Month: August 2021

More recovery

I continue to feel a little better. I’m on light duty at least through September 10, longer if I still don’t have my energy back. The complication is that on September 30 I go see the urologist for more testing and will likely start another short course of BCG. What this means is that I will likely be ready to come off light duty about the time that I will need to go back on light duty for round two. Awkward.

I felt enough better today that I made an attempt at chipping away on schoolwork. I won’t say that I accomplished much but it’s more than I’ve been able to do for the last few weeks so I’m still counting it as a win.

The basement also continues to make progress. The walls are done and (almost) all painted, as I may have mentioned previously, and the floor may be done as early as Friday which would mean that the only major project left is unpacking. Having the basement finished is going to be a huge weight off my mind and (hopefully) it won’t flood again in December.

Things could be worse.

Recovery

It has been almost two weeks since my last dose of BCG. The week of the 16th (the week immediately following my last treatment) was still on the downhill slope but this week I’m starting to feel a little better.

Not well, but better. I’m going to stick on light duty for at least another week but at least I was able to do dishes and clean up around the house yesterday without feeling completely destroyed, just kind of destroyed.

This bodes well for the next few weeks, at least until I have to go back for my next three doses.

I’d like to see more of this

I tried to find a copy of this clip that isn’t embedded in someone’s tweet but I couldn’t so here it is. This is Illinois Governor Pritzker dealing with a right-wing nutbag reporter at a press briefing about the state’s Covid response.

Semi-accurate transcript:

Right-Wing Nutbag Reporter (RWNBR): [recording starts mid-sentence] …protests out here this morning and parents were crying, as governor you should try and calm people’s nerves, maybe, or can you? Because there are low risk groups too…

Unidentified Woman (UW) (off screen): Amy, as a supposed reporter, you should probably stop the misinformation. We are done here. Thank you.

Gov. Pritzker: Thank you. [starts to walk away from podium]

UW (still off screen): You know how you stop schools from being closed? You stop complaining about mask wearing.

[inaudible cross-talk, RWNBR appears to say something like “…read some of those studies”]

Gov. Pritzker: [walks back to podium] I’m going to take the podium again and just respond to that. Let me just say this; you are spreading misinformation. I wish you would stop spreading misinformation. You come in here with a political agenda and you spread misinformation and I just think you should stop. We now need to protect our children, we need to protect the people in our communities, parents, grandparents, teachers; you are working against that. And it is extremely upsetting for all of us who are trying to keep the rest of the state safe. [Walks away from podium]

Light duty

For years, probably since the beginning of my nursing career, I had envisioned a time when, for whatever reason, I would no longer be doing bedside nursing. My dream “retirement job” has always been some form of telephone triage and today I have achieved that goal. The only down side is that it is temporary while I work the BCG fatigue out of my system.

My light duty is to cover the Covid symptom line for employee health. Employees that think they may have been exposed or that are having worrying symptoms call the number and I read down this whole list of questions to determine if they should get tested, if they need to quarantine and for how long, when they can go back to work, etc.

The charting is kind of a pain, but I am sitting at home in a dark, quiet room with my laptop and an algorithm/decision support tool and I don’t have to see another person or even change out of my pajamas. This is as close to a dream job as I am ever likely to get.

Edited to add; I was feeling pretty good today, like almost back to normal. Then I took the trash out (not something I usually struggle with) and am pretty seriously beat down again. When I stopped to think, I realized that probably why I felt good is that I hadn’t really done anything all day. 8 hours of “work” talking to people on the phone while I was lying in bed, leftovers for dinner so I didn’t have to cook anything, then sat around for a few hours generally being a slug.

The light duty is probably a really good idea.

Follow up

Taking the CES-A exam started out a little rough. The deal is that they email you a personalized link and password to log in to the test, then you just log in from a computer and away you go. It is a proctored exam but fortunately the proctor was someone I had worked closely with for years at a previous job so he was tolerant of the shenanigans that I went through before the test.

The difficulty started when I couldn’t find the email with the link and password to take the test. I dug through all my email accounts, all my trash folders and all my spam folders with no luck. I knew I had received the email because I remembered looking at it and specifically thinking that I needed to save it and not throw it away but I could not find it anywhere. Looked in all my personal accounts and my work account and nothing. Fortunately there is a help line number to call, which I did and left a message. To the testing organization’s credit, they called back pretty quickly and the problem was identified easily. Somehow I had managed to give them the email address that I use exclusively for paying utility bills; gas, electric, internet, all that. The only explanation that I have is that my browser must have auto-filled that address when I was filling out the testing application and I just didn’t notice. I hadn’t checked that email account because it never occurred to me that I would have used it but once I checked it, there was the link and the password. Phew.

As happens most times when I take multiple choice tests, I managed to zip through the questions pretty quickly and, also like most times when I take multiple choice tests, I was absolutely sure that I was getting every single one wrong.

At the end, I did manage to pass with 88% which I feel pretty good about having gone in cold with absolutely no preparation. I could have done better if I had studied since there were a good handful of questions about things that we had consciously decided to not do when we were putting together the protocols and procedures for our ECMO program. Getting into the details on that would take a lot of arm waving and a lot of pictures with circles and arrows and a paragraph on the back of each one explaining what each one was, which I’m happy to do but I can’t imagine it would be particularly interesting to anyone who isn’t a total nerd about mechanical circulatory support. I will say, though, that the questions did reinforce, in my mind, that we had made the correct decision when we chose to not monitor the parameters that they were asking about on the test. It’s kind of neat but it doesn’t really contribute anything to the safety or efficacy of the treatment and it is very likely to just cause angst and confusion on a day-to-day or hour-to-hour basis so we really felt it was better to skip it in our program.

So the final outcome is that I get a $1 raise as a certification bonus and I can now add CES-A after my name and, as anyone who works in healthcare knows, the only really important thing is how many letters you have after your name.

(Not really though. In fact I find it uniquely annoying when people add every degree and credential they have after their names. it makes them look like they’re trying to compensate for something. I’ll just stick with plain and simple RN, thanks.)

Treatment #6

Fortunately this week seems to be going much better than last week, which is not a high bar to get over. I’m back to just feeling stupidly tired all the time but no nausea, chills or bladder spasms, so improvement?

This was the last of the first round of BCG treatments and I am very hopeful that, once I don’t get anther dose next Monday, I will start to recover a little bit of my energy. Of course now that I am (hopefully) a week away from starting to feel better I’ve finally managed to get some sort of light duty sorted out so I’m going to start working again tomorrow doing something for employee health, exactly what isn’t really clear. Never fear though, I do still intend to take full advantage of every minute of light duty I can get, even if I start feeling better immediately.

Fun story; I’ve had a great deal occupying my mind recently and had completely forgotten that, at some point in the semi-remote past, I signed up to take the CES-A exam. No, not Certified Excel Specialist in Accounting, Certified ECMO Specialist – Adult. (aside – what kind of special hell do people who create an initialism that contains an abbreviation go to?) This is a 100 question test developed by the American Society of ExtraCorporeal Technology and the International Board of Blood Management which is designed to demonstrate the subject’s knowledge and expertise in various aspects of extracorporeal life support. The test is at 7 am tomorrow, is supposedly very challenging, can’t be rescheduled, and I haven’t studied for it at all. I did, however, drop $400 for the privilege of taking this test so I am absolutely going to show up and take it anyway, I just don’t have very high hopes about passing.

Wish me luck.

Clever title

Something that I never really understood, in all my years of working in health care, is the patients with serious illnesses that couldn’t stop talking about how lucky they were. Couldn’t wrap my head around it. How can people consider themselves “lucky” when they also have advanced heart failure, or some kind of progressive neurological disease? Or cancer. Someone who was really lucky wouldn’t be sick in the first place, right?

What I think I am beginning to understand is that I’ve been looking at it from the wrong perspective. This is not “lucky” in the sense of “I just won the lottery” this is “lucky” in the sense of “the building I was in exploded and collapsed around me but I didn’t die”.

So with that out of the way, I am exceptionally lucky. This whole thing could be so much worse.

I have a support system of friends and family without which my current situation would have gone from difficult and unpleasant to catastrophic. The material and mental support I have received has made it possible to navigate this whole thing with at least some sense, somewhere in the back of my mind, that things were going to be okay eventually. The loudest part of my brain is still saying that things are terrible now and the whole thing is so unmanageable that things are going to be terrible forever, but the actually smart part of my brain knows that even though I have fallen out of an airplane, I have a parachute. Lucky.

On the other end of the spectrum is the American health care system and everything surrounding it.

I have been missing a lot of work. Like I think I’ve probably only worked maybe 5 or 6 days in the last several weeks. When this whole thing started I tried to get a medical leave from work. The Family and Medical Leave Act of 1993 (FMLA) requires employers to provide employees with job-protected and unpaid leave for qualified medical and family reasons. It also set up a federal system for managing leave granted under the law but said that employers could set up their own system as long as it was substantially similar to the federal program and provided substantially similar benefits. I knew going in that, one way or another, I should be able to get some kind of approved leave.

I feel like I should say, at this point, that I am not an expert at navigating the consumer side of health care. Far from it. There are almost certainly easier and better ways to attempt what I have been attempting but they certainly aren’t obvious.

Anyway, so I contact my primary care doctor, human resources at work and the third-party company that manages medical leave and related things for my employer. Got paperwork rolling and things were looking okay. Then I find out that I don’t qualify for medical leave through my employer because I haven’t worked there long enough. I can’t remember what the requirement was exactly but I wasn’t even close. Fine, if I can’t get this through my employer I’ll just dive into the state and federal systems. Except I don’t qualify for those either because my employer has their own system set up and I have to go through that.

So I gave up on the idea of medical leave and some time passed. As it became more and more apparent that I was not going to be working full time through this I started looking in to the short term disability insurance that I pay for as part of my health benefits at work. This seems, on the face of it, to be a perfect fit for short term disability. I am, to a greater or lesser extent, kind of disabled right now but, because I am very lucky (see above), it should be pretty short term. Great, lets get this going.

Step One: You must be on approved medical leave to access your short term disability benefits.

Well shit.

So there it is, the Greatest Health Care System In the World™ – pay a lot, get a little.

Edited to add; This is how dumb I am – The whole time I was dealing with this whole question of leave and benefits and insurance I was thinking that what I really needed was a social worker. Many astute readers will immediately pick up on the fact that I know a social worker, and a really good social worker at that.

I still think it is extremely unlikely that I will be able to get any kind of coverage for the time I missed but at least I have a couple new leads to follow.

Follow up

Yesterday was really rough. The bath felt amazing while I was actually in the water but as soon as I got out I felt worse than before. Chills (no fever though), headache, weakness, dizziness, nausea, and what I think could only be called a severe generalized malaise, in addition to the ongoing bladder spasms. After a few hours of wishing I would just hurry up and die already, I gave up and took every pill I could think of that could possibly even maybe help (for the record it was 1000 mg of Tylenol, 20 mg of Pepcid, 8 mg of Zofran, 200 mg of Pyridium, 120 mg of simethicone, 2 Tums, 3 mg of melatonin and 100 mg of sumatriptan). After that I finally felt better enough that I could eat something and go to sleep.

As an aside, I don’t recommend the “shotgun” approach to treating symptoms as outlined above. Not only does it lack any kind of style or elegance, if you throw the kitchen sink at your patient and they get better there’s no real way to figure out which of the 9000 things you did actually worked. That said, desperate times and all that.

Anyway, today is a little better so far. The Pyridium seems(?) to be helping(?) the bladder spasms and I’m back to baseline with maybe feeling a little wrung out from feeling so terrible yesterday.

hopefully this was a fluke and isn’t going to be typical of how I’m going to react to future BCG doses but, again, the only way to find out is to just keep going.