Emergency Surgery!

A few nights ago, one of my biggest fears came true: that I would have to have surgery. After I had my wisdom teeth pulled in '07 and fell sick with POTS, I hoped to never go through another surgery, especially not an emergency one! My stomach has been bothering me big time since a few weeks before Christmas but I figured it was just from finishing up a round of antibiotics for a sinus infection mid-December. The doctor agreed that the antibiotics had simply gotten rid of all the good bacteria in my gut and put me on prilosec and probiotics (neither of which seemed to help at all).

After about a month of eating mild foods and still feeling awful, Thursday morning it got to the point where I couldn't eat or drink anything so I went to Urgent Care where the doctor poked around my stomach and sent me to the hospital for a CT scan of my appendix. The ER doc however, was skeptical of my appendix and thought it might be my gallbladder instead so they did a bunch of bloodwork, an ultrasound of my insides, then an x-ray, and last but not least the CT scan which revealed the problem: my appendix was inflamed and had a stone called a fecolith inside of it.

This actually came as quite a surprise to me because after 7 hours of tests and no food and drink in the ER, a nurse, (the same nurse who told me I had anxiety this summer after my blood pressure was 190/130 from the birth control pill) came in and told me that all my tests looked great but my heart rate was a little high so the doctor would probably come in to talk to me about possible anxiety (she obviously doesn't have a clue about what dysautonomia is!) So boy was I surprised when the doctor came in ten minutes later and told me that he was very concerned about my CT scan and that they needed to operate on my appendix that night and the surgeon would be arriving shortly. My first question was, "Are you kidding? The nurse just told me it was just anxiety!" And then I promptly started crying like a baby and confessed that I was so afraid of surgery because I had been sick ever since having my wisdom teeth pulled.

They did a bit more bloodwork and then whisked me off to meet with my surgeon who seemed very caring and competent. He knew a bit about EDS and realized that he would have to take extra precautions and that the incisions might not heal as quickly as they would in a typical patient. He and the anesthesiologist also asked about my autonomic dysfunction before the procedure. The anesthesiologist joked that she was more nervous than I was so maybe she should knock herself out instead! When I woke up in the OR my abdomen ached a bit but it was my throat that was really burning from the breathing tube they had inserted during the surgery and I was coughing and coughing. Apparently the anesthesiologist didn't give me very much of the drug that dries up secretions because it would have also elevated my heart rate so I was left with a lot of extra phlegm. They gave me three shots of fentanyl before taking me up to my room. Once I got into my bed I felt a little better until I threw up clear liquid all over everyone and all over myself. But my stomach felt way better after that!

My nurses were all very nice and caring and the first nurse I had was especially nice. I received a ton of IV fluids before and after the procedure and a few shots of morphine which didn't help very much and made me feel terrible. The morphine made me hot all over and made my shoulders and joints ache so I didn't take any more of it. I had one vicodin after that and it made me sleepy but didn't take away the pain either. I slept less than an hour total in the hospital after my surgery because of the pain.

Since I've been home I've slept a total of twelve hours though! My body had to catch up on its sleep deficit I guess. I have taken two tylenol since I've been home and think I will be able to get by with the pain okay on just the tylenol. They joked around in the hospital that I must have a pretty high pain tolerance to put up with appendicitis for that long before coming in.

I counted up all the different drugs they gave me in the ER, OR and in my room and added up a total of 12 that I know of. I am a person who hardly takes any pills because I am either allergic to or sensitive to just about everything. Here is the list of things they gave me and their purposes:

-IV Saline for dehyration
-IV Potassium for low blood potassium levels
-IV Protronics for upset stomach
-Oral GI cocktail for upset stomach
-IV Contrast Dye to see appendix in CT Scan
-IV Flagyl antibiotic as a pre-surgery precaution
-IV Fentanyl for immediate post-surgery pain
-IV Morphine for pain during and after surgery
-IV Anxiety right before getting wheeled into OR
-IV drug to dry up secretions before surgery
-General Anesthesia
-Oral Vicodin for pain

So far that's all I am aware of them giving me. I may have received more drugs during surgery that I wasn't aware of but when I get my medical records back for this I will find out.

I am so glad to be back home again. They warned me that the recovery may be slow and painful and to try my best to keep hydrated and keep eating, breathe deep and walk around a little every now and then to keep from getting things like pneumonia during recovery.

They performed the surgery laproscopically so I have three small incisions in my abdomen and they did not use stitches or staples but rather dermabond glue and I am expected to heal normally. I had some bruising the second day but he said that was normal. My abdomen really only hurts badly if I move around or walk. I am supposed to hold a pillow against it for now.

I am really not thrilled that I had to have surgery but I am very lucky that it hadn't ruptured yet or things would be much worse right now. I am lucky that my surgical team was fairly competent and didn't dismiss my existing health issues, in fact they seemed to take them very seriously. I am lucky I had a support system there to help me through it and a nice team of nurses. And I am certainly glad I listened to my body and went to the doctor when I did! For over a month I tried to tough it out at home but doing that any longer would have been a big mistake!

As I go through the recovery process, I hope to get stronger and stronger. What are your experiences with surgery and recovery? How long did it take you to recover? If you have any tips or advice to share it would be much appreciated!

My Medical Records: Fact or Fiction?

As I have been proudly checking things off of my ever-expanding 'To Do' list, I thought I would share that I finally ordered and received my medical records (the vast majority of them anyway) from the past six years. After a cursory review of them it is abundantly clear exactly when I got sick as my heart rate went from 62 in the office a few months prior to getting sick with POTS to over 100 at nearly every subsequent appointment. I only had a few appointments during the two years before I got sick, one for a sinus infection and one for painful periods. Other than that, I was healthy as a horse. Then in September 2007 the doctors appointments, and hospital visits, came nearly on a weekly basis for several months. Each time I suffered tachycardia, palpitations, weakness and fatigue.

My hospital bloodwork revealed a low potassium level several times. The doctors and nurses informed me at the time while they forced me to consume a sickening concoction of concentrated liquid potassium drink to bring my level back up to normal. What they neglected to tell me during all these hospital visits was that I consistently had other 'high' and 'low' markers in my bloodwork that didn't fall within normal range. I was a bit shocked to discover this while leafing through my medical records. My mom would always remember to ask them in the hospital (in case I didn't remember to ask or couldn't) if all my bloodwork looked okay and was in the normal range. They would always reply, "yes, everything looks good." So much for trusting ER docs. As long as you're not about to immediately die, they send you on your way home with instructions to take it easy and follow up with your regular doctor. Lovely. At the time my regular doctor was a woman who only knew how to shove antidepressant samples down her patients' throats.

Another thing that interested me about my medical records: certain doctors would make snide remarks in their notes about my mother, my neighbor or my grandmother accompanying me to appointments, saying that they were very vocal, or answered too many questions on my behalf. These were the times I was so sick I could hardly walk into an appointment on my own or speak for myself. I was glad they were there to advocate for me and make things a bit easier on me. But according to my records a few of the doctors I saw seemed to mind. Their jobs are made much easier I'm sure when they don't have "difficult" relatives around to answer to. Some doctors can't stand to be inconvenienced, questioned or stood up to in any way. This is not true of all doctors, but a large chunk of them who believe they are superior to their patients and respective families simply because they are the one with the letters behind their name and some general experience (although just about every hospital doctor I've seen has lacked any specific experience in treating or even recognizing dysautonomia).

Enough of my rant for now, just thought I would stress the importance of obtaining and reviewing your own medical records to make sure you don't have other underlying conditions that may be contributing to or exacerbating your dysautonomia. Oh, by the way, I now apparently have "mild central airway disease" as indicated by a chest x-ray in 09 compared to the one I had done in 08 which was fine. Would have been nice if someone from the hospital had told me this back when I had the x-ray done. Not sure what the heck it is, if there's anything I can do about it, or if it even causes any symptoms. I am assuming it's not that big of a deal otherwise the ER doc would have told me about it, right? Not necessarily. If there's one thing I've learned by reviewing my medical history on paper it's that it's never safe to assume anything. It's best to have the proof right there in front of you on paper. A lot of doctors are too lax to care whether they tell you everything or not, many are too busy to give you the full story, and many are just human and make mistakes, forgetting to tell you something that might have been important. Make a habit of requesting your medical records after every important appointment now on. I'm going to make sure I do from now on.

Medical Anxiety

After my first trip to the ER in over two years this past Friday night, I am still reeling. I was reluctant to even go because I hate hospitals, needles, blood draws, and everything associated with anything medically related. But my blood pressure was high, ironically, hovering around 190 over 130 for about an hour before I decided it was time to succumb to the fact that I may need some professional help to get it under control. My blood pressure had never registered that high before and it didn't appear to be a fluke. I was weak, dizzy, nauseous and felt feverish. My mom drove me to our closest ER and there we sat for about an hour in the sweltering waiting room before being escorted into the ER where they had apparently just experienced what the male nurse formidably referred to as a "code." A code what? I wondered. My mind automatically jumped to the worst conclusion possible and assumed someone had just died there in the ER and that was surely the reason for the waiting room holdup.

The sickening smell of saline solution and rubbing alcohol filled the air of my room where a friendly nurse about my age promptly drew blood and started an IV. I am certain she sensed my anxiety right off the bat as I instructed her to please take as little blood as possible because I was already lightheaded. "You're going to be just fine, I promise." That was reassuring. Really it was. How often do we ever hear a doctor say anything like that with such certainty? She then did an ekg and said that it looked beautiful, and at 96 beats per minute it wasn't even tachycardic. That also helped me relax a bit. What didn't help me relax was the fact that I ended up laying there for a good six hours sweltering with no food or drink and a small cup of ice chips that I had spilled on the floor. My nurse was nice and did check in on me from time to time and once even came in to perform orthostatic blood pressure readings because I had mentioned POTS to her. They never did reveal the results or what they indicated but at least someone had sense enough to collect that kind of data.

I had a slight temperature at 99 point something, but nothing alarming. I was just flushed and felt overheated without sweating. I hate that feeling. Finally someone brought me a cool rag. At one point, the male nurse from earlier walked by and closed the door for "privacy issues." My mom said I must have been showing too much leg for his liking. That's what happens to overheated patients when left unattended. In the state I was in I lost all ability to reason or care about nuisances such as modesty. I was simply trying to keep myself cool. And at this point I was agitated and so famished from lack of food that I was about ready to murder the next nurse who told me not to eat anything until the doctor gave approval. Low blood sugar makes me do and say crazy things. The doctor who had come in at the beginning to examine me for all of about two minutes asking if I had consumed any caffeine that day was leisurely sitting in front of her computer down the hall enjoying a diet coke and a snack. Lucky her. I know this because I walked my weak self down the hall to beg for food and drink. Lo and behold the nurses instructed me I had to wait until I heard from the doctor and that it would just be a few more minutes.

Finally a nurse walks in, not to tell me I could eat, but to collect a urine sample that they had forgotten to collect in the beginning. To top it all off I had just emptied my bladder when I had gotten up to beg for food and water a few minutes before. So she hooked up another IV and let it run for a few minutes until I was ready to produce a sample. Finally, the night was nearly over. In walks a nurse with a cup of ice water for me to drink! I had never been so thankful in all my life! Then, my regular nurse walks in with yet another cup of ice water and 2 big and bitter pills to swallow called Cipro. In comes the doctor for a brief appearance to inform me they had found a probable urinary tract infection so it was the law that I had to take these pills before leaving the hospital. So two nurses, a doctor, my mom and my ex-boyfriend had all arrived and were all hovering about me in this tiny room waiting for me to swallow these damn pills. Talk about pressure. I wasn't convinced I had a UTI in the first place as I wasn't experiencing any symptoms. But I reluctantly swallowed the pills, breaking them up with my teeth first, making the doctor and nurses wait as long as possible for me to finish since I had waited so long for their company.

At last everyone else went out in the hall while my primary nurse unhooked me from everything and asked me how long I had been suffering from anxiety. I said that no one had ever diagnosed me with anxiety before but admitted that hospitals and medical stuff did tend to make me feel very anxious. Of course anxiety wasn't listed anywhere on any of my discharge papers, simply "probable UTI, tachycardia, and weakness" (they neglected to even address the weird high blood pressure issue). Although she herself was not a doctor and did not have the legal authority to diagnose, she revealed quite an astute observation, saying that I clearly exhibited symptoms of anxiety and she understood why: "all you did was go to the dentist to get your teeth out and ended up with a permanent health problem. I get it, believe me. I understand why you'd be anxious around doctors and places like this. You just can't let it define you though. Life's too short." This nurse was right. Life is too short to let one awful life-changing event define you. I was so many other things in my life before POTS, there was so much more to me than being sick. I hate being the sick girl and don't want to be thought of that way. So going to strive to get the old me back one small step at a time. My first goal: stay the heck out of the ER for as long as possible!