Fed Up


It’s finally happening. I’m getting a feeding tube placed. My surgery is slated for November 24th, the day before¬†Thanksgiving.¬†


I don’t NEED it yet, not even remotely. My ability to swallow has not been hindered by my disease at all. I’m still able to eat perfectly. My breathing, however, is becoming enough of an issue that this surgery needs to move forward. Any time you go under anesthesia, there’s risks. But with my breathing numbers being what they are, the risk is far greater for me, and they are getting worse the lower my lung capacity gets. We need to get ahead of the surgery before it becomes completely impossible to perform. That’s why we’re doing this now.


Just because I’m getting it now doesn’t mean I have to use it. I’ll still be able to eat normally. Some basic maintenance will have to be performed daily, just flushing the tube with water and maybe changing some gauze daily. Eventually when eating becomes a chore, I can eat what I feel like eating and then just use the tube to supplement the nutrition I’m not getting because it’s too burdensome to eat. And then of course when I’m not able to eat at all, it will be my main source of calories. But I feel like that’s a long way off. My arms are going to quit before my jaws do. I’m going to have to have someone spoon feed me, before I have to use the feeding tube, but I think I’m going to be eating for a long time still. The installation of the feeding tube is literally just because I won’t be able to survive the anesthesia with my breathing being what it is for much longer.


We had the consultation last Friday, to answer any questions that I might have and to go over what the procedure is and nail down any details. I didn’t have a lot of questions, because I am a compulsive researcher and had already looked up a lot of it. I was told they were going to keep me overnight – THAT was a surprise. All of my research had indicated that this was a simple outpatient surgery. But no, my clinic typically keeps patients overnight for observation, so this will be my very first overnight stay in a hospital! I’m not sure how I feel about that, some combination of nervous about the procedure as a whole plus annoyed about not being allowed to sleep in my own bed plus excited for a new experience. I know damn well I’m not going to be able to actually sleep that night; no one ever sleeps in a hospital. I was kind of hoping to come home after the surgery and climb into my own bed while I was still kind of doped up on painkillers.


I’m not nervous about the surgery itself at all. It’s a super basic surgery, very little can go wrong, and the recovery rates are very quick. People in my support group have said that it’s not difficult at all except for the first day. The main thing I’m worried about is being able to transfer in and out of bed with a stomach wound. I basically have to use my arms and drag myself across the bed to get in and out to use the bathroom, and it’s a HUGE effort. If I’m absolutely unable to do so though, we have a Hoyer lift, and we’ve practiced using it. We’re not exactly smooth practiced professionals with it, but I think we can get the job done. I’m also incredibly pain tolerant, so the concern isn’t really that it’s going to hurt too badly to move, more that I will be physically unable to do so. I guess we will see how that goes.


The clinic called to make the appointment on Monday, and the first appointment they had was for Wednesday November 24th, the day before Thanksgiving. The date actually worked out very well for a lot of reasons, primarily because Jay has that week off work. He takes so much time off of work to take care of me I really didn’t want him to have to take more days off on my behalf. We don’t really celebrate Thanksgiving because it’s a colonizer holiday, but we do like to eat so we typically just overeat and call it good. We won’t be able to do that on Thanksgiving this year because I’ll be waking up in the hospital with a gut wound, but we can make up for that at any time really. We will have a make up Thanksgiving dinner. Maybe even two. No one can stop me. MWUAHAHAHA


I’ve been sitting with the idea that a feeding tube was coming for over a year now, and the idea gained more solidity earlier this year when my pulmonologist basically said no. Really. You’re going to have to do this and soon. The clinic before last, I made up my mind to bring it up the next time I spoke to him, and next Clinic I was ready to make the appointment, but then my pulmonologist retired and I had a new one who wasn’t quite as gung-ho about it. I thought about it and contacted him after Clinic was over though, and asked him to set it up anyway. I’d like this over with. While I still have my contributions to my out-of-pocket maximum paid, before all that refreshes, and just so I can be done with it. I’m not in a hurry to get it done, not at all, but it’s this big deal that’s been hanging over my head for months and months.


This post is going to serve as my announcement to my friends that I’m getting this surgery the week after next. I purposely allowed myself a week to sit with the knowledge that I had the appointment and everything was said and I was ready to go. I wanted to let feelings settle in, before I was ready to answer questions and ready to talk about it. I’m doing surprisingly okay. I kind of figured it would be a much bigger deal? And maybe it will be once the surgery is done. I know I will be a bundle of nerves the actual day of surgery of course. But the significance of this surgery has not devastated me like I kind of expected it might. This is kind of it. From here, the next surgery is going to be the installation of a ventilator if I decide to have that. And I don’t think I will, at the moment, but that’s a problem for future me to work out. But this is the next big big step, the next big concession to my disease. I’m getting a feeding tube placed because I’m not going to be able to eat food like a normal human being. I’m going to have to eat blended food and give up one of the things that I enjoy very most in life. I love to eat. The main thing I’ve missed during this whole pandemic is eating in restaurants. And while getting the surgery right now doesn’t mean I HAVE to use the feeding tube, it’s an indicator that I’m GOING to, someday. Unless of course, my breathing is so shitty that it kills me first, which isn’t exactly a happier thought.


For now though, I’m handling it just fine. I’m a little nervous about the surgery itself, because I’m always nervous about surgeries, because there’s always a risk associated anytime you go under. But that’s not a big Cosmic worry, that’s just common sense worry. I’ve had ample time to mentally prepare for this. I have plans in place. We have prepared for the worst case scenario of me not being able to transfer in and out of bed. I’m doing okay. This is going to be just fine.


I can’t wait to share all the gross details with you once I’ve had it done.

Surreal

Man, what even IS my life anymore.

I got a voice mail the day after that last post from my awesome nurse. “Hi, I read your blog, and I have some ideas about the AVAPS.”

Uhhhhh..hi there. I forget that people read this, sometimes. I have the best freaking care team ever, you guys. I got contacted from three different folks to ABSOLUTELY ASSURE ME that the machine would get paid for, the rules are more bendy for folks with ALS so please don’t stress about it. And then thanks to Nurse Awesome, I was contacted yesterday by Providence Respiratory to adjust my settings remotely to ramp that sucker down.

OMG SO MUCH BETTER GUYS.

It had previously been forcing air down my throat so hard my ears were popping. Seriously. I can handle it now. I might even get compliance on my own without my awesome peeps having to argue for leeway. It’s still not exactly comfortable, but it’s so much more manageable.

Thursday was noooooooot a good day, there were a million things going wrong, including hurting myself by trying to lean over in the chair to pull something out from under my wheels. I felt and heard something go POP, and owowowowowow. Not a crack, though, and breathing was still ok, so I just rode it out and after a few days’ soreness I’m alright. Then Thursday night someone said something a bit unkind and I kinda completely lost my shit for awhile. Occasionally there’s a trigger and I mourn the person I don’t get to become. Five years ago, I had my very own house, I had just lost a lot of weight and was fitting in all my cute clothes again, I was going to school to further my career, I had all my shit sorted out and my life was pretty fucking great, actually. Thursday night I let myself grieve for her, because that future is dead, and I let myself be angry at people who say really stupid shit.

Friday I had the distinct displeasure of taking the sodding van in for repair. It cost me $919. I’m extremely grateful to Intel for their short term disability benefit easing me out of the workforce, because fortunately I HAVE that money. For now. Although now the brake light’s coming on. So that’ll be fun.

Saturday I did nothing but sleep and fuck around on the internet.

Sunday I did something SUPER COOL but is not my story to tell, so just believe me when I say it was amazing.

This morning my cat woke me up because I could hear him chewing on plastic. When I located him, he had a huge long piece of cellophane coming out of his mouth, and was choking on it a little. I could not get him to come to me for ANYTHING, and when I stood up and tried to get to him, of course he backed away. I took another step towards him and fell right on my ass. It didn’t hurt, even though I’ve kinda got no muscle in my ass to cushion the fall anymore, but it knocked a bit of breath away.

And then since I was on the floor, my fucking cat decided to come check me out and I was able to get the plastic out of his mouth.

Motherfucker.

The fall didn’t hurt, but getting off the floor did. I wound up sitting on my foot rests and using that wheelchair lift feature to get myself up off the ground, but even with the grab bar on my bed, the chair to push off of, and my walker on standby, I wasn’t able to get over up on the bed. I had to lower myself back to the floor and let myself catch my breath before I tried again, and was very, very grateful to the Depends company for their fine product and my forethought to start wearing them to bed otherwise I’d have exacerbated my situation by having to catch my breath sitting in a puddle.

Welcome to the TMI Show.

Now, I have my awesome watch, so I was never stranded. I always had options. I’m just stubborn as fuck. I texted J but he was not immediately responding, so I tried the wheelchair lift again, and used it to ALSO steer myself right up against the bed this time, and was able to get in bed. And then after catching my breath, getting up to go to the bathroom to change my disposable shorts. I cried for like half a second, but realistically I know this is definitely going to happen again. Probably not the cat part, but there will definitely be another fall, and next time I very probably will not be able to get myself up. It’s twelve hours later and even though I’ve been in bed all day I’m still exhausted from the ordeal. So that sucks. If I hadn’t had such a huge meltdown Thursday, it would have happened today.

So that’s my life, this last week. Kinda a shit show, but there were definitely some good bits in there.

Also I wanna restate that my care team is amazing, especially my nurse. <3










Awww yeah, she’s a Sleep Machine!

So I got the CPAP machine yesterday! It’s pretty. It’s The AirSense 10 Autoset by ResMed. Or maybe the Elite. I don’t remember. It’s a lot smaller than I expected it to be. The sleep study put this expectation in my brain that it was going to be this massive machine next to my head, when it turned out to be the size of an alarm clock. With a hose.

That heats up!

My respiratory therapist (I have a respiratory therapist! I forget how many that makes in my Medical Posse) showed me how everything works, how to run the morning report, how to clean everything, how often to clean it, when to reorder supplies. And then I signed a contract that said yes I promise I will use this at least 21 days over the next 30 to show I’m SRS BZNS about CPAPpage. No, really, I had to do that. Or pay for the whole thing out of pocket ($1900!) after 30 days or return it to Providence. Weird. And then we fitted me for a mask, and I got one called “Wisp” because it was less strappy-constraint around my noggin. I’m at a relatively low pressure setting, I guess, which is good for beginners. Yay for me. The whole thing fits into a small case, like, I had school binders bigger than this thing, probably. I could put a vandalized Pee-Chee in here and feel nostalgic. But for now it’s just a softcover case, totally would fit in my backpack like it ain’t no thang when I travel.

The first night was challenging as I expected. I took an ambien to make sure I was able to sleep at all. It took a long time to stop feeling like I was suffocating and forcing myself to breathe out. The cats flipped out. I knew they would. When I laid down to sleep, Molly crawled up my torso like she was stalking a beast, pupils wide as saucers, jumping away when I touched her. Ianto was having NONE of that thank you very much, and slept in the hallway, and Parmesan, well. He’s 22 years old. He settled in next to my face as usual. And the awesome thing about the CPAP is that he was flopped over on my face and I could still breathe for a change! It was like…kitty scuba diving. With the only fishes being the ones on his breath. That I couldn’t smell. Because CPAP! It’s MAGIC!

I slept pretty hard, but I don’t know if that was CPAPpage or Ambien-ce. I took the mask off at like, 5:30, I think. I don’t remember. I remember being glad it has auto shutoff. My morning report said I used it for 7 hours and had an average of .4 ‘incidents’ an hour. Which I guess meant I stopped breathing? All of this will be sent to my doctor. By the built-in cell modem. Which I will be honest? Freaks me out a little. It’s like, Big Brother is Watching You Sleep. Fantastic if it helps, but it still feels like I’ve got a little snitch on my bedside. With a heated coil tube and a humidifier. Snitches…have switches?

I don’t even know where I was going with that.

ANYWAY. So I have this thing now, and it’s probably going to be part of my life from here out. Until it’s swapped out with a different breathing machine, I expect. It will eventually become routine to me. I can teach myself to get used to this.

Not sure about the cats, though.