The main thought going through my head as I was wheeled out on a stretcher was, “I can’t die yet, J’s name is not on the house.”
It began with the UTI. It was a pretty nasty one, and I had waited a couple weeks to hit up my urologist for medication, because she had driven it into my head that antibiotics are not something I should be constantly asking for. In order to prevent my particular colony of bacteriai becoming resistant, we needed to use antibiotics sparingly. When I finally ask for help, there was a huge mix-up with the actual medication. Rite aid didn’t have it, and they didn’t bother telling me that it went several days before I found out, and they dropped the ball ordering the medication. My infusion nurse wound up calling them to figure out what the fuck was going on, and they promised be medication would be ordered the next day and a rush would be put on filling it. They lied. They lost the medication order again. In the meantime, my doctor prescribed a different medication. I never did get that first script filled.
The practical upshot of this is that I had a UTI for almost a month before I got medication in me to get rid of it.
It was late Friday night, early Saturday morning about 2:00 A.m. Jay and I had just said good night and I was preparing for bed. I became aware that I was breathing kind of shallow. My breathing got worse to where I was struggling for breath and I figured I was having a panic attack; I asked my mom for Ativan and waited for it to kick in. It didn’t kick in. I asked her to sit with me and talk with me and distract me, but my breathing didn’t get any better. In fact it got worse. I was practically panting when I asked her to get J. He came in and assessed the situation and asked me if I wanted to go to the ER. While sitting there panicking, my brain had thought about going to the ER but it just brought on more panic. But at this point I can see that there was something else going on besides panic and indicated that he should call 911.
Breathe in. Breathe out. Breathe in. Breathe out. Breathe in breathe out.
Every breath was shallow and quick, I felt like I was getting just enough oxygen to maintain consciousness and not much more. I couldn’t think. Nothing beyond, I need to get a breath in me. The paramedic showed up and took their sweet time getting oxygen on me, despite me asking for it the moment they came through the door. I think they believed I was having a panic attack. The EMT kept asking me questions, but I couldn’t answer anything because I couldn’t talk and I tried to indicate that I couldn’t talk and I tried to indicate again. Please, oxygen. They checked my 02 level and I was hovering around 84%. They finally acquiesced that hey, maybe something was going on and put oxygen on me.
It really didn’t help that much.
I don’t remember a lot about the ride in the back of the ambulance, only that I had to keep focusing on each new breath, I couldn’t lose consciousness, because then I would go unresponsive, and they wouldn’t try to revive me because I had told them not to with my POLST form. I couldn’t die because J’s name is not on that house. Once that’s settled I can die. But not before.
Breathe in. Breathe out. Breathe in. Breathe out. Remain conscious. Breathe in breathe out.
After the very bumpy ride, we arrived in the emergency room and I’m not entirely sure what medications they put in me, but whatever it was, combined with the BiPAP machine they put over my face, I began to breathe a little easier. Not great, but I felt like I wasn’t going to pass out at any given moment anymore. They cut my shirt off of me with my permission and asked even more questions. I was finally able to answer them, and supply information on my own. My O2 SATs or normally around 91, 92, but I have ALS so that’s normal for me. I have a UTI that is currently being treated, I am on day 3 of a seven day course. I experienced no symptoms at all up to this. It was a sudden shortness of breath with no lung problems before, no sickness, no pneumonia. They did a chest x-ray to verify that my lungs were clear. The rhythm of the BiPAP kept me going. Jay was there suddenly while the nurses worked around me, I took off my watch and handed it to him. I don’t think I’d ever seen him so worried or so scared. I think he calmed down once he saw that I was breathing better.
They spurned the IV the EMT had started, and stuck another one in my arm. Again I don’t know what drugs they gave me. A lot of this was happening over my head, medicine being done at me rather than with me. They said something about ” we’ll get you admitted first and then..”
Admitted. My first hospital stay. I guess if I’m going to do it, I’m going to do it properly. J had brought me my phone, to keep in contact with him as things turned up. Eventually though, they kicked him out and he went home to sleep.
I was in the hospital for a total of 4 days. During this time, we learned that this episode was probably brought on by the UTI. I didn’t quite understand the mechanism, but I knew from experience that every single time I get a UTI it leaves me weaker. Permanently. So it made sense to my brain that it was due to the UTI I was having issues. I cursed myself for not taking my problem to the doctor earlier. J cursed the doctor instead, for drilling it into my head that antibiotics weren’t something to be used right away.
I learned a few things during those 4 days. One, hospital food really is that bad. I didn’t really feel like eating in the first place while I was there, but the hospital food didn’t give me much of a reason to look forward to it either. It was on day three that I discovered I could ask for Pepsi, which was a game changer. The caffeine headache I’d had for the first couple of days finally was addressed. Two, the fact that the UTI was to blame. Three, I would be in the hospital four days to get the IV antibiotics through me. Four, it’s really really annoying to try to sleep in a hospital. Every 5 minutes it seems they wanted to do something to shove a pillow under my butt so I didn’t get bed sores, to give me another blanket that I didn’t want, to give me a wipe down bath.
They almost used chlorhexidine.
I am so grateful that I caught it. Their usual wipes to clean patients are chlorhexidine. I would have been itching all over my entire body. As it was, I was allergic to something they put under the dressing for the IV in my arm. It itched for days afterwards.
Seriously with the jostling though. They wanted to turn me this way in that, and flatten the bed every time they did so, which was a no-go for me. I found that I was able to breathe somewhat with the BiPAP going if I was laying flat. So that was okay but I couldn’t do very long.
Number five. It was literally impossible for me to poop while sitting in a bed. The hospital didn’t have a hoyer lift. They had rooms that had lifts built into the ceiling, and for some brilliant reason they hadn’t put me in one of those. So I could not be transferred to a commode. Instead, they shoved a painful rigid bowl under my ass and asked me to poop in that. I was unable to comply. I wound up having a minor accident at one point, but it didn’t get it all out and I would have to wait until I got home. I don’t have any idea what would have happened if I had gone longer in the hospital.
Number six. Having someone wait on you hand and foot is actually kind of nice, so long as the person is being compensated for their time. With my hands being what they are, I wasn’t able to take the BiPAP mask off on my own. This put me at a high risk in case something happened, I wouldn’t be able to as they put it, self-rescue. The upshot of this is that there was a nurse or someone in my room at all times. I felt bad that they had to waste their time watching me sleep, but it was kind of cool to have someone at my beck and call if I wanted anything at all. Mostly what I asked for was bed adjustments. Can I sit up a little more, can I lay back a little more? My hands couldn’t work the bed remote. Hopefully I didn’t annoy them too much. Since they were getting paid to be there though, I felt a lot better about asking them for these things.
The first day when J came to visit that afternoon, I pretty much slept through the entire visit. Didn’t want to, but I was so tired from everything. I pretty much only woke up otherwise when they asked me to, for a blood draw or to take my meds; we actually had to bring one of my meds in, they didn’t have it in the pharmacy. And it wasn’t even the ALS drug. I was on a infusion routine at the time, which meant that I was accessed and they took full use of the port, but it also meant that I needed to have doses of radicava while I was in hospital. Jay brought in all of the medicines and everything and took care of the infusions. We skipped the first day obviously. When it was time to go we actually accidentally left the meds there and had to go back up for them.
I had a lot of time to think. Mostly what I thought about was that I really really needed to get my will together. I need to contact the bank and find out what needs to happen in order to get his name on the loan. I need to make sure that all of my things go to the right people. I have my will in a document on Google drive, but I don’t have anything official. I don’t think my brother or J know how to get to it either. Surprisingly, I didn’t actually think about my own mortality that much. Just the mundane bits of business surrounding my death, nothing specifically about worrying about the afterlife or lack thereof or anything metaphysical or deep like that just.. I need to put my name on a bunch of pieces of paper. I should finally write goodbye letters. I don’t have as much time as I thought I did. This is only going to shorten things.
We had me on the BiPAP at night, but during the day they swapped me to a nose cannula. On the very last day, they tried pulling me off of the oxygen entirely but my O2 levels dipped below 90 when they did. The practical upshot of this is that I was sent home with oxygen. My world suddenly got much much smaller. Going anywhere became exponentially harder. I thought about the medical research appointments, how was I going to get a spinal tap if I’m on oxygen, carting around a wheelie tank? Again. Practical aspects to everything. Not so much of what it signified except everything was more of a pain in the ass. Things in my house where there’s already no room. now, I have to put a sign in my windows stating as such so that if a fire ever happens they know to avoid the tanks because they might go exploding. Which sucks because they live in my room where I sleep and where I would be if I needed rescuing. I’m sure they would come in anyway just with caution. But because I had these oxygen tanks, I can’t burn scented candles anymore. Poop.
The oxygen concentrator is hella loud.
I got used to it, luckily it’s rhythmic enough. It emits this high-pitched scream when it’s first turned on though that makes all of the cats run to the other end of the house. It’s one more hose attaching me to something else to go with my feeding tube and the super pubic catheter and the IV for infusion. One more ‘hey you’re sick’ reminder.
My neurologist was exasperated that they sent me home with oxygen. Apparently people with ALS don’t do well on oxygen, it makes their lungs get lazy. I had to make an appointment with my pulmonologist to follow up with all of that. Unfortunately right now I’m between pulmonologists, mine retired. I was referred to one specific one because he works with the ALS clinic, but the schedulers refused to schedule me with him because they didn’t understand why I needed to see him specifically. I had seen another provider in their office why wasn’t I going with him. I tried explaining about the clinic but they were unmoved since the previous pulmonologist also worked with clinic sometimes. This conversation took 4 days. I called to make the initial appointments, they said they would find something on his schedule and call me back, they called me back to challenge me. Fine I said, I will take an appointment with the previous doctor I don’t care. They said they would find a slot on his calendar and call me back. They didn’t. I wound up calling them again – with at least a 10-minute whole time every single time I need to contact them. They offered no apology for failing to get back to me, only said they would try to find something on his schedule right now. I was put on hold for 5 minutes while they found something. He didn’t have any openings until October they said. They could try to find something a little earlier with another provider if I wished, and I said I did prefer thank you. They found something earlier.. with the provider I had originally asked for. It was also not until October but it was slightly earlier. I asked to be put on the wait list in case someone canceled.
They did actually contact me to tell me they had an appointment the next Friday. I requested a virtual appointment and accepted. Friday when I had the appointment, I sat by myself online for 20 minutes before I call them with another 10 minute hold time to ask what was going on. They had failed to flag the appointment as virtual, so the pulmonologist had been sitting in his office waiting for me. I asked if there was something I could have done to make sure that the appointment was virtual – I had an email invite to the meeting room so the system knew I was meeting virtually, and they said no it’s not your mistake at all it just didn’t get flagged properly. Luckily the pulmonologist didn’t have another appointment that morning and was able to meet with me.
Can I just say that I’m really not impressed with the Portland clinic?
The pulmonologist however, was lovely. I really liked him. He explained a lot about ALS and how it works, and showed me my CT scan. My diaphragm is sitting really high he said which squishes my lungs plus I’m heavy so that doesn’t help. Which honestly kind of pissed me off because I was told to gain weight. I was 160 when I was diagnosed, they said to put on some pounds so I did. I guess I overdid it. Anyway, he said I don’t have to be on the oxygen during the day if I don’t feel like I need it. Just make sure that my O2 levels stay around 91 92. Use it at night though, in conjunction with the machine I use for night time breathing.
The other thing that happened post hospital is that I had a ventilator delivered. It can be used with a face mask, but it can also be used with a tracheotomy. It is the last machine I will be issued for breathing. Once I graduate this machine, the only option is to get a vent surgically installed.
I had been asked several times if I wanted a mechanical ventilator. The first time was in the ER, and I panicked because I thought that was my only option if I wanted to breathe again. And I don’t want a ventilator at all. It’s prolonging the inevitable, and is a huge pain in the ass – you have to get a certified nurse to take care of you afterwards, regular caretakers can’t touch it. Nurses are very very expensive. I had also read a blog post from a fellow ALS haver that detailed getting her trach changed out and it sounded like it was a nightmare. She basically just has to sit there not breathing while they pull the tube out of her throat and put the new one back in, there’s always blood. It takes up to 2 minutes to do everything, and the idea of just not being able to breathe for two whole minutes freaks me the fuck out. I don’t want that. But in that moment, if she had said that was the only way I was going to survive this particular episode, I would have accepted. Just to get all of the paperwork out of the way, long enough to settle all of those things. And then turn me off. The doctor also asked if I wanted to be on a ventilator when I met with him upstairs after I had been admitted. Again with the panic thinking that was what they were going to say was mandatory if I wanted to survive this. Turns out that wasn’t what he was saying at all, it’s just that if I am decided to take a ventilator eventually anyway, they can skip all of the troubleshooting and just go to that. Why go through all the trouble finding leaky hoses if you’re just going to replace the entire engine? I understood the logic. But no vent for me today thank you.
The ventilator machine I was issued is standing on a little tray table in my room, because we’re not quite sure where the hell we’re going to put it. I don’t have a bedside table since that’s where my wheelchair parks. If I’ve been freaking out about any of this, it’s the issuing of this machine. What it signifies. The final frontier as it were. The lack of time it represents.
I’m okay with dying, but I’m sure as fuck not in any hurry to do so.
I come away from this experience with two key takeaways. The first is that I am extraordinarily lucky to have had 8 years and I really need to get off my ass and get my affairs in order because I have less time than I would like to think I do. The second is that UTIs are seriously nothing to fuck around with. My stepfather’s mother died of one. It’s entirely possible that I almost did. I have orders to talk to my urologist about potentially getting on a small dose of antibiotics as a matter of course to prevent UTIs from happening. It’s one more pill to take, but if it spares me another uti, it’s all worth it.
So that was my first adventure! My first hospital stay! My first death scare!
And this is what I mean when someone asks what I’ve been up to and I reply “nothing much, but that’s a good thing.” I’m just not built for this kind of excitement. You can have it.
NOW if you’ll excuse me, I’ve got some paperwork to get in order.