What would happen if someone *harmlessly* forgot I was allergic to Penicillin?
So if you’ve been following along then you may remember I had my wisdom teeth removed a few weeks back. In my consultation with the oral surgeon, I had to make sure he understood every little detail about my medical history, including that I am allergic to Penicillin before we even discussed removing my 4 wisdom teeth. I've posted enough photo material of clinical content this week so no photos today, sorry y'all.
Here’s why - I take roughly 12 medications, a mixture of oral, topical, and subcutaneous. Closer to 18, if I have to dip into my emergency stash or hidradenitis treatment time stash. With oral surgery came anesthesia and localized numbing. Making sure we had zero drug interactions were top of mind, second was healing time because one of my medications is a biologic.
Biologics tend to suppress the immune system to help deal with inflammation. HS is a chronic inflammatory condition, meaning I am inflamed, constantly. It's also why reducing my CRP to 1 was such a massive win. The addition of a biologic helps curb the inflammation and target the specific areas my body needs support with when it comes to fighting Hidradenitis Suppurativa. This is a generalized summary of the purpose for my taking the drug - as always, you should discuss with your medical provider if you are a good candidate for a biologic.
With the biologic suppressing my immune system, it means that my healing time is going to be longer. Not just for my wisdom teeth but anything - a scratch, a cut, a burn, a cold, the flu, you name it. James and I actively stay away from folks who are sick or have recently been sick. We take extra precautions when flying or traveling. What may take you 3 days to get over could take me 3 weeks to get over. It’s not a risk we take lightly.
There are some biologics that have to be stopped at least a month in advance of any bone-related surgery to give the patient’s body enough time to prepare for the trauma of surgery. The moral of the story is - providers have to know and understand why I may be taking a certain cocktail of pharmaceuticals.
It is important to keep a list of your drugs (Rx or OTC), supplements, powders whatever, and their respective dosages readily available on your phone, in your wallet, wherever. James and I have a shared note that has all of my medications, preferences, and allergies. It is vitally important that your partner and or emergency contact be well-versed in your medical history, drug preferences, reactions, etc.
I am allergic to penicillin, which means I’m also likely allergic to amoxicillin and anything else in the drug family. Now, I already have preferences for antibiotics. After years with HS and killing my gut with different antibiotic cocktails as well as surviving the holy trinity of vaginal infections (BV, Yeast, and UTI simultaneously). I AM VERY PARTICULAR about what antibiotic I take.
In case my all-caps didn’t get the point across.
It took me over a year to get my vaginal pH from basic back to acidic because of BV. And it was miserable - I had to retrain my gut, stay away from certain foods, reduce alcohol consumption and really be more diligent than usual with vaginal (and sexual) health.
My oral surgeon wanted me to take a course of preventative antibiotics - and rightfully so. I am immunosuppressed and have a longer healing curve. Taking the correct steps to avoid an oral infection was the right thing to do. However, here is where the miscommunications come in. The oral surgeon and I had a very good rapport, he understood exactly what I was taking and why, but his staff did not. Or maybe they did and just forgot because it’s not the norm for them.
That misunderstanding could have caused a massive problem.
They wanted to send me home with a prescription for amoxicillin - this would cause an allergic reaction which is the last thing I need to be recovering from. Mind you, this entire time I am sort of lucid and battling excruciating pain from my jaw being pried open for 2 hours. So James has to advocate for me and let me tell you, my husband is not a confrontational man. He got a crash course in how you sometimes have to be really clear and persistent because sometimes people will pick what’s easiest for them versus what’s best for you.
I told him to ask my oral surgeon’s staff if I could take my preferred antibiotics instead - we never got a straight answer. It seemed like the staff went down the list of acceptable Rxs instead of actually putting the oral surgeon on the phone with me/James.
My specialist that leads the charge with my Hidradenitis Suppurativa care is amazing, she is also very busy. In my semi-lucidness, I texted her asking what antibiotics she’d be okay with if the oral surgeon gave her a list. Here’s where the misunderstanding occurred - amoxicillin was at the top of that list, and she chose that. I caught the text while James was on the phone with my oral surgeon, and reminded my specialist that I’m allergic to penicillin. She then chose the next antibiotic down but made a point to my oral surgeon that his staff should have never included amoxicillin as an option.
We settled on a Z-pack, and several recommended supplements from Dr. Oja at STAT Wellness as well as a Glutathione IV to support my gut and my body in purging any ‘free radicals’ as a result of anesthesia. While my patient relationship with my oral surgeon is shorter than with most other providers, the experience still serves as a reminder
If there is ever a time when I am incapacitated, is James prepared to have conversations with providers, remember my medication preferences, and understand how to navigate my post-care routine?
Clearly, after my wisdom teeth, that answer was no. And he learned the hard way just how angry some of my providers can be when they’re being brought in to consult on medications for a procedure that they didn’t perform. Their anger stems from wanting to make sure a needless mistake doesn’t regress any hard-fought progress I've made.
If you don’t trust your providers to communicate, then you have to hold them accountable by way of over-communicating and over-preparedness. I understand how difficult it can be to manage multiple providers, but at the end of the day, their goal is the same as yours. You should receive the best care possible. Full stop.
Now, for James, this was a relatively low-risk learning experience. Nothing actually went wrong, and that’s mostly due to the fact that I was semi-lucid. A few weeks later, after the dust had settled and I was mostly back in my daily routine, I asked him how the experience made him feel.
He told me it was hard for him, it’s a lot to remember, and he doesn’t always know when he needs to push or be more confrontational. I shared with him my biggest fear is that something goes wrong, I am incapacitated and he’s just a bystander - feeling helpless in a situation where his wife’s care or heaven forbid quality of life is on the line. The only way to mitigate my fear and empower him is to make sure he understands every RX in my body, every procedure in recent history, physicians' (or nurses') information, and that he should always be politely confrontational in every conversation where I cannot advocate for myself.
The only way to alleviate the stress of these kinds of situations is to prepare for them. Everyone has to communicate. No one is out of the loop on this, no one has the luxury of being out of the loop. So here’s my advice - keep a shared list, make sure your medical release forms from providers to providers are up to date, and make sure your emergency contact or next of kin understands your wants, preferences, and needs.
I’m an Android user so I use the “Keep Notes” app because it synchs with Gmail - James has a Gmail account so he’s added to the notes list. He always has access to it. Update this list as often as you need to - I change some medications quarterly, so that’s how frequently we update ours.
It’s better to be prepared than to wish you could go back and change an action you didn’t or shouldn’t have taken.
With brutal honesty, wrapped in good intentions,
@yasmeenemilia