Category Archives: Hysterectomy Stuff

Hystercovery, Macrobid and a Shitty Summer (with a Dash of Hope)

Standard

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.)

Hysterectomy Adventures: Blood, Guts and Aliens

Standard

I last left off floating away to Medicinal Maui as I was about to go under for my lady parts surgery…

I am warning you…this post WILL be descriptive and gross and grody and icky. If you are squeamish or wish to only think of me as an intact, gorgeous sex symbol (because that is SO happening, right??…teehee) – then you may want to skip this read.

Here are some photos/illustrations/video of  Davinci Robotic Hysterectomies…

 

 

 

There are a couple of reasons I am showing you these sexy images.

1. Since embarking on this glorious journey, I have read so many comments, stories and questions online by the hundreds of women who have this and similar surgeries every day. I am astonished by the lack of knowledge and information women have about their own female anatomy and what happens during these procedures.

There are women who have undergone hysterectomies who have no idea whether or not they still have a cervix or fallopian tubes. They have no clue what is in there and what has been taken out. And because of this, they end up with complications they could have possibly avoided. If a woman knows that the ‘no sex rule’ may just keep her intestines from falling out of her vagina – she may be more willing to follow said rule. And her husband may not be as pushy to break the rule as well.

I understand that knowledge can be scary, people. I know this more than anyone. But you must KNOW. YOUR. SHIT!! Be an informed patient because no one will care more than you. You will always be your own best advocate. Got it?

Now, that doesn’t mean you need to watch videos before your procedure. I didn’t. I couldn’t. But I learned A LOT and I knew what questions to ask and what possibilities I could anticipate – for the most part. There are always elements of surprise and moments of What the Fuck…but be as prepared as you can be.

 

2. When a person has a procedure deemed “minimally invasive” (a term that now cracks me up) and when scars are small and barely visible – people tend to forget that they had major friggin surgery! What, may I ask, is minimally invasive about having organs cut from the inside of my body, blood vessels cauterized, internal incisions closed with hundreds of stitches and body parts being yanked from my vagina? If a man had to go through this – you can bet it wouldn’t be considered so easy and la-dee-da.

This surgery can take an entire year from which to heal. Some, longer. Even if the patient feels back to normal within a few weeks – the insides are still healing and readjusting. Hormones can be fluctuating. Complications are possible for quite some time post-op. And surgical effects can be felt for a very long time. So even if the woman looks like her old self – that doesn’t mean she did not go through a major event. Know this.

 

As I said above, there are definitely elements of surprise. While the majority of these procedures go as planned and as smooth as can be – there are often unforeseen situations that arise.

I knew I had fibroids for quite sometime. They were visible via ultrasound. It was also expected that I had adenomyosis. And I had ovarian cysts off and on for many years. Typically, none of these are life threatening. But there is also no way to know for sure what is what unless and until they get in there to look around and/or biopsy.

There are many women who had no idea they were covered with adhesions or endometriosis. And, sadly, there are also a number of women who thought they just had fibroids but ended up having cancer. Imaging and symptoms can never really give a definitive diagnosis.

Thank God, Buddha, Mother Nature, Ronald McDonald and everyone in between I did not have cancer. But there was a nice little surprise waiting for my cute, young surgeon. Like I said, I knew I had uterine fibroids. One on the inside lining and one on the outer surface. Neither were very large. Additionally, and not expected, there was also a large mass that was the same size as my uterus and cervix combined. This was behind my uterus (and may have been the cause for some of the lower back pain I had been feeling) and attached to the round ligament which is a fairly rare occurrence – Round Ligament Leiomyoma.

This mass was completely covered in blood vessels and really gave my surgeon and staff a run for their money as there was significant bleeding (typically there isn’t much bleeding with robotic hysterectomies) and they had to do a lot of work getting that out while minimizing blood loss. They were also careful to remove it whole and intact because no morcellation was to be used during my procedure.

Morcellation is a process where during laproscopic, robotic and vaginal hysterectomies, the contents being removed are cut into pieces so they are more easily removable. There has been a lot of controversy surrounding this practice and the FDA has issued a warning because it has been proven that women who have had cancers spread due to the cells being relocated to surrounding areas. As I said, until it is sent to pathology, it cannot be certain that a fibroid does not contain cancerous cells. If a cancerous mass is morcellated inside of the body, this can spread the cancer and risk the life of the patient considerably.

Anyway, my surgery took quite a bit longer than expected because of this alien thingy we never knew existed as it never showed up on any ultrasound. After surgery I saw pictures of this thing and let me tell ya, I am glad it is gone. Gross, gross, gross.

So, during the four hour surgery…doc took out my uterus, cervix, fallopian tubes and the alien. Ovaries were left intact and the cysts were deemed benign. I have tons of cauterizations and stitches inside. I had five outer incisions – one inside my belly button, two to the right and two to the left (which were all about one inch long and closed with dissoluble stitches).

Before I knew it, I was being wheeled to my room. I had been in recovery for a while, but I don’t remember a thing. God I hope I didn’t say a bunch of stupid shit. But I am pretty sure I probably did. Hell, I do when I am lucid!

One more interesting tidbit some people do not know…during laproscopic/robotic abdominal surgeries, the surgeon fills your belly with carbon dioxide to make room for all of the instruments and for better visuals. One of the biggest complaints following this procedure are the gas pains that can travel throughout the body post-op. I have heard this can be far more painful than the surgicalpain itself. Thankfully, my doc is super great at getting rid of as much of the gas as possible before closing and I did not experience this very much at all. If you do have this problem, peppermint tea, moist heating pads and walking as much as possible will help greatly.

Okay. That is enough nastiness for today. Stay tuned for more gynecological and medical adventures coming soon when Heather talks about her way-too-fucking-long recovery, exciting complications and narcotic pleasantries.

Poop and Maui: It’s Time for Surgery

Standard

What you don’t want to hear the morning of the day you need to do a bowel cleanse?

“Don’t flush the toilets! The sewer is backed up!!”

You have GOT to be fucking kidding me.

Every couple of years we have this issue because there are tree roots that block our pipes. Bad timing, Plumbing Gods! Bad flippin’ timing. Thank goodness my husband was able to rooter, router, roater or whatever the hell out of that drain and it was fixed that night. Whew.

The night before surgery I had to drink 20 oz of Magnesium Citrate for some spring cleanin’. They need to make sure your bowels are clean so that there is less chance of complication. I mixed this stuff with ginger ale to help get it down, but it was pretty nasty. I felt nauseated much of the day. However, it was also helping keep me calm. Magnesium has a very calming and sleep inducing effect – so I did sleep pretty well that night – very surprisingly and thankfully.

My mother came early that morning as she was going to wait with Charlie at the hospital during my surgery. Cassidy was sent to school and as soon as she left, the water works started. I couldn’t help but to think, “What if I never see her again??” That truly may have been the most difficult part.

My surgery was not until 1:30 so I didn’t need to be there until 11:30. It sucked that I had so much time to wait and worry but it was good to not be rushed.

I curled my hair – knowing there wouldn’t be much stylin’ going on for quite some time after. I couldn’t wear make-up and was pretty certain I would horrify those who had to look at my unmasked face. I packed my bag (nightgown, gas x, daily vitamins, phone charger, brush, etc..), shaved my legs and kissed my kitties about 800 times. And then we were off.

We were in the waiting room for at least 30 minutes. My emotions were whacked. I would go from calm to funny to bawling (which, according to my mother, made my face look really ugly. Thanks, ma. Really.). She gave me a hard time about crying. She isn’t one to show emotion and I am the opposite. Charlie told her to leave me alone and let me cry. But they both snickered at me. Turds.

At one point there was a new lil baby a couple of feet away and I broke down. I hadn’t given much thought to the fact that I was losing my reproductive organs. And I am not quite certain I have yet to really process that. I do know that it makes me sad when I see babies. But it did before this as well. Charlie had a vasectomy about a year ago and we certainly weren’t planning on having any more children. But I always wished we had. I simply started too late.

Finally we were invited back to a private room. I changed into a lovely gown that had tubes attached for blowing warm air. How awesome is that?! I really need one for home. They put on my compression stockings and these boots that inflate and deflate over and over – these protect against clots by keeping the blood flowing throughout the legs. All of it was actually quite comfortable.

We watched TV in between talking to various nurses, lab techs, CNAs, doctors and administrative workers. They asked many questions over and over. They took blood, gave me IVs and best of all – distracted me. They were all so friendly and compassionate. My fear was evident but my humor was still well intact. Conversations and joking around with the staff really helped a lot.

One of the people who came to ask questions was an Nurse Anesthetist. He was a young man and quite cute. I would have sworn he was about 12. Great. Not only is my surgeon young and good looking but now there was going to be yet another young cutie who had to see my flabby belly, gross uterus and saggy tits. He was so sweet and kind though.

At one point my room filled with many different people. My surgeon/gyno came in and told me not to escape through the emergency exit right outside of my curtain. The anesthesiologist and his RN came in to ask questions and give me meds for nausea and relaxation. I love Versed. A lot. I want that for home too.

It was suddenly clear that this shit was going down and going down soon. How was it 1:30 already??? Wait!!! I want to think about this a little longer!!! Nope, sorry sister.

Versed typically knocks people out or keeps them so high in the clouds they don’t remember much after or have much of a care of what’s happening. As much as I love that drug, it doesn’t do that for me. I was completely aware and remember every second. Yea, I was a little goofy. But I was still nervous and scared.

I kissed my husband and mom and said my goodbyes as they wheeled me to the operating room. My gurney was surrounded by at least 6-8 people.

“Did everyone have lunch?” I asked loudly, “Did you all get a good night’s sleep?”

Laughing, “Yes, we all feel great.”

“You know, a lot of people start to feel slumped by this time of day. You can take a break first if you want.”

Answering, “We’re fine. Promise.”

We got to the room and it was huge and bright and cold. And then I saw the robot!! It looked nothing like CP30. It looked like some huge mechanical spider. Everyone was doing their individual job. One of the nurses introduced everyone in the room. She then leaned over to my ear and said she had this surgery and was very happy with the results. She said I would not regret it. Even if it were a lie, I didn’t care. It was thoughtful and helped me.

They then began trying to put an oxygen mask on me. “This is just oxygen.” But I would interrupt because I didn’t believe them. I knew once that mask was on, I was a going to be far, far away.

“Wait!! I have something profound to say!!” Okay, clearly the versed was indeed kicking in.

They waited for my profound words.

“Wait!! I know I have something to say!!”

This went on for a moment.

Then I saw those 12-year-old brown eyes belonging to that cute Nurse Anesthetist upside and above my face and in a sweet voice I hear him say, “Think about Maui….”

And I was out.

 

(coming soon…waking up, recovery, pre-op worries and more…)

A Pissed Off Liver and Other Sexy Topics

Standard

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.

From the National Institute of Health 

From the Physician’s Desk Reference

Journal of Medical Case Reports

MedScape

Countless Reports from Other Patients on AskaPatient.com 

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…

A Journey…In My Words

Standard

Listen. I have had this blog since 2005. I write about many things. And a large portion of what I write is a personal diary. I suppose I have fallen into this narcissistic social phenomena. But this outlet has offered me much release. It has been extremely cathartic. And believe it or not – I get messages from people all of the time thanking me. People in similar situations have been made to feel not as alone in their own struggles. Those reasons alone make it all worth it to me. And if anyone takes issue with that (as I know some may question my motives for posting such things or whether I should share personal stories at all) – they don’t have to read it.

I am not one of those people who cover my Facebook page with only successes and self-congratulatory pats on the back. I am not made of sunshine and rainbows. And I refuse to pretend to be anything other that exactly what I am. You think it is new to me to have people turned off by this? You think that after everything I have been through in life – some of which I have never breathed a word – puts me in a place of making this a top concern? I am me. This is how I express myself. There are those whom respect me for it and there are those who think they are better than me because of it or those who simply do not approve. Fuck it. I really cannot care anymore.

In the next few weeks, I will be writing about my recent hysterectomy surgery, my recovery and complications. I will be writing about it because as I have been through this journey, reading the stories of others have helped me tremendously. I will be writing about it because that is what I do. I am not seeking sympathy to any degree. Every person out there has been through something scary, life-changing, difficult, etc. I compare myself to no one and deserve no tighter hugs than anyone else.

However, I do feel there is a great misunderstanding and underestimation about this procedure. Before going through it myself, I would have never imagined the seriousness of this major surgery. Hysterectomies are one of the most preformed procedures in our country. Because of this, many people feel it is no big deal. Especially when they can sometimes be done without a 12 inch incision dissecting one’s midsection. But just because the scars on the outside seem insignificant – the work on the inside is just as traumatic. Perhaps I can help bring some realization to some misbeliefs.

I had my surgery a little over 6 weeks ago. The struggle has been more difficult and much different from what I expected – both physically and emotionally. That being said, it could have been much worse. While the surgeon did a great job and the staff at the hospital went way above my expectations of care and I have had wonderful support from a few great people – I have not been without road-bumps.

Almost right after surgery, I was having difficulty taking a deep breath. A few times I woke up gasping as I would imagine a person with sleep apnea experiencing. I reached out to a couple of people who all assured me I was fine and that my fears of blood clots were most likely inducing a panic reaction. This has happened before, so that was a reasonable assumption. But I still felt something wasn’t right. This was only the first sign to what ended up being a very bad drug reaction to an antibiotic – something I never considered. I am very lucky it did not cause more trouble than it did. I am still feeling some of the effects, but they are improving and the damage it did to my liver is now repairing. Many people who have had similar reactions have ended up with permanent lung, nerve or liver disease.

This is just one of the things I will share in detail about this surgical experience in the upcoming weeks. From pre-op fears to being wheeled into the OR to my recovery to the wonderful people who have helped me through everything – I will write about this, hopefully, in a way that can help others in one aspect or another. Going through this has truly opened my eyes in some really unexpected ways and in many different capacities. Perhaps others will relate.

For now, I can tell you that I am healing and doing the very best that I can. I still go through moments of pain and fear. But it gets better each week. And I hope to soon be back on my dreadmill, back to writing regularly and back to searching for that life I truly want to live. I look forward to being introduced to the new me – a healthier me.

Thank you for listening.

Freaking the Hell Out

Standard

I am 10 days away from surgery. This sucks balls. Actually, I wish I HAD balls because none of this would be happening at all. Men have it so easy, I swear. I protest the inequality of gender based body parts!!! I’ll start workin’ on a chant…

My uterus is being evicted and hopefully it will not steal valuable piping on its way out. Uterus and cervix are both going. Leaving ovaries but cysts on them may be removed. We know that I have one intramural golf ball sized fibroid, adenomyosis and ovarian cysts. Often times they find more once in there because the ultrasound can only see so much. So, if there are no other issues and everything goes smoothly, the surgery should take about 2 hours using the DaVinci Robotic method.

The Dr. (the gyno I have had for over a decade) who was to perform my surgery sadly broke his leg and will be out of work for a few months. Because of this, I had to reschedule with the one other Dr. at that hospital who does the DaVinci. I was very freaked out and worried about this. I even took it as a sign that I was not supposed to have this procedure. But I met with the new Dr. and was impressed with the time he spent with me, his patience (let’s face it…I can be quite annoying) and his confidence. I think he may be my first Dr. who is younger than me. That does not thrill me – but purely for vanity reasons.

If you know me, you know I sometimes have a tendency to obsess and panic. Well, my brain has definitely decided to focus on a particular fear and, like a rabid pit bull, will not let go for anything. DVTs/Blood Clots/Pulmonary Embolism. Yep. My brain will not stop worrying about this possibly complication. This is a possibility with any surgery, but more so with abdominal surgery. And I am freaking the fuck out. Dying and leaving Cassidy behind is unfathomable to me. Can’t have it. And every single day – at LEAST once – I think about cancelling. To me, being miserable some times is far better than being dead. But I guess that is a silly way to look at it. At least, that is what they are telling me.

I have always had this fear, but now that I am actually facing the possibility of having it happen – my phobia is through the roof. And what sucks, it really isn’t all that uncommon of a complication. In fact, many surgeons around the country and in other countries give prophylactic  blood thinners to prevent them. Some Drs do and some don’t. Mine do not. It seems as though it is controversial and the medical community doesn’t fully agree on the most appropriate procedures. Some surgeons are more worried about bleeding and others, clots. Personally, having read so many stories, it seems that bleeding complications are far less fatal than pulmonary embolisms. I guess I would rather risk a bleed. So yea. I need to let go of this really soon because it is driving me bonkers.

I have been listening to some pre-surgery guided meditations and it does help. Also just trying to relax as much as possible. This is definitely one of the hardest things I have ever gone through. I have thought and it has been mentioned to me that seeking out spiritual advice may help with my fears – especially about dying. Because I waste far too much time worrying about being dead to actually enjoy living. This needs to change. STAT. I am going to talk to a few people from different spiritual backgrounds and hopefully this may help.

My wonderful MOFO lady friends had a lovely dinner party for me last weekend. It was so nice – soups, salads, bread, wine, deserts and a lot of great support. I am so lucky to have a group of women like them in my life. My husband and mom have also been helpful and will be taking care of me post-op. They are both kind of on the…ummm…less emotional side. So I do hope they can be supportive when I need it most and when I may be difficult to deal with.

It has been a little surprising who has been outwardly supportive (is inwardly supportive even a thing?) and who has not. I am not bothered by it. Some people just aren’t like that. But even the smallest shreds of compassion or warmheartedness have and will mean so much to me for a very long time – likely forever. You just don’t forget shit like that.

Well, that is enough blabbering on and on about shit no one cares about for now. I will talk at ya later.

Lady Parts Go Bye Bye ***TMI and More TMI…Fair Warning***

Standard

What I write below is very personal. Many will also consider it graphic or gross. I am not writing this for entertainment purposes. I am writing this for those who are out there and in the same boat as me…to know they are not alone. I am also writing this for my own cathartic reasons. It helps. And I hope that maybe it will help someone else too.

It has been almost a month since I last spoke about my glorious gynecological issues. As I explained at that time, it looks as though a hysterectomy is in my future. My symptoms are getting worse and I felt so awful last week that I made an urgent visit to my original OB/GYN here in Racine. As soon as he walked through the door, the tears began to stream. Partially because of how awful I felt, partially because of my fear and partially because I felt guilty for going to another Dr. in the past months.

I have been with this Doc for over a decade. He helped me through a cancer scare and some in office and out-patient procedures. He delivered my daughter 9 1/2 years ago. And he has always been very good to me. I decided in that moment that it was indeed time to have this surgery and that it should be preformed by my long-time doc.

When having a hysterectomy there are many options to consider:

Do you keep your cervix? Do you keep your ovaries? If you do not keep your ovaries, will you use hormone replacement therapy? How much recovery time? Possible complications? Hospital stay? Medications? Anesthesia? Surgery duration? Cancer possibilities and pathology? These are just a few.

For me, I will not be keeping my cervix due to past cancer scares – why take the risk of having to have another surgery later. It’s basically just a cancer catcher at this point. And taking it actually makes the surgery easier from what I have read.

I will be keeping my ovaries because the hormones and blood flow provided by the ovaries are very beneficial to a woman’s health. Not to mention, the thought of going into menopause at 39 sounds pretty miserable and depressing. I do have ovarian cysts and since my grandmother had ovarian cancer – I need to be careful. So he will take a good look and biopsy if needed. Because I am keeping my ovaries, some symptoms will likely remain after surgery.

Recovery time really depends on the particular surgery, patient and the extent of the problems in dat der plumbin’. Hopefully, my issues are not extensive. They usually do not know what they are getting into until they get in there for a look. The amount of fibroids, cysts, adenomyosis, endometriosis, the size of the uterus (the more disease, usually the larger the uterus), possible adhesions to other organs, etc…can all play a role in recovery, surgery time, type of surgery, hospital stay and possible complications. There is so much uncertainty when going into a procedure like this. I really won’t know much until I wake up. Scary.

What is expected for me:

Thursday March 20th. I will go in at 11am. Surgery is scheduled for 1pm. I will be put under general anesthesia and intubated. I will be placed onto a table that inverts me backwards so that my feet are higher than my head (this is going to be WONDERFUL for my back and neck issues…sarcasm). I will then be pumped up with carbon dioxide so that there is room to see everything and for the mechanical instruments to move freely. As long as it is an easy enough case – the plan is to use DaVinci Robotic Surgery (you can actually watch video of the DaVinci surgery HERE from the internal doctor’s eye view – if you are not too squeamish). There will be 3-5 incisions. He expects the surgery will be around 2 hours. You can kinda see the set up below. The surgeon is the one at the video game looking console.

After surgery I will go to a recovery area while I wake up. If everything goes well, I will be transferred to a hospital room for an overnight stay. If anything is iffy, I will stay longer. I will be given pain medication and they will probably try to get me drinking and walking that same day. This helps encourage the organs to wake up, helps get rid of some of the gas they pump into ya and also helps protect against blood clots. Chances are, I will be released the next day.

I will have my comfy area all set up and waiting for me at home. I am going to prepare as much as possible. I already ordered some nice new sheets, soft jammies, a robe and comfy undies. I have a whole list of supplies yet to purchase. But I will have everything ready because aside from a little walking every couple of hours – I will not be able to do anything anywhere from a couple of days to a few weeks. Like I said, everyone is different. I will not be able to lift over 5 lbs or drive for 2 weeks, I believe. And bending to do anything will take quite some time. I have known people who feel great after a week and others who still feel crappy after 2 months.  One thing I hear from just about everyone is that the fatigue is just insane. Just have to wait and see. Sucks. Thank God my husband and mom will be here to help a lot of the time.

Apparently, some of the worst pain is the gas they pump into you. I guess it goes into your legs and up to your shoulders and causes a great deal of pain. I will be taking meds to help with this but I guess it really hurts – sometimes even more than the surgery itself. This is a worry of mine because my biggest fear in all of this is developing a blood clot – abdominal surgeries carry a higher risk for this. Dying of a pulmonary embolism has been a fear of mine for many, many years. I have never had a real reason to worry until now. From what I hear, the pain from this gas feels very similar to symptoms of a PE. Knowing me…I will likely be a panicky mess. So, yes. As stupid as it sounds…I am very worried about my having to worry.

There are many possible complications with hysterectomies:

General anaesthetic

It is very rare for serious complications to occur after having a general anaesthetic  (1 in 10,000 anaesthetics given).

Serious complications can include nerve damage, an allergic reaction and death (death is very rare; there is a 1 in 100,000 chance of dying after having a general anaesthetic).

Being fit and healthy before you have an operation reduces your risk of developing complications.

Bleeding

As with all major operations, there is a small risk of heavy bleeding (haemorrhage) after having a hysterectomy.

If you have a haemorrhage, you may need a blood transfusion (where you receive blood from a donor).

Bladder or bowel damage

In rare cases, damage to abdominal organs, such as the bladder or bowel, can occur. This can cause problems, such as infection, incontinence or a frequent need to urinate.

It may be possible to repair any damage during the hysterectomy. You may need a temporary catheter to drain your urine, or a colostomy to collect your bowel movements.

(my own mother actually lost a kidney this way…they nicked it during her hysterectomy about 25 years ago and it died. she didn’t know until many, many years later when she received a CAT scan for back pain. she had to have it removed and that was a rough surgery. but she is very lucky she never became septic with a dead kidney inside for 20 or so years.)

Infection

There is always a risk that an infection will develop after an operation. This could be a urinary tract infection, a chest infection or a vaginal infection. These aren’t usually serious and can be treated with antibiotics.

Thrombosis

A thrombosis is a blood clot that forms in a vein and interferes with blood circulation and the flow of oxygen around the body. The risk of developing blood clots increases after having operations and periods of immobility.

You will be encouraged to start moving around as soon as possible after your operation. You may also be given a blood-thinning medication, such as warfarin, to reduce the risk of clots.

Vaginal problems

If you have a vaginal hysterectomy there is a risk that you will have problems at the top of your vagina where the cervix was removed. This could range from slow wound healing after the operation to prolapse in later years.

Ovary failure

Even if one or both of your ovaries are left intact, they could fail within five years of having your hysterectomy. This is because your ovaries receive some of their blood supply through the womb, which is removed during the operation.

Early menopause

If you have had your ovaries removed, it’s likely that you’ll have menopausal symptoms, such as hot flushes, sweating, vaginal dryness and disturbed sleep, soon after your operation.

This is because the menopause is triggered once you stop producing eggs from your ovaries (ovulating).

This is an important consideration if you’re under the age of 40 because early onset of the menopause can increase your risk of developing brittle bones (osteoporosis). This is because the level of the hormone, oestrogen, decreases during the menopause.

 

Needless to say, all of this info is a lot of digest and deal with and is causing me great anxiety. But with the help of family, friends, a therapist and medication I may just get through this without canceling the whole thing. I am not gonna lie. I have had a couple of panic attacks and have been having some obsessive worry about the whole blood clot thing. But I am really trying to be as positive as I can to get me through this next month.

Leaving Cassidy is an impossible thought for me. I cannot bear it. So I absolutely HAVE to make myself believe that I will be okay. I have my moments where I think that laying in bed sick and miserable for a few more years would be better than the risk of death. But really, what kind of mom would that make me? Not a great one. And we never really know how long we have…I am almost 40 already! I want to live life. And I haven’t done a really terrific job of that. Especially lately. The list of pros and cons is indeed very difficult to reconcile. But I think this is the right thing to do.

So, that is what I have for now. I am scared shitless. And I really hope I can calm down soon.

Stupid Uterus

Standard

I haven’t written in quite a while and a big part of that is because I have been feeling like absolute shit. I’ve been kind of embarrassed to talk about it publicly. But I have realized that is stupid. So, here goes.

For years now, I have been having extremely heavy periods. Heavy to the point where I really cannot leave my house for up to 3 days per month. Even an hour would be too long. It can be difficult to explain why you can’t make it to an event or an appointment. Luckily (sorta), I am not working because I have no idea how that would even happen. Everything has to be planned just right and even that doesn’t really work when my cycle starts to have a mind of its own.

I was diagnosed with a uterine fibroid that continues to grow. I also have ovarian cysts that can sometimes cause pain. Because of the placement and size of the fibroid, it pushes on my bladder making me feel like I have to pee like all of the time.

It has recently been discovered that this bleeding is making me anemic. I didn’t realize it but I have been having symptoms of anemia for quite a long time. I have felt like shit for so long and have never been able to figure out why. My numbers aren’t super low, but apparently my body is extremely sensitive and reacts to the low iron more than I guess it would for others.

I have been exhausted for years. And I have been searching and searching for a reason – but according to docs, all tests are fairly normal. The fatigue has been increasing and as of this past week, I can barely get out of bed. I have also been having horrible headaches for years. I did find out I also have TMJ so that could be the reason, but who knows. In the past year or two I have lost almost all tolerance for alcohol. I get dizzy and nauseated for no apparent reason. And have had heart arrhythmias for years which could also be cause (or exasperated) by anemia. In the past month, a few new symptoms have popped up – itchy skin, freezing cold yet sweaty palms and feet and I have been eating crushed ice by the cupfuls. It’s been very scary and because of that  my anxiety has gone through the roof.

It was suggested a couple years ago by my Gyno that I have a hysterectomy. If you know me at all, you know how afraid I am of any medical procedures – let alone a major surgery. I just decided to live with it until I had no choice. Well, I think my body is finally telling me that I no longer have a choice – at least not a good one.

I got a second opinion from a doctor who works at a facility where I would want to have my surgery. He said hysterectomy or just keep an eye on it with ultrasounds every 6 months. I am not a candidate for alternative treatments. I mean, I could try some – but they likely wouldn’t work and could make things worse. He left it up to me. After this past horrid week, I made an appointment to discuss surgery options and dates.

There are many different types of hysterectomies and I have no idea what he will suggest for me. I DO plan on keeping my ovaries. And I hope to high heaven that I will be able to do so because the thought of taking hormones scares the crap out of me. But I do not know if I will have to be cut open abominably or be able to have it laproscopically or robotically.

For some people, recovery takes a couple weeks. For others it can be a couple months. For some people, pain is minimal and for others, excruciating. Some people have a hospital stay, others go home. And many times, the surgery plan will change dramatically once you are already asleep.

The fear and anxiety I am going through is awful. I am absolutely petrified. My friend, Glenda, told me to write a list of all of my fears so that we can get questions answered and find ways to cross these fears off the list and go into this without so much trepidation. This is my list so far:

  • Dying during surgery – not waking up: General anesthetic is one of the scariest things in the world, closest thing to being dead
  • Dying from complications after surgery: Biggest fear here is blood clots (pulmonary embolism/DVT) or internal bleeding
  • Scary complications during or after surgery: Same as above even if I do not die from them
  • Pain I cannot handle: I have read that some people wake up bawling from so much pain
  • Losing too much blood: This happened when I gave birth and it was a horrible feeling and very scary
  • Having to take hormones: Increased risk of strokes, blood clots, heart attacks – no thanks!!
  • Anxiety about possible bad things happening after surgery (like waiting for a ball to drop): Not being able to handle the anxiety, ugh
  • Not having the help I need after surgery: My mom still works full time and lives an hour away. And I hate asking for help.
  • Bladder/Bowel prolapse: Very possible and does happen…gross
  • Cancer found during surgery: Again, very possible. What if THIS is the reason I have been feeling so awful for so long. Grandmother died from ovarian/uterine cancer in her late 50s.
  • Gain weight: Have heard this is common.
  • Loss of sex drive: I mean, come on. That would suck.
  • Not feeling any better after recovery: The thought that I could go through all of this just to continue to feel poorly…fuck.

Not all of the stories I hear are awful. I do have friends who have gone through this with minimal hardships. Everyone whom I have spoken with is encouraging me to do this. Even my mother (who had her kidney destroyed during her hysterectomy) is begging me to do it.

I have to learn how to manage these fears and just get this done. I cannot go on this way anymore. I just can’t.