PFTs: they were virtually the same. Actually, a bit higher, but since I hadn't had the boost of my asthma meds the first time, it was not an improvement to me. Disappointing. We are going to do some additional Prednisone and add back in the Colisitn, which will make five antibiotics.

Meanwhile, my stas continue to run pretty low at home, and I actually needed oxygen today to exercise on my elliptical. I am trying not to feel discouraged. It is scary to feel like you are losing control of your health...and scarier to think that things may be reaching a new plateau. Of course it's too early to tell that.

Last time this (an unexplained big decline in lung function) happened five years ago, it took me months and months to recover. Right now I am focusing on the trip we have planned at the end of July. We are driving up to Cleveland, Michigan and then Montana and back. I hope that my lungs are doing better enough in five weeks for us to not have to change our plans.

Regardless, I am trying to take each day by itself...to do as much as I can to get better and then embrace the rest. It's a tough lesson even for a seasoned patient.