At the end of my last post regarding my hysterectomy saga, I was waking up after surgery. And when I say waking up, I mean somewhat opening my eyes and talking to people…sorta. I remember Charlie was there, I remember throwing up several times, I remember having a couple of visitors including Cassidy and I remember falling asleep here and there.
Later that night, I was eating, talking, walking and trying desperately to pee. In fact, most of my entire night was trying to pee. I knew that once I peed – I was really on the road to recovery and could go home the next day. Plus, I could feel my bladder about to burst and that isn’t fun in the hatchback of a car after a Steve Miller concert nor is it fun in the hospital. As much as I felt the need to pee, I simply couldn’t. I had to be catheterized several times and, eventually, I was discharged with a foley (aka piss tube and bag). This also happened to after my daughter was born, so I wasn’t too distraught about it. And it didn’t hurt.
I was given a prescription for macrobid to prevent any urinary track infections which could be caused by the foley. I was to be on this med for two weeks.
I returned to the doctor’s office on Monday and had the foley removed. I was able to then urinate on my own so that part was over.
During that appointment, I let them know I wasn’t feeling right. I was very weak and dizzy. I couldn’t take a shower on my own and could barely walk. I felt very, very ill. They thought it might be the pain meds and told me to make sure I eat when I take them.
That was the beginning.
I started noticing that my legs would turn a reddish/purplish color when I stood or walked. They also felt sore, heavy and numb. My joints began to ache – even my fingers. I had a lingering headache and would sometimes feel short of breath. I felt feverish and very much flu-like. I just didn’t feel right. I called my general physician and my surgeon. Both said I was probably just having a harder time healing. My GP did order some blood work and my CRP was elevated – which just tells ya that there is inflammation going on. I also tested positive for Epstein Barr but I guess they felt that test was irrelevant. I was told just to continue what I was doing and not to worry.
In addition to the above mentioned symptoms, I developed a rash on my chest, a metallic taste in my mouth, a very white appearance in my mouth and throat, floaters in my vision and extreme exhaustion. I also had a very tender, achy feeling in my upper right abdominal quadrant. I contacted the on call nurse (this was about 2-3 weeks post op) and she said to go to the ER just in case there was infection.
In the ER, they completed a large amount of testing, gave me some IV fluids and sent me on my way. They said I was fine. I was relieved and felt better thanks to the IV.
A day or two later, my surgeon called and told me that my liver enzymes (taken in the ER) were extremely elevated and to call my GP. I did. They scheduled more testing. And, after that, an ultrasound of my liver. None of these tests gave any answers aside from eliminating possibilities. For the next few weeks I would undergo a shit load of labs and ultrasounds. Still, no answers as to what was wrong.
I decided to get to work. I researched my ass off. I read and read and read. And eventually, I found the cause of my symptoms and test results. I had drug induced liver injury and peripheral neuropathy from the antibiotic, Marcrobid.
This isn’t common, but it does happen. And it seems to happen more than doctors seem to realize. I think this is because many patients never find out the cause of their symptoms and it is never reported as an adverse effect. Many times, symptoms do not occur until after the patient has long been done with the offending medication. I also believe the pharmaceutical companies keep busy doctors in a haze about the true ADRs (adverse drug reactions) of many overused medications.
These reactions seem to be much more common with fluoroquinolone antibiotics (ie. cipro, levequin, etc). There is quite a lot of information regarding these reactions from those meds. Here and Here are just a couple of articles; but there are many all over the internet. I also found THIS website devoted to patients who have had these reactions. And reading their postings made me feel less alone. And strange thing is – the symptoms are almost exact. Each person is different, of course. But the similarities are remarkable. While researching this mountain of information, I found that Marcobid and fluoroquinolone ABs are quite similar chemically as well.
So, after I found this info, I brought it to the attention of a doctor who was covering for my GP. She was surprised but after reading some things, concurred with my findings. I then went to a gastroenterologist who told me, “I sure wish all of my patients came in with their own diagnosis! While reading your chart, this was the first thing that entered my mind as well.” I thought to myself, “I sure wish they didn’t have to.”
He examined me a little bit, asked some questions and indeed did diagnose me with DILI with PN (drug induced liver injury with peripheral neuropathy) due to the Macrobid.
He said that my liver numbers were improving and that I was to be tested again in September. He said many of the symptoms, especially the ones involving nerves, could take a year from which to recover. I wasn’t really given any instructions – just to come back in September.
The pain in my legs has been the worst, really. It comes and goes and the type of pain changes. Most often, they feel very heavy, achy and like I have very, very tight socks on. One day, the pain was significantly worse and they were quite swollen feeling and red. It was after hours so I went to urgent care. That doctor was wonderful. He spent a lot of time with me and really explained how and why these sensations are happening. It helped me a lot and he was the first doctor to really take the time to do this for me. I was beyond grateful.
Last week, I decided it was time to go back the chiropractor who had helped me in the past with TMJ and back pain. I just couldn’t go on doing nothing. I have been feeling like I am 80 years old and it has been sinking me into a deep depression. I didn’t know if he could help, but it was worth a shot.
He examined me extensively and spent 90 minutes with me. He said that if he didn’t know better, he would think I was in a really bad car accident. Due to the systemic toxic reaction from the medication, my muscles, joints and nerves are all a hot mess. All over my body, I have muscles that are contracted and on the verge of spasm. My mobility and flexibility are shot. And something I was not expecting – my abdomen is filled with scar tissue from surgery. Because of the toxicity and liver injury, I was not able to heal properly after surgery. Because of this, scar tissue is causing a great deal of problems (including intestinal) and pain within my entire abdomen. If left untreated, it could cause serious issues and future surgeries. I have also gained about 15 pounds and have significant swelling/bloating in my belly.
So, physically, in a matter of just a couple of months I aged 40+ years and my entire body has changed. I cannot put into words how shocking and distressing this is. Absolutely heartbreaking, really. I had this surgery so I could feel better and have a better life. Now, my life is filled with pain, worry and an overwhelming sense of being out of control.
My chiropractor is confident he can help me with scar tissue release therapy and gentle adjustments. I will be having these treatments twice a week for a long time. I am hopeful, but not optimistic. It is difficult to not expect the worst after everything I have been through.
I was in tears as I left. I felt so relieved to hear that there is hope. I felt vindicated after so many people acting as though this is all in my head. I felt grateful that this professional showed me respect and compassion and true understanding for what I was going through. I am sure crossing my fingers that this therapy helps me.
My other doctors do not seem to want anything to do with me. Not sure if they just don’t have answers or if they are worried I will sue (there are some lawsuits regarding this and similar medications – but I am not the type to do something like that)…but aside from throwing prescriptions at me, they don’t want to see or talk to me. I am not blaming. While I DO wish I had been heard when I was complaining in tears about all of these weird symptoms (when I was still poisoning myself with the macrobid) and I do feel I was ignored – it is not my intention to blame. I only want to feel better. I just want to be heard, validated and given some options. I am so grateful my chiropractor was able to do this for me.
I was really beginning to believe I was nuts. Or at least that no one would ever listen. I was even starting to blame myself. He said that I would have to be unbelievably talented to create these physical issues with my mind. We both agreed I was, indeed, not that talented.
I want people to be very aware of their bodies when taking any prescription. I want people to report their side effects. I want people to stop being afraid to question their doctors. I want people to stop believing that drugs are safe just because a doctor can prescribe them. I want people to trust their own judgement, listen to their intuition and be their own number one advocate. No one knows your body as well as you do and no one will care as much as you do. Doctors are too busy to read the latest reports on every single medication. They aren’t lucky enough to have the kind of time House MD has to diagnose a patient. It sucks and it is wrong – but we need to get smart and start paying attention.
My whole life, I have experienced weird ass medical shit. No poison ivy, no broken arms, no ear infections (yes, I am knocking on wood). What HAS happened? In second grade I lost all control over my facial muscles for an entire day. When I was pregnant, I developed an enlarged blood vessel on my tongue which bled whenever it wanted for the next four years. I did have the common chicken pox…a couple of times. I have a weird heart arrhythmia most have never heard of (supraventricular tachycardia, anyone?). When I was a kid I used to get these weird infections on my fingernail cuticles. And, the latest addition to the list is a rare drug induced liver injury caused by the antibiotic Macrobid. If it is weird or rare – it may just happen to me. This has made me a little more vigilant than I should be. It has caused me to have considerable anxiety. But it also helped me help myself (and my family). And I hope I can help some others as well. I mean, shit. These fucking unlucky ass experiences need to be put to some good use, right??
Next time, I will talk about how intuition and subsequent anxieties may have played a role in my NOT being diagnosed properly over the years. If I hadn’t been so aware and vigilant – perhaps I would have been taken more seriously…??
(Please know that as saddened as I am about all of this – as angry and frustrated as I feel – I realize completely how much worse it COULD be. I know very well that people deal with much more horrible illnesses and disabilities every day. I know this and I am grateful for what I DO have. I really am. This is simply my account of where I have been and where I am now in regards to this experience.)