The Little Cystic That Could

I missed blogging last weekend because Todd and I went up to my Aunt Inger's memorial service in Virginia Beach. There was other sadness as well: we found out that Todd's cousin Fran (whose kids we had raised money for their college fund) finally passed away from her cancer. Additionally, one of my CF buddies, Shannon, who I have known a long time and recently reconnected with passed away kind of suddenly.

So it has been a period of processing, reflection, sadness - best done internally and through intimate talks with friends and each other.

My Aunt's memorial service was nice - most of the family did something for the service, singing, reading, remembering. We had the most amazing spread of Finnish and Swedish baked goods afterward. It was really good to spend time with the family for the weekend - I don't see those people enough.

 

Big News

The big news around here is that I have officially been referred to Duke for a lung transplant - and in my mind, this cannot be happening soon enough. I am not sure what the next step is, but I intend to find out and push for evaluation as soon as possible.

It is so crazy to feel my lungs slowly failing me...just one set of organs so vital to living...without them, I have no life. How can I be 35 and dying? It seems so unfair to me, to Todd, to my fur babies, to my family and friends, to everyone around me. I know I'm not responsible for this, but I'm still really fucking sorry for everyone around me who is being swept up in my downward spiral/journey to a second chance at life with good lungs.

Why Can't Evaluation Come Soon Enough?

Well, true I am not laying near death in a hospital bed - if I were, it would probably be too late for transplant anyway. But the fact is I am in a very precarious position. My last round of IVs officially ended four days ago so I should be feeling my best right now but, well, I'm not.

Let me back up. Before I started the last round of IVs, it had only been about a week since I ended my last round - in fact, I have spent 8 of the last 14 weeks on IV antibiotics. Because I had been on so much Tobramycin lately (which can be taxing to the kidneys, so we keep close tabs on them while I am on it), my doctor did not want to give me Tobra this last time.

I disagreed. For one, my kidneys are doing great. Two, judging on times I have been on only the other IV antibiotic, Ceftaz, I didn't think that would do much good. So we negotiated one week of Tobra and the second week on Tobi, the inhaled form of Tobra (much easier on your body since it's localized delivery instead of systemic.)

The first week I did well - I improved, noticeably. Yay! (Seriously, yay, because as far as we know this is the only combination that works against my bugs now.) But then almost as soon as I was off the Tobra I began to decline...worse oxygen saturation/needing oxygen more and more, increased congestion, thicker/darker/increased secretions, less energy. Sadly, there is just no explanation for this other than the fact that my bugs are so virulent that they begin to regrow immediately after they are not getting the very best that we have to throw at them.

This is Scary

I would totally be lying if I said this didn't scare me. I feel like my therapy is all I have now (and my pulmonary rehab/exercise to a lesser extent) to keep this crap from consuming me. I feel like I could be one health emergency away from being done in - a big hemoptysis, a lung collapse, catching a bad bug. 

On the plus side, as long as I get to Duke soon, I am still getting in there at a very good time. My support system is as good as it has ever been - Todd, my family and friends have been amazing and people are coming out of the walls to offer to help with all of this. Also, my depression has been a little better, but with everything happening and all this death surrounding me, I've also been a little numb...that may be normal, or I may be on too much depression medication - who knows. For now, I'll take not being consumed with sadness.

Full-time Patient

A few of my online CF friends have "full time patient" or "works at CF" listed as their careers on facebook. I used to kind of snicker when I saw that. Like, seriously, I've been the patient for years and I still manage to have a very full and productive life that does not revolve around CF - spare me the drama.

It's the same for some healthy people who may see "full time mom" listed as a career and think, seriously? That's all that defines you now? That is your life work?

But now I understand. Because CF really and truly has become my full time job. It takes me a minimum of 2 hours to get out of the house to do anything in the morning - and I'm often late to everything these days. I am trying to get a fourth vest treatment in every day. On the days I have pulmonary rehab (Tuesday and Thursday every week), it is amazing if I can get anything else done that day...doubly amazing if I have the energy to BOTH go to the grocery store and cook dinner. I used to run "errands" but now it's more like "errand."

But my home is still my castle. And even though things may pile up for a couple of days, I still manage to keep things looking decent, especially for visitors. Really, I have to or I would go insane.

And I have so many appointments...  I try to give myself Mondays off, a day to catch up on phone calls and house work. For example (and this past week was pretty light) Wednesday, had I not started on IVs, I was going to see my shrink and acupuncturist. Friday, I had both Tobra levels and a gynecology appointment at the same time! (first time for everything) Then in the afternoon, I drove to Chapel Hill to have a Doppler scan to make sure the pain in my arm wasn't another blood clot (it was not - thank god!!)

Oxigination

Sometimes I try to step back and see how much my life has changed in the last three months. Coincidentally, this is the amount of time I have been on short-term disability from work. I SO wished the extra time dedicated to my health would have me in better, not worse, shape than when this all started. But sadly that's not the case.

Probably the most obvious changes are a constant nasty cough and the need to wear oxygen more and more of the time. Well, and my depleted energy, but that's not always noticeable to people if I'm acting like my normal bubbly self. I am trying to embrace this new roll, but it isn't always easy. And I've learned pretty quickly that I have to let a lot of things go - whether it be house work, a non-essential errand, or that thing I've really really been wanting to get done but just haven't had the time or energy.

My biggest challenge right now is the mental game, though. I continue to research everything and visualize the possibilities that lie ahead for me - both good and bad. I want to try to prepare myself as much as possible. I know that things are going to get much worse still, and I want to be able to accept things as they happen.

I am aware of all the scary possibilities, but that doesn't mean that they have to happen to me, or, if they do, that they have to be scary. Not sure if that makes sense. I am training my inner Zen master.

A Rough Time

This is not going to be a happy blog post. Last week was a very bad week.

I had not been doing well mentally going into it - having a hard time with all of the new changes in my life (not working and getting sicker.) Then Todd left for a week, my Aunt died, I was hosting a bachelorette party at the end of the week three plus hours away. Then I came down with some kind of body ache/fevery virus for two days (less than a week after coming off IVs) during which I felt absolutely miserable. To top it all off, my blood sugars were running in the 300-400s because of problems with my pump. It was one of the lowest times in my life.

But, I trudged forward. I don't mean this in an 'aren't I amazing' kind of way but rather a 'I was so lost and downtrodden that I had no idea what else to do other than attempt to put one foot in front of the other' way.

Fortunately, my fevers broke, I started feeling better, I upped my antidepressants, I got tested and was once again negative for the flu, I said to hell with my pump and switched back to shots ... and I made it to the mountains for the weekend, which was a great success and a lot of fun.

But the best part, honestly, was coming home from the mountains to Todd. Problems don't get solved or go away when you can talk to someone you love and trust so much, but they do become something that seems somehow more manageable. Plus, you know how sometimes being able to say something out loud makes it less scary? I felt like that, too.

My moment of truth

My breathing has not been great. And I knew it was going to be even more of a challenge with the altitude of the mountains. It makes a BIG difference. I was running my oxygen basically at full blast up there (5 liters) and still not able to do a whole lot without de-satting. I took a shower and my sats went down to 80 - that's the lowest I've ever seen them at. I really had to go slow and pace myself - I felt the life of a very sick person had suddenly been thrust upon me.

When I was driving home, it hit me: my lungs are failing. They are getting worse and worse, a little at a time. I'm not trying to be negative, it's just something I feel. And the worse my lungs are, the bigger the small changes feel.

I'm scared. I'm not ready to die - who ever is. And it struck me that my brain could be so alive and yet my lungs on their way out...but I guess that is how a body works. It goes until the weakest part fails and then the rest is forced to follow suit. As intellectually puzzling as it feels, it is the way of the world.

So two things are happening. I am trying to reassure my ego with my zen self that this whole process is okay...I don't want to waste any more time or energy - precious energy! - than necessary fighting the inevitable. On the other hand, I want to continue to be the realistic, proactive patient that I am and get to Duke for transplant work-up before it's too late.

This week ends three months of my short-term disability. I can't express how frustrated I am with where I am at, with my lack of improvement. But at the end of the day I know that I have done everything I could have done that I am willing to do to get here. So I am okay with it.

Until later -

In a Funk

Today is my first day off IVs in three weeks. I sleeeeept in. It felt so amazingly good last night to pull out my port needle and take a shower. Three weeks of bathing in the sink and washing hair over the tub can really get old sometimes.

It has been a week of thinking a lot about the big adjustment in my life. I realized that I have gone from a part time job that I love to a full time job that completely sucks: I get no breaks, no vacations. (Though I can't say there are no perks iPad, iPad!!) While I've been a bit down about all of this, I think it's only natural stuff for me to be going through.

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On a positive note, here is something that is going well for me right now: my lungs are about the best I can hope for nowadays since IVs (you might not believe it by my cough, but it's true!) I went to the pulmonary doctor last week and my numbers were up from 31% to 32%. "Thank goodness for small favors," as my acupuncturist would say.

More good things? Rehab is going really well. And did I mention I'm off IVs?? Geez, I couldn't wait for this round to be over. I did the additional (third) week since I had come down with a cold (so, kind of preventative) last week, but I'm not sure it ended up doing much. The virus ended up settling in my sinuses as opposed to my lungs. Also good: my back pain has been nary an issue lately. Awesome!

And now for some bad things: This sinus infection is slowly slowly working its way out of my system - in the meantime it is making me super extra tired. Thank goodness the headaches have stopped though.

Also, my ears are totally lit up (tinnitus/ringing) from all the Tobra I've been on. Went to the ENT this week and my hearing is diminished in my left hear but still technically in normal range. Yay for that. But annoying the stuff I have to deal with constantly now.

Also bad: I have been feeling really down this week, struggling not just with not working but also with not drinking. I don't even know why I'm not drinking. I just know that I can't right now. But when will be the time to start again?? I just want a normal life back and, in my brain, drinking was part of a normal life, healthy or not. I want to escape sometimes - can anyone blame me?! Of course not; that's why no one would ever tell me that maybe I shouldn't drink so much before I stopped.

More bad: I'm tired of not having any energy! I feel like such an old lady. Hopefully some of this is from the sinus infection but it is frustrating nonetheless. My acupuncturist reminds me how much energy my body expends just breathing. Yeah, yeah.

And last but not least: My aunt Inger passed away today. She had an aneurism yesterday and there was too much damage. It is incredibly sad - this was the woman who is responsible for much of my "shaping up" (i.e. learning some manners) as an adolescent, was responsible for me getting my first bra and was key in encouraging me in my writing by being the first subscriber to the magazine I used to create. Inger was a total character. She had the most unique and joyful laugh I've ever heard. She emigrated from Finland as a young woman and never lost touch with that part of herself. I have so many good memories of her and her family. She will be missed by many. A sad day...

L


Picture credit: Empty, publicdomainphotos.net; Owl, mycutegraphics.com; Dead flower, tanyaplonka.com