By the Numbers

With CF, sometimes it feels like I live life gauging my health by numbers: Oxygen saturation, PFTs, temperature, weight, Tobramycin levels, white blood cell count, etc. These are all things that my doctor and I keep fairly close tabs on.

However, one of the first lessons of CF is to not just rely on the numbers. Sometimes we are sick but the numbers haven't caught up to that, and same thing with being on the mend. You need to treat the symptoms. Sometimes lab reports say that your body is resistant to antibiotics, but they may actually work for you. The lab reports are just a guide. Thus, there is a good amount of detective work involved with this disease and - I believe - this is why many cystics have a very fine tuned intuition when it comes to their health.

It hasn't been a good few weeks for my numbers. Oxygen sats, which usually run 98% or so, have been low-to-mid 90s causing me to need supplemental oxygen during exercise. My PFTs, which usually live in the mid-40s, have gone well into the 30s. (To give you an idea of what this means, an FEV1 of 70% or higher means very little lung involvement; an FEV1 of 30% or lower means you are starting to think about needing a transplant.)

This happened to me once before - a large, scary, unexplained dip - about five years ago. We did course after course of IVs with very little impact. I had a picc line in for almost three months. I went to Duke for a second opinion and they said I should think about transplant which scared the hell out of me.

Eventually, a combination of starting to cycle some new inhaled antibiotics, starting on allergy and Xolair shots, Prednisone and exercise were what got me out of it. I will never forget the thrill, the elation, the triumph! that came from finally getting my PFTs back up five years ago. It took nine months and a lot of hard work. My doctor and I proved that Duke doctor wrong. 

This time, I am already cycling all of the mainstream antibiotics, I am still doing the allergy and Xolair shots, so increasing my Prednisone and exercise are all we really know to do. (Of course I still have to be careful with my back and exercise...can't do vigorous cardio more than every other day.) We did an xray (unchanged) and a CT scan (normal) last week to rule out blood clots in the lung or other things we might not otherwise be able to see.

All of this has left me feeling down and discouraged. This sucks! I'm not ready to be more sick, more of the time. I'm not ready to be that person who is always gone from work, who eventually needs to give up working, who needs to be on oxygen. I'm not ready to slow down, to stop traveling, to do less with my friends, to be tired at the end of the day from nothing.

But I think this important stuff for me to process - even, as I hope, if this does eventually just become another bump on my journey. I am so fortunate to be surrounded by an amazing support system of friends, family and co-workers who want nothing but for me to put my health first. I don't know how I could do this otherwise. THANK YOU!!

It helps having something to look forward to

In approximately three weeks, Todd and I are scheduled to leave for our excellent northern/western adventure driving to Cleveland, Michigan and Montana to visit family and vacation. We are planning to be gone for a total of three weeks, which makes it the longest vacation we will have ever had together!

Leading up to that, it has not been the easiest last couple of months with my back surgery and then getting a pretty severe lung exacerbation a couple of weeks after that. I have been on IV antibiotics for over two weeks now and while I have improved, I haven't improved tremendously.

I usually keep a fairly positive attitude about my health. But I have definitely struggled some the last couple of weeks. See, it is one thing to get sick, need time off work, have to go on IVs and have life disrupted for a couple of weeks. It is quite another to get sick, have your sats go so low and get short of breath just doing normal things, feel good enough to be working some but not be able to work enough to get everything done that you want to, feel like you are doing everything to get better only to see teeny tiny steps in the right direction. I guess what I'm describing is getting "CF sick" versus getting "super CF sick."

In my experience, getting super CF sick often involves oxygen, lots of antibiotics and a lot of time...as in months. Unfortunately, with this trip coming up, it's not the best time for my oxygen saturations to be running low (they are better than they were but still not really getting above the mid-90s consistently) since 1) being on vacation we like to do things like go out and hike, which requires exertion and 2) my sats run lower out west anyway because of the higher elevation.

I can make arrangements for oxygen, and we can probably figure out the antibiotic thing - if I still need to be on something, a combination of orals and inhaled would probably tie me over - but time is the tricky thing. I guess it wouldn't be the first time going on vacation when I wasn't feeling optimal. But I wish it was different.

All this is really to say that when I am sick - especially super CF sick - it helps having things like cool trips to look forward to. I feel fortunate that I have been able to do so much traveling because I know there will come a day when that is not possible. Sometimes I feel like Todd and I are foolish to plan so much. But what the hell. When you stop making plans, then what are you really waiting for?

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.

February Update

In general, life is really really good right now. Work is going better than ever, my lung health has been excellent, I have finally gotten back to yoga! and we have been making a lot of trips up to the mountains.

On the flip side, my back/leg problem has once again become a daily pain maintenance issue for me. We have also been learning to live more frugally and I am trying to tackle what I consider to be some ongoing personal demons with a new therapist. That's it in a nutshell!

Work has been incredibly fulfilling, and very busy. I just had my mid-year review (and my 5-year anniversary, coincidentally!) and I feel more than ever now how my personal goals align with those of the departments I work for and the organization as a whole. I continue to do a lot of writing and web work (my passions) and I have a couple of projects in the works. Most importantly, I am creative, ingenuitive and able to use my web/writing talents at work and I am very appreciated by all of those around me. Oh, and we moved into a new office space which is an incredibly cool, hip environment to be working in on the American Tobacco Campus in Durham.

Pictures of the American Tobacco Campus - a renovated area of 1950s tobacco warehouses that were abandoned in the 1980s. The original buildings have all been renovated and a central courtyard area has a man-made river and a grassy area where concerts are put on during the summer. The Tobacco district is right across the street from the minor league baseball team the Durham Bulls. ATC's most famous resident (to me) is none other than Burts Bees!

The current story of my lungs has a couple of facets. I have been lucky enough to not catch any viruses lately. Because I was feeling good, I decided to start tapering my elevated dose of Prednisone a few months ago (I had been at 20 mg/day since August and my baseline is 10 mg/day.) Also, about 4-5 weeks ago I started keeping track of calories again to lose a few pounds and that has made me increase my exercising a lot (so that I can eat more than I otherwise could.) Because of my increased exercise and (an initial surprise to me) my lowering Prednisone dose, my back/leg again started giving me trouble. I guess I didn't realize how much the Prednisone had been helping my herniated disc issue.

I once thought my disc issue would get better, but I now know it is going to be something I have to live with forever.

In response to this, I am trying to do my PT exercises (or core work) every 2-3 days; icing; and I am back on a (relatively) lot of pain medicine (Alleve, Tramadol and the muscle relaxer Soma are all a part of my daily routine.) I am currently at 12.5 mg/day of Prednisone and, honestly, I don't see how I'm going to be able to get any lower than that. I might even have to go up - I will talk to my lung doctor next week when I see him about this trade-off I am experiencing.

After several months of "restorative," "yin" and "relaxing" yoga classes, I decided to try a normal yoga class in January. I was very careful and made a lot of modifications. Fortunately I have been doing yoga long enough that I can participate in a class without feeling the need to be competitive. (Yoga teachers always say "it isn't a competition - do what is best for your body!" but I don't care what anybody says, that is a hard lesson to learn.) Anyway, the regular yoga class was GREAT and I had absolutely NO adverse effects from it! I was thrilled, and since then I have been going to 1-2 classes per week. I am also starting to do a pilates class because that will give me core work (like my PT exercises) without having to do my same old exercises at home. Boring!!

Pilates, like yoga, is done on a mat. But the focus is on your core muscles, or the muscles that hold your spine in place.

On another topic, we cancelled our Europe trip that we were going to be going on with a group of friends in March. We have spent a LOT of money on dental work over the last year...we need a new fence...there are always unexpected things that come up...we need to get in a better place financially. I am happy to report that I have been very disciplined in only spending money on things that I need for the past several weeks. My tendency otherwise is not to run out and buy things just for fun, it is getting into this state of mind where I am always thinking, "what do we need right now?" or "what does the house need right now?" while I am out running errands. And then I end up thinking of things we don't necessarily need (now) or putting myself in situations where I find irresistible bargains...  So I am working on that.

I have also started seeing a new shrink. My old shrink just didn't challenge me! Also, he is close to my old office but not close at all to my new one. The new woman is in Raleigh, and sees patients on my day off, so I hope that she will work out.

Mountain house: I would be lying if I didn't say that in all the difficulty of being in and dealing with the mountain house (where Todd's dad lived, he passed away in August...) it also has been a lot of fun to clean, straighten and organize the house into a place of our own. We have been going up there about once a month. We both really like it. It is so enjoyable to be there.

Bad choices

Spoof cereal boxes

I spend a great deal of my life making good choices when it comes to my health. I am definitely better than the average bear when it comes to self-care, compliance and pushing myself (some people probably think I push myself too hard but I say you can't have one side of that coin without the other.)

But sometimes when you are sick, you feel like it gives you the right to make bad decisions. Example: last weekend (after a week of coming down with a cold, feeling crappy, being frustrated with my health, being slightly depressed and knowing that I would be starting IVs again soon) I stopped by the beer store on my way home from work and bought an inordinate amount of craft beer, which I intended to enjoy mostly by myself throughout the weekend. And I did enjoy it. (Passed my "morning after" test of not feeling guilty or overindulgent.)

Sweet Potato Lager is so delicious this time of year

So I can't say I have regrets about that particular situation, but it is a perfect example of me feeling entitled to make a bad decision. Ideally, I should have been drinking as many clear fluids as possible and making sure I got good rest (alcohol can also affect that) at the very least. By the way, the weekend was not a total throw-away, I took two good walks with the dogs, which was about all I had energy for exercise-wise -- but I was proud of myself for doing it. I also kept up with all of my normal stuff and stayed very well hydrated during the daytime hours. :)

Another example of feeling entitled, I LOVE sugar cereal. I love it so much that I have not allowed myself to buy it for the better part of many years - it is like CRACK to me. When there is a box of sugar cereal in the house, my eyes pop open in the morning and I am immediately thinking about Corn Puffs or Golden Grahams. Seriously. Having diabetes, sugar cereal is one of the worst things you can eat because of the fast and furious spike in blood sugar.

I'm not sure where this feeling of entitlement comes from in me. I know that pretty much forever, when I would go to a doctor's appointment or have to get a shot or anything, there would always be a special reward afterward: Taco Bell for lunch, McDonald's ice cream. So maybe my brain is wired that way. And I'm not saying that is a bad thing; as a child it was nice. 

So, last time I was on IVs (a meager six weeks ago), I went to the store to stock up on some things and decided to buy a couple of boxes of Crunch Berries (because of the fact that I had to be on IVs for two weeks and was feeling totally crappy.) I ended up having slightly better control over the Crunch Berries - maybe because my appetite was so sparse now that I think of it. But unlike with my sweet potato lager last weekend, I did not pass the "morning after" test - I felt guilty every time I ate them.

Now some of you might say (my mother amongst you) that I deserve a break; that I should treat myself because of all I have to go through; even that I deserve it. And what I'm saying is, maybe I don't. Or, maybe I deserve something else. Don't get me wrong, this doesn't mean that I'm not planning to indulge ever again. But it does mean that maybe I will start to look at my reasoning a little more closely.

This time starting on IVs, I had a realization somewhere in between buying the Ho-Hos, really wanting a beer last night and just now: Just because life is hard does not give me the right to beat myself up over it; just because I go through difficult things does not mean that I necessarily deserve a reward. I am the only one who suffers - both in the long and short run - as a result of my poor choices. Hmph. Going to need to think on that one for a while. Clearly there needs to be some balance between sainthood and over-indulgence. Ah, the ever-elusive 'happy medium.'

Taking it one step further: The thing about doing something wrong over and over is that it gives you a false chance to reconcile with yourself every time. (It's what I call cyclical addictive thinking.) It's the 'I had Crunch Berries this morning but I will not have any more refined sugar for the rest of the day/week/year!' and the little feeling of elation that comes with it. Most of the time, you end up breaking that promise because - I think - we get addicted to the elation that comes with pledging to do better in the future. (Conversely, or possibly concurrently, I think that people get addicted to the 'beating themselves up' that comes with making poor choices.) I definitely have some of the former in me.

But I also wonder if I am addicted to the "morning after" test itself - I kid, sort of - the always wanting to recount and assess how I feel about things that I have done. I sometimes wonder: what would my mind and body feel like to be totally free and clear? - I think deep down that is a goal that I am afraid to attain. Like life, while idyllic, would be too boring or something. But how would I know?

I read a piece of advice in O magazine a while back that has really stuck with me: Do more of things that make you feel good; do less of things that don't. So simple, yet so brilliant. But it's a good goal for me to strive toward.

Crappy week

It's been a crappy week. My positive outlook is nowhere to be seen.

Overall, I'd say that just everything is setting in a bit more with Roger's death and all that we went through with that and then my big health ordeal. I have felt frustrated that my exercising like crazy does not seem to be paying off in terms of raising my PFTs. Oh, I know it's good for me anyway, and it's actually one of the few things that I have really enjoyed and looked forward to this week. So there's that.

This week we found out that someone in our extended family had a suspicious growth that may be cancerous. I am sort of out of the loop, but right now I think things are looking good for it being totally fine, but we will know for sure soon. It just made me so sad, so depressed. It's so much to deal with...

And I woke up on Wednesday morning with a sore throat. Whoopee! I haven't even made it to my 4-week follow up - during which I'm supposed to be doing everything possible to raise my PFTs - and I am fighting another virus. It means I will more than likely be starting another course of IVs soon unless something miraculous happens.

It's not so much the doing IVs that bothers me, it's the frustration I've felt about exercising so much with it doing no good, and knowing that I am only going to lose ground here before I can continue on that path to getting better. (I will say that functionally my lungs felt good before I caught the virus this week, and I am thankful for that even if the numbers don't back it up.)

Todd is doing okay. It has been a difficult week for him. But he is having a really great weekend in the mountains with three of his oldest and best friends and I am very happy for him. Here is a picture of a big fish that he caught. I like this picture because he almost has a smirk on his face. And also because I know that when he is fishing, he is happy.

Todd with big fish on the New River in Virginia, Oct 2012

Doctors, yoga and exercise

I had my check up after 3 weeks of IV antibiotics almost three weeks ago. At that time, I was definitely feeling better. All of my symptoms - including my pesky low oxygen numbers! - had come back up to a reasonable place. My pulmonary functions, however, were not as cooperative.

Below you can see how my PFTs trended up over the course of my IV treatment from Aug 29 to Sept 18. (I started keeping track of some of my medical stats in a google spreadsheet and it allows me to easily make nifty graphs like this.)

My doctor was a little disappointed but I wasn't surprised at all. As you can see, I had been tracking my PFTs pretty closely at home, and what I scored at clinic was on par with what it had been - which is still more than 20% below my baseline. *sad face* The course of action was to keep my Prednisone at 20mg for a prolonged period of time, and exercise exercise exercise. And go back in one month.

I have been keeping up my end of the bargain! I have exercised 11 of of the 17 days since my appointment - swimming, walking, elliptical, even yoga! And I have done so in a mindful way with respect to my back issues, which will always be with me creeping up from time to time.

So yes, last week I went to yoga class for the first time in about a year and a half. It was a huge milestone for me. And I went to another one tonight at a new studio. Both of the classes were restorative classes (also called yin yoga), which means mostly passive positions to let your muscles and soft tissue release tension. Very relaxing and, well, restorative. It's a far cry from my cardio-workout flow yoga classes that are my real love, but you have to start somewhere. Baby steps. I used to hate baby steps but I am seeing their value in my wise old age.