Chapter 25 – Drugs and Money

At this point, taking a random assortment of 10 pills of different sizes and consistencies at once, some of which dissolve immediately while others like to stick together, just swallowing the lot doesn’t seem like a big deal, but I definitely had to work my way up to that point. I am currently taking 9 different medications which total 20 pills a day; 10 in the morning, 4 at noon, and 6 at night. Partially because I hadn’t swallowed anything in over a month, partially because of the multiple surgeries around my throat, and partially because I was never great at swallowing pills, but the idea of even swallowing 3 or 4 pills at once just seemed like a choking hazard. I remember one morning in Craig hospital just after I started taking my medications orally, when my sister, who was supposed to give me my pills one or two at a time, just dumped the whole paper cup [fast food ketchup container] of pills in my mouth at once and I thought she was trying to kill me, and that was only 5 or 6 pills; to be fair, I don’t think anyone specified how many to give at once. Things are much easier now; repetition and renormalization really do wonders for progress.

I might as well be taking three of the medications regardless of disability, all three are over the counter; a multivitamin for general health, 1000 mg vitamin C for overall health and to acidify the bladder to help prevent a urinary tract infection (UTI) [possibly a real thing, possibly a placebo], and 81 mg of Aspirin to prevent blood clots. Let’s run through my other medications and what they are for. I’ll go ahead and address side effects beforehand. I haven’t really noticed any significant side effects over the long term, but I have also been taking them since I was in the hospital, meaning I really have no idea what is a side effect of the medication and what is a side effect of being paralyzed. Most things I complain about are things the medications are attempting to mitigate.

First up is Gabapentin, which is an anticonvulsive medication which is also prescribed to help manage nerve pain. According to The Cleveland Clinic, it essentially alters the way that the body senses pain by acting as a gamma aminobutyric acid (GABA) analogue; GABA reduces the excitability of neurons that play a part in seizures and the transmission of pain signals. Each of my pills are 300 mg and I take 3 in the morning, 3 at noon, and 2 at night, for a total of 2,400 mg. More recently I switched to a drug called Pregabalin, which doesn’t act directly on GABA receptors, instead it modulates the release of the neurotransmitter by binding to the alpha-2-delta protein. The pills are only 150 mg and I only need to take 3 a day. In my experience, it has lowered the base level of my pain and I am less tired.

Next, we have Cyproheptadine, which is an antihistamine prescribed for allergy relief; however, in a study from 30-odd years ago, it was shown to be effective in reducing spasticity and increasing locomotor function in SCI patients. Cyproheptadine works by blocking serotonin receptors, but there are no serotonin-producing neurons that pass through the spinal cord below the site of injury for patients with SCIs. According to a paper published in Nature, by Elie Dolgin, “the serotonin receptors in the lower spine become reactivated after injury, even though there are no serotonin-producing neurons below the site of spinal transection. The researchers found that cyproheptadine silenced the receptors and eased spasms in rats with severed spinal cords.” It’s a bit like turning on your TV to see a picture, even though no one is broadcasting anything… strange. I don’t know if I have noticed a huge difference because the amount of spasticity I experience is always changing, but this is one I take and just hope it’s working. I am currently taking 4 mg of cyproheptadine 3 times a day.

Next up, we have Nitrofurantoin, which is an antibiotic that is prescribed to treat or, in my case, prevent UTIs. I wasn’t on this one from the start, but after a few absolutely draining UTIs my urologist prescribed a constant dose of 100 mg a day. As evidence of its effectiveness, in the 5-ish years I have been on it, I have only gotten 2 UTIs, as compared to the 4+ in that first year; one was when I ran out of the medication and didn’t take it for three days and the other was when my body had multiple serious issues going on at once and the UTI was the cherry on top. Given how debilitating having a UTI feels, this is the medication I watch over the most obsessively so I don’t run out. Nitrofurantoin, when taken orally, gets filtered out of the blood and concentrates in the bladder in your urine, and it kills the bacteria by messing with its genetic material.

The next one down the arbitrarily ordered list is Oxybutynin Chloride, which is an antispasmodic prescribed to control bladder spasms. In people dealing with paralysis (injuries above T12), the bladder will experience involuntary contractions, and for people like me with an indwelling catheter (semi-permanent) that can mean the bladder will continue to shrink, leading to a lower retention capability. The oxybutynin helps prevent the spasms by relaxing the muscles that are found in the bladder wall, which allows the bladder to expand; or at least prevents it from continually shrinking. It essentially works by blocking the action of acetylcholine, which is responsible for transmitting signals that initiate bladder contractions.

In the penultimate spot we have Midodrine which is a vasopressor and antihypotensive medication used to boost my blood pressure when needed. I take 40 mg in the morning to keep myself from blacking out during my bowel program, shower, and while getting dressed. If I leave the house, I always take a dose with me in case my blood pressure randomly drops and I need to drive or just function as a human. It gives me a nice boost for a few hours when needed, the only drawback is that when my BP is higher, my nerve pain can get worse.

Finally, Senna is an herb which acts as a laxative. As a quadriplegic, the typical peristalsis, which moves stool down the intestinal tract, doesn’t happen due to neurologic damage, and so I use Senna to help move things along. Senna works as a “stimulant laxative” which keeps water in the intestines, and along with a suppository in the morning, which is also a stimulant laxative, and digital stimulation, you can make up for the lack of natural peristalsis. I take 17.2 mg at night before bed. Basically, I’m putting laxatives on both ends and hoping they meet up when I’m over the toilet and not in my chair or in my bed.

At some point, I calculated the cost of my pills per day; thankfully, my insurance covers the cost of all the prescription medications and I only have to cover the over-the-counter medications. Everything included, without insurance I would be paying a little over $20 a day; that’s about $610 a month; keep in mind federal minimum wage of $7.25/hour is $1,256.67 a month, so half of that gone, before rent, food, or any other expenses. And while $20 a day is pretty ridiculous; I am very aware of the fact that other people are in situations where their medications can be exponentially more expensive. The thing is, developing the drugs, testing them, and getting them FDA approved is an enormous financial gamble given how many don’t work out. This increases the cost of the drugs that do eventually make it to market. Then you have the salaries of the top people within the pharmaceutical companies, which can be mind boggling. I’m conflicted here, per usual, in that I know their salaries are far too high but money attracts talent and when you lower top salaries, talent may look elsewhere for better compensation. It would be nice if everyone were altruistic and worked for reasonable compensation, focused on helping people; however, that is very clearly not the reality we live in. However, drug prices in the US are just unjustifiably high.

The quick and dirty version of the economics of having chronic medical issues is that just about everything is more expensive and your opportunities to make money are more limited. The majority of it is pretty logical and sometimes unavoidable; like, if you can’t walk, being an alpine guide might be a bit unrealistic; likewise, if you make a product marketed to only 2 million people and only a fraction of those will want your product with a fraction of those choosing your company’s product, the economy of scale no longer applies and you have to charge more for the product. Understanding why things are the way they are doesn’t make paying $60 for a fork, knife, and spoon, any less painful or ridiculous. And sure, you can definitely find things that are cheaper but you start to sacrifice the durability, quality, usability, etc. and when you are talking about items that are critical to being able to go about your daily life, that is a sketchy game; one that some people have no choice but to play. Without insurance, my bills to date would easily be in the 7-figure range. Early on, I vaguely remember hearing of a bill insurance was covering, nearing three quarters of a million dollars. The costs from the original hospital bills, both the ICU and 3 months at Craig, to all of the specialty equipment (wheelchairs, clothes, utensils, etc.) and daily care (CNAs, nurses, therapists, etc.) builds at a dizzying pace.

One of the worst parts about the paralysis making almost everything more expensive is that it also limits your opportunities to make the money needed to cover it all. It was soul crushing scanning through job listings where the majority of jobs were ones I categorically could not do. The twist of the knife was also realizing the jobs I got the most excited about were the least viable options. What do you do when you love to work with your hands but your hands don’t work anymore? Still, there are a number of organizations that will help you find something to do. I was in an awkward position because I don’t have a PhD in physics. Typically, a person with my degree would find work doing the busy work for someone who does have a PhD… but that busy work is exactly my weak point; who wants a quadriplegic trying to set up sensitive laser equipment or trying to get into a clean room? However, all of the little medical issues also make working a traditional 9 to 5 job tough.

In my case, I was beyond privileged to be pretty much entirely covered by the combination of school insurance and Colorado Medicaid; and what wasn’t covered by insurance my family took over. It’s bad enough trying to get accustomed to being paralyzed, if you are forced to live with that dark financial cloud looming overhead it can be exponentially worse. Getting so much assistance, it’s hard not to feel like a burden; but not getting any assistance seems panic inducing. Without assistance, it just doesn’t seem very likely that you ever make it out from under that debt, which is why universal healthcare or Medicare-for-all are such important policies to push forward. People turn to family, friends, or significant others for help but it’s really difficult for that to not be a constant strain on the relationship. And that’s assuming your family, friends, and significant others are able and willing to cover the additional costs. Things start small, but they can quickly turn to deeper seated resentments; it’s really important to keep an eye on those internal thoughts, no matter how brief.