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.

L'hopital - Day 2

Pretty view out the window this morning from the old 6th floor bed tower

After waiting over a day for a room to become available, I was finally admitted to the hospital last night (Thursday night.) I was feeling anxious on the way here. After all of my steadfast determination, the rubber was finally hitting the road...

I got my first dose of Colistin at 9pm - lucky for me that is when the Project Runway season finale started so I had that to look forward to and distract me. Have not had any reactions to it so far.

I let them give me a heparin shot last night - I figured it was probably a good idea since I am more disposed to getting blood clots having had one when I got my port three years ago. I was surprised that it barely hurt. However, this morning I woke up with a bump and a gigantic nasty bruise on the back of my arm. I have negotiated to instead of heparin doing the stocking foot pump thing while I am in bed.

I noticed as soon as I woke up this morning that stuff seemed to be moving in my chest. Could one dose of the antibiotic be doing that? Seemed a little crazy fast but not, my doctor said, impossible. I continued to cough up a bunch of crap during the morning and afternoon which was awesome. I haven't felt that was starting IVs since I can remember. So I definitely feel the Colistin is working/helping me and I can only hope that my kidneys will hold out.

After a nap, I rode about 30 minutes on the exercise bike in my room. It's pretty rickety but certainly better than nothing. Then my good friend came to visit - brought me hibachi chicken for dinner - and we had a good talk.

Signing off for now!

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.

Oh, Canada

Me and a tree: self-portrait

Went to Vancouver, British Columbia, the week before last for a three-day marketing conference. I was with two of my co-workers and it was so much fun! Flew out on Saturday and came back Thursday. Long days of travel but totally worth it.

Vancouver is very beautiful when the sun is shining which, from everything I gather, is not often the case in the fall as it was for us. Here are some cool pictures.

The view from my room...on the 16th floor! Practically the pent house.

The cutest sea otter I have ever seen, at the Vancouver Aquarium - a fantastic place.

Moose Mountie!*
*Mouse Mountie remains unpurchased in Canada :)

Waterfall at Capilano Suspension Bridge park

Cool old tree in the walkway at Capilano Suspension Bridge park. There were tons of boardwalks, tree canopy walkways, a cliffwalk (below) and other various look-off spots throughout this very beautiful (temperate) rain forest.

Three Amigos. These are my unbelievably cool and awesome friends from work that I went with to Vancouver. Kristen (left) is our philanthropy manager and is the most amazing supervisor ever; Debbie (middle) is our marketing/communications person and is wonderful as well. We had a great time traveling together.

Me on the cliffwalk!

Planes docked at Vancouver's water plane airport, a few blocks from our hotel on the harbor (or 'harbour' as they would write). It was so cool watching them take off and land.

View across the harbor on a very pretty day.

While in many ways, it seems like you are not in another country in Vancouver (going through customs - really??) in some ways it does - those are the things I most enjoy about traveling. It was cool using the different money, and hearing people say "loonies" and "toonies." I liked being able to strike up a conversation with an average Canadian person about hockey and have them actually know essentially what was going on with their local team. And the people there seemed very friendly for the most part. But geez was everything expensive!!

Switching Gears...

Now I know you all are dying to know (not really) how my back did through all of this with my having neglected PT for quite a while and how my lungs did while I was out there. The easy answer is that my back gave me a lot of trouble, mostly because of the awful chairs at the conference, but was easily controlled with Tramadol (my non-narcotic pain medicine that has basically become my best friend over the last two years.) My lungs did okay...

I like this map of Vancouver because you can see what a water town it is! It also makes it easy to imaging how beautiful the scenery is. By the way, the green area under where it says "Unique Media" is Stanley Park, kind of like their Central Park. It's a really lovely place with windy roads, lots of huge trees, walkways and people.

Expanding on that a bit, I did a lot of walking around in Vancouver - my lungs really like that - and rode the recumbent bike once at our swanky hotel, so I did get some exercise while I was out there. My coughing was well controlled with my go-to guaifensen "blue miracle" pills.

As far as oxygen on the flights, I did not use it or arrange to use it on the way out partly because I didn't think I would need it (sats had been running 97 or so), but really because it just slipped my mind that I would have to make arrangements to actually use it. (Turns out, you are not supposed to put a POC in your checked luggage because it uses a lithium ion batter - oops!)

However, I did have my pulse oximeter with me on the flight out and my sats dropped well into the 80s, so I knew I had to make arrangements for the way home. I will spare you the details, but suffice to say it ended up being a giant mess - there was about an hour of time when I was furiously making phone calls back to the States and was afraid that I would have to both push my flight back and shell out hundreds of dollars for either another portable oxygen conentrator rental, an extra battery, express shipping, another hotel room night, etc. but it worked out amazingly that I was able to use my own unit. Live and learn.

Yes, I missed you guys, too...

Now I am back home. I can never believe how much I miss my cats...if I had ten million years to spend with them, I would want ten million and one. My dad is still in the hospital in Cleveland, unfortunately - that has been worrisome. And I am getting back into doing my PT to see if it will help my back and I am exercising a lot and being more mindful of what goes into my body. I am going to see my pulmonary doc soon - maybe even this week - to make sure I'm in a good place going into our Belize trip in early November.

But most important of all - and for those of you who know me this will come as no surprise - it's hockey time, baby! Time to start cheering for those Canes.

Until next time,