Frustrated and a Little Freaked Out

CF has been kicking my ass...

I feel like I've been quiet lately. Even though (or maybe because?) I've been going through a lot I have chosen to make my last two blog posts more lighthearted. In contrast to those, this one will not be.

Let's start with the obvious. Todd and I never ever ever thought I would be waiting over three months for a transplant! I don't feel like summer "flew by" - I feel like summer didn't even happen, like I have been living - nay, stuck - in a suspended, shitty reality for months. I am so ready to get on with my life.

I am tired of being up and down all the time. When I am down, sometimes it feels like transplant may never happen. I have for the first time had this thought cross my mind - what if, what if, what if? I can't help but to think these things. I have seen now at least a dozen people with CF at different stages of the transplant process at Duke and I see the trends: about half the people make it to transplant okay, the other half will basically be doing okay and then fall off a cliff. (In medical terms this means they end up either intubated or on ECMO. In either case, your lung score goes way up and lungs usually become available within a few days.) Fortunately Duke is really good at dealing with these situations, but the point is I don't want to have to get to that point in order to get my transplant. That is one of the reasons why I continue to work and fight so hard to maintain my health. But as things are it remains that I need to either get lucky or sicker to get called.

I have so far been lucky in being able to maintain my health with exercise, therapy, antibiotics and other medications, but I feel like my luck may be starting to run out. I'm not trying to be dramatic. Let me explain. About a month ago, I started not being able to do quite as much at rehab...it wasn't anything major, just fewer of my awesome walking days or not being able to do as many reps with my strength training. I thought maybe I was getting burned out mentally - which I think was definitely part of what was going on - as well as physically. Or had I just hit "the wall" - the point at which my muscle capacity could no longer increase given the oxygenation my lungs were capable of providing? Or perhaps both?

To address the mental burn-out, I have gone the last few weeks cutting back to 3-4 days/week at rehab instead of 5. That helped some. But just when I had a new schedule for myself worked out that added some much needed variety to my exercise routine, rehab started cracking down on what used to be a very loose time frame: I am having to get done in 2 hours what used to take me 3. So I am not getting as much done every day as I want, which also makes me feel like I am missing out/losing ground/not progressing like I want.

The other thing going on here is that my IV antibiotic schedule is TOTALLY kicking my ass. And while I was under the impression that this was going to be only for 2 weeks, I found out it has been ordered for another 10 days! I am not getting enough sleep at night because I can't sleep in as much as I want to in order to get to rehab - and if I don't get to rehab on time I get even less accomplished than I want! I am up until 1:30 am at least every night doing IVs, then up at 8:30 to start an IV, then at 9:00 to switch IVs; or, really, I need to be getting out of bed by then but that's very difficult.

I feel buried in a hole I cannot see out of. I need guidance! I need to feel like I'm doing the right things. I need reassurance that I'm doing all that I can. And that is something I am most definitely not getting from Duke - I feel like I have been left to fend for myself right now. I need my previous CF doctor, Dr Coakley!! I have been in touch with him, by the way, and depending on how things go with Duke I may actually try to go see him soon. He is my ace in the hole.

So, What Else Is New?

Physically I am not doing great. I have had a major allergic/asthmatic coughing issue crop up the last week or so. Maybe it means that the IVs are helping me cough up crap, but I am coughing so much and so prolifically -  sometimes I just can't stop - it's ridiculous! I'm coughing while I'm trying to fall asleep, during the night, and I'm averaging about one super coughing fit per evening with plenty of little ones mixed in. Fall is my bad time of year for allergies and since I am no longer on allergy shots I think that is making things worse. But it's anybody's guess! This is another unanswered question I have hanging around out there right now.

In addition to coughing, my energy is down, I am more short of breath than usual and I am also having some other odd symptoms. I mentioned before about getting lightheaded when I cough. I have discovered that it only happens when I am sitting down! - which makes no sense to me whatsoever. I have headaches sometimes, but not clearly either sinus or CO2 related (probably a mix of both), muscle twitches in my legs (possibly from low potassium) and bad lower back pain. The latest thing is that I have gotten "the shakes" sometimes during the last couple of days. Oh, and my ankle randomly got puffy this week (better now thankfully.)

Basically there are a lot of different things going on with me right now and it's hard to decipher the role of each individual ailment: allergic coughing, infection flare-up, general CF progression, I ran out of one of one of my inhalers, I am exercising less, I'm not getting good sleep, I am emotionally up and down. It all creates a giant negative feedback loop that I desperately want out of.

Now, if you think that all of this sounds very negative, let me put it into perspective for you. Even with all that's going on, there are a hundred things I am thankful for - and I'm not talking wishy-washy thankful but rather things I have seen and could very realistically have happened or happen to me: I have not had a lung collapse, a serious lung bleed, a non-CF related health emergency, my port is still working well, I have not caught any viruses since I've been listed, my kidneys are doing well, my diabetes is in good control, somehow with all my coughing I have not reinjured my rib that was fractured (for more on that see entries here from July 31st forward), I am able to drive myself around, I am still able to socialize and have a pretty good quality of life, I can still do a lot at rehab (walk a mile in 20 mins) even though it's diminished, I have not had to be hospitalized because of infection, I have my money from disability coming in, Todd's job has been really awesome about giving him flexibility, I have wonderful insurance and, of course, I am surrounded by wonderful people - and pets - who inspire me every day to keep going. THIS is the context into which all the "bad" things in my life fit.

So what am I going to do about all this frustrating stuff?

Well, first, my coordinator will be back on Monday and I am going to call her and have a long chat about my current concerns. If I feel Duke is not able to help in the way I need it, I will consider going back to check in with my UNC doctor. I am also going to have a talk with the head woman at rehab and let her know what's going on with my IVs and energy level, tell her I've been frustrated with my progress and see what she has to say about it. At the very least I know I will feel better having all that stuff out in the open.

As for Todd and I, we continue to try to live as normally as possible, which means making plans as we usually would (and hoping we will have to cancel them!) We went to a dinner and a movie this week, went to trivia with friends (and won!) on Thursday and went to opening night for hockey last night (I am not sure how I had the energy for that - I was definitely waning.)

Last But Not Least, Happy Stuff!

It has not been all hum drum around here. I do have days where I feel good and my energy is good, and I have gotten some things done I have been wanting to do for a while.

For instance, for the first time since I have had my iPod, I finally - finally - after many hours in iTunes got things organized just the way I want them. Huge success! I now have all of the artists arranged the way I want and I have added mellow music to help me into a calm state of mind if need be. I also made various play lists with stuff from chill rock mixes to meditation sounds.

We have continued to keep the house in pretty much tip-top shape (well, minus the pet fur...we are still not great about vacuuming.) Things are organized, neat, ready to get that call (or for those snapshots of life with CF)! I changed over my summer to winter clothes this week and now have two more bags of stuff to take to the thrift store. I went through my clothes with two criteria: do I wear this? do I love this? If not, into the pile it went.

Also, we redid our main bathroom earlier this year, but since then (and because we are not going to have money any time soon to redo our master bathroom) I have wanted to do a few things to spruce things up in there. I have pined for months online for these amazing hand-forged recycled steel bathroom hardware fixtures. I was on the Gaiam website earlier this week and discovered they were now all 50% off - I was thrilled! So I will be installing those soon, as well as rearranging a couple of pictures we have hanging in our bathroom, one with a new frame. It's going to make the room feel very nice.

photo credit: Butt kicking, zipline.wordpress.com; Clover, layoutsparks.com; Man pushing boulder, petemandik.blogspot.com; Kitten with ear phones, sodahead.com

A Litte Less Intensity...and Snow!

Doc (aka Crazy Dog) has a dog version of a snow angel that he likes to do. Here he stops for a moment to pose for the camera.

Sam chewing on a snow ball - literally his ball covered in snow! Doggie heaven.

My last few blogs have been pretty intense but this one's going to be a lot lighter.

It was a good week overall, filled with all of my new normal things - pulmonary rehab, paperwork, appointments. We were pretty much Olympic-watching junkies all week long. I enjoy most everything except for curling - check out this video to find a much better version of curling involving cats.

Is that your final answer?

Monday was a bit of a sad day. It was the day that I told my bosses that I would not be coming back to work. It was extremely difficult, but I know that it is the right thing for me to do. Still some processing to do, but I took that first difficult step. I have given myself a working title of "Stay-at-home-fur-kid-mom."

I am also finding my way quite well with all of the disability stuff. I got some much needed free legal help with my long-term disability and am officially in the queue to get free legal help from another place to apply for SSDI. That is my next big project.

*     *     *

I am hoping that this round of IVs will only last for two weeks. Things are going really well - my lungs have improved quite a bit, my kidneys are handling the meds well and I think that I managed to not catch a cold that Todd caught mid-week. This coming week I see both my pulmonary doctor and my ear, nose and throat doctor to test my hearing and check in about sinus issues.

Other than that, I have been six weeks without alcohol and it has never been more difficult not to drink than when we were snowed in for two days! But I did it. I have actually been a little tempted since then, just wondering to myself why it is I'm doing this and what exactly I hope to get out of it. I'm not sure the answer, but something tells me I need to stick with it for now. And so I will.

This Is (Explicative) Insane

It's as if I've woken up and suddenly realized how insane my life is, how sick I really am. How did I last this long working and essentially living a normal-ish life?

My days are nearly completely consumed by taking care of myself: doing treatments, refilling medicines, ordering oxygen, going to doctor's appointments, handling insurance issues, boiling nebs, taking pills, going to pulmonary rehab. If going on disability is akin to retirement, this is not seeming very 'golden.'

The Disability Reality

The process of applying for disability really makes you face reality.

Here is me on paper: an incredibly sick 35-year old woman with terrible lung function who may not have long to live without a transplant. Sobering. And quite a different picture than I normally have of myself. The lawyers tell me this means I shouldn't have any trouble at all getting approved for disability. I wish that made me happy.

Where I Am Now

I am trying to come to terms with where my health is, where it is going, how much time I might have...and whether or not I want to pursue transplant. I am having a hard time picturing what life would look like after transplant. What would I want to do that I haven't already done?

Here is part of what I posted in my CF group, Older & Wiser, yesterday.

I can't shake the thought of what if I do it [transplant] and then it goes horribly wrong? And then I am dying all over again. Except that I have no idea what's going on because I only half still have CF. And I've had to go through this major fucking surgery to boot.

...When I think about what I would want to do I think of spending time with my family, especially my little nieces and nephews - OF COURSE I want to be around for them as long as possible. But they are going to lose me eventually anyway. What difference does a few years really make?

I feel like I have already done a tremendous amount with my life. I have traveled all over, I have amazing friends, I am a talented writer and I have had a relatively successful career.

There is nothing (or not much) I am eager to do that I haven't already done...although I would certainly like to spend more time doing the things I already love doing. But that will ALWAYS be the case. There will never be enough time with the people I love - ever. So I'm wondering...is this it? Am I done? Is it greedy to want more when I've already had so much?

I have progressed a little more past what I wrote yesterday. Todd and I sat down and talked about things we'd like to do if I had new lungs. That was nice. There are some things we haven't been able to do, and some things we want to have more time to do.

But the truth is, I feel like I'm running out of time to make this decision. And I'm starting to get a little bit scared.

I'm Sick - Again 

And no, I'm probably not in the best state of mind right now. I'm down, depressed, feeling mopey and defeated. I woke up yesterday with a headache, fever, chills, aches - got tested for the flu just to rule that out. I had been feeling sick/run-down off and on for the past few days. Last night I woke up with a pain in my left lung that kept me up off and on during the night. (When the lungs get inflamed, sometimes air can get trapped in the little air sacs and make certain positions and deep breaths uncomfortable.) Blah blah blah blah blah, right?

I am starting on IVs today - again - I made it a month and four days since last being on them. My doctor is increasingly hesitant to start IVs unless absolutely necessary because of my resistance (I now essentially have two virulent bugs that are resistant to almost everything.)

This is INSANE. This is what a person looks like on paper when they are getting to the point of needing a lung transplant. I am what a person looks like on paper when they are getting to the point of needing a transplant. Me. ME. Me??? It's not how I've pictured myself, but here I am.

 

Surviving the Holidays on IVs

My oldest friend Erica and I at my Birthday Bowling party

Well, I survived the holidays on IVs - and oxygen, I should add, since that was a big new adjustment for me.

My birthday bowling party was a ton of fun! Had a great time with friends. It was also kind of like a "coming out" party for me with the oxygen. And it went rather well I think. Obviously my friends are pretty awesome so that helped. :)

We really wanted to make it up to the mountains but that didn't end up happening. Between my bi-weekly labs and medicine delivery schedule it just wasn't possible. Plus, it was probably best for me to hang around here anyway and to enjoy mountain time when I'm feeling a bit better (in other words, when I'm needing less oxygen.)

Christmas Time is Here 

As anyone knows who has ever heard the song "Christmas Time is Here" from A Charlie Brown Christmas, there is both a sweetness and a sadness about the holidays. When we're young, Christmas is pure joy. But as we get older and start to value family time over presents, we can't help but be reminded of people we've lost, those who are no longer here to celebrate with us.

And there was plenty to be sad about this holiday...  It was our second Christmas without Todd's dad, who always made a huge deal about getting presents for all of the grand-dogs and having a big Christmas morning with them. Todd's cousin who has been battling (I hate using that word) stage 4 cancer for several years almost died a few days before Christmas. My health is clearly not doing well. One of our good friends is moving out of the country.

BUT, lucky for us we have all of that to balance with having an amazing group of friends, a supportive family, nieces and nephews to spoil and whose holiday excitement can't help but be contagious, our furry children who provide endless entertainment and (cheesy alert) each other.

Sam, taking a breather after opening Christmas gifts

Speaking of amazing things, some news about my job

I told you about how I unapologetically (for the first time ever?) took these three weeks on IVs completely off of work - three weeks which, incidentally, ends today! (More on that in a sec.) And the crazy thing is, I actually stuck to it. I haven't worked, and I haven't felt guilty about not working.

But, at the encouragement of my boss, Todd and pretty much everyone around me, I have decided to go on short-term disability for a while longer to extend the time that I have to recuperate and hopefully get my lungs in better shape with pulmonary rehab, etc. I am not quite sure what this "focusing on my health" time will look like, but I will definitely keep you all posted.

Lastly, an update on my health

Last, but never least, here is an update after 3 weeks on IV antibiotics:

• I am feeling pretty good, but I caught a cold on Christmas Eve that has hampered my improvement and has made the IVs less successful overall than I hoped.
• My lung functions have come up a tiny bit though! I am at least consistently over the 1 liter mark.
• My kidneys did great with the Tobra, my port is working fine after a period of suspecting a partial clot, and all of my blood draws went very well thanks to my amazing nurse who can do some serious acrobatics with a butterfly needle.
• I had my first 2-hour session of pulmonary rehab yesterday. It went really well! I think it's a good sign when they have to tell you to slow down. :) It's going to be really hard, but I am up for the challenge.
• One question mark hanging out there is how my back is going to deal with this increased activity from pulmonary rehab. It has been bothering me a little - some of that is good because I know I need strengthening - but I hope it doesn't become a problem. I have had to take Tramadol for the first time in a few weeks.

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!

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!

To do or not to do Colistin?

On oxygen in Colorado and hanging out at over 12,000 feet ANYWAY

I have not updated a lot about my health recently - partly because there has been so much other cool stuff to share with you! But that doesn't mean there hasn't been sort-of a lot going on.

Let's review...  I had my back surgery on May 22. My lungs did great with the general anesthesia. I was on IVs prophylacticly (just in case) both before and after surgery.

Two weeks later, still on a lot of movement restrictions, my lungs began to decline. About four weeks after surgery, my PFTs dipped to one of their lowest points ever (33%). My oxygen sats were low and I was feeling short of breath. We did 3 weeks of IVs and my PFTs only went up to 37%. (The last few years I've averaged 40-45%, but I was actually 49% - which was super awesome - the last time I saw my pulmonary doctor before surgery.) I showed up to my 7-week surgery check-up with oxygen, which I was needing to use with exertion. This was two weeks before we were scheduled to leave on our 3-week cross-country road trip.

With exercise, I continued to slowly improve before our trip to the point that I wasn't really needing oxygen anymore to exercise. I did alright, but I needed a lot of oxygen because we spent most of our time above 5,000 feet out west. When we got back from our trip, my PFTs were at 35% - disappointing, but not too surprising considering that I was out of my regular airway clearance and exercise routine for so long.

I got back into exercising a lot, etc. and at my pulmonary appointment this past week I was at 37%. I track my PFTs at home, so I knew the number was going to be bad. My numbers had actually been improving over the last few weeks (up to slightly above 40%), but then they tanked three days before my appointment (cause could be starting on Tobi Podhaler which can be irritating.) I was on the fence about starting IVs again before my appointment, but then when my numbers fell and I started feeling less than 100%, I felt it was time to take a big risk in hopes of a big payoff.

Colistin, the antibiotic you don't want to use unless you really have to:

With cystic fibrosis, we are constantly giving sputum samples at the doctor's office that are tested against a range of antibiotics that are either sensitive (good), resistant (bad) or show intermediate sensitivity (so-so.) One of my bacteria (pseudomonas) shows intermediate sensitivity to Tobramycin (which I am usually on when I do IVs), sensitivity to Colistin and is resistant to everything else. (Caveat: just because you are resistant to things "on paper" doesn't mean they won't still work, especially if they are combined with other drugs, which can have a synergy effect.)

Colistin stopped being used in the 1970s because of it's toxicity, which is why it has such a bad reputation. (It is currently used in an inhaled form by some CF patients like me with no problem.) But now you will see why I am tempted anyway: It belongs to a class of antibiotics that my bacteria have never seen before; It is the only thing that my pseudomonas is clearly sensitive to; And it is not known to build up resistance. Also, I have not gotten a "boost" from the last few rounds of antibiotics I've done. That doesn't mean they haven't helped, but it does mean they aren't working as well as they used to. Diminishing returns, I've called it.

My doctor's fear is that - worst case - Colistin could cause irreparable kidney damage - and that, in addition to a couple of other what might be seen as strikes against me, could make me ineligible for a lung transplant down the road. There isn't reliable dosing information for Colistin. You can't check the levels like we do with Tobramycin because the levels don't correlate to toxicity. From what I've heard from other cystics who have been on it, there can be some strange neurological side effects (tingly lips, face, drunken walking) but they usually only last a few days and/or go away when the dose is lowered. I've also read about people whose kidneys do get affected by it, but the kidneys almost always bounce back.

If only there was a way to test how the kidneys might hold up...

Creatinine levels are checked at least once a week when I do Tobra. They are always fine, which means my kidneys are handling it. The problem with the creatinine blood test is that it's really a better judge of your kidneys not doing well than if they are doing well. What I mean is that your kidneys have four times the reserve of what normal people need from them. Think of that as a green thermometer (things are all good) with red at the bottom (trouble's a brewin'). You can be at any point in that green and still have normal creatinine numbers - but you don't know how close you are to that red line. These things don't matter unless you are thinking of doing something that could put serious stress on them.

Here was my doctor's idea: the 24-hour creatinine clearance test. Since I am not in immediate need of IVs, we want to take a little time and make this decision very carefully. So this weekend I am doing a 24-hour urine collection at home. This is a more accurate type of creatinine test (not normally done, but then again, Colistin isn't often done with someone who is diabetic and has already been on a good amount of Tobra in her life.) If my kidneys are operating well into the green, then we will think about trying Colistin.

I would have to be hospitalized for this, at least for the first 5 days or so. And there would be lots of blood tests. But I think you know where I stand. To me, the risk is totally worth it. I feel like I have been sitting here all summer watching my numbers dwindle, doing everything I can and seeing very little result from it. I want to preserve what I have now instead of waiting until I am in a landslide toward transplant to bust out the Colistin. If things get wonky when I try it, we will stop right away (and HOPE that there will be no long term damage.) But in my mind, we might have come upon a new go-to drug that would make me feel a lot better and might even give my lung functions a good boost.

What do you guys think?

How close are we to transplant anyway?

If you are like me, this is a question hanging in the back of your mind right now. To me, an FEV1 of 30% and lower was always the number to fear, which is why I have been quite uncomfortable hanging out in the 30s this summer. But my doctor told me yesterday that he doesn't usually recommend people for transplant evaluation until they need oxygen at rest. This was actually a big relief to me because I feel like while my numbers might be bad, my ability to do stuff without oxygen is still really good. I'd like to think that all the exercise I do helps that, but who really knows. The big fear, in my mind, continues to be that I would get a really bad infection that would plummet me quickly downward and where I sit now I don't have the reserves to handle something like that well.

Anyway, like I said, lots going on. I will keep you posted on what we decide to do.

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.

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.

Oxygenville

 

I was trying to think of a useful health analogy to describe what's going on with me lately and the word "oxygenville" popped into my mind. If you are wondering what oxygenville is like, it is slow without necessarily being leisurely, everything seems to take longer than it should, it is restricting, limiting, frustrating and also a little bit mellow.

Since I am now caught up on all of my happy vacation photos, I will now delve into a bit of what has been going on with me health wise. I got sick while we were out in Montana. It was four days after the flight out there and since I was not around any sick people (and am always very careful) I assume I caught something from the flight itself. This is frustrating because I wipe down everything around Todd and I's seats, wear a mask and sanitize my hands regularly on plane trips.

In any case, Todd and I were able to go on our excursion to Glacier and Waterton National Parks for three days and were able to do most of what we wanted before we started feeling badly. (We both got sick about the same time.) When we got back to our home base in Ennis (Todd's aunt Susan has a cabin there that we all stayed in), all of the four aunts took off to Yellowstone for a couple of nights leaving Todd, his brother Brad and I in charge of both Todd's ailing dad and Brad's four-year-old son Sawyer. (For those of you who don't know, Todd and Brad's dad is dying of cancer and the trip to Montana was a last chance for all of the family to get together with him.)

I was feeling better and worse depending on the day, running some low-grade fevers, coughing and more congested than usual. My oxygen also got low, but that was exacerbated by the elevation out there. I didn't start feeling truly terrible until the morning of the flight home. I woke up with a decent fever, exhausted, feeling like total crap. And of course there was nothing to do but fly home!

I went to see my lung doctor the following day. I felt so bad that I didn't even do lung function tests at clinic because I knew I was going to need IVs. If I had done them, I have a feeling they would have been low enough that Dr. C would have wanted to put me in the hospital. As it was, though, stuffed full of Tylenol and all, I presented better in clinic than I thought I would. I really thought there was about a 70% chance I would be admitted to the hospital, but as it was, Dr. C said if I felt well enough to take care of myself at home then that was okay to do. So I went home and eagerly waited to start on IVs the following morning.

Meanwhile I'm starting to feel really really bad. I am on round-the-clock Tylenol, having headaches, feeling zonked out of my mind, absolutely zero appetite, coughing a lot and my oxygen is low for me. When my nurse comes to access my port Wednesday morning she says, "I've seen you worse" - but I have a feeling it's a close call. I'm also a little anxious because the doctor has changed one of my two trusty IV antibiotics and I'm hoping so badly that doesn't slow down my recovery.

The first three days on IVs I'm still miserable. My fevers are going up into the 101s, I'm sleeping all the time, still no appetite, my blood sugars are through the roof in the 300s and 400s no matter what I do, I'm wearing my oxygen at night and most of the day because of low sats and I'm still having headaches, my PFTs are in the toilet, I'm feeling short of breath at the slightest exertion and to top it all off I develop a pain in my left side near my diaphragm - the doctor thinks it's from infection being close to the lining of the lung. In short, I feel each day like every time I have been this sick I have been in the hospital. And it's fucking miserable being in the hospital when you are that sick with none of the comforts of home (furry and otherwise.) I kept going back and forth about feeling I should be admitted, but I'm glad that I stood my ground with being home - I think I made the right decision. Too many bad/annoying/bullshit things go along with being hospitalized.

The next few days were a little better. My fevers went away, I was able to get off of the oxygen more, I had a bit more energy, blood sugars were not as crazy, my shortness of breath was easing up, headaches were better, pain was getting better. In short, I started to feel more human again. It's like that time right after a fever breaks and you say to yourself, I'm going to make it. And I knew that I was out of the clear as far as the hospital which was a huge relief.

As I approach the 7-day mark on IVs, I again start feeling worse. My nurse, who comes to my house to draw labs and change my port needle, reminds me that this means that things are breaking up and starting to move out. She says my lungs are sounding better - so this is a good sign. However, I am feeling more tired as the bugs proliferate and die in my body, and my oxygen is once again low meaning I am wearing the oxygen almost 24 hours a day now.

There are many corners to turn during a CF exacerbation, but I feel like I am turning another one now. Yes, my oxygen is still low (my doctor wants to make sure on Monday I didn't develop a blood clot from flying which would be making my sats low). But I am feeling a little more energy - in fact I am almost to the point of being ready to exercise, which is the real thing that is going to pull me out of this. Exercise, Prednisone and time.

My freaky clinic appointment

My last dose of antibiotics tonight...sa-weet!

I wanted to tell you about my appointment today. (Follow-up from being on IV antibiotics for 2 weeks.)

The order of things was a little strange. I actually saw my doctor before (and again after) I did my lung function tests because the PFT lab was backed up. We agreed that I had made the right decision to do IVs and were catching up on other things when the lab technician came to get me.

On my first blow, the absolute strangest thing happened...I was at the end of my expiration, squeezing every last bit of air out of my lungs, when I suddenly found myself not at all in my own body anymore. It lasted for 15 or 20 seconds. I was trapped in a semi-conscious state, heaven and earth collided and everything was one. In short, I came very close to passing out - which has never ever happened to me before.

I told the technician but she wasn't too surprised. She had some sort of name for it, "vageling down" or "a near syncopal episode" - which was a fancy way of saying you almost passed out: you get light headed, start seeing stars...  It can happen when the blood rushes out of your head too quickly, which can happen with forced expiration like during a PFT test, but it may be worse since you are continuing to push air/exert pressure on the vagel nerve. I guess it was like a gigantic mondo head-rush, the difference being that it lasted longer. In any case, I was relieved to know that I was not the first one to experience this.

When I asked WHY this could have happened, she asked if I had eaten - yes, I had a normal breakfast; She said that I could have been a bit dehydrated - but I have been drinking water like a fiend for the last week as well as mostly staying out of the heat and besides it's only 83 degrees today! In other words, both of her suggestions were extremely improbable, so I found myself trying incessantly to figure out what might have been different about today than other days. I still have no idea.

"deepbreath" from lamchop.wordpress.com

 Back to PFTs: I took it easy on the next two blows. As in - I stopped way before I was actually out of air so that I wouldn't come to the point of la-la-land. And all and all, my numbers were up about 5%, which is good but not spectacular. I am happy with it, though, given how I am feeling symptomatically.

Honestly, I was a little shaken after 'the incident' for the rest of the appointment. I had told both my doctor and the technician and neither of them were too alarmed. So I didn't feel in any kind of medical danger. But when something weird and unexpected like that happens, I automatically feel anxious and my brain goes into detective mode.

I just hope that it never happens again.

 P.A. bacteria in a petri dish, Harvard University

The second thing that was kind of strange: my bacteria cultures from two weeks ago (i.e. right before I started IVs) showed my bacteria concentrations lower than I remember them being in a long time. Usually they are all 3 + and 4 + (4++ is the max), but everything was 1 +, except for my multivorans which was 3 +. My doctor said that in his experience, over time one bug tends to win out over the other ones. Is that was is happening, or is this just an accident? Is this a new trend or just a fluke? There can be a lot of variability to these tests, so I'm not putting too much stock in it, but I will be interested to see what happens going forward.

One other note on that. Not that it is necessarily good or bad, but the multivorans is one of my better bugs in terms of antibiotic resistance. In other words, lots of antibiotics still theoretically work on it (unlike my other bugs that are more particular.) So like I said, I will be watching the 'Battle of the Bugs' closely.

And, finally, a bit of good news. I had a bone scan this morning and both my femur and hip bones were WAY UP in density - yay! I am not sure why this is - I had an IV-bone strengthener about a year and a half ago, but with all of the Prednisone I take and the caffeine that I drink -- let's just say that I consider myself very lucky.

Sometimes it doesn't pay to wait

My co-worker, Mike, and I at TNC's River Jam Tent at the US National Whitewater Center - June 2012

Hello loyal readers!

It has been some time since I felt inspired to write, and you know what that means. Time for a quick run-down of what has been going on!

The big(ish) news is that I am currently on a 2-week course of IV antibiotics. I had not been feeling spectacular for a while (more congested, coughing more than usual...) for a while, but I was totally hanging in thanks to exercising a lot and my trusty stop-coughing go-to pills, guaifenesen. The cards really started to fall the week that I had a grant writing workshop in Greensboro mid-June - I was feeling super tired and run-down. I got started on some oral antibiotics which worked really well for a week or so when I went to see my doctor.

At that time, my numbers were a hair below what they were last time, which was also a little lower than they had been the time before that. My real concerns were my energy dropping and also that I have two awesome vacations coming up that I want to be in tip-top shape for. So we went for the IV antibiotics. And I knew right away that I had made the right decision. (And, for the record, Todd knew like three weeks before then that it was time for IVs soon.)

The day after I started on them I felt really horrible: tired, achy, malaise, fever, no appetite. But since then, things have been going along pretty well. I haven't had any trouble with the Tobra (I had some tinnitus the last couple of times I was on it, which can correspond to hearing loss) except that they had to increase my dose because my levels were too low.

But the really weird thing about all of this? Unlike every other time I've been on IVs when I would totally beat myself up about missing work and always be trying to do more than I should, I have been totally enjoying my time off! I feel kind of guilty saying that. But who wouldn't love an unexpected 2-week vacation? Of course it's not all fun, but largely I have slowed down and taken time for myself to heal. And it feels really nice.

Image taken from sodahead.com

In other news:

• I am finished with my PT for my herniated disc/sciatica! And I leave there having a solid set of exercises that work really well to control my symptoms. Still have not gotten back to yoga - that is the next step. Also still doing monthly acupuncture and weekly massage (which is absolutely fantastically awesomely paid for by my insurance.)
• Todd's dad has been staying with us a lot lately - he is getting cancer treatment here in Raleigh and lives several hours away. He started chemo (for the second time) recently and he's having a bit of a rough time of it. His health has been really up and down, and it's hard on all of us. Especially him. All of us are focused on our trip to Montana right now.
• I got out with Elaine to sell some soap last First Friday! We sold it at a friend of our's bar. I know it sounds weird, it kind of is, but it's fun. 
• Super excited about going to the beach with my family during the third week of July. And also  for our Montana trip in August!
• Work is going really well. I have an intern! Who is both awesome and really talented. This is my first time really managing somebody and I really like it. Also, I was doing a bit of traveling in June and July - two trips to Charlotte and then Greensboro for the grant writing class. It was nice to get away.
• Probably not news to any of you that the weather here has been brutally hot! We just broke the record for the number of days in a row over 100. Between that and the holiday last week, it's as good a time as any to be missing work and just laying low at home.

Image taken from kbosweeney.wordpress.com