Paul and Babe (or “Lots of Updates”)

Last week I spoke with someone at my insurance about that $3500 bill I received. It’s frustrating because I called my insurance company but they couldn’t help me—they had to transfer me to someone in PA, even though my insurance originates here in NM. Whatever. It’s all too confusing.

Prior to my calling them, I looked up my info online, and it said that I had met my out of pocket expenses for the year so surely this big ol’ bill was an error.

Good one.

Nope.  BUT… what I didn’t realize is that even though I hadn’t paid that bill yet, it was already included in my out of pocket expenses. So… it wasn’t that I had to pay my $6000 PLUS the additional charge of this bill. This bill is what caused me to meet my out of pocket portion. Okay, that’s fine. I felt okay about that because they’re going to get their $6000 one way or the other. I mean, that’s just a given.

And I was then told that I pay NOTHING else for the rest of the year! No more office visit copays, no procedure charges, not even any prescription copays. Well alrighty then. I had said to a couple people, “Dang, I should go out and get a really good disease because it’ll be free to treat for the rest of the year!” Then I remembered I already had one. Ha.

It dawned on me though that I’ve been looking at my medical budget all wrong, and this at least helps me frame it in the correct way: I need to have a minimum of $6000 (and probably closer to $8000 or more) for the year. I mean I guess I knew that but it didn’t really sink in on a practical level. So I will be revamping my finances once again, very soon.

My blood pressure had not improved at ALL, even with having been put on four medications. I messaged Dr. A about this although I saw the notation that she was out of the office until this coming Monday. Dr. C, who was checking her messages, said she would put in a prescription for yet ANOTHER medication “to get [me] to goal.” Five—I was now taking FIVE blood pressure medications in one day!

I messaged her back and said I would take the new med for TWO WEEKS, and if things didn’t improve, we were going to need to reevaluate this whole thing. I told her I never had BP issues on the lisinopril, and while I appreciated the potential severity of an allergic reaction, I was willing to take the risk if it would bring my blood pressure back under control. She said, “If you’re certain it wasn’t a reaction, I’ll put you back on it.” I said that of course there was no way for me to be certain—I mean, how could I know that? But I just didn’t think it was. I had to swear that I would call 911 or go to the ER if I had any facial swelling.  I didn’t say that with my luck (and my job), should it happen, you can just about be guaranteed I’ll be on some deserted highway in the middle of nowhere with no cell service. But hey… I’ve had a good life. I can’t complain.

Anyway… today is day three on lisinopril… and my blood pressure was 113/72 at the lab this morning. 113/72!!!!  I was practically holding my breath in anticipation! It had already dropped from the 160s/100s over the past couple days down to 130s/80s when I’d taken it at home, but to see it drop that low in such a short amount of time was a huge relief.

Not only was the high blood pressure itself worrisome, if the doctor thinks that the blood pressure was contributing to the decreased eGFR, shouldn’t we be doing something about that, like, NOW? I’ve been bitching about this since June 3rd!  I can’t tell you how many times I’ve said to her either in person or in a message, “I don’t think losartan is the medication for me. How long are we going to wait before we try something new?” And in my mind, “something new” didn’t mean continue to throw yet an additional drug my way; I meant something actually NEW.  (Truth be told, had they refused to change it back to lisinopril, I was just going to do it myself. I have a bottle of it here, and it even has a few refills on it. But luckily I didn’t have to go that route. I also decided tonight to cut one of the other BP pills in half—the one that is causing the swelling in my legs. I’ll still be monitoring my BP, and if needed, I’ll go back to the original dose.  And I’ll tell the doc I’ve done this; I’m not going to keep it from her. I’m sure they just LOVE patients like me, but dammit—this has just been going on too long. Someone’s gotta make a move.)

Tomorrow I start on 7.5 mg of prednisone, down from 10. But I’m no longer holding out any hope that my sense of taste will be restored, nor will my moonface resolve. I mean I think both will at some point but I’m not counting on this lower dose to make that happen. Hasn’t happened yet, and I’m coming up on three months of this crap. Maybe I’m just going to have to wait until I’m off of it completely.  But man life is boring when you can’t taste peanut butter.

I finished a 10-day course of Nystatin rinse for thrush but that didn’t do any good. There is an oral med one can take but it looks like people with kidney disease shouldn’t take it. I’ll have to ask Dr. A if she can recommend anything else.  I had thrush once before, maybe 10 or more years ago, and as I thought about it, I remembered the Nystatin didn’t work for me then either, and I had to take the oral meds. But I didn’t have crap kidneys then.

I started working back in clinic last week, after five months of not being there. I work in nine facilities but fortunately, they are not all reopening at one time. I don’t think I could have handled just jumping right back in at full speed. Right now three of my clinics are open, and I’m only seeing half the number of patients (one per hour instead of one every half hour). This allows us to keep patient traffic down in the clinic as well as give us the time we need between patients to disinfect everything.

I don’t see how we’ll be able to go back to the old schedule of a patient every 30 minutes; first of all, it’s never been enough time but we’ve just suffered through it. Secondly, it’s not like we’re going to go back to NOT disinfecting between patients. I don’t want to imply that we NEVER cleaned and disinfected before COVID hit; it’s just all very different now, and certainly much more intense. And we don’t have any assistants who do this for us, like an MA or a nurse. We’re on our own with all this stuff.

Honestly, I’m thrilled to have the extra time and the slower pace. It takes twice as long now to do everything. It’s kinda crazy. I’ve been an audiologist for over 25 years but it feels like it’s my first week on the job. I have to stop and think about everything I do. I know it will get easier and just feel more “normal,” but for now, nothing seems routine.

My first day back in clinic, I had to fill out a form to request the PPE I needed (gloves, masks, disinfectant). Someone brought the stuff over that day—at 2:00 PM. That would have been great except my first patient was at 9:00 AM. Luckily, I had brought a small stash of stuff I thought I might need (although I didn’t share that info with the powers that be. That would ensure that I’d never get any PPE).

At the next clinic, they had everything available, except they only had “one size fits Paul Bunyan” gloves so my hands were just swimming in them. (Note to clinic administrators: gloves are supposed to fit like second skin or else they really don’t do any good.) Trying to put a battery in a hearing aid while wearing gloves is a hoot—and when they’re huge, it’s impossible to not close the tips of them inside the battery door. EVERYTHING, even stupid simple stuff, just takes twice as long.

Most of my patients are on the smaller side—their masks routinely slide down below their nose. And duh, stupid me… I can’t wear a face shield while doing a hearing test because I have to wear a microphone—which I didn’t discover until I went to put the headset on. That was pretty funny. OH… and at the present moment, we can’t use our soundbooths because they are not connected to the HVAC systems in the clinics to route out the “bad air” that could be trapped inside the booths. And some of our clinics are saying they’re not even going to address the issue “because the booths are old.” Okay then.

Needless to say, the last two weeks have been quite a learning experience. (In a word: shitshow.)

And even with the reduced patient schedule, I’m absolutely beat by the time I get home. I think a variety of factors are contributing to that:

  1. I’m lazy.
  2. I’ve sat on my ass for the last five months doing a whole lot of nothing.
  3. I’m still anemic and likely always will be. The low cut off for normal hemoglobin is 12; I’m never going to get much above 10 so I’m not ever going to find myself in the normal range.
  4. I think maybe all this kidney crap has taken more out of me than what I was willing to admit to, and
  5. Did I mention I’m lazy?

By the time I get home, I’m usually ready for a nap but I try not to take one so it doesn’t affect my sleep at night. But I’m really exhausted.  I’m a “list” person (or a “many lists” person), and I don’t seem to accomplish much on my to-do lists once I get home. Hopefully I will feel a bit more energetic as I get back in to the swing of things.

But I have discovered my love for scrubs!! Wow! Why didn’t I do this years ago? I mean it’s like going to work in your PJs! No need to worry about what to wear, everything matches, they’re cheap, they have pockets galore, and I get to wear comfortable shoes. It’s awesome! I have a feeling I’ll just continue on with that little tradition long after COVID bids us adieu and we have some other damn thing to deal with.  I take clothes with me to change into before I leave since my “commutes” home from these rural clinics are anywhere from an hour to four hours. It doesn’t make any sense to sit in potentially buggy scrubs for that long. But yeah… scrubs rock!

I was back at the hematology lab today.  My hemoglobin was 9.8 so I did get a shot of Aranesp but that was the first one I’ve needed since July 10, so I do seem to be on about a six-week cycle.  And I found out today that they’ve actually reduced the dose from 75 mg to 50 mg, so even better! (‘course it figures that now that I don’t have to pay $111 each time, I don’t need them as frequently! A mere coincidence, I’m sure. Kidding—no conspiracy theories here.)

Up next: Monday I have an appointment with the endocrinologist.  As a recap, I was supposed to have seen her in June but she had to cancel due to a family emergency. My thyroid ultrasound was abnormal this go-round. Well, that’s not exactly accurate; it’s been abnormal for some time but it’s been stable. Now something has changed. Thyroid cancer is weird because even though they remove the thyroid, the thyroid tissue can reappear pretty much anywhere in your body. Every so often I’ve had to get gamma ray scans that go from the top of my head down to my toes, just searching for random bits of thyroid tissue. I haven’t had one in a while but I wouldn’t be surprised if I’ll need another soon due to whatever changed on the ultrasound. But maybe not, who knows. One damn thing at a time.

It’s a thrill-a-minute life, let me tell you.  Next Friday, more lab work and the orange juice container of pee (24-hour urine test again) for Dr. A in Pittsburgh. I have an appointment with her September 4th. That day I also go back to the hematology lab for my “routine” test AND have a different batch of blood work and urinalysis done for my local nephrologist, with whom I have an appointment on September 11th.  I’m not 100% sure why I even need to see her, although I guess it’s good to have a local contact for… some reason.

Hemoglobin: 9.8

You too can visit Paul and Babe at the Trees of Mystery in beautiful Humboldt County!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s