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