Tag Archives: cystic fibrosis

The chaos dance

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Two steps forward, one step back.

Nighthawk is home from the hospital. He came home last Friday, along with all the supplies necessary to do antibiotic IVs from home. It’s not an unusual step for the treatment of Cystic Fibrosis and it sure beats being cooped up in a hospital where you have no control of your schedule, or who handles your care, or any of the fun details like that. And we have vastly superior mattresses, pillows, blankets, televisions, computers, and food than the hospital could provide.

On the other hand, there’s a regimen and routine to hospital life that is easy to adjust to when you are too sick to function, which you lose when you get out. Now instead of someone waking you to start your IVs, you up have to wake yourself. Instead of someone bringing your inhaled medication to you pre-assembled, you have to get up and put things together yourself. Instead of the medical staff coming to you (albeit on a schedule you can’t control, and for maybe 5 minutes), you have to drive to their office yourself. You finally get to sleep as solid six hours without the patient in the next room coughing or screaming or machines beeping, but you use all the extra energy taking care of yourself when you are awake.

Two steps forward, one step back.

For me, last week was three trips to Philly, four (somewhat abbreviated) days of work, and a lot of just trying to get my head back in the game. An eight-hour day interacting with a couple dozen people at work, followed by a half dozen more after hours in the act of caring for my household is more talking than I did in three days at home. Even just the work of driving was new for me, since a month of drugs that prohibit the use of two-ton boxes of metal is enough time to forget how many of your senses have to stay in “full alert” mode when you’re in charge of the big metal box.

To paraphrase my uncle, my mouth was writing checks that my body couldn’t cash.

By the weekend, having picked Nighthawk up and gotten him settled in at home, straightened the house and generally improved everything, I was running low-grade fevers and getting winded just walking the dogs around the house. So my second week back at work started with a half day, and then a half day of doctor’s appointments, x-rays, and blood tests. And orders to take Tuesday off.

Two steps forward, one step back.

The diagnosis, when all was said and done, under the opinion of two different doctors, is exhaustion. Tonsillectomy, pneumonia, sick dogs, hospitalized huband, gee, I don’t know where that might be coming from. The treatment is “Eat more protein, take your mulit vitamin, and rest. If you have to go back to work, take it slow and start with half-days.”.

And this is where I struggle, because on one hand, the doctors want me to “rest” until I have energy enough to function. But the insurance company that ensures I get paid during this timeframe works in absolutes: rest for how many days? All day or half days? With what restrictions for returning to work? The doctors, trying to protect themselves and knowing they can’t predict how long it will take me to rest and heal, say it’s up to me.

And I don’t know. I confuse responsibility with health on a regular basis. The responsible thing to do is take care of my husband, and take care of the dogs, and take care of the bills and the house and all of those things. The responsible thing to do is go back to work and earn a paycheck and contribute to society. I’ve generally been a healthy person — or at least a person who, when I got sick, would bounce back in 24 hours. Napping and reading books and playing the occasional video game in the name of “rest” is so far down my list of responsibilities that medieval monks would need to go to the second scroll to find it.

I thought I was responsible enough to go back to work after the first two weeks, when I could barely talk, was still in significant pain, and running constant fevers instead of this off-and-on nonsense. (“Am I healthy enough?” never really entered my mind.) After the third week I thought I was responsible enough to go back, but my healing wasn’t where it was supposed to be and it was more responsible of me to follow the doctor’s orders. Last week responsibility to my husband and my paycheck won out over responsibility to my immune system and despite the fact that my throat and body are healing very well, I used up what few reserves I have left.

Two steps forward, one step back.

Having visited doctors and rested most of Tuesday, I went in yesterday feeling much better than I did over the weekend, and decided I didn’t need extra time off. I could persevere so long as I got to bed early every evening. I attended two meetings, ate lunch with and cheered up a good friend, cleaned out my email (again) got a two-weeks-overdue report out the door, and despite drinking copious amounts of caffeine, almost fell asleep at my desk.

(I really need to take away my mouth’s checkbook.)

I finally started to believe the doctors about this whole “rest” thing. (One of my docs had said “Now you understand why people die from pneumonia.”) I arranged for the paperwork necessary to go back for half-days for a week and a half (look, absolutes!), and planned to start them today.

Except that today, Nighthawk woke up as sick and exhausted as I’ve seen him since he went into the hospital. Even just trying to do his own medications was going to be a serious drain on him. And a visiting nurse is coming over today, which only adds to the chaos and disorder. So rather than work a half day, I’m at home taking care of him, and trying to grab some rest when he’s napping.

Tomorrow I’ll be healthy enough and responsible enough to go back to work for at least a half day.

Tomorrow, tomorrow.

Two steps forward, one step back.

Two steps forward, one step back.

Not an improvement

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This isn’t the way I wanted this winter to go.

The tonsillectomy I had on Valentine’s Day has finally healed up enough that I should b healthy enough to work. That’s not to say that I’m 100% – when I saw the doc Thursday he put me at about 80% healed but good enough that unless something goes wrong I don’t need to go back for a follow-up and I’m cleared to return to work.

When I return to work, I’ll have missed 4 weeks and a day. Close enough to a month that I refer to it as such. Not normal for a tonsillectomy, which means I’ve spent the last week just trying to get this insurance company to talk to that doctor and that medical staff to call this set of nurses, etc. etc. just to make sure I get paid.

I’ve been out of work so long that the sweaters I bought will almost be a moot point. (Thank goodness they keep the office at iceberg temperatures I guess.) I’ve lost so much weight I don’t know if any of my work pants are still going to fit.

The pneumonia is gone, as far as anyone can tell. There’s still a tiny wheeze in one of my lungs but it’s not the lung that had the pneumonia. The fever broke a little over a week ago. Compared to two weeks ago, I have boundless energy.

Except that I don’t. I have enough energy to get the chores around the house done, and make sure everyone’s fed. I’m no longer napping in the middle of the day just due to the exertion of taking the dogs out, two loads of laundry and unloading/reloading the dishwasher.

The dogs are both healthy again, though Chance took so long to get over the stomach bug that hospitalized Kaylee that I still haven’t moved them back to a mix of wet and dry food – it’s all dry until I’m sure he won’t get the runs immediately.

We’re having other related training issues with Chance that I won’t go into right now. Suffice it to say it won’t be long until I have a professional trainer come out to the house to show me where I’m going off-course.

And then there’s Nighthawk, who is currently sitting behind me at his desk doing therapy. He started feeling sick well before I had my tonsils out, complaining of an occasional sore throat that just might be the same bug that cause my pneumonia for all we know. (I filed to culture anything when I was in.) While I was sick and hospitalized and home sick again, he kept everything under control at home, took care of me and the dogs, and still managed to work more than a few days.

It cost him somewhere around 10-15% of his lung function, which is a lot when you’re not working with a healthy set of full airways to begin with. There was zero hesitation from the doctors last week. Nighthawk’s going into the hospital on Monday for at least a week and will be out of work for at least three.

So now we trade roles. Tomorrow I’ll take him down to the hospital in Philly (a new one – the CF clinic moved) and make sure he’s OK and talk to the doctors about the Plan. Then I’ll come home and get ready for my first day at work on Tuesday. I expect that to be overwhelming and tiring.

It’s a catch-22. If we weren’t hospitalizing Nighthawk I could probably handle going back to work, because I’d have him to support me while I continued to gain my strength. And I’m sure that the benefits company would say that if I’m healthy enough to drive back and forth to Philly every couple of days, then I must be healthy enough to work. (And if I’m not healthy enough to work, then I shouldn’t be driving back and forth to Philly.) But my situation isn’t either drive back and forth to the hospital or go to work. It’s do both or do neither. So I’ll be doing both.

(I might quickly decide I’m doing both with the assistance of some vacation days. But I have to get back before I can leave.)

I have a lot of support from my awesome family, and I couldn’t have gotten through the last month without them. (If Mom hadn’t dropped off delicious leftovers this morning I don’t know what or if we’d eaten dinner.)

I’m glad Nighthawk’s going into the hospital, because he’s sick and he needs the kind of care that they’re able to give him. I’m glad that he has a team of doctors that are all over the problems and care very deeply about improving his health. I’m confident that, barring some other unforeseen catastrophe, he’s going to improve in health. This will not be the trip that kills him.

I’m afraid of this week, though. When last Nighthawk was hospitalized, I was in tip-top shape physically, and the mental strain coupled with the driving and the running everything was enough to wear me down in a week. This week, I’m not going in at the top of my game.

I didn’t want this to happen.

This isn’t the way I wanted the winter to go.

An update on us…

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Nighthawk is home from the hospital, as of yesterday. He’s still not 100% and we don’t know when he’s going back to work yet, but just having him healthy enough to come home is a great improvement over where we were 2 weeks ago.

We’re both exhausted, but on the mend. I took yesterday and today off to help us get life back in order… and to spend some time with this guy I’ve missed for the past week :) It’s a good thing I took yesterday off, too, because we thought he’d be discharged from the hospital in the morning and it was mid-afternoon before we were finally free to go. Ah, hospitals.

Anyway, the plan is to get the comic rolling again and stuff, so the period of radio silence should be over. Thank you all for your good wishes and your patience.

Suckage

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Sucks: when your husband is sick enough that you have to take an unscheduled trip into Philly to take him to the doctor.
Extra sucks: when you get sideswiped on the Schuylkill Expressway by an inattentive woman’s SUV on the way there and now have to get your car repaired.
Ultimate Suckage: when your finally reach the hospital, they decide your husband needs a “tune up” (run of IVs and therapy and such) to clean all the crap out of his system… starting Tuesday and lasting at least a week in the hospital and at least 21 days of IVs.

Yeah… my life’s going to be chaos for a little while. Expect sporadic updates at best.

But there are still 2 Idiocy comics in the queue for tomorrow and Saturday, so you’ve got that going for you.

Health care – a round-up

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This is mostly a link dump so I can come back and find these articles again if I need them.

And then there’s one of the most useful sites I’ve found on health care and politics so far, Politifact. These folks are taking those things you’re hearing on TV or reading in the paper and fact-checking them. Then, they post the results online with a grade ranging from “true” to “mostly true” to “half true” to “false” to “pants on fire”. They also occasionally check to see if a politician accused of flip-flopping on an issue did.

It’s a particularly good place to find information on who said what and whether it was true, because most of the news I learn about health care right now is third-hand (so-and-so on the radio/tv/whatever that congress said….) and that means that it’s getting blown out of proportion…. and when it’s a lie to begin with, well, it’s no wonder everyone is afraid and confused.

Probably more on this later, but for now I’m just trying to learn everything possible to find out what the hell’s really going on.

Great Strides this weekend

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So, last Sunday, my mom, basschica, and I walked in the breast cancer 5K in Philadelphia.

This Saturday, basschica and I are walking the Great Strides 10K in Valley Forge for the Cystic Fibrosis Foundation.

You might be a little familiar with CF, because Cole (from the much neglected Night Fugues thread of comics) was born with it. It’s a terrible thing to inflict a person with, even a fictional one, but they say to write what you know. What I know is that my husband also has Cystic Fibrosis, along with CF-related diabetes.

I’m not going to wax poetic on the consequences. The quick version is that this is a life-shortening disease that screws up every cell in your body. The two most obvious results are extreme congestion of the lungs, and disruption of how your pancreas is supposed to work (resulting in an inability to break down food for digestion, and often diabetes.) If you want to read about the effects of CF, read this article (which is about the bell curve in medicine but gives a very good outline of how CF works). And then, of course, there’s The Cystic Fibrosis Foundation website, which has another ton of information.

Adventures in Culinary Experience.

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So. Nighthawk is scheduled for a radiation treatment in two weeks, which according to all things thyroid cancer means that now he gets to spend two weeks on a low-iodine diet (LID). (Keeping low levels of iodine in the system now will result in what few thyroid cells he’s got left — the ones we’re trying to kill so they don’t get cancerous — getting really really thirsty for the radioactive iodine he’ll get two weeks fron now. Somewhere, one of my dozen-odd grammar teachers just cringed in pain at that sentence structure, but doesn’t know why.)

Anyway, the low-iodine diet means avoiding food high in iodine, only eating small amounts of food low in iodine, and mostly eating iodine-free foods.

Or summed up differently, no dairy, no seafood, no soy, no egg yolks or foods containing egg yolk, no chocolate, no iodized salt, no bread/bakery products because they’re probably fortified and/or contain iodized salt, no prepackaged food because it might contain iodized salt, or red dye number 3.

He can have six ounces of meat a day, pasta that doesn’t contain any of the stuff in the last paragraph (which means semolina or rice noodles, or yolk-free kosher egg noodles, thank you Manischewitz!), up to 4 servings of bread that we make ourselves following low-iodine guidelines, or other grains like oatmeal and similar grainy things or salt-free Matzos (thanks again Manschewitz!), sugar, jam, jelly, honey, soda, tea, beer, wine, fruit joices, and all the fruits and veggies you want as long as you’re not including rhubarb, marachino cherries, rhubarb, or the aforementioned soybeans.

Now, add to that the fact that with his Cystic Fibrosis and Cystic Fibrosis related Diabetes, he’s supposed to maintain a 3000 calorie per day diet (minimum) to maintain weight, and he needs to do it in such a way that he can keep his sugar under control.

Yeah, we’re screwed.

But so far in the last 36 hours I’ve baked cranberry-applesauce muffins, made LID-safe beer bread, and made tomato sauce entirely from scratch that wasn’t absolutely horrible. I’ve learned that my stonewear loaf pan is not yet seasoned to the point that it’s safe to bake bread without some kind of Pam. I’ve learned that a butter knife is not the optimal tool for prying bread out of a stonewear loaf pan. I’ve learned that sugar will cut the acidity from tomato sauce. Sugar, brown sugar, some honey, and gee-that-still-tastes-acidic-to-me more brown sugar might, in fact, be overkill.

And no, neither of us have any idea how much sugar’s in any of this stuff, so the diabetes, yeah, that’s been fun.

But I’m learning to cook…. that’s good, right?