One or two of my drugs are on the most recent FDA drug shortage list linked in this article. While this issue is of great concern to me (as it should be), I have found it’s not just drugs on the actual shortage list that I’ve had issues with getting while I’ve been hospitalized for various things over time. It’s been others, too.
On a repeated basis, I’ve had to face substitutions that don’t work for my GERD (acid reflux) medicines when I’ve been hospitalized.
This is a major hurdle because if my stomach acid isn’t controlled it leads to my nausea medication not working (that I take for my pain medicine) & also an inability to eat & digest properly. I can eat very little or what I do eat, even if it’s bland does not digest right. This is a vicious cycle of symptoms & actual pain (in the literal sense) that might be able to be avoided altogether if I can just get what I need, or at least plan ahead to have it on hand if the hospital doesn’t.
The GERD drug I’m on now is one of the newer ones, but I’ve burnt out of all of the previous ones.
It took my local health system’s trauma center three days after my car accident (which was enough to cause a problem) before they told me I could bring in my medicine from home.
I didn’t realize what the issue was until I had very bad stomach upset (which I thought was from the pain medicine at first). When I complained & asked what they were giving me for acid control, I was they were giving me nothing short of a step-up from an over the counter reflux medicine because that’s what they stocked. Something like Pepcid but not the prescription strength. No wonder I was in such a sad state. In this case, it wasn’t even a direct equivalent in the same drug class that they tried first.
They had my drug list, but they didn’t tell me what acid pill they gave me. I knew it was a different color but thought perhaps it was at least Protonix or some other prescription strength medication.
I also was feeling too ill & too dumpy to pick up on this since they were having problems controlling the pain from my broken rib & my shoddy breathing from the aspiration pneumonia from the airbag dust.
I was pretty livid that it also took them 3 hours to process my medication when I had my friend bring it in from home for me. The nurse got kind of snotty with me when I asked her what she would have done if I would have just smuggled a pill & taken one (I was almost that desperate). She said she would have reported me… Whatever that means… (Thanks for the compassion when it was a team effort of lack of communication that caused the entire issue to begin with, lady. But of course my pain & my reflux are my problem since I can’t control them myself, especially when I’m not getting what I need in order to do so in the first place.)
I brought that stash to the rehab center that I was transferred to. (This was a nursing home since the hospital system & the other hospital I had to be readmitted to after being released from the trauma center didn’t have an inpatient rehabilitation wing.)
I almost didn’t get it back when I discharged because they “misplaced” some of my medicines.
Luckily, they mailed it out a few days later after I complained to a few people about it. Even though it was local, I had to have it mailed because I was without a vehicle or a rental car at the time since my vehicle was totaled (thanks to the man at fault who hit me).
I figured it was the least they could do for the trouble. Especially when I gave them at least a 2-3 hour notice in advance of my discharge to review everything & pack up as I was doing so. They still failed to have it all ready to go for me.
I could have lost a month’s supply out of pocket with that snafu. That could’ve cost me close to $80 (even with insurance) to replace.
Quite a few years ago, my (then) pulmonary doctor took me off of Advair for my asthma & LAM problems because one day it quit working entirely for some unknown reason. I remember it vividly because I had very bad bronchospasms that day that my rescue inhaler could not relieve.
He switched me to an older medication (but still name branded) that was similar that worked fine. But this medicine seems to have the problem of not being stocked in hospitals routinely. I can’t seem to ever get that one either in the past few years.
For that particular medication & another similar long-acting asthma medicine I take, the hospital(s) give me what they “deem” as direct equivalents or substitutions but they are medicines I don’t normally take. (Same issue in the nursing home too.) They also have a different method of delivery that is less user-friendly than my medicines which also adds to the confusion.
I keep my fingers crossed & hope I don’t flare & that it does work just as well because there’s usually not time to correct that.
But I don’t get the pamphlet or the drug leaflet in the hospital or the facility for these new medicines & that concerns me. There’s no information for me about the drugs & their side effects or even to prove I’m given the “direct” equivalent. I typically like having it to look over so I know what to look for in the event of a problem or a reaction. Instead, I just have to take them at their word.
I could look it up on my phone, but when I’m sick & laid up, why should I have to? The information should be given to me, period.
All of these frustrations (shortages & swaps) have led me to now have a conversation at my next transplant & local doctor appointments for a drug review prior to transplant & listing.
I’d rather not switch up my cocktail now, but I’d rather see if one or two of these medicines I can never seem to get anymore in the hospital could be swapped out for medications that work just as well & are more readily available.
I would have done all of this on (this past) Thursday. However, due to the blizzard & digging out from under 32 inches of snow; I had to reschedule because I also needed other tests (so open dates & times were more limited). Now, I’ll wait until later in February.
I do see my local pulmonary doctor before that, so maybe I’ll have her start me on something in the interim.
Then I can report to my team whether it’s working or not since the appointments are a few weeks apart & then circle back with her later.
The GERD med issue I’m stuck. I’ve tried every other medicine & I don’t respond to any of them.
I intend to & need to discuss these issues with my transplant team. I’ll need to know what the game plan is. Whether the transplant center/hospital pharmacy stocks my GERD medicine or if I have to try & have extra medication to bring to the hospital with me in the event they don’t.
I do (at times) resent having to take care of things like this. Especially with everything else I try to file away to manage & remember to stay on top of.
Yet, I pride myself on being on top of it enough to notice & pay attention to these things. Instead of letting them slide or expecting it to be fixed immediately in the height of a crisis.
The car accident was an exception to my normal rule because no one can prepare for something like that, it just happens. Even the most anal & organized of us can be caught off guard at times. At least I learned from that experience how I can be more proactive in raising concerns before they become a cascade of potential problems.
I also tire of being expected to switch out to new things on the spot. Or be willing to take gamble sight unseen because I can’t get my regular medicine from whatever facility at that time.
Sorry if I’m a little less than trustworthy of taking them at their word after some of my past experiences.
If at all possible, I’d rather just stick with I know what works & is readily available. Even if that means changing things up from time-to-time.
This will take on even more relevance post transplant because I’ll have enough side effects & things I’ll have to monitor with my new anti-rejection meds to worry about these types of other medication issues that I shouldn’t have to be in control of, but need to be in order to take control of things to make it easier on myself when I’m feeling “punk”.
If I can take my asthma & some other regular meds out of that particular equation to worry about, I’ll be more at ease.