I fear this has become a blog of complaints, where I whine about customer relations and admin and medical problems, but if you aren’t a person with chronic issues, you may not have any idea what goes into the process of staying alive.
My oldest kid is allergic to peanuts, which I know because when he was thirteen months old I fed him peanut butter and his eyes swelled shut. Some allergies you discover as a baby will fade, like my other kid’s dairy allergy that went away by the time he was two, but peanuts are generally for life. He also has extremely sensitive skin and breaks out in hives at the drop of a hat. I had him tested recently to see if he had any other allergies we didn’t know about.
The PA or NP we saw said oh yes of course, peanut allergies often mean there are other ones, too. Let’s order some bloodwork and see what we see. I repeated that I wanted to know about things that could bother his skin, and she said yes, of course. So I take my kid to be stabbed in the arm, and a week later the NP calls and says he is allergic to peanuts! Yes, I know. Anything else? What about things he could come in contact with through his skin?
“Huh? Oh, I don’t know if the test shows that. You can come pick up the readout I have if you want.”
Lord give me strength. I drove down to the pediatrician and was not allowed to have a copy or even see the full results unless I agreed to a referral to an allergist, which would release the results I paid for that tested my own child’s blood. It required lots of mental gymnastics to digest these regulations. I agreed to the referral, but the NP was busy so I would have to come back another time for the results.
So, I signed up for an online account with the lab company, had my husband stop working so he could scan in the kids’ birth certificates to prove they are my children, even though the lab can also see we all have the same insurance and they are minors who share my DNA, but whatever. After a review period, I am granted access to my kids’ tests and can see that my oldest was indeed tested for dust, mold, and mildew and is not allergic. Good news is not always helpful news.
None of this is unusual. Humans are flawed and make mistakes all the time, and the medical industry is a towering behemoth with hundreds of arms and legs and twelve heads. The more people we involve, the more mistakes will be made. Plus, these PAs, NPs, and doctors see hundreds of people every week who have the exact same problems, and it’s easy to switch to autopilot and miss a specific concern. I’m sure these folks are used to parents asking for peanut allergy tests, so that’s what they order. And when the front desk people are not the same as the medical people, they may not know that a patients’ mother is not allowed to have the results of her seven year old’s blood tests even though they have already been explained over the phone. And the medical people and admin people are not the medicine people, who may notice that two of your prescriptions from different doctors clash and you cant take what they prescribed. And then there’s the insurance who may say you have ordered too many EPI pens and won’t pay for more, even though the school nurse and day care require you to give them a pen and you also need to carry one yourself.
My middle kid, who is allergic to peanuts, sesame products, and now suddenly all finned fish, went to the allergist for the first time yesterday. The wait was long, but the doctor is thorough with each patient, and that’s literally all I’m looking for. Explain everything, offer options where applicable, and ask me if I have questions, because I do. I usually write them down so I don’t waste their time or my own. He didn’t need any more testing because his blood results were conclusive: he is allergic to presumably all finned fish (all the ones they could test for, plus tilapia which is what I fed him) and developing new allergies is unfortunately not uncommon. He offered to test any type of fish I wanted to bring in, but said that practically, we should assume is allergic to them all. There could be a specific type that is safe, but he could never order it in a restaurant because of cross contamination, and even buying it fresh is a risk for the same reason.
His reactions to fish, sesame, and especially peanuts will be severe and life threatening if we aren’t prepared, and he will have to be surrounded in Benadryl and EPI pens for the rest of his life. Still, the appointment was worthwhile, because the doctor carefully explained how these things work, gave me a refresher on EPI pen use, and assured me I was doing everything I could to protect him. He could have done extra testing and charged me a ton of money, but he was honest and said it wasn’t necessary. He told us where the biggest risks would be, and how to handle them.
I had hoped there would be some sort of predictive test, like if we tested him for everything in the world I wouldn’t accidentally poison him at dinner ever again. The doctor explained that sometimes you develop a new serious allergy overnight, and being allergic to fish doesn’t really predict other allergies, because even shellfish and finned fish aren’t linked.
Honestly, some doctors are shit. I called my gastroenterologist with a question on Friday morning and it is now Wednesday and I haven’t gotten a call back. Last time it took two weeks.
As a result of all the things that go wrong, even when you just need a quick checkup and blood panel, I really try to be informed on my own. I know that my medication can damage my liver and kidneys, so when my gastroenterologist is MIA, I ask my regular doctor to throw liver and kidney function tests in to my regular bloodwork so I don’t die of neglect. I know my medication requires regular TB screenings, so I asked for one of those, too. Of course, my insurance may decide those tests weren’t warranted in the settings they were ordered, so I may have to argue for my own care when the bills arrive, but funeral bills are also very expensive.
Recently, articles have been published about vaccine efficacy in patients with immune deficiency. So, you get the vaccine, and it triggers the production of antibodies so you can effectively fight COVID-19 should you be exposed. But, guess what you need in order to produce antibodies? A functioning immune system! The huge relief I felt getting those shots was short lived, because articles starting coming out saying that we were all free! And then in fine print: unless you were a person at risk of death from COVID-19 before, then you should stay in your bunker. So…what now? People going through chemo who have absolutely no defenses might not have mounted a significant response to the vaccine. I have *some* immune system, and an antibody test confirmed I did produce *some* response to the vaccine, but I still have to wear a mask everywhere, so that’s neat.
Of course, I was first administered the wrong antibody test, which measured my response to contracting COVID-19, which I did not contract and therefore turned up exactly zero antibodies, which was alarming to say the least. Thankfully, my husband’s quick online searches explained that there are different kinds of antibody tests – the kind for people who want to know if they’ve had COVID-19 and the kind for people who want to see if their vaccine was effective. I’m sure the lab had done thousands of COVID-19 antibody tests to see if folks had gotten the virus, and just switched on the autopilot.
Another day, another human error.