It only makes sense to start from the beginning when telling the gross, boring story of my gynecologic surgery, right? Pre-op nerves, preparation, arriving at the hospital…all that stuff. But, why start making sense now? While I will describe the aforementioned steps in due time, I feel I must start with where I am now and why. I want to do this because I feel there are others out there who may benefit from this experience. So much could have been avoided had I known what to look for many weeks ago.
Before surgery I was pretty paranoid about blood clots/DVTs/pulmonary embolisms. They are not all that uncommon with abdominal surgeries and I know of a number of people who have had them after a hysterectomy. This has always been one of my biggest fears (if not thee biggest) when it comes to my health anxiety and suddenly I had a real reason to worry about them. I knew there were other possible complications but I was not so hyper-focused on those. I certainly never once considered the one I would end up having.
I was supposed to be in the hospital for 23 hours. That is the typical length of stay for my type of surgery – DaVinici Robotic Assisted Vaginal Hysterectomy (taking uterus, cervix and fallopian tubes). I won’t get too much into my actual surgery right now, I will save that for later. However, surgery did take longer than the expected 2 hours and was more complicated than we all were anticipating.
I had a less common type of fibroid the size of my uterus which was completely covered in blood vessels and was never picked up on any ultrasound. We never knew it was there. I had other smaller fibroids within the uterus, which were the reason for the surgery. Because of this new alien grossness, I did bleed significantly (not to the point of needing a transfusion) and was even more anemic than when I went in. My surgeon said they “had to do A LOT of work in there” but was never overly specific. I did see the nasty pics tho…ooooo…maybe I should post them!!! I dunno. We’ll see. Anyway, I think it was expected that the recovery would be a little more difficult than first thought.
I ended up going home about 36 hours later. Not only was I anemic, but I couldn’t pee (this is some seriously sexy stuff, ain’t it??). Boy did I try. I was quite the urinary trooper. I would wheel my IV and my hunched over self to the bathroom every 20 minutes trying desperately to fill that piss catcher in the toilet. But my bladder just would not cooperate and I had to be catheterized several times. By the end of my stay, it was decided that I had to leave the joint with a foley and huge ass pee bag. Joy. I also left with a prescription for Macrobid (aka nitrofurantoin) just in case the cath were to give me a urinary tract infection.
I had to wear the foley for 3 days. I was also taking the antibiotic during that time and for the next 2 weeks. When I went in to have it removed, I could barely stand. I was white as a sheet, nauseated and so very dizzy. I had been feeling awful. I mean, I just had surgery. I knew I was supposed to feel like shit. And I did. I felt like I was run over by a truck and then infected with the bird flu. To put it in thug speak: my shit was fucked up. The nurses and surgeon figured it must be the pain meds making me feel so awful and told me to make sure I eat before taking them. I was sent home, bag free.
Over the course of the next two weeks, I still felt nasty. Not just surgery pain, but other weird stuff. My legs were purple with white spots whenever I would stand for more than a minute and were really awful when I tried to shower (I ended up sitting in the shower for a couple of weeks). I would get very feverish, have a metallic taste in my mouth, joint achiness all over my entire body, had random leg pains I can’t even describe, had terrible headaches and my throat/back of tongue was very white. The most concerning was shortness of breath. I just couldn’t seem to get enough air at times. But it would go away and I could breathe fine. Sometimes I would wake up with a gasp as though I had stopped breathing.
I spoke with my doctors. Gyno/Surgeon said that some people just have a harder time healing and repeated that they had to do a lot of manipulating and work in there – that I needed to be patient. My GP sent me for some blood work which showed an elevated Sed Rate of 44 (normal range is 2 – 15). This test is a marker for inflammation and is non-specific. She figured it was due to healing processes.
I also spoke with friends and family. Everyone assumed this was normal after having major surgery. Some mentioned that I was being my typical panicky self and getting worked up and simply needed to calm down. So that is what I tried to do. But I knew something wasn’t right. Honestly, I did. But after having health anxiety and a history of panic attacks – you tend to not trust your judgement very well.
I frequented a website aimed at supporting women who are going through hysterectomies. Hystersisters.com is really a great resource. But I found myself being very discouraged because many of the women (not all as there were others with complications and difficult situations) who were in the same recovery time frame were doing so much better. Many were back to life. I even have a friend who was pretty much herself after a week or so. What was wrong with ME?? Why did I feel so horribly shitty???
About 3 weeks post op, I was having a hard time swallowing and my throat was REALLY white. I was certain it was thrush. I also had a low grade fever and still felt awful. I called the on call nurse and she said to go to the ER. ER said I was very dehydrated, gave me fluids, took a crap load of blood and sent me home. A few days later my Gyno called and said that some blood work came back suspicious from the ER. He said my liver function enzymes were high (AST 166 and ALT 151 – – these should both be under 40) and he wanted me to call my GP. So I did.
She ran further tests. All Hepatitis screenings came back negative. Liver functions were even higher (AST 180 and ALT 285) and GGT was 131 (normal range is 3 – 30). I also had an ultrasound which picked up no abnormalities (other than a hemangioma which has been there for years and is benign and wouldn’t cause this). So no fatty liver or tumors were detected. My iron and ferritin were low, so it was not hemocromatosis. I hardly ever drink so it is not alcoholic liver disease. This doesn’t leave many other possibilities.
I went into full on crazy bitch research mode. I am not gonna lie – I am the master researcher when I need to be. Why I didn’t go to med school is beyond me. I read so many medical sites (not just WebMD shit…I am talking NIH, PubMed and many other sites that physicians use). I read studies and journals and literature. I also read countless patient reports. And I found out what was wrong with me. It hasn’t been completely confirmed, but is highly likely and one doctor has concurred with my findings. Drug Induced Liver Injury due to the use of Nitrofurantoin (aka Macrobid). There are studies and warnings all over the internet. The list of symptoms – I had most of them. And the whole time I was blaming them on the surgery.
Let me say that with this med and this particular reaction – one may not have any symptoms for weeks after stopping the med. Some feel them after one dose. With some people, the complication symptoms go away within days of stopping the medication and other people are stuck with permanent pulmonary fibrosis, peripheral neuropathy and/or liver damage (however these are usually patients who took the drug for a long period of time).
Before I go any further, I want to make it very clear that I blame NO ONE. All of my doctors and nurses have been great. I am not an easy patient and they have all gone above and beyond to help figure this out and to help ease my mind. This is typically a safe medication and no physician could have known how I would react. I do wish the ER would have at least mentioned the liver results and looked into it a little further before releasing me, though.
My liver numbers were very high for a month straight. And then finally they started to go down. I was THRILLED!!! I could see a light at the end of the tunnel and thought maybe I would be back to normal (normal??) soon. But they went up again. Ugh. More testing was ordered last Friday. They are going down for the second time and I am still waiting on more tests. I also have an appointment with a GI specialist on June 9th. But I am really hoping we continue to see them go down and STAY there! The last thing I want is to have further procedures. And I have a feeling GI docs just want to shove tubes into every orifice. I also do NOT want to have a liver biopsy.
They say the effects from Drug Induced Liver Injury can last a good 6 months. I am just truly hoping and praying this goes away soon. I am now in the anger stage and want to throw things against the wall. I am sick of hurting and being so extremely exhausted. My abdomen is swollen like crazy. I have sharp pains that jab me if I do too much. I have tenderness where my liver is. And no energy to do anything. My legs still ache – though much better than they were. They also swell when I walk or stand. I have spider veins all over (a liver thing) that I never had before and they are disgusting. And my heart is acting up a little more than usual (PVCs/PACs).
I just want to feel well. I had this surgery so I could feel better, not worse. And honestly, I do still have high hopes that I will indeed get to that point. I am going to try to be as healthy as I can. Rest when I can. And believe it or not, I am trying to stay as positive as I can. People go through much worse than this and I see that every day. I will get through this roadblock one way or another.
And I will tell ya what – through all of this…I have gained such a sense of sticking to what I feel is truly important in life. I am trying so hard to forget the stupid shit that bogs us down and I am trying to rid myself of toxic relationships and attitudes.
I have such an appreciation for family and friends who have helped me through this. There haven’t been many, but the ones who have been here for me (Kim, Maureen, Kendra to name a couple) are fucking fantastic. They have brought me food, have come over to watch TV with me for hours, text/call often to check up on me and just genuinely show how much they care.
My husband deserves a big fat award in the shape of a Jeep. My relationship with my mom has really improved and I am so grateful for that. My nurses and doctors have been fantastic. And Cassidy. My little sassy darling…I’d just die without her. Really, I would.
These are the things that are important in life. And my time spent on this planet will be different because of what has happened in these past months. Definitely a silver lining. And also a reminder that even when unlucky things happen to me, I am still a pretty lucky bitch.
More to come…thanks for reading…