#if you also have problems with Abuterol I highly recommend asking about Levabuterol. It's not covered by our insurance but the QOL

[on-my-way-to-the-woods]

F's week of medical adventures:

TL;DR: F got prescribed a medication that we had concerns about because of her reactions to a similar medication, had concerning symptoms directly after taking that med for the first time, doctor doesn't think it was medication related, doctor changes medication anyway, two days later doctor orders a CT scan (probably to cover their ass if there was a problem). Also F's GP is moving to California and we're heartbroken 😭

F's GP's office sent a referral to a pulmonologist (which isn't strictly necessary because we have a PPO, but it was super helpful because it meant they were checking the insurance stuff because our company still hasn't fixed our website access). She's still struggling despite being on the upper end of what the GP can provide so the pulmonologist approved her for an urgent appointment. We had that appointment this week.

Monday At the appointment they did 0 testing, said that the maintenance medication that F was on was rather lightweight (disagree, but I assume they meant that it didn't contain a Long-Acting Beta-Antagonist, F assumes they didn't read the medication correctly), said that the current rescue inhaler F is on is a "red flag" for not responding well to LABAs but that most people are completely fine so they're gonna go ahead and prescribe one anyway, did not ask further about why F is on that med, listened to her lungs a little and then sent her off with a follow up appointment in two months. We had specifically asked F's GP to avoid LABAs because of other health concerns and her reaction to Abuterol (a Short-Acting Beta-Antagonist).

I clearly need to read about medical communication because we keep telling nurses/etc. that she has bad reactions to Abuterol and they keep going "oh! Does it make you jittery?" 🤦 No. Her heart rate goes way up, she feels like shit, and she has to lie down for 2 hours so she doesn't fall over.

Tuesday The new prescription comes in, F takes it that evening (her regular time and we'd picked it up <1hr beforehand). Surprise, surprise, she feels like shit. It's a different flavor of feels like shit though. Pros: her heart rate didn't shoot up like it does for Abuterol and she is more capable of standing. Cons: nausea, dizziness, palpitations, high blood pressure, feeling jittery, and a sense that something is wrong. Just what you want out of a medication you have to take twice a day, right? /s. So she finishes up her bedtime routine and goes to bed. Then, in the middle of the night, F is woken up by very bad chest pain.

Wednesday We call the office in the morning to ask if she should take the morning dose or discontinue the medication. The answer we got was roughly 'well, those aren't listed side effects so I don't think it's related, but I'll ask the doctor.' The answer relayed to us was also that the doctor doesn't think it is related, but if we want we can change to a different medication without a LABA. (What we'd like is medical advice, thank you 🙄). We eventually pick trying a new medication because, if the chest pain is unrelated to the LABA, then it's probably pretty urgent that we figure that out now and go seek care for the chest pain problem. The nurse says they'll get the prescription sent in and we will have a nebulizer delivered to our doorstep. We're a little surprised, but whatever.

Thursday The medical equipment company calls F a few times to sort out insurance & billing stuff (unfortunately mostly during times F is having asthma issues). Then after that's all set, the equipment company's respiratory therapist calls to schedule a time to come set up the machine and show F how to use it. That's somewhat different than just delivering it to our doorstep....

Anyway, since we're supposed to leave early on Saturday for a road trip, we schedule the set-up for late Friday morning and then rushed around trying to clean the house.

After that, F gets a call directly from the doctor effectively saying 'sooo I have been thinking and I am going to order an urgent CT scan (if you want, but I'm ordering it anyway) to make sure nothing is drastically wrong but I'm sure it's (most likely) fine, but maybe you might want to do it just in case. Anyway, I won't be able to look at it until Monday. Also, you'll be fine once you get on [medication you potentially have bad reactions to]' We're presuming it's a cover-their-ass call, and at this point F feels ridiculous and like she's wasting everyone's time and overblowing things, but we talk through it together and she's convinced to go get the imaging done because it'll be good to have on hand and we're very likely to hit the deductible/out-of-pocket limit this year anyway. So, yes, imaging to check for dangerous and urgent condition, but it's fine if the images aren't reviewed until the next week 🙄

We schedule that for Friday afternoon and I spend the rest of the evening alternating calls between the insurance company and the hospital to make sure everything is in order. And then I stay up late cleaning.

Friday (F's birthday - I'd taken the day off work to surprise F, I guess that was a good decision 😅 ) I finish up CT phone calls and confirm that the CT pre-auth went through then call the medical equipment place to clarify some things since it's going very differently than we had thought

Her appointment with the equipment company's respiratory therapist went well, they seemed more concerned about F's symptoms than the doctor did - but that's our usual luck, anyone who is not an MD is worried about F. The machine is >$350, but the inhalers she's been using are mostly >$200, so this should be cheaper overall as long as she keeps using it and isn't swapped directly back to the other med. (We certainly could have bought one cheaper by ourselves, but it's better for us to go through insurance in this case).

Had lunch then ran off to the CT scan which itself was pretty quick, but it's a decently long drive so it took up the rest of the day. The CT technician was also very much 'no, don't worry, you definitely should have come in for this based on your symptoms' which helped reassure F somewhat. Then we both go home and crash (instead of packing)

Saturday We pack and leave and are very tired etc. etc. but at least there are no medical phone calls involved

Sunday Telehealth appointment with F's GP (who is amazing) and he shares that he's taking a job in California that's exactly what he wants to be doing. We're thrilled for him, but so so sad that he will be leaving 😭😭😭 Working with him has been great and he has improved F's life so much.

Monday The pulmonologist's office calls as we're driving back from the eclipse. The CT scan only showed a nodule in the lung - which they gave no information on and said they'd talk about it at her follow up appointment (in two months 🙃)

Tuesday We drove all the way back to the hospital (after driving a ton yesterday to get home) to pick up a copy of the CT scan so we can share it with other doctors as needed.

I guess we can't be 100% confident yet, but I think F is getting worse on this new medication instead of better. I can't find information on what an equivalent dose would be with the meds her GP had her on, but I suspect the dose for this new stuff is too low 😕

After writing all that up, no wonder why we're exhausted. This is the gist of it, but I definitely skipped over a number of smaller problems (e.g. the office sent the prescription in with incorrect patient details so F had to sort that out with the pharmacy, etc.). I need a vacation