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.

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!!

On hold

Gallstones can cause complications in the gallbladder, liver, pancrease, or the ducts around those organs - depending on where a stone gets lodged

It has been an event-filled week, without being busy. Why? Because I have had appointments and medication changes but haven't done much else - been focusing on me and what I need to do to get back to 100%.

When I wrote last Sunday, I was having a lot of issues with anxiety. It hasn't gone away completely, but it has been much better overall this week, and for that I am thankful. More on that in a minute.

I went to see the gallbladder surgeon on Monday. I talked a lot to both the doctor and the resident there, both of whom I liked decently. From their point of view it is pretty straight forward - they recommend surgery (laparoscopic) to everyone who has any kind of problem that they think likely related to sludge/stones in the gallbladder. So it didn't matter to them that my symptoms are "minor" - the only time they recommend pills (the only alternative treatment) to people for gall stones are if they are not strong enough to go through surgery.

But I became interested in the pills when I learned from a fellow cystic that she had been on the medicine (Actigall) for years and hadn't needed surgery. And I had learned from Dr. C, my CF doc, that many people with CF are on Actigall as a preventative (it's supposed to help break down stones and prevent new ones from forming.)

The drawbacks to Actigall, according to the surgeon, were 1) It's expensive 2) I'd likely have to be on it for the rest of my life. I guess surgery is supposed to seem like a piece of cake compared to these things?? For one, it's not expensive - it comes in generic and the full price for a 3-month supply was $170 (I paid $30). Secondly, has this guy seen my sheet of meds? It is literally almost an entire page of stuff...stuff that I will have to be on for the rest of my life.

So the surgeons did not convince me, at least not for now. I want to try the Actigall and see how it goes. (The surgeons weren't opposed to my proposed plan.) However, these guys did make me feel like I would be in good hands if things got worse - and they very well may - but there is just no way to tell. And I don't feel confident enough that they will to take the plunge into surgery now.

Whew! That is a load off my mind. I hope between the Actigall and some tweeks in my diet, I will be good to go.

Speaking of my mind... I went to see a psychiatrist on Wednesday. Throughout my life, starting in childhood, I have been to various councilors. But this was, I think, my first real deal shrink with a prescription pad! His name is Dr. M and he is retired from UNC in private practice. He seemed very laid back, level-headed, soft spoken. I told him about all that is going on in my life right now...I cried some...nothing abnormal.

When he was trying to determine whether or not I am depressed right now, the first thing he asked was how had I been sleeping? I laughed. Sleeping has been a complete debacle for the last two weeks in our house...I ended up on the couch about half the nights because I would wake up from Todd's snoring in the middle of the night and not be able to get back to sleep. One is NOT getting a good night's sleep if they are 1) waking up 2) laying there for an unspecified amount of time trying to fall back to sleep, all the while (sorry, Todd) cursing their snoring partner and 3) eventually having to go make up the couch to sleep on and reset a different alarm. So yeah, I failed that question. Or passed with flying colors, depending on your perspective.

How about my appetite? Meh - been terrible, but that's mostly because of the antibiotics, I think. Have I been crying more than usual? Uh, yes. I had a meltdown in the office of the new head of our department two days earlier (don't worry - it was totally fine, she is a very caring and understanding woman. But, it's evidence that I am really overwhelmed.)

I left Dr. M's office feeling a lightness that I hadn't felt for a while; and wondering why the hell I hadn't thought of going there sooner. I also left with three prescriptions - an antidepressant (Welbutrin, which I was on for a year about 7 years ago), a new med for anxiety (swapped out Valium for Xanex), and something to help me sleep (trazadone). So much starts with a good night's sleep - I have to get that under control for my brain to normalize again.

I started the Wellbutrin on Thursday and it's making me a little *nuts* (very speedy feeling during the day) - so far I've been able to deal with it, though. I know it will get better. And it hasn't led to any anxiety, thankfully. In fact, I've not used the Xanex except to help me get to sleep, so that is good. If you're wondering why I haven't been using the trazadone for sleep, it's because when I got home and looked it up, I found out it is an antidepressant that is used "off-label" for sleep. For some folks, it's a miracle drug - non habit forming, you can take it as needed, it's cheap. But I didn't want to throw that into the mix since I am already feeling odd with the Wellbutrin and still getting used to Xanex.

So that was basically my week - interspersed with waxing and waning on needing IVs or not. My lungs are still doing pretty well, but I had a couple of "yuck" days (no fevers, though) - but I began to wonder if I couldn't remedy that with some good nights of sleep and, frankly, being less depressed. So I push on...

Not so flying colors

An x-ray of a healthy set of lungs

I wish I could say that my one year anniversary since needing IV antibiotics (9-29-10) passed with flying colors. But unfortunately, this isn't the case.

Under one theory, the so-called "Montana cold" never really went away and is now causing me to need intervention. Under another, a series of other things converged to lead me to the same place. Either way, a couple weeks after all my viral symptoms were gone, I was feeling lousy in several ways (see my last blog) - the only exception being that my lungs felt fine.

Tired of not feeling myself, I contacted my doctor Sunday night and we arranged for me to come in Thursday to discuss my recent anxiety/depression and his thoughts on gallbladder surgery. Then, that night, I woke up at 6:30 am feeling like crap, with a fever and chills, and a pretty decent pain in my left upper lobe. I contacted Dr. C again Monday and he got me in this morning.

The verdict was mixed. PFTs were fine. (Sidenote: I expected this, but still, yay! After a month of hardly any exercise - first the cold and then "exercise time" turning into "nap time" - I was pretty psyched.) X-ray showed a spot of infection in my left upper lobe, where the pain had been. Let me say, things are not nearly always this neat when it comes to x-rays and symptoms. I have been on IVs before with a nearly normal x-ray. I could only wonder if the spot was there before the pain or vise versa. Because, really, my lungs have been totally fine lately.

Everything else (oxygen level, weight, etc.) was fine.

But, one plus one equals intervention: The x-ray/lung pain or the fatigue/malaise might not be enough on their own, but together, they spell antibiotics. IVs were discussed, although not necessarily recommended. Since my lung symptoms seemed under control (pain was much better today), we decided to do a tobi/mino/bactrum cocktail. (Tobi is inhaled Tobramycin twice per day and Minocycline and Bactrum are antibiotics which target the other major bug that I culture.)

In discussing the possibility of an antidepressant, Dr. C was quick to hand me off to a psychiatrist. He says he has a "low threshhold" for sending folks for referral because 1) talk therapy can be as effective as drugs with none of the side effects and 2) those people are much better versed in the nuances of the medications. (I only half believe that, knowing that much of the process of finding the right med is trial and error. But anyway...)

There was one positive development...switching gears here to the gallbladder issues. Thanks to my wonderful online CF forum, a drug called Actigall was suggested to me. This medicine is used to break down existing gallstones (or, in my case, hopefully, gall sludge) and also to prevent formation of new sludge/stones. One of my CF friends has been on it for years and has not needed other intervention. I hope this will be the case for me. Anyway, my GI doc approved it, and Dr. C wrote me a script, so I am anxious to give it a go.

Since it was obvious the gallbladder surgery had been weighing heavily on my mind, Dr. C suggested that I talk to a surgeon at UNC to see what they recommend based on my information. We agreed, the more information, the better to help me make this decision.

So I'm on this antibiotic cocktail starting tomorrow, and missing at least three days of work this week. I hope I start to feel better soon.