If you've been reading along from the beginning you may recall that I don't like to take medication unless it's really necessary. I'll suck it up with a headache or whatever, and even struggle through allergy season, without taking pills until I am really desperate. There have been a few times over the years when there's been no choice, and I have been on some prescription things for stomach troubles, but otherwise I like to think I am pretty clean.
You might also remember my terrible pain, numbness and loss of sensation in my arms that was never fully explained, and how I remain suspicious of the antibiotics I was put on.
It was during my sleuthing phase that I discovered that the Records department of the hospital would have a complete accounting of all the medication I was given while in the hospital. I had to personally visit the department and provide ID, and was allowed to review my records and make notes, but not make any copies, or if I wanted to it was going to be $80 or something. (Psst. I snuck photos of the pages with my phone. Screw the man!)
The standard blurb is that all pharmaceuticals come with some side effects, but that someone has decided the benefits outweigh the risks.
So anyway, I went in to the records department to find out just how much Cipro I was given but I was completely staggered by the variety and quantity of pharmaceuticals I ingested during twelve days. Of course, as I later realized, I didn't get Cipro until I left the hospital, but what I saw in my records still alarmed me.
Below is my edited transcription of the hospital records, starting on June 23 and working back to June 8, the day of my surgery, and encompassing both of my hospital stays.
Start | End | Medication | Dose | My comments |
23/06 | Herbals | |||
Ibuprofen | 400 mg | |||
22/06 | Lorazepam | 1 mg | Anti anxiety drug (Adivan) | |
Sodium Chloride | 10 ml | |||
Lactulose | 30 ml | Laxative | ||
19/06 | 29/06 | Ceftriaxone in D5W | 1 g | Antibiotic |
29/06 | Metronidazole (Flagyl) | 500 mg | Antibiotic. Adverse effects can include peripheral neuropathy (nerve damage), tingling/numbness in hands and feet. Listed by the US National Toxicology Program (NTP) as reasonably anticipated to be a human carcinogen. | |
Dimenhydrinate (Gravol) | 25-50 mg | Side effects include ringing in the ears | ||
KCL | 1000 ml | A potassium supplement | ||
10/06 | Sodium Chloride | 10 ml | ||
15/06 | Morphine sulfate | 2-4 mg | Pain relief | |
15/06 | Oxycodone | 5 mg | A different pain reliever. WTF? | |
8/06 | 13/06 | Acetominophen | 650 mg | Tylenol |
Diclof/MISOP | 50 mg | Side effects include ringing in the ears | ||
Dimenhydrinate (Gravol) | 25-50 mg | As above | ||
12/06 | Gabapentin | 200 mg | For relief of neuropathic pain | |
10/06 | Ketorolac | 15 mg | For pain relief. It is an NSAID (Not steroidal anti-inflammatory, same family as Ibuprofen) | |
13/06 | Morphine | 150 mg | ||
13/06 | Morphine sulfate | 5-10 mg | ||
13/06 | Naloxone | A special narcotic that reverses the effects of other narcotics | ||
9/06 | Ondansetron | 4 mg | Known to cause muscle stiffness/spasm | |
13/06 | " | " | " | |
13/06 | Oxycodone | 5-10 mg | ||
13/06 | Prochlorperazine | 5-10 mg | Known to cause severe muscle stiffness as a rare serious side effect | |
Enoxaparin | 40 mg | A blood thinner. I think you get this so your blood doesn't clot as you're laying still for long periods after surgery. |
I'm really aghast at being given possibly carcinogenic Flagyl as part of my cancer treatment. Are you fucking kidding me?
I also orally took Cipro, Flagyl and Tramadol (a pain killer) at home after I was discharged from the hospital a second time.
I'll tell you what bugs me the most. You know how when you get a prescription from the pharmacy, you get an information sheet explaining all about the drug and its possible side effects? And how you might even have a little chat with the pharmacist? Well, when you're in the hospital you get none of that. They give you whatever they deem necessary. I suppose all those forms I signed at some point gave them the authority to do this. Something about allowing the doctor to make whatever decision they feel is right based on my needs. So, before I was given antibiotics that obliterated bacteria in my digestive tract, including healthy ones, I was never told what I was being given or what the possible side effects might be. I did have a hospital pharmacist visit me once during my stay, but it was inconsequential, and to be honest, I don't remember much of the conversation.
And I've said it before, but when I was reporting all these weird pain and numbness problems, why didn't any nurse or doctor or the hospital pharmacist ask themselves if I was having a negative side effect and have me stop taking the drugs immediately? It's easy to read too much into it probably, but to me it seems as though there is a bias against questioning the pharmaceuticals, and also against reporting the problems and following up on them. They basically blew me off. If I'm right and my case is not unusual, just how 'rare' are these side effects anyway, if medical personnel don't take patient complaints seriously and/or escalate them? This is a pretty serious question, especially with antibiotics.
So where does that leave me? Well, I have some annoying numbness in parts of my body, some bad memories and a distrust that lingers. I had nearly a full year of physio to regain most of the use of my right arm and shoulder, and thank goodness Dale has 100% coverage on her benefits plan, or I'd be out a couple of thousand dollars. But I also am still here and didn't get an infection when blood was getting into my colon from outside, or when stuff got out of my colon into my abdominal cavity, so I suppose the risks did outweigh the benefits.
There are no easy answers, and I'm not even sure what all the questions are.
Modern medical science is wonderful and I have had the best possible outcome in my situation, but I hope I'm a little wiser.
If I learned anything, it's that you, and only you, are your own best advocate when navigating the health care system. I said in my first post this wasn't going to be an advice column but here goes anyway. Question everything, and don't stop asking questions if you don't understand. Don't accept medication until you know exactly what it is, what's it's supposed to do and not do, and what the side effects are.
The toughest lesson? Sometimes they don't know what's wrong or why. The human body is dazzlingly complex, and the doctors and nurses are just human beings and they don't know all the answers sometimes.
wow Paul - I have had many of the same experiences and were/am on many of the same drugs. A couple of points ...
ReplyDeleteAfter my experiences with myself and my mom, I would say you need some else to advocate for you - a family member who can help make decisions and can be there during the day UNTIL a Dr shows up. There were too many times when I couldn't remember exactly what was said, what decisions were made and when I forgot what I needed to say to the Dr. So take notes to discuss with your Dr or nurse when they come any concerns you have - and give them to your support person too.
Also here in BC they told me every time what meds they were giving me - but I always asked. When the morphine made me sick I had them switch it to Diloted when that made me feel BAD - I had them switch it to Tramacet - with the agreement that if it didn't work they would look for another alternative. I hated that they had me on Cipro and I when I left the hospital I stopped taking it - they kept telling me it was for pain - it is not. My nurses talked to me about the meds but only if I specifically asked.
After my second surgery they couldn't release me because I was having adverse reactions to every antibiotic they gave me - I could not stop throwing up - this went on for 12 days until they got a tissue sample back and they found the correct drug. This just shows that each of our bodies does react differently to the meds they presume will work on all of us.
I was in the hospital for 3 months with a misdiagnosed perferated bowel which took 3 surgeries to correct and 8 months wearing a colostomy bag.
When you are hospitalized, you are in a very vulnerable place - you don't really know what is going on, you are supposed to trust many people you've never seen before and if they can't answer your questions off the top of your head it makes you very nervous. I constantly was nervous about getting infection from people visiting other patients in my room, it was humiliating to be exposed to so many strangers and have no control of my space.
Going home was great but again the pressure on the family is incredible. Thank goodness we both have great supports in our partners and girls.
This has been a great read Paul - it brings tears to my eyes to realize that in different parts of the country our experiences have been so similar - and tell me - I know they gave a good prognosis - but how are you actually feeling? Has the year of physio helped?