The "D" Word

I went in to see Dr Coakley on Dec 13 after two weeks of progressively worse coughing, congestion and shortness of breath. My PFTs were the lowest they've ever been, even with my increased Prednisone. Can't say I was surprised. BUT, somehow I think the sadness/grieving/anger I'd been going through in the weeks previous helped prepare me for that appointment. Instead of being a wreck afterward, I was matter-of-fact, pensive and a little melancholy.

I am back on oxygen for anything more than just piddling around the house, and also at night. I am starting pulmonary rehab two days a week to strengthen and improve my breathing. I am taking an unofficial leave from work to get my health back under control. My port is acting up - ugh, one more thing.

Which brings me to the dreaded "D" word. During my pulmonary appt last week, my doctor mentioned contacting Duke for some preliminary questions about my case as a potential transplant patient. So - if I had never brought up transplant with my doctor, this may have been when he would have first  brought it up with me. He doesn't think I am ready for a work-up yet, but he wants to make sure all of our ducks are in a row with getting me over to Duke if/when needed. And we need to be ready because my numbers keep falling with no explanation other than disease progression.

In happy news, things seem to be going well so far on the IVs, which I am incredibly thankful for. And I have to say that for all the bumps in the road of late, I am not letting it ruin what is always a very special time of year for me with my birthday (20th) and then Christmas. We have our tree up and decorated. I am having a birthday bowling party tomorrow with 20 of my closest friends. And I still hope we can make it to the mountains at least for a few days next week - that is if my port, blood draws and IV delivery schedules will cooperate.

Happy Holidays Everyone!!

p.s. If you would like to make a difference in the life of someone with CF this holiday season, please consider donating to the Cystic Dreams Fund, which was founded in memory of my good friend Paul Mooney. CDF gives grants to people with CF dealing with financial hardship, which can be anything from medications, respiratory equipment, nutritional supplements, hospital bills and more. Thank you for considering!

Belize and Beyond

It's a cold, rainy day - perfect for catching up on my blog.

Sunset over the swimming pool

We made it to Belize! Hard to believe that was already almost a month ago. Belize is beautiful and we had a good time. Unfortunately, the weather was very rainy (yeah, I know it's a rain forest!) and I got a little stir crazy. But it was probably what I needed to have lots of time to lay around sleeping and reading.

We had absolutely amazing food - fresh fish and seafood every night, lobster!! - drank lots of Belikin and rum drinks. Todd went fishing. We had one amazing day of snorkeling where we saw sea turtles, tons of fish, beautiful coral and swam with the (harmless) nurse sharks. The resort was very nice, the staff were all super friendly and the rest of the company there was enjoyable.

Backing up just a little bit...

Had a pulmonary check-up/re-check from IVs three days before we left for Belize. It was an incredibly intense appointment. After three weeks of going into the hospital for Colistin and all the crazy side effects, switching meds around and exercising my numbers were still crap: 34% FEV1 at 34 years old is NOT where I want to be. I think that was even a little lower than before I went on IVs. Ugh.

When Dr. Coakley walked into the room, I was crying, so disheartened by the numbers and feeling so frustrated and hopeless. Todd was with me. The three of us talked for a long time. In true Coakley fashion, we went through what we had done and concluded we had taken the best steps. Did we get the results we wanted? Absolutely not. But had we done the right things? Absolutely.

And as much as transplant and declining health feel like they are creeping up on me, he assured us that we aren't there yet. And, like always with this disease, you just have to keep trying things to find something that will work. Things are just getting trickier, but that is no reason to dispair.

We both walked out feeling extremely positive and, if it was even possible, even more impressed with Doctor Coakley than ever before. I love this man!!!

The Best Thanksgiving Ever

Chef Jay carves his masterpiece

I have usually gone to Cleveland for Thanksgiving in recent years. And I usually drive. The only way I could make it happen this year (with my aging car and not wanting to take extra time off work) was to fly up on Wednesday and come back on Saturday. The visit was short but sweet.

Child labor: the girls haul my backpack up two flights of stairs to my room in the attic

I seriously had one of the best Thanksgivings ever. My step-sister and three nieces (age 9 and 7-year-old twins) came to pick me up from the airport. "Hi Aunt Laura!" They were so cute and excited to see me. By the end of the day they were crawling all over me and sitting in my lap, and of course trying to recruit me to play the game of the hour. So sweet. They crack me up.

Then there was SIMON, my brother's 2-year old. My brother, his wife and Simon arrived Wednesday as well. We all met up at my dad's house before dispersing for the evening. Simon is amazing. It is no surprise that both his parents are professors. He is so smart and talks and talks what seems way above what normal kids his age would. He has the biggest most beautiful blue eyes. And he is so careful and gentle with things, and very polite and well behaved. Love love love!

So what made this the most amazing Thanksgiving ever? For one my dad was doing pretty well health wise, better than when we saw him this summer. That was awesome. Secondly, I got some one-on-one time with almost everyone, and lots of niece and nephew time. Thirdly, the food (compliments of my step-brother, the amazing cook Jason) was absolutely phenomenal. To top it all off, we had the prettiest snow, falling in big flakes, covering things just enough to be perfectly picturesque. Enough to make this ex-northerner a little sentimental.

Amazing Annual December Soap Event

We again participated in the Raleigh LGBT Center's First Friday event last night. It had been a while since we did a soap display so we were kind of scrambling around a lot this past week. Our soap looked so so good. I think I was most proud of this display than any other one we've done. There were no bars that looked amateur. We rocked it!

Wintergreen tree, lemongrass scrub, cinnamon clove gingerbread man, lavender star

That All Sounds Great, But How Am I Really Doing?

So glad you asked! As you have read, I have a lot of awesome things going on in my life and am surrounded by amazing friends, family, pets, doctors...what more could I want?

Well, I want to be able to sweep my house, walk up stairs and carry groceries to the car without getting short of breath. Getting out of breath sucks, it really does. It has made exercise so much more difficult for me; I've had a very hard time motivating myself to do it. I know I need it more than ever, if I am going to recover my numbers that is how it will happen. But I can't seem to get over the hump.

I have been working on acceptance. I need to accept where my lungs are at, adjust my life to work with how they are, and realize that I am going to have to let some things go. It sucks but I am not the only one to ever have to go through this. But while I am trying to accept things, my sadness and frustration is still very much alive below the surface...I've been having a very hard time with my new position in life.

I have more outwardly becoming a "sick person." It is harder for me to control my coughing during the day, at places like work, I'm congested, my voice sounds like I'm sick but I'm not, my shortness of breath (walk too quickly and also talk? not anymore). I know I've talked before about handling health decline with grace, but damn this shit is hard.

For reals? This shit is gettin' old, yo.

I have spent the last two days feeling absolutely horrendously awful: body malaise or achiness to where it hurts to breath in deeply; weird muscle sensations when I stand up; no energy, sleeping a ton; not much appetite; low-grade fevers; brain of mush...it occurred to me that this might not be entirely different than what chemotherapy feels like. The toxic "cure."

Switching it up

Not feeling a huge difference after two weeks on IVs, we decided to switch things up from IV Mero to IV Tobra and Ceftaz (while also staying on Minocycline and switching from inhaled Tobi to inhaled Colistin). This is a combo I've been on before, but we decided to try doubling the dose of Ceftaz to see if it would make a difference. From what I gather, this high dose of Ceftaz is not something that is done very often. Sound familiar?

My body could certainly tell the difference pretty much after the first dose. It usually takes a few doses of antibiotic for me to start feeling crummy, but this time it happened right away.

Is it just me or did this happen fast?

It might just be me, but it seems like this antibiotic resistance thing, which theoretically should happen over a good amount of time, has happened very quickly. I have only had my port for a little over three years. When I got it, I was doing IVs about 2-3 times per year. I don't even know what I've averaged lately - though I know that there are times when I have gotten sick in the last couple of years that I have been really sick, like needing oxygen sick. In other words, the lows have been lower for sure.

Woo woo woo wants to be a sick person?

Not me! One of my biggest fears, you know, besides dying way too young, is falling more and more unavoidably into the category of 'sick person' as my disease progresses. Maybe it's the pity I don't want, or the worry I don't want people to have, or the fatigue that comes from putting on a happy face/explaining unpleasant things to people/trying to have a positive attitude...but it's also a fear of being seen as unreliable, the perpetual "penciled in plans" type of friend, the missing out on socializing when I shouldn't go out or don't have the energy, being gone so much from work that people start to question me or my contribution. And I don't know anyone who has looked forward to lugging oxygen around with all of the joys surrounding that.

Here is my take-away

This is what I believe, although it becomes harder and harder to follow as my health deteriorates: no matter what the reality is, you always have a choice about how to view your situation. If your FEV1 is 50% or 15%, you can choose how you live each day - what you do, how you tell your story, the people you surround yourself with and let yourself be supported by, how you take care of yourself, the pity you evoke or brush aside.

I said to Todd the other day: I feel like all of my work the last few years has been to avoid this - and now that I'm here, I just don't have the energy to deal with it. That might have been depression speaking, but it was truly how I felt after getting out of the hospital last week.

But what is left except to live life? It isn't going away, not yet. And so these choices again come into play: I have to get up, brush the dirt off my pants and get back to work. It ain't easy, and it sure as hell is getting old, but at least I have some great people supporting me along the way. It really does make a huge difference.

A Change of Place

Table Rock as seen from Wiseman's View

One of the great things about having a place in the mountains is that Todd and I can sneak away from town for the weekend at the last minute. That was exactly what was in order for this weekend.

It was a hard week. In addition to the physical and mental strains of being in the hospital and experiencing various side-effects from my antibiotic, I also had a bit of a shock that caused first meltdown and then a period of pensiveness.

What happened?

Not entirely pleased with how I was feeling a week into being on antibiotics - no increased lung functions, and just not feeling great in general (there was some improvement, mostly noticed at first, but that seemed to plateau after a few days) - I was looking over my sputum (lung goo) culture results from the last year.

I had been under the impression for the last couple of years that I had one very resistant (or "pan-resistant") bacteria (we'll call this Bug 1), one that had good susceptibilities to antibiotics (Bug 2) and another couple who move through like a revolving door but are nothing too serious.

Come to find out, according to my last two cultures, I essentially have not one but TWO pan-resistant bugs. When I asked my doctor about this, he said that Bug 2 has fluctuated in being sensitive or not over the last several years, but that yes, it is tending to become more resistant.

This was incredibly upsetting to me.

It also, in my mind, explained why I've been not able to recuperate my lung function since my back surgery at the end of May.

And it was why I really felt the need to get away to the mountains this weekend. It's funny how a change of place can change how your brain operates. Up here, I can think freely about things health-related. I'm not sure why that is. Just being in a different environment maybe. But it's invaluable to have this time and place.

Fall family portrait

So what does all of this mean?

The answer is two-fold. In one sense, nothing we are doing is going to change and there's nothing I could have done differently up to this point. In another sense, this has me butting up more closely than ever before to the lung transplant issue. My doctor hasn't said this, but the game seems to be changing here.

Transplant is something that I have long resisted, but with the caveat that my mind wasn't completely made up. Lungs are one of the trickiest organs to transplant and people with CF don't tend to do as well as some other populations because of our history with chronic infection. It's not something you want to do unless you really have to.

As I've said before, my doctor does not think I am to the point for transplant referral. But I can't help thinking whether or not having two resistant bacteria should hasten the process.

Not that I am anxious to do it...  I still don't even know if I would. I will save my pros, cons and reservations for another blog post. But suffice to say, this has all been a lot to take in and process and my normally positive persona has gone on a bit of a sabbatical.

For now, I am concentrating on getting the most out of the antibiotics I'm still on for the next week or two. Before I know it, it will be time for fun, sun and relaxation in Belize!

L'hopital - Day 5 and home!

Day 5 was pretty uneventful. I had what I would consider to be a mostly side-effect free day. A little itching here and there but nothing bad. My creatinine was still doing very well.

By day 6, I saw no reason to stay in there. My creatinine was holding steady, my side-effects were under control. Dr Coakley agreed to send me home on it to continue a 10-day course. We had thought about doing only 7 days but since things were going well decided to try 10.

Trying to get Colistin from my home health company turned out to be a NIGHTMARE. I will spare you the details, but Dr C gave me the okay to leave at 11am. It wasn't until 4:00 that all the kinks were worked out (and during that time I had been told at one point it wasn't going to work out for me to be discharged that day...but I was determined!) It was almost 7 by the time I left.

As soon as I was out of my hospital room and moving about in the real world, it became apparent that my equilibrium still wasn't quite right. Also, I had been feeling pretty depressed the last two days. Because of all that, we decided to only do 7 days total after all, which means tomorrow will be my last day of Colistin. I will continue on Meropenem and Minocycline adding Cipro for an additional week.

I was so happy to be home. All three kitties slept in with me this morning! That is a real treat. But I sure wish I felt better. Today I feel a combination of "IV yuk" and "Colistin funkiess" that isn't very nice. Plus a little fuzzy in the head.

Here's to tomorrow being the last day on Colistin! And to the end of a successful phase I of this experiment. Regardless of the outcome, I now know that I can tolerate this drug, and thus we have one more tool in the ever emptying toolbox.

L'hopital - Day 4

Last night was a little rough...

I continued to have trouble with "itching" - I put that in quotation marks because I'm not sure if it's technically an itch or some kind of strange nerve tingle. But for simplicity sake, I will say itching. You may have pieced this together already, but Colistin can affect the nerves in your extremities...hence the numb facial feelings I mentioned yesterday (that can also happen in hands and feet).

I tried really hard to tough it out yesterday after all of the crazy stuff that happened in the afternoon. Everything else had gotten better or gone away by bedtime except for the itching on my head. It wasn't too bad as long as I was busy with something.

I finally asked the nurse if Benadryl might help. She said it might and tried to order some. But for some reason we couldn't figure out, the on-call doctor did not want to give it to me! Meanwhile, my next dose of Colistin was approaching and I didn't want to not have something in place should the itching get worse after that. I finally told her to tell him I was going to refuse my next dose until I got it (without good reason) and it finally came through.

Unfortunately, the Benadryl didn't make a very big difference. And I had the hardest time falling asleep. As soon as I laid down, it was all I could think about despite my best zen master attempts. After an hour of half-sleep/trying not to itch/itching inadvertently in my sleep, I got up, took half a Xanex, put my headphones in to some John Coltrane ballads and fell asleep.

I knew it was going to be a good morning when I saw nurse May's smiling face!

However, this morning the itching was still there - although reduced - but as soon as I was up and at 'em I was distracted enough so that it didn't bother me.

My doctor said he had a patient with some "facial symptoms" (not sure which ones) that took a while to resolve even after the antibiotic was stopped. My fear (or rather) thing I am being careful about is that these side effects never go beyond something I could handle permanently (worst case, very unlikely). I think this itching is close to that edge. It's okay during the day, but I don't want to feel like I have poison ivy on my face when I fall asleep for the rest of my life.

Anyway, there is going to be a lot for me to talk to Dr Coakley about tomorrow. He is very conservative when it comes to stuff like this and he may want to stop the Colistin. I have mixed feelings. On one hand, I really don't want to be itchy forever, but on the other hand the itching doesn't seem to get any worse with my doses so I am inclined to keep going a while longer.

Otherwise, I felt pretty good today. A little speedy, maybe, but nothing too bothersome. My creatinine was also good today. So that's all good.

In other, more exciting news, I had three friends come to visit today - how lucky am I that SIX people offered to come see me today? Feeling the love.

Otherwise, I rode 40 minutes on the recumbent bike again that is in my room, washed up for my company and got to have an amazing iced coffee from my favorite chain coffee shop. All in all a pretty good day in the hospital.

L'hopital - Day 3

Beautiful daisys from my buddies at work!

Today was an interesting day. Started out feeling like I was getting bogged down from the IVs, which sometimes happens about the third day. However, I received some excellent news from my labs this morning: my creatinine was lower than it was yesterday. That means my kidneys are handing the medication just fine. I am seriously happy for each dose of this drug I can get in me because who knows how long it will last?

Anyway, my "IV yuk" feeling soon went away, or faded into the background as I started experiencing some very weird side effects from my morning dose of Colistin.  

Backing up, yesterday I had noticed a tiny bit of partial numbness at the tip of my tongue and around my lip area. I had read about that being pretty common with Colistin. Most people have it go away after a couple of days. But then I just started feeling - I don't know how to say this nicely - like I was fucked up on drugs. I had a bunch of nervous energy, I couldn't stop itching, I suddenly had absolutely no appetite...and that wasn't even the worst of it. It felt strange to stand up, like my muscles were a little jello-ey, and my balance was off. I staggered right in front of Todd! I was feeling a little spacey, too. These are all things I've read about happening to people on Colistin; I can only hope that they don't get worse and that they stop happening soon to me.

The good thing, if there is a good thing, is that aside from the itching, I didn't really feel bad. However, as things got a little worse before getting better over the course of a few hours, I did start to get anxious about the fact that I was having side effects. This led to some massively high blood pressure readings! The doctors were paged about all of this. Their response? Recheck my blood pressure later on (it is already better) and just let them know if the side effects are getting worse.

So, here I sit *scratch, scratch*.

I guess the thing to keep in mind is that just because your body is processing a drug well does not necessarily mean that you won't still have side effects. There are some side effects that are serious enough that the doctors would stop the drug. Mine weren't in that category.

Here's to hoping that I will have one or two days max more of this to deal with.