Thursday, August 25, 2016
With spending so little time with our rheumatologists, we often don't get an opportunity to ask questions and that can create a lot of fear around treatment. My new post for HealthCentral clarifies the options so you can get more specific in the questions you ask. And that will help you make better decisions about treatment:
"Your rheumatologist has just rattled off at the names of a number of medications. All these multisyllabic words sound like a foreign language -- how will you know what is the best treatment option for you? Let’s demystify RA meds, so you can make better decisions."
You can read the rest of the post on RA treatment options on the HealthCentral RA page.
Wednesday, August 24, 2016
Starting today off with a small poem:
The smell of burning insulation
Smoke rising from my wheelchair
But I should start at the beginning.
Day 1: In which my wheelchair develops a whistle
Sunday afternoon as I was about to nap, I noticed a high pitched whine coming from somewhere. At first, I thought a child in one of the surrounding apartments have gotten some sort of irritating little flute thing, but then it continued longer than anyone but a pearl diver could have breath for. Weird. It eventually stopped and when I got up, it was gone.
Later in the evening, I noticed the whine was coming from my joystick when I turned off the power. This has never happened before, so I promptly emailed Dave the Wonder Repair Tech.
(Expositional aside: Dave very recently started his own business in partnership with Paul the Equally Wonder Repair Tech. Both of them wanted to work in a way that focused on excellence in customer service and recognizing that timely repairs are essential to the lives of people with disabilities. So they started soul: The Wheelchair Studio.
Dave got back to me within minutes. He thought it was likely my capacitor venting and that whenever I wasn’t driving, I should make sure to turn off the chair. Because if I didn’t, it could fry the circuit board. And naturally, the circuit boards for this model wheelchair are discontinued.
Day 2: Smokin’!
Early Monday morning the chair starts stalling out. I leave a worried message for Dave and he moves up our appointment.
The good news is that it’s not the capacitor and Dave does mysterious things to the innards of my joystick. (dammit Jim, I’m a writer, not a repair tech).
And then we make jokes about how Regan – because this is the chair that has been named after the girl in The Exorcist — has a pattern of doing well for a while, but once the repairs start, there’s a domino effect and they keep going.
“Isn’t it the rule of three?” Dave laughs. I laugh, too, but I also knock wood.
Everything works fine and I’m very much relieved. That is, until that evening when the speed indicators on the chair start changing as I moved the joystick. Oh, and also on their own when I’m sitting still. I email Dave again and again, he gets right back to me. Tells me it should be okay, that is likely a loose wire, and that he’ll be back Tuesday.
I’m sitting at my computer a bit before 11 PM when the joystick display starts beeping, a red light comes on and then…
Then smoke begins to rise from the joystick box.
I’ve used a power wheelchair for almost 40 years and this has never happened before.
While the smoke dissipates, I might have had a small attack of hysterics. You see, fire is my thing. Or rather the thing I fear the most. And to be in the wheelchair, unable to get out of it on my own and right next to a smoking joystick box is one of the most frightening things I’ve ever experienced.
I send a freaked-out email to Dave, then call The Boy and fall apart. He comes down right away. I move into my new chair, which still needs adjustments and has been standing in the corner of my apartment like a purple sculpture. Sitting in it increases my pain levels, but at least I can move independently.
Day 3: Fried circuits and the best repair techs in Toronto
Yesterday, Dave comes down again and take the joystick box apart.
Yup. That`s fried alright.
He installs a loaner joystick that fits my joystick program (which is two generations behind the current one) and tells me he’s miraculously located a replacement circuit board in the States and is in the process of getting it.
And we all draw a deep sigh of relief. Well, that is until the loaner joystick starts stalling out later in the day and at this point, I have a mild case of hysterics. Again, Dave responds immediately and is going to do some research. Clearly something more is going on in the innards of my wheelchair and he is determined to make it work.
I know that he will. Dave is the MacGyver of wheelchair repair techs, having a profound depth of knowledge, as well as a bit of a mystical connection to the things. He just gets them. He and Paul also truly understand that this equipment serves as the legs of someone who has a disability. They treat repairs with the seriousness and speed they deserve.
But, you might say, he didn’t fix the chair yet. The thing is, it can take a while to figure out what’s going on. When you hear hoofbeats, whether in medicine or wheelchair repair, you start by thinking of horses and gradually expand to include zebras. Sometimes, especially with Regan, you have to go all the way to hippopotamuses before you find the problem, but you still start with horses. It takes skill and dedication to work your way through what’s going on and soul: The Wheelchair Studio has that in spades. They also have that true dedication to customer service, something that has been increasingly missing in the larger medical equipment companies. Who else can you email in a panic at 11 PM and get an immediate response?
If you live in the Greater Toronto Area or Durham and are looking for highly skilled technicians who are dedicated to helping you get mobile so you can get on with your life, you can find no better than Dave, Paul and Jody at soul: The Wheelchair Studio.
Tuesday, August 23, 2016
I’m incredibly honoured to have been nominated in the Patient Advocate category of the Health Influencer Awards.
I would greatly appreciate your vote if you like my work as an advocate and writer.
The Patient Advocate category is for “Patients who have gone above and beyond to share their personal story, network and speak out to support other patients to influence better health outcomes.”
The Health Influencer Awards recognizes “the Best of the Best in the digital health field,” and is given out by Remedy Health Media (the parent company of HealthCentral) together with New York City Health Business Leaders.
Voting is open until September 2. And please consider sharing this with others.
Friday, August 19, 2016
Wednesday, August 17, 2016
A quick recap: In March, I got a bad flu, which developed into pneumonia. I ended up in the ICU in an induced coma and on a ventilator. Due to a bit of a mishap (understatement of the year) when being extubated, I had an emergency tracheostomy. Weaning off a tracheostomy and getting back to breathing on your own is a bit of a process.
In my previous post on what it is like to be on a ventilator, I wrote about the equipment that’s in your throat after a tracheostomy. A cuffed tube is inserted in the tracheostomy (i.e., a hole in your throat) and the cuff is inflated to make sure that the only air that’s is in your throat comes from the ventilator. Inserted into that tube is something called an inner cannula, which can be replaced as needed, for instance when the inner cannula gets gunked up (medical term, for realz) with lung secretions.
Eventually, you have to wean off both the ventilator and the trach. These tools have been really helpful while you were very sick, but ideally, you shouldn’t be on them for the rest of your life. The early stages of this process are little foggy for me — I had been very sedated and it took quite a while for me to get my brain back to the stage where wasn’t terribly fuzzy. I could be wrong about some of this, although I did consult The Boy on some of the details.
Weaning off the ventilator
The first step to weaning off the ventilator is to decrease how much it’s breathing for you. Not too long ago, The Boy told me that most of the time, the ventilator was doing 60% of my breathing or thereabouts. When things were really bad where the ventilator was up at 100%, but let’s not talk about that.
One of the things that confused me was that although the ventilator was at a very low level and eventually off, I still had that tube in my trach. The tube was emitting humidified oxygen to help me breathe easier. One of the first stages of weaning off the ventilator is by wearing a mask on top of your trach. The mask is connected to the tube, so you still getting oxygen, but the ventilator is not breathing for you.
It is surprisingly tiring to breathe on your own after being on a ventilator and they start you out slow. I think my first session was an hour and a half. They increase to several sessions a day, each of them gradually longer. Once I was successfully able to breathe on my own for an extended time, I was officially taking off the ventilator, but still had the oxygen tube connected to the trach.
Weaning off the trach
Almost all of the steps outlined below are scary. The actual medical procedure involved in several of them is not as bad as you’re convinced they are, but they involve your breathing and that’s where it gets unnerving. If you’ve been on a ventilator and for a while, it feels sort of safe. Increasingly breathing on your own? That’s entirely different. But as I became fond of saying every time I moved on to another step, sooner or later, you have to jump in the deep end. So take a deep breath (!), Hold someone’s hand, and go for it.
Deflating the cuff. About simultaneously with this is the deflating of the cuff on the trach the tube in your throat, which makes it easier to breathe on your own.
This is also when I tried a speech valve. This is a little doohickey which is placed in the trach opening, enabling you to speak. This didn’t go too well for me. There wasn’t a lot of room in my airway because the trach equipment took up what space available in my supposedly small throat. It was much too much work to speak and after 10 minutes, I was drenched in sweat. So they took it out, but not before we did a recording of my weirdly robotic voice (the hissing is the oxygen).
I’d have to wait until further along in the process before I could speak again. The next steps would take place on the regular ward, so I said goodbye to the ICU.
Fenestrated tube. About a week later, they replaced the cuffed tube with the one that didn’t have a cuff and which was fenestrated. That means there was holes in the tube that went into the tracheostomy, creating more room for air to move through. It was an interesting process. My bed was flattened out and they popped out the hardware. I’d been dreading this — the thought of having people rooting around in your throat while you’re fully conscious scared me, but it turned out not to be too bad.
And then came the exciting part.
Corking. If everything’s gone well, the next step is corking. This is a totally charming name for something very obvious. They put a cap on the hole in the tube going into your throat, which means you are breathing fully on your own through your mouth and nose, instead of your throat. I was really excited to be able to blow my breath out through my mouth again for the first time in about a month. I spent several days doing this quite a lot.
And something even more exciting happened: being corked enabled me to speak again. I didn’t sound quite like myself — there was a plasticky sound to my voice and I only had enough breath for short sentences. But it was speech. Finally.
As with the mask mentioned above, corking takes place in sessions that gradually increase. You’ll still be encouraged to cough to clear your lungs of any residual gunk. Don’t be surprised if the cork flies off. Mine did. Several times.
And then comes the next really exciting part.
Decannulation. This is a very fancy word for getting the trach out. First, I went to the ENT clinic with a resident who put the scope up my nose and into my throat to assess my vocal cords. That’s not nearly as terrible as it sounds. Mainly, just makes you feel like you really have to sneeze without actually sneezing. My vocal cords were still a little swollen but air moved through them just fine. A couple of hours later, a respiratory therapist came to my bedside, popped off the trach equipment, and put a large square Band-Aid on top of the: my throat. And yes. Of course I have a photo of what that hole looked like. I’ll leave it up to you whether to share it – are you game or are you squeamish? Leave your vote in the comments!
Breathing. Just a few hours after getting decannulated, The Boy and I were sitting on a quiet floor looking at a view of the city. I took a deep breath and realized that I hadn’t been aware of my breathing for quite a while. It was astonishing and made me realize how much work breathing had been with all that stuff in my throat. So quickly going back to breathing being effortless and just happening in the background was a true gift. I promised myself that I wouldn’t forget what that felt like, but it didn’t take too long of breathing normally before it just happened in the background.
Throat farts. The tracheostomy is left to heal on its own without sutures. There’s a bandage on top of it and you are instructed to put your hand against this stoma (hole) when you talk or cough. This will help it heal quicker — if you don’t, the wound gets opened up a little bit every time you cough or talk.
They don’t tell you about the throat farts, though. As long as the hole remains in your airway — and it can take anywhere from a few days to a few weeks or months to heal, depending on how long the trach was in — air will escape when you move, talk, or cough. It has to go somewhere and seeks the path of least resistance, i.e. out the side of the bandage. This sounds remarkably like farting and I found it endlessly amusing.
If you can hold your hand against the bandage, the farting lessens. I couldn’t do that, so the spoon I’d used for a number of other things (push up my glasses, operate the buttons for adjusting the bed in the hospital, etc.) turned out to be really handy in this respect, too. Got me some weird looks on the street as I held a wooden spoon against my throat. I thoroughly enjoyed bringing a touch of the surreal to people’s lives.
Although the tracheostomy has healed, I still don’t quite have as much breath as I used to. It’s better than it was, though, so it’s obviously just a matter of building up stamina. I’m thoroughly enjoying being able to talk as much as I want, but my voice gets hoarse easier than before.
Not surprisingly, this does not keep me from talking, though.