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.

Doc on spa day

This was a good weekend: Friday we went to an awesome Hurricanes game (they beat the #1 west-coast team 3-0!), had two good walks with the dogs in the brisk fall weather, and got to sleep in two days in a row! Tonight Todd's dad and aunt are driving here for a Monday appointment and I am cooking dinner for them and having my mom over, too. Looking forward to that.

In dog news, the boys got their second bath/hair trim of the year this week! They looked so adorable and were kissably clean. :)

In cat news, one of my cats (Diosa) has decided that she doesn't like jumping all the way up on top of the entertainment center to eat. (The food is there so that the dogs can't reach it.) So she sits at the foot of it and meows pathetically for some kibbles. It seems like she spends her days asking for either food, catnip, or to be let out! In her defense, she is 11 or 12, is somewhat visually impaired, and has never been the most coordinated of cats. All this is to say... we knew this day was coming. :) Hopefully we can find a solution to this problem soon.

In human news, I had a good CF clinic appointment this week. The highlights were:

• FEV1 was UP
• Decided to start taking a month off of my inhaled antibiotics in between cycling
• Started on medicine for high blood pressure, which I have (mysteriously?) developed over the past few months or so

My lung functions being up is no doubt a result of my almost daily exercising lately. I have been careful not to irritate my back (which by the way is doing poorly again - more on that in a minute) with pretty good success. It is so nice to be able to do something to feel in control of my disease. And nice to see results both in the numbers and in feeling clearer every day. Exercising really does seem to make my lungs work better. My doctor says that exercise is the most important therapy that we have.

The change in inhaled antibiotics is a BIG deal. I have been constantly rotating two antibiotics for three or four years. When I started doing this, it was because I was in the middle of a rough period of infections that I was having trouble coming back from. Because of this we wanted to do everything to prevent further decline.

Now, in light of just having finished an inhaled drug study in which I was off inhaled antibiotics for either two or three months, and the fact that I did really well, has led us to reexamine our strategy. Since the effectiveness of inhaled antibiotics decreases over time, hopefully using them less will make them effective for a longer period of time.

One interesting thing, and something I have myself thought for a while. My doctor says that while there are no studies to prove it, he suspects in the future CF patients will be rotating more antibiotics. Like, Cayston one month, then Tobi, then Colistin, then (the upcoming) levofloxicin, possibly with a month off in-between...so that your bugs are seeing different classes of antibiotics all the time. He said that he is not opposed to me trying this now, if I am interested. So I just may!

My high blood pressure is possibly the result of being on daily Prednisone (but I have been on that for years, so I don't see why now would suddenly be a problem), possibly because I am taking Aleve daily because of my back, or possibly another reason. I think that both of my parents are on or have been on meds for this, so I may be predisposed to it.

Anyway, I would by lying if I said it doesn't bum me out. Another freakin' thing to deal with. But it seems to be relatively minor. And if Aleve is the culprit, well, I won't be on that forever.

The deal with my back is that the first two steroid shots really helped. Then, the evening after my follow-up appointment for that, my back got irritated with a bike ride and was increasing bad the next week. I am back to having more regular pain and taking 2-3 Aleve per day and on top of that I am taking the tramadol pain medicine they prescribed regularly me for the first time.