Sunday, July 19, 2009

Things your doctor may not tell you,part 1

Here are my memories of pre- and post- op PAO surgery. I hope these details will be helpful to others undergoing PAO. Note that your experience is likely to be very different from mine. The more blogs you read, the more you will realize that each person is different and recovery rates/pain levels will vary. The point is not to compare yourself to anyone else. However, reading about other people's experiences can help prepare you for some of the things you will encounter during your surgery and recovery.

This was pre-op day. I signed a lot of papers, provided my Advance Directive, answered the same medical questions multiple times, and MADE SURE the hospital knew I'd donated my own blood. I mentioned it at every opportunity and made sure everyone wrote it in my chart! After the difficulty I had donating blood, I was adamant that I'd be getting it back. Hip Chick Tip: Make sure the hospital knows if you have made an autologous blood donation, and check the bags of blood to make sure they are yours before you are transfused. You can insist they show you the bags of blood, or have a friend or family member on hand if you are too weak or incapacitated.

I met with an anesthesiologist (not mine, it turned out), who answered questions, and my surgeon and his PA, who explained all of the risks to me and also answered last-minute questions. They did a mini-physical exam on me and they wanted to take blood, but I got so distressed about this that they told me they could take it out of the IV line on surgery day so they'd only have to poke me once.

We checked into the hotel. Hip chick tip: If you are going out of town for surgery, ask your hospital if they have negotiated special rates with local hotels for you or your family. I ate a light dinner and tried to go to sleep early, since my alarm was set for 4 AM. I am not a morning person, but I was required to get to the hospital by 5:30 for my 8 AM surgery. The night before and morning of surgery I was required to shower and scrub myself with special antiseptic scrubbing pads. You won't get another real shower for a long time, so take advantage of this! I felt very clean as I got into bed, and I slept on and off throughout the night.

The hospital provided free/valet parking, although they weren't running the valet at 5:20 when we showed up. I couldn't eat or drink anything from midnight on, but I can tell you I wasn't hungry. I didn't take my cane with me since I am perfectly capable of walking a short distance without it and I knew I wouldn't need it coming out. I didn't realize I'd have to walk from the check in area to the pre-op area through a maze of corridors and elevators, following the check-in lady and 5 other pre-op patients and their families, all of whom were more mobile than I was. They were walking way too fast for me and had we gotten any further behind we would have been lost in the maze forever. But, as luck would have it, we finally arrived at the pre-op area.

I was pretty shaky by then; not woozy or tired, but the kind of shaky you get when you have stage fright. They call this a "fight or flight" response, and if I could have, I would have run away. Instead, I went into the little curtained room reserved for me and changed into my lovely oversized tie-in-the-back hospital gown sans underwear. I had to run out to pee a couple of times and, being new to this whole scene, I wasn't ready to moon everyone yet. Hip Chick anti-mooning Tip: The gowns tie in the back. Hold the ties/opening to the side of your body with your hand and it's easier to keep the gown closed. (Note - after you've had your surgery you will no longer give a shit who sees your private parts.)

I lay on my bed in pre-op and the pre-op nurses worked their magic - asking me medical questions I'd answered before, listening to me tell them I'd donated my own blood, giving me three hospital bracelets (one showing my allergy to Amoxicillin, the other an ID bracelet, and the third containing numbered tags that would later be used to label things given to me or taken from me,such as blood samples). I was very nervous about the IV insertion, based on my very very bad vein history. I had Perry there holding my hand, and he distracted me by asking me a question about our bathroom remodel. It was a good ploy, because there was nothing I cared less about at that point than where the light fixture should be hung. Thanks to this distraction, they were able to numb my hand and find a vein with very little pain. I listened to my Ipod to pass the time and distract me further. They allowed my husband to stay with me until they wheeled me to the operating room. Hip Chick Tip: Music is great therapy. Some surgeons will allow you to listen to your Ipod during surgery. No, you won't be awake enough to hear it or remember, but some researchers say that it might still be soothing to your unconscious mind. I had Perry take it at the last minute, but it was great to calm me down beforehand. I'd even made a special "relaxation playlist" for this purpose.

I asked my pre-op nurse who the anesthesiologist was, wondering if it would be the nice person I had spoken to the day before. She looked in the computer and paused before saying that "Dr. S is very thorough but a bit ... abrasive. He doesn't have a very good bedside manner; he'll never smile, but he is an excellent anesthesiologist and will take good care of you." Great, I thought, this is my first surgery. Why can't I get somebody nice?

Dr. S. showed up and I heard him talking to the nurse outside my curtained room as he reviewed my chart. "She's 46?" he asked the nurse in surprise. They don't see many PAO patients my age; most are teens or in their 20s, so I am highly unusual. Dr. S came in to introduce himself and was wearing a jacket and lanyard which indicated he might be a fan of a certain university football team. I greeted him with, "You must be a Cougars fan!" and we were instantly friends. He smiled, and I found that he had a very dry sense of humor. I told him that I was anxious and not really into pain and he said he'd take care of that soon. I finally relaxed ... I was in good hands. Hip Chick Tip: Doctors are people too. Don't be scared of your doctor. Ask questions until you get answers you understand. Try to engage your doctor if his/her bedside manner isn't the greatest. Sometimes it works, sometimes it doesn't, but it's worth a try.

Finally, the time came for me to be wheeled into the OR. I kissed Perry good-bye and down the hallway I went, feet first, with Dr. S by my side. Technicians were still setting up equipment in the room, and I was introduced. They transferred me to the operating table. I was given something to make me relax somewhere along the way; I'm not sure when they did it but I didn't feel too nervous at that point. Dr. S had me curl into a fetal position on my side so he could place the epidural. There was some problem with the equipment and he was upset about it; he spoke rather sharply to the nurse and technician. Eventually it was fixed. I don't remember the epidural insertion being painful, but I was worried about equipment problems this early in the game! Not long after, Dr. S said, "We're going to put you to sleep now." That is the last thing I remember until I woke up in recovery.

My operation lasted 6 hours. I woke up in recovery and felt ... fine. No nausea. No pain. Nobody was there when I first opened my eyes, and I remember wondering, hey, did they really do the surgery? Is it over? I feel way too good to be coming out of surgery! But indeed, that was the case. The recovery room was large and bright, with about 6 people in beds just like mine. I was next to a huge window. There on the roof of the building next door was -- a construction worker. Looking right at me, it seemed. A nurse saw that my eyes were open and came to check on me. My first words were, "is that a construction worker?" and "is my surgery over?" Yes and yes.

My mouth was dry but otherwise I felt very relaxed with no pain or nausea. They fed me ice chips and gave me sips of water. I kept wondering when they were going to take me to my room. There was a clock on the wall, and I kept dozing off and then waking up to see that time had crawled by -- 10 minutes here, 15 minutes there -- until two hours had passed. During this time I discovered that my left leg (the non-operated leg) was more numb than my right leg. Yay. This happens sometimes since epidurals can be unpredictable. It meant that I would not be able to get up and walk as quickly because my good leg would not move or bear weight well. Sometimes the epidural does not numb the operated leg at all, and other pain mitigation methods have to be started immediately. In my case, my operated leg was only numb from just below the waist to about 6 inches below the incision, which was enough to keep me out of pain. My non-operated leg was numb from the waist to just below the knee!

They finally took me out of recovery. Perry met me as they were wheeling me in to my room. I had a private room with a nice view of Puget Sound (I couldn't see it from my bed without sitting all the way up and turning around, but my guests could see it). Coming out of surgery I was hooked up to an epidural, a foley (urinary) catheter, a suction drain, an IV, and a machine hooked up to booties on my feet that inflated and deflated every 20 seconds to keep the blood flowing in my legs to prevent clots. I also wore lovely TED compression stockings which, while unfashionable, were not uncomfortable and reached to my knees. I was pretty sweaty and probably didn't smell great, and my naturally curly hair was a big rat's nest. Thankfully no pictures exist of this event.

The rest of the day consisted of getting used to my new surroundings. I was always assigned to a nurse (RN) and assistant (CNA or LPN). Thankfully they wrote their names on a white board at the beginning of their shifts because I am not good with names. Some of them only took care of me once, and others I saw multiple times during my stay. Most were kind, caring and competent. Some, I'm sorry to say, were not. Three in particular were so bad that when I go back to get my left PAO, I will specifically ask that they not be assigned to me. Not sure if that is possible, but I am going to ask so their supervisors know that I won't tolerate any bullshit. More on that later.

I was thirsty and my lips were chapped. My stuff was still in the car so they provided me lip balm (do take your own, theirs was yucky but better than nothing). I drank a bunch of water and juice. At 6 PM they brought me dinner and it was ... Meat! Slices of some sort of meat. I am a vegetarian and had told them that at check-in. I asked for something else but should have asked what my options were but was a bit out of it so I just asked for something "vegetarian." They brought me pasta soaked in spicy red marinara sauce and a salad and dinner roll. I wasn't nauseous, but I didn't want the first thing to hit my stomach post surgery to be spicy, and it didn't look appetizing. Had I known better, I would have asked for plain pasta. I picked at the salad and ate the dinner roll, but that was all I ate. I figured I would make up for it tomorrow.

The nurse explained that they would take my vitals - temperature, blood pressure, oxygen level, and pain level - every hour. They showed me my call button. They gave me an ice pack for my hip. All was well.

I was getting tired. Perry brought my stuff in from the car, including my beloved pillow from home. He was also exhausted and I told him to go get dinner and sleep at the hotel. He needed a good night's sleep and I was feeling fine - no itching, no pain, no nausea - so I saw no reason for him to stay.

Right after he left, three nurses came in to my room. They told me they had to move me to a different bed because the bed I was in didn't have a trapeze and wasn't suitable for the CPM machine I would need. Then they started talking among themselves about the best way to move me. Right in front of me, as if I couldn't hear, they admitted to each other they had no idea how they should do that. One came up with the idea to put the beds side by side and pick me up in my sheets and swing me from one to the other. Visions of them dropping me between the two beds flashed through my head. "Wait a minute," I said, and they all looked at me as if they were surprised that I could talk. "If you don't know the correct way to move me, I am not going to let you move me. Please go get someone who knows how to move me." One of them looked at me with a disgusted look on her face. More about her later. The other two I never saw again during my stay. They finally went to get a supervisor, who, when they described how they intended to move me, told them that there was no way that would work. She went out of the room and got a board, which they rolled me onto, and they moved me that way. They weren't very gentle and yes, it hurt my hip.

OK, can you imagine what would have happened if I had been out of it on drugs, or hadn't spoken up? I wish that Perry had not left because had he been there he would have raised a huge ruckus. As it was, he didn't know about this until the next day because I wanted him to get some sleep and didn't want him to worry. This was my first night in the hospital and I realized then and there that not everyone gave a damn about me or had my best interests at heart. To some, I was just another body. For the most part, as I said, the nurses were kind, caring and competent. But BE FOREWARNED. Nobody takes your safety and health more seriously than you do. Always be ready to speak up, and if you can't speak up, have an advocate with you who will do so on your behalf. Don't just let people do things to you without explanation. Whenever they gave me medications, I asked what they were and what they were for. Whenever they changed my machinery, I asked specifically what they were doing. Whenever they forgot to do something (and even the best nurses will, whether it is forgetting to wash their hands before examining you or forgetting to put your squeezing booties back on before leaving the room), I reminded them. You won't get a lot of sleep in the hospital because it's noisy and they wake you up frequently for vitals. So you might as well be vigilant about your own care.

This wasn't the best way to start out. It was probably the worst thing that happened while I was in the hospital because I was scared they weren't going to listen to me and I would be injured in a fall. No, they didn't drop me, but they could have. Lesson learned.

They got the CPM machine hooked up to the bed (it seemed that just one person on the staff knew how to do this, and the whole time they were doing it, it seemed like they were about to push it in to me. I shielded my incision with my hand and moved as far away as I could, because the thing is heavy and has a metal bar on the side which, if it slipped, would have done a lot of damage.) Finally it was in place and my leg was in it. They started me at 30 degrees which felt fine. Some time during the night they increased it to 40.

I had a lot of energy and was coherent in my speech, which was shocking. Since I'd never had general anesthesia or strong pain drugs, I figured they'd knock me out and make me dopey. That never happened, and when I spoke to my parents on the phone that night they couldn't believe that I sounded like a real person. Night fell; I fell in and out of sleep, and as promised, was woken up every hour for vitals.

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