My arrival home from the hospital was a day of flurried activity and expectation. I hadn't seen my boys since the night before my surgery. After 3 and a half days in the hospital, I was done and wanted my own house, my own kitchen, and my own bed. Getting home went ok except that the ride home in the car was enough to exhaust me. Everybody was fetching and carrying and asking me if I was ok or if I needed anything. The attention was nice, but I was really looking forward to being home and trying to find a short-term routine that would leave me feeling more like a person and less like a patient.
Night fell and I was looking forward to being back in my own bed. When I announced that I'd like to go to bed, it set off a parade of people. Such a bedtime spectacle hasn't been seen since the court of Louis XIV. Both of my parents, my two oldest children, and my husband all jockied for position. I assured everybody that I'd be fine, but my father insisted on spotting me up the stairs. My husband turned the bed down and began arranging pillows. The kids carried up my iPad and iPhone. Somebody fetched a glass of water.
Eventually, I was able to lie down in a relaxing fog of pain medication and unwind enough that I thought I might sleep. It was very nice indeed to be back in my own bed. It may not fold into all sorts of positions, but the mattress didn't make a crinkly plastic noise and it didn't smell like hospital. And best of all, I knew that nobody was going to wake me up at 2:30 to take my vitals or stick me in the belly with blood thinning medication.
Sleep finally came followed by aching pain and a pressing need to go the bathroom. I opened my eyes. Oh, the irony. It was 2:30. Using my hands on my right leg, I was able to swing myself sideways to reach my crutches. Already this was feeling like a lot more work than I was up for. I took a deep breath and stood up. I was a little wobbly from sleep and medication. I took a minute to make sure I was going to be steady enough to walk. So far so good. I had to maneuver through two doorways to get to the toilet, but I manged to do that without falling over. My eyes were growing more accustomed to the dark and I was doing ok. I had a vague memory that this used to be a lot easier.
What to do with my crutches, how to sit down without it hurting, all of these things that suddenly had to be figured out. I the dark. At 2:30. I managed all of that and then disaster struck. No toilet paper. Now, this isn't a new experience. I've often spoken of having the worst paper karma on the planet. The paper is ALWAYS out when I'm around. And it's not just at my house. Public restrooms, other people's homes, everywhere I go if there is paper and I need it, it's gone. And now the paper karma had struck again at 2:30 in the morning. I calculate what has to be done. I need to get up, get into our walk-in closet, pray that there aren't piles of clothes on the floor, shut the door, reach up on the shelf, get toilet paper and somehow get it and myself back to where I was now. Not going to happen.
None of my other creative solutions to the problem seemed very appealing. And so, with something akin to shame, I call out to my husband. It takes a few times before I hear him stir. "What is it, baby?" he asks. "I"m out of toilet paper". A brief silence and a whoosh of air that is the closest he usually gets to laughing. "Really?" he says, not unkindly, as he gets up. "What is with you and toilet paper?". I decline to point out that he could have checked it before I got home from the hospital to ensure this didn't happen, but I decided not to. And here is really the limit of my vulnerability. Not only do I have to wake up my husband in the middle of night, but I have to actually be nice about it.
Sunday, June 17, 2012
Peter Parker
Last night, my husband left me and our 3-year old daughter at home while he went to get house supplies. (as I expected, this trip also yielded a great many non-essentials that he decided he wanted such as an air filter and a new set of knives, but that's a topic for another blog).
Being left at home on crutches with a busy and stubborn 3-year old wasn't something I relished, but it was better than making him schlep her to the store. So I assured him it would be ok and that I could call a neighbor if for some reason things got out of hand. Our delightfully intelligent daughter is the bossy type, given to very loud temper tantrums (complete with head-banging) if things don't go her way so I decided to avoid potential disaster by simply doing whatever she wanted.
It was early evening in the summer and she wanted to go outside. I'm always careful these days to make sure that she's in front of me when we're moving about. I learned this lesson on my first day home when I nearly fell because my left crutch didn't move when I expected it to. Looking down, I found that she had a hold of it to "help" me. Thanks darling. After you.
Outside we went, her leading the way and turning around at regular intervals to make sure I was still coming. "You're slow, Mommy" she said. Yes, indeed I am. Don't remind me. It was the time of evening when birds are making their last furious efforts to find something to eat and a place to roost. It seemed they were everywhere overhead calling to one another and flitting from tree to tree. We spent some time pointing them out. One particularly large robin landed on the grass and eyed us warily before poking around in the grass. "There's a Robin!!" my daughter exclaimed. "Yep, what do you think he's doing?", I asked "he's just hanging out", she replied. Fair enough. So were we.
Next she wanted me to go into her play house. I explained that there was no way I could fold myself in there as I had in the past, but I was willing to sit next to the house and play with her. I winced and waited for the tantrum. Instead, she readily agreed and even pulled the patio chair closer as I hobbled over. "Give me your phone", she barks, one pale little hand outstretched and the other on her hip. Reluctantly, I gave it up while she explained that she was going to put it inside the house "for safekeeping". She puttered around the house for a while, making me food, taking me to school, etc. All those domestic things with which she's so familiar.
Then she wanted to return to the back steps. "I'm Peter Parker" she announced, "And you're Aunt Mae". Apparently my daughter has been watching Spider Man with her younger brother. She then took off across the expanse of lawn, little legs pumping, to show me how fast she is. Birds and domestic affairs were forgotten while she showed off her prowess in such feats at running, forward rolls, jumping off the wall of the flower beds, and kicking bad guys (many of these activities seemed to be better suited to Spider Man than his alter-ego, but I remembered the head banging and decided to keep such thoughts to myself).
Least you think that this blog entry is about the adorable antics of my youngest child, let me get to the point. I've realized over the last 11 days that life can go at a variety of paces.My typical pace is full speed ahead with hands full and head planning what I'm going to do next. My new pace is a hell of a lot slower. I carry nothing unless it can fit in my little fanny pack. I have done exactly two household chores since I got home from the hospital. I tried to make my bed but eventually gave up. So this day, caring for my daughter meant sitting on the back steps and exclaiming my appreciation for her running speed, her jumping height, and her forward rolling excellence. There was really nothing else I could do. And in that time I learned that that's really all Jarrah wanted from me. My attention. She doesn't care if my bed is made or the kitchen is messy. She doesn't mind that my office desk looks like a tornado hit it or that my bathroom mirror is splattered and dusty. She wants to be Peter Parker and she wants me to be Aunt Mae. And so Peter and Aunt Mae enjoyed the summer evening. We watched planes fly overhead and listed to the birds as they engaged in their conversations. I may be slow, but in that moment, I was everything my daughter needed. And that was enough.
Being left at home on crutches with a busy and stubborn 3-year old wasn't something I relished, but it was better than making him schlep her to the store. So I assured him it would be ok and that I could call a neighbor if for some reason things got out of hand. Our delightfully intelligent daughter is the bossy type, given to very loud temper tantrums (complete with head-banging) if things don't go her way so I decided to avoid potential disaster by simply doing whatever she wanted.
It was early evening in the summer and she wanted to go outside. I'm always careful these days to make sure that she's in front of me when we're moving about. I learned this lesson on my first day home when I nearly fell because my left crutch didn't move when I expected it to. Looking down, I found that she had a hold of it to "help" me. Thanks darling. After you.
Outside we went, her leading the way and turning around at regular intervals to make sure I was still coming. "You're slow, Mommy" she said. Yes, indeed I am. Don't remind me. It was the time of evening when birds are making their last furious efforts to find something to eat and a place to roost. It seemed they were everywhere overhead calling to one another and flitting from tree to tree. We spent some time pointing them out. One particularly large robin landed on the grass and eyed us warily before poking around in the grass. "There's a Robin!!" my daughter exclaimed. "Yep, what do you think he's doing?", I asked "he's just hanging out", she replied. Fair enough. So were we.
Next she wanted me to go into her play house. I explained that there was no way I could fold myself in there as I had in the past, but I was willing to sit next to the house and play with her. I winced and waited for the tantrum. Instead, she readily agreed and even pulled the patio chair closer as I hobbled over. "Give me your phone", she barks, one pale little hand outstretched and the other on her hip. Reluctantly, I gave it up while she explained that she was going to put it inside the house "for safekeeping". She puttered around the house for a while, making me food, taking me to school, etc. All those domestic things with which she's so familiar.
Then she wanted to return to the back steps. "I'm Peter Parker" she announced, "And you're Aunt Mae". Apparently my daughter has been watching Spider Man with her younger brother. She then took off across the expanse of lawn, little legs pumping, to show me how fast she is. Birds and domestic affairs were forgotten while she showed off her prowess in such feats at running, forward rolls, jumping off the wall of the flower beds, and kicking bad guys (many of these activities seemed to be better suited to Spider Man than his alter-ego, but I remembered the head banging and decided to keep such thoughts to myself).
Least you think that this blog entry is about the adorable antics of my youngest child, let me get to the point. I've realized over the last 11 days that life can go at a variety of paces.My typical pace is full speed ahead with hands full and head planning what I'm going to do next. My new pace is a hell of a lot slower. I carry nothing unless it can fit in my little fanny pack. I have done exactly two household chores since I got home from the hospital. I tried to make my bed but eventually gave up. So this day, caring for my daughter meant sitting on the back steps and exclaiming my appreciation for her running speed, her jumping height, and her forward rolling excellence. There was really nothing else I could do. And in that time I learned that that's really all Jarrah wanted from me. My attention. She doesn't care if my bed is made or the kitchen is messy. She doesn't mind that my office desk looks like a tornado hit it or that my bathroom mirror is splattered and dusty. She wants to be Peter Parker and she wants me to be Aunt Mae. And so Peter and Aunt Mae enjoyed the summer evening. We watched planes fly overhead and listed to the birds as they engaged in their conversations. I may be slow, but in that moment, I was everything my daughter needed. And that was enough.
Sunday, June 3, 2012
(Wo)man down
When I was 15, my mother had to have arthroscopic knee surgery. Nothing major, they just went in and cleaned up some loose cartilage and she had to rest up for a few days. It was a very odd and unsettling experience to have my mother unable to do all her usual activities. Even the family dog could sense it as he ensconced himself at the foot of the bed and didn't move for three days. At the time, my father was a hotel executive in charge of the entertainment department at a hotel/casino in Atlantic City. Here was a man who was used to negotiating multi-million dollar contracts with the likes of Frank Sinatra, Joan Rivers, Dom DeLuise, and Tom Jones. And yet, he was completely out of his depth when it came to running the house. My 8-year old sister and I sent him to wait in the car during the one grocery trip we were brave enough to venture on.
Several years ago, a woman in our church died suddenly. She wasn't a very young woman, probably in her early 70s, but her sudden death surprised and saddened all who knew her. At her funeral, her shaken husband referred to her as the "quarterback of the family". This seemed strange to me at the time given that the family consisted of three grown children who lived out of state and who had children of their own. And yet, as my own family has grown, I've learned that it doesn't matter how far afield the children go, the woman remains the hub around which the children and even the grandchildren revolve.
For millenia, women have been coping without their men. Sometimes for short periods, sometimes for long ones, and sometimes forever. But cope they do. Between going off to war, or dying in an industrial accident, or simply getting sick and tired of the daily grind and heading for the hills, the men disappear. Even as recently as 200 years ago, it wasn't uncommon for a widower to remarry before his late wife's corpse was even cold. Somebody had to run the house, right?
I was born at the tail end of the tumultous 1960s when women were fighting for their right to work at the same jobs as men, earn the same money as men, smoke like men, and die of heart attacks and stress like men. And many of those goals have been realized. Women now make up very close to half the work force. And yet, some things have not changed. Pick a man you know who has children and ask what size shoes one of the children wears. Betcha he can't tell you.
So despite making nearly as much money as my husband, I have a second full time job as the quarterback of this house. This isn't a simpe house, either. We have a blended family of five children. Three of my biological children spend half time with their father and my husband's son spends half time with his mother. And they are often not on the same schedule. And we have a 3 year old together who is a full time job just by herself! There is cross country practice, and dance class, riding lessons and boy scouts, there are four different school schedules, daycare, church activities. And it all lives in my head. Sure, you could poll each member of the family besides me and you could probably piece it all together. But it would be a lot more efficient to simply ask me. However, in 48 hours I'll be in a hospital bed and not available to answer anybody's questions. They are all going to have to cope -- ALL BY THEMSELVES.
You might say "oh, it'll be good for them". And I have no doubt that is true. Several people have said that it'll be good for ME; that I'll learn patience and and how to leave things to others. Want to know something? I don't want to leave things to others!!!! I like doing this shit. Most days. I can say with certitude that I get a great deal of satisfaction from doing it. It's my accomplishment. It's my sense of self. The house revolves around me and I like it that way. And it's about to go away.
What about my other full time job? It's interesting to me that I don't worry about that aspect of my life at all. I love what I do at work and I'm good at it. But I've also got an amazing staff and I've put one of them in charge and if anything needs doing he and the rest of the folks in the office will do it. I haven't lost a wink of sleep over it. After all, my job is important, but it's absolutely not as important as making sure that the towels are put away in the linen closet correctly (for those of who you may not know, towels go in the linen closet sorted by color and placed such that the bump part of the fold is facing toward the open door such that you've got a nice rounded look to the pile -- go look at how they put them away at Bed Bath and Beyond).
My house is going to go to hell. I just know it. And worst of all, I'm going to have to sit and watch it go to hell. I travel a lot for my job. And I don't worry about the house when I'm away. They can all manage without me for a few days and honestly when I'm in Washington DC (or washing-the-sea as my 3-year old calls it), I'm too busy to worry about what goes on at home. My husband always makes sure the kitchen is clean when I get home and then I take care of whatever has fallen apart in my absence. I also send copious numbers of text messages to make sure that he doesn't forget to take his son to Scouts.
Starting Tuesday, the quarterback is going down. I suppose there is some comfort in knowing when it's going to happen. I've prepared well. I've written notes. I've put things on the calendar. I've cleaned the house to within an inch of its life. I will have to learn to cope with giving orders from the sidelines. With calling plays and hoping that they are executed correctly. I will have to be forgiving, of myself and of my poor husband who can take any electronic gadget apart and fix it but who cannot seem to remember that our daughter likes to dip her finger in the milk before you put the lid on the sippy cup. I don't know why, she just does. It's one of the plays in the playbook.
And then I come to the end of my long and complicated thinking on this issue. What if the house DOESN'T fall apart? What if they all manage quite well without me? That's even more distressing. So I'll see how things work out. I have a feeling that no amount of planning is going to prepare me and my family for what is to come. We'll have to work it out together.
Several years ago, a woman in our church died suddenly. She wasn't a very young woman, probably in her early 70s, but her sudden death surprised and saddened all who knew her. At her funeral, her shaken husband referred to her as the "quarterback of the family". This seemed strange to me at the time given that the family consisted of three grown children who lived out of state and who had children of their own. And yet, as my own family has grown, I've learned that it doesn't matter how far afield the children go, the woman remains the hub around which the children and even the grandchildren revolve.
For millenia, women have been coping without their men. Sometimes for short periods, sometimes for long ones, and sometimes forever. But cope they do. Between going off to war, or dying in an industrial accident, or simply getting sick and tired of the daily grind and heading for the hills, the men disappear. Even as recently as 200 years ago, it wasn't uncommon for a widower to remarry before his late wife's corpse was even cold. Somebody had to run the house, right?
I was born at the tail end of the tumultous 1960s when women were fighting for their right to work at the same jobs as men, earn the same money as men, smoke like men, and die of heart attacks and stress like men. And many of those goals have been realized. Women now make up very close to half the work force. And yet, some things have not changed. Pick a man you know who has children and ask what size shoes one of the children wears. Betcha he can't tell you.
So despite making nearly as much money as my husband, I have a second full time job as the quarterback of this house. This isn't a simpe house, either. We have a blended family of five children. Three of my biological children spend half time with their father and my husband's son spends half time with his mother. And they are often not on the same schedule. And we have a 3 year old together who is a full time job just by herself! There is cross country practice, and dance class, riding lessons and boy scouts, there are four different school schedules, daycare, church activities. And it all lives in my head. Sure, you could poll each member of the family besides me and you could probably piece it all together. But it would be a lot more efficient to simply ask me. However, in 48 hours I'll be in a hospital bed and not available to answer anybody's questions. They are all going to have to cope -- ALL BY THEMSELVES.
You might say "oh, it'll be good for them". And I have no doubt that is true. Several people have said that it'll be good for ME; that I'll learn patience and and how to leave things to others. Want to know something? I don't want to leave things to others!!!! I like doing this shit. Most days. I can say with certitude that I get a great deal of satisfaction from doing it. It's my accomplishment. It's my sense of self. The house revolves around me and I like it that way. And it's about to go away.
What about my other full time job? It's interesting to me that I don't worry about that aspect of my life at all. I love what I do at work and I'm good at it. But I've also got an amazing staff and I've put one of them in charge and if anything needs doing he and the rest of the folks in the office will do it. I haven't lost a wink of sleep over it. After all, my job is important, but it's absolutely not as important as making sure that the towels are put away in the linen closet correctly (for those of who you may not know, towels go in the linen closet sorted by color and placed such that the bump part of the fold is facing toward the open door such that you've got a nice rounded look to the pile -- go look at how they put them away at Bed Bath and Beyond).
My house is going to go to hell. I just know it. And worst of all, I'm going to have to sit and watch it go to hell. I travel a lot for my job. And I don't worry about the house when I'm away. They can all manage without me for a few days and honestly when I'm in Washington DC (or washing-the-sea as my 3-year old calls it), I'm too busy to worry about what goes on at home. My husband always makes sure the kitchen is clean when I get home and then I take care of whatever has fallen apart in my absence. I also send copious numbers of text messages to make sure that he doesn't forget to take his son to Scouts.
Starting Tuesday, the quarterback is going down. I suppose there is some comfort in knowing when it's going to happen. I've prepared well. I've written notes. I've put things on the calendar. I've cleaned the house to within an inch of its life. I will have to learn to cope with giving orders from the sidelines. With calling plays and hoping that they are executed correctly. I will have to be forgiving, of myself and of my poor husband who can take any electronic gadget apart and fix it but who cannot seem to remember that our daughter likes to dip her finger in the milk before you put the lid on the sippy cup. I don't know why, she just does. It's one of the plays in the playbook.
And then I come to the end of my long and complicated thinking on this issue. What if the house DOESN'T fall apart? What if they all manage quite well without me? That's even more distressing. So I'll see how things work out. I have a feeling that no amount of planning is going to prepare me and my family for what is to come. We'll have to work it out together.
Thursday, May 31, 2012
For the night is dark and full of terrors
Past encounters with medical procedures gives me some idea of what to expect from the overall surgical experience that I'm facing. I really hate that sensation when you first come partially awake after the effects of general anesthesia. A female voice is calling your name in this somewhat insistent, annoying fashion. It sounds like she's talking from the other end of a 100 foot tunnel. Then eventually you wake up enough to realize that it's over and then you can take stock of whatever they've done to you. This time what will be done to me seems a lot more significant than taking out my tonsils or inserting implants to fix the ravaging effects of breast feeding three children.
Mostly I'm worried that I'll wake up with the epidural still in effect and not being able to feel my legs and then panic. I'm hoping that I remember enough to know that it's nothing to worry about. But I worry that I'll worry. If that makes any sense.
On Wednesday I went to the hospital for my pre-op appointment. The first phase consisted of a chirpy guy named Andrew going over my financial history. Poor Andrew was trying very hard to be bright and upbeat, but he was really just freaking me out because he was talking really fast and I was trying mightily to keep my breathing under control so I didn't hyperventilate. At the end he informed me that my estimated out-of-pocket was going to be $948. I told him that I wasn't paying anything until I got an itemized bill because that figure came from the bundled payment for the DRG that had been assigned to my procedure. He blinked and said "I'll just put here that the patient is requesting to be billed". I smiled. Point for me.
The second phase involved me going upstairs to the surgical ward to do the medical half of the preparation. A lovely nurse came out and greeted me and took me back. This is the type of nurse that I hope I get on my surgery day. Late 50s to early 60s so she'd seen it all and nothing would rattle her. If she was aware that I was nervous, she chose to comfort me with her brisk, efficient and professional manner. She cooed over my blood pressure (104/56 -- which is actually HIGH for me, I told you I was nervous) and a pulse rate of 60. Then we went over medical history, previous surgeries, any health conditions. All this did serve to assure me that I really am pretty much the ideal surgical patient. I'm unlikely to go into cardiac arrest on the table or need a blood transfusion. Both of which, I'm sure, would mean that my out-of-pocket would end up being a lot higher than $948.
It struck me how every part of the medical establishment is designed to make the patient the "thing" and in control of the people who will be taking care of you. Not that they don't try extremely hard to treat you like a person. They really do. But it's unavoidable that at some point, I'll be an unconscious "patient" that needs to be operated on. How a surgeon can view a patient otherwise is beyond me. I mean, he's going to cut up my pelvis. If he spends too much time thinking about me as a person, I'm sure that process becomes a lot harder. At least it would for me. If I was a surgeon, I wouldn't even want to meet my patients. Maybe I'd have made a better ME than a surgeon. At least when you're an ME, your patients don't come back and complain about your bedside manner.
Ok, so there's the waking up part, which is going to suck. I hate being "in recovery" and away from my family with nobody for company except the nurse at the other end of the 100-foot tunnel. But at some point they are going to transfer me to a room and then I can be back with the people I love. Weird that I won't be leaving the hospital. That's a first for me. Every other surgical procedure I've had done was as an out-patient. So at some point they cut me loose and let me go home. This time, my home away from home will be a hospital bed on the 6th floor. I wonder if there will be other PAO patients up there or if I'll have to share the hallways with 70 year old hip replacement patients.
I've read a lot of blogs and posts on discussion groups and adjectives like "tough", "grueling", "hard" are what people use to describe the first two weeks. So I imagine, given that I'll improve every day that the adjectives to describe the first two days would be things like "major suck ass" or "I can't remember because I've blocked it out". When discussing my surgical options with Dr. Peters, I said that I was aware that the recovery from a PAO was going to be a bit more difficult than a hip replacement. His surgical fellow chimed in with "oh, recovery from a hip replacement is a cake walk compared to a PAO..... a cake walk". Well, that's encouraging. Maybe they were playing good doctor bad doctor, I'm not really sure.
So the PAO recovery will be long and I'll have quite a challenge ahead of me. The difficulty is that I'm still not sure what that challenge will entail. And I won't until I get there. I hate that. I want to know everything there is to know now. It's not the pain that scares me, really. I can deal with pain. At least I have in the past. I've given birth to 4 children with no medication at all. But that pain was different, really. It was pain with a purpose. I could define it as "what's necessary to get the baby out" and look at the end result rather than focus on what was going on at the time. I had a goal in mind. And what adorable, gorgeous, perfect little babies they all were. It's hard to get as gooey about a hip, right? I can't dress it up in cute clothes and nobody is going to throw me a "hip shower" and buy me presents. So what should my definition of this pain be? Maybe its "what I have to go through to not be in constant pain any more". Or "what I have to go through to get back to doing yoga the way I used to".
Whatever comes, I can handle it. I know this. But that is small comfort in the wee hours of the night when I wake up from a deep sleep with images of what is to come. Just 5 more nights to get through. Then it will be about coming back. And I will be back. Of this I am certain.
Mostly I'm worried that I'll wake up with the epidural still in effect and not being able to feel my legs and then panic. I'm hoping that I remember enough to know that it's nothing to worry about. But I worry that I'll worry. If that makes any sense.
On Wednesday I went to the hospital for my pre-op appointment. The first phase consisted of a chirpy guy named Andrew going over my financial history. Poor Andrew was trying very hard to be bright and upbeat, but he was really just freaking me out because he was talking really fast and I was trying mightily to keep my breathing under control so I didn't hyperventilate. At the end he informed me that my estimated out-of-pocket was going to be $948. I told him that I wasn't paying anything until I got an itemized bill because that figure came from the bundled payment for the DRG that had been assigned to my procedure. He blinked and said "I'll just put here that the patient is requesting to be billed". I smiled. Point for me.
The second phase involved me going upstairs to the surgical ward to do the medical half of the preparation. A lovely nurse came out and greeted me and took me back. This is the type of nurse that I hope I get on my surgery day. Late 50s to early 60s so she'd seen it all and nothing would rattle her. If she was aware that I was nervous, she chose to comfort me with her brisk, efficient and professional manner. She cooed over my blood pressure (104/56 -- which is actually HIGH for me, I told you I was nervous) and a pulse rate of 60. Then we went over medical history, previous surgeries, any health conditions. All this did serve to assure me that I really am pretty much the ideal surgical patient. I'm unlikely to go into cardiac arrest on the table or need a blood transfusion. Both of which, I'm sure, would mean that my out-of-pocket would end up being a lot higher than $948.
It struck me how every part of the medical establishment is designed to make the patient the "thing" and in control of the people who will be taking care of you. Not that they don't try extremely hard to treat you like a person. They really do. But it's unavoidable that at some point, I'll be an unconscious "patient" that needs to be operated on. How a surgeon can view a patient otherwise is beyond me. I mean, he's going to cut up my pelvis. If he spends too much time thinking about me as a person, I'm sure that process becomes a lot harder. At least it would for me. If I was a surgeon, I wouldn't even want to meet my patients. Maybe I'd have made a better ME than a surgeon. At least when you're an ME, your patients don't come back and complain about your bedside manner.
Ok, so there's the waking up part, which is going to suck. I hate being "in recovery" and away from my family with nobody for company except the nurse at the other end of the 100-foot tunnel. But at some point they are going to transfer me to a room and then I can be back with the people I love. Weird that I won't be leaving the hospital. That's a first for me. Every other surgical procedure I've had done was as an out-patient. So at some point they cut me loose and let me go home. This time, my home away from home will be a hospital bed on the 6th floor. I wonder if there will be other PAO patients up there or if I'll have to share the hallways with 70 year old hip replacement patients.
I've read a lot of blogs and posts on discussion groups and adjectives like "tough", "grueling", "hard" are what people use to describe the first two weeks. So I imagine, given that I'll improve every day that the adjectives to describe the first two days would be things like "major suck ass" or "I can't remember because I've blocked it out". When discussing my surgical options with Dr. Peters, I said that I was aware that the recovery from a PAO was going to be a bit more difficult than a hip replacement. His surgical fellow chimed in with "oh, recovery from a hip replacement is a cake walk compared to a PAO..... a cake walk". Well, that's encouraging. Maybe they were playing good doctor bad doctor, I'm not really sure.
So the PAO recovery will be long and I'll have quite a challenge ahead of me. The difficulty is that I'm still not sure what that challenge will entail. And I won't until I get there. I hate that. I want to know everything there is to know now. It's not the pain that scares me, really. I can deal with pain. At least I have in the past. I've given birth to 4 children with no medication at all. But that pain was different, really. It was pain with a purpose. I could define it as "what's necessary to get the baby out" and look at the end result rather than focus on what was going on at the time. I had a goal in mind. And what adorable, gorgeous, perfect little babies they all were. It's hard to get as gooey about a hip, right? I can't dress it up in cute clothes and nobody is going to throw me a "hip shower" and buy me presents. So what should my definition of this pain be? Maybe its "what I have to go through to not be in constant pain any more". Or "what I have to go through to get back to doing yoga the way I used to".
Whatever comes, I can handle it. I know this. But that is small comfort in the wee hours of the night when I wake up from a deep sleep with images of what is to come. Just 5 more nights to get through. Then it will be about coming back. And I will be back. Of this I am certain.
Wednesday, May 30, 2012
And you ask yourself "how did I get here?"
Since I started this blog to be informative to other people thinking about and researching PAO, I wanted to write about how I got here. In an earlier post, I described how my pain initially started as a sharp ache after long periods of walking in December. At the time, I figured I'd strained something and it would just get better on its own.
In March, my mother and husband finally persuaded me to see somebody so I did some research and found an interesting orthopedic specialist who was also an ultra-marathon runner. I figured that anybody who did something that like in his spare time had to be pretty zen. I was half expecting him to tell me that I was just getting old and I should take Advil and quit my complaining. He did an exam and took a single x-ray. The exam consisted of him moving my leg around and asking "does this hurt?" "how about this?". Most of it didn't hurt, but when it did hurt, it hurt a LOT. It was a sharp, catching pain right inside the hip socket followed by a dull burning ache in the same spot.
So when he put the x-ray up on the light board, he said "hm, I'm not surprised that your right hip is bothering you. You've got a really shallow socket on that side". That was the first hint that this was structural and not something minor. He told me he wanted me to have an MRI to see the condition of the cartilage. At first I argued with him about the unnecessary cost and time. I wanted to make sure that the MRI would actually mean something and wasn't just going to lead to more tests and no results. He assured me that it would tell him a great deal and that he could make treatment decisions from it about whether it was cartilage or something that could be fixed with therapy. So off I went to be shoved into a metal tube.
The MRI wasn't too bad and the CD of images I got was pretty interesting. It's always an odd feeling to see your insides. To realize that there is all this stuff underneath the fleshy exterior that we think of as "self". After waiting another week, I got to see him and review the results. My husband and I had already done some research and I was suspecting that I had a cartilage tear by comparing my images with those I found on the internet (how did we ever live without the internet??). And the doctor agreed. I had a tear in the labral cartilage that covers the femur head. And nothing I could do was going to fix that and it wouldn't heal on its own. So I knew I was facing surgery, but hoped I could get in and out and on my way pretty quickly. This orthopedic doctor didn't specialize in hips (who knew that even the specialists specialize?) so he referred me to another doctor who did a lot of this sort of arthroscopic surgery.
Another $35 co-pay later, and I'm sitting in an exam room wearing a pair of disposable shorts and silently chastising myself for not shaving my legs the night before. This doctor wanted to do another series of x-rays and again I found myself questioning the additional expense. But he assured me that he needed to see the hip "structurally" in a way that doesn't show up on the MRI. So down the hall I went to get more x-rays, including one of my leg in a "frog" position with my foot on a block and the knee rotated outward, which hurt like hell.
Back to the exam room and he comes in and spends about 5 minutes taking measurements of my hip on the x-ray. This was done with a pretty cool computer program that allowed him to click and drag little arrows all over the screen. Then he turns and delivers what was, to me, pretty devastating news. He tells me that he thinks the cartilage is torn because I have hip dysplasia. The way my hip is structured is unstable, so eventually the cartilage just gave way. He could go in fix it, he says, but it wouldn't address the underlying structural problem. Now I'm realizing that I'm out of the frying pan and into the fire. What I thought back in December as some sort of ligament strain is now just getting worse and worse every time some new doctor takes a look at images of my hip.
He wants to send me to yet another specializing specialist who does "surgery to address hip dysplasia". More waiting, more wondering. And I've just been told that my hip is malformed. At this point all I can think of is that I need a hip replacement. At 44. Short of a cancer diagnosis, this is about the worst thing I can imagine. The scheduling desk then tries to give me an appointment that is 3 weeks away and I lose it. It's amazing what a woman in tears can accomplish. Normally I don't give way to sobbing in public but I'd had all I could take. So they found me an appointment 2 weeks out and explained the doctor wasn't even in the state the following week so that was the best they could do.
During this waiting period, I get back on Google and start researching hip dysplasia. I have to do searches on "adult hip dysplasia" or I get a bunch of results about German Shepherds. And I read, and read, and read. I do searches on "non surgical treatment of hip dysplasia". I do searches on hip replacement and I finally discover a procedure called PAO. It sounds pretty gruesome to be frank. But, it saves my hip and that is of the utmost important to me. I read about the movement limitations of a hip replacement and I learn that they only last about 10-12 years. At the end of my reading, I'm determined to make my case for a PAO despite being over the age of 40.
As it turned out, I didn't have to argue at all. After another exam and more measurements of my hip, the third doctor tells me that yes I have hip dysplasia. The clinical criteria for this condition is a center edge angle measurement. You get this by drawing a straight line up from the center of the femur head and then another line that goes from the same spot to the outside of the hip. Anything less than 25 is considered dysplasic. My left hip is 20 (and so far has not given me a single problem). My right hip is 10. Less than half what it should be. So that's that. Nothing I can do at this point but put up with the pain or get it fixed. In some ways, it's nice that it's that simple. There's no watchful waiting here. The doc tells me that if I don't get it fixed, then I will develop arthritis and need a total hip replacement in "2 years at most".
He tells me that the last time he did a PAO on a person over 40 was over a year ago. So I'm unusual. I asked him why me and he said that my cartilage is still in really good condition (discounting the tear, which he can fix) and I don't yet have arthritis. I'm a normal weight and always have been. And I don't have any other underlying medical conditions. And for that I'm grateful. The thought of having metal parts in my body was pretty appalling to me. However, the doctor did tell me that I'll need a hip replacement eventually. Which could mean anything. As long as it's not today, I'm good. I'll cross that bridge when and if I come to it. In the meantime, I'll get to see x-rays of my hip with three metal screws in it. My 15 year old son will be very impressed with THAT.
In March, my mother and husband finally persuaded me to see somebody so I did some research and found an interesting orthopedic specialist who was also an ultra-marathon runner. I figured that anybody who did something that like in his spare time had to be pretty zen. I was half expecting him to tell me that I was just getting old and I should take Advil and quit my complaining. He did an exam and took a single x-ray. The exam consisted of him moving my leg around and asking "does this hurt?" "how about this?". Most of it didn't hurt, but when it did hurt, it hurt a LOT. It was a sharp, catching pain right inside the hip socket followed by a dull burning ache in the same spot.
So when he put the x-ray up on the light board, he said "hm, I'm not surprised that your right hip is bothering you. You've got a really shallow socket on that side". That was the first hint that this was structural and not something minor. He told me he wanted me to have an MRI to see the condition of the cartilage. At first I argued with him about the unnecessary cost and time. I wanted to make sure that the MRI would actually mean something and wasn't just going to lead to more tests and no results. He assured me that it would tell him a great deal and that he could make treatment decisions from it about whether it was cartilage or something that could be fixed with therapy. So off I went to be shoved into a metal tube.
The MRI wasn't too bad and the CD of images I got was pretty interesting. It's always an odd feeling to see your insides. To realize that there is all this stuff underneath the fleshy exterior that we think of as "self". After waiting another week, I got to see him and review the results. My husband and I had already done some research and I was suspecting that I had a cartilage tear by comparing my images with those I found on the internet (how did we ever live without the internet??). And the doctor agreed. I had a tear in the labral cartilage that covers the femur head. And nothing I could do was going to fix that and it wouldn't heal on its own. So I knew I was facing surgery, but hoped I could get in and out and on my way pretty quickly. This orthopedic doctor didn't specialize in hips (who knew that even the specialists specialize?) so he referred me to another doctor who did a lot of this sort of arthroscopic surgery.
Another $35 co-pay later, and I'm sitting in an exam room wearing a pair of disposable shorts and silently chastising myself for not shaving my legs the night before. This doctor wanted to do another series of x-rays and again I found myself questioning the additional expense. But he assured me that he needed to see the hip "structurally" in a way that doesn't show up on the MRI. So down the hall I went to get more x-rays, including one of my leg in a "frog" position with my foot on a block and the knee rotated outward, which hurt like hell.
Back to the exam room and he comes in and spends about 5 minutes taking measurements of my hip on the x-ray. This was done with a pretty cool computer program that allowed him to click and drag little arrows all over the screen. Then he turns and delivers what was, to me, pretty devastating news. He tells me that he thinks the cartilage is torn because I have hip dysplasia. The way my hip is structured is unstable, so eventually the cartilage just gave way. He could go in fix it, he says, but it wouldn't address the underlying structural problem. Now I'm realizing that I'm out of the frying pan and into the fire. What I thought back in December as some sort of ligament strain is now just getting worse and worse every time some new doctor takes a look at images of my hip.
He wants to send me to yet another specializing specialist who does "surgery to address hip dysplasia". More waiting, more wondering. And I've just been told that my hip is malformed. At this point all I can think of is that I need a hip replacement. At 44. Short of a cancer diagnosis, this is about the worst thing I can imagine. The scheduling desk then tries to give me an appointment that is 3 weeks away and I lose it. It's amazing what a woman in tears can accomplish. Normally I don't give way to sobbing in public but I'd had all I could take. So they found me an appointment 2 weeks out and explained the doctor wasn't even in the state the following week so that was the best they could do.
During this waiting period, I get back on Google and start researching hip dysplasia. I have to do searches on "adult hip dysplasia" or I get a bunch of results about German Shepherds. And I read, and read, and read. I do searches on "non surgical treatment of hip dysplasia". I do searches on hip replacement and I finally discover a procedure called PAO. It sounds pretty gruesome to be frank. But, it saves my hip and that is of the utmost important to me. I read about the movement limitations of a hip replacement and I learn that they only last about 10-12 years. At the end of my reading, I'm determined to make my case for a PAO despite being over the age of 40.
As it turned out, I didn't have to argue at all. After another exam and more measurements of my hip, the third doctor tells me that yes I have hip dysplasia. The clinical criteria for this condition is a center edge angle measurement. You get this by drawing a straight line up from the center of the femur head and then another line that goes from the same spot to the outside of the hip. Anything less than 25 is considered dysplasic. My left hip is 20 (and so far has not given me a single problem). My right hip is 10. Less than half what it should be. So that's that. Nothing I can do at this point but put up with the pain or get it fixed. In some ways, it's nice that it's that simple. There's no watchful waiting here. The doc tells me that if I don't get it fixed, then I will develop arthritis and need a total hip replacement in "2 years at most".
He tells me that the last time he did a PAO on a person over 40 was over a year ago. So I'm unusual. I asked him why me and he said that my cartilage is still in really good condition (discounting the tear, which he can fix) and I don't yet have arthritis. I'm a normal weight and always have been. And I don't have any other underlying medical conditions. And for that I'm grateful. The thought of having metal parts in my body was pretty appalling to me. However, the doctor did tell me that I'll need a hip replacement eventually. Which could mean anything. As long as it's not today, I'm good. I'll cross that bridge when and if I come to it. In the meantime, I'll get to see x-rays of my hip with three metal screws in it. My 15 year old son will be very impressed with THAT.
Tuesday, May 29, 2012
Down the rabbit hole
I do health systems research for a living. For the last 8 years, I've gained a lot of knowledge about health care delivery. The system is broken, we know this. But it's the only system we've got. Now, as I prepare to start my journey through a complicated gauntlet of information, questions, standards, and billing, I reflect on what I know about how care is managed and delivered.
In my family, I've always seen myself as the last line of defense in health care. When my father had to have open-heart surgery, I prided myself on the fact that nobody got to him during the four days I was there without going through me. I questioned every person who showed up in his room, confirmed every procedure, and validated everything they did to him. Now I'm going to have to turn that duty over to my husband. I won't be competent enough to do it. At least for a while. How long, I don't know. Certainly in the few hours after my surgery, he'll have to stand watch over me and make sure that I don't become the latest casualty in a health care system that injures 1,000,000 people a year and kills another 90,000. I'm not trying to freak you out. But those are the facts and when you're in my line of work, you can't just ignore the facts.
So, ask questions and check everything. Follow the doctor's directions to the letter. Another hot topic in health care quality research is hospital readmissions. I don't want to be in the hospital in the first place. I certainly don't want to end up BACK in the hospital. Yet about 10% of patients do (higher for Medicare patients, who are older than I am). Keeping myself from getting an infection in the surgical site will be the best way to make sure I get out and stay out. I can do that. Oh, and not falling down the stairs.
Finally, I know that after all this is over, I get to deal with the medical bills. Medical facilities have a variety of numbers that they put on bills, many of which are meaningless. First there is the "charge" for the stay. That's meaningless. That's just a number that the CFO of the hospital has decided will be assigned to this particular DRG (diagnosis related group). I'd have to start another blog to explain medical billing in any detail, I kid you not. Based on the charge, and my insurance, there will be an "allowable charge" (a lower number) that my insurance company and the hospital have worked out ahead of time will be the amount that they will actually get charged (as opposed to the "charges" which nobody gets charged unless they are uninsured. The irony) Then there will be co-insurance and a bunch of other complicated crap that I'll have to wade through. I'm already theoretically $500 into this journey ($250 deductible toward the MRI that I paid, plus my co-insurance which they have billed me at $322 but which I have not yet paid).
My plan is to ask the hospital for an itemized bill, preferably before I even leave. Then I'll go over that in great detail and question every single line item. It's entirely common for hospital patients to be billed for stuff that was never done or to be billed more days than they actually stayed. This is because hospital set rates for all the "stuff" that you'll need for whatever they are going to do for (to) you and it gets billed automatically. If you deviate from the expected course, there isn't necessarily going to be somebody who will catch that. You'd think the insurance companies would, but they don't. It typically falls to patients.
Being down the rabbit hole is an interesting place to be for somebody who does what I do. Knowing as much I as I do from my vantage point up here in the data, I'm curious as to what the view from down there will be like.
In my family, I've always seen myself as the last line of defense in health care. When my father had to have open-heart surgery, I prided myself on the fact that nobody got to him during the four days I was there without going through me. I questioned every person who showed up in his room, confirmed every procedure, and validated everything they did to him. Now I'm going to have to turn that duty over to my husband. I won't be competent enough to do it. At least for a while. How long, I don't know. Certainly in the few hours after my surgery, he'll have to stand watch over me and make sure that I don't become the latest casualty in a health care system that injures 1,000,000 people a year and kills another 90,000. I'm not trying to freak you out. But those are the facts and when you're in my line of work, you can't just ignore the facts.
So, ask questions and check everything. Follow the doctor's directions to the letter. Another hot topic in health care quality research is hospital readmissions. I don't want to be in the hospital in the first place. I certainly don't want to end up BACK in the hospital. Yet about 10% of patients do (higher for Medicare patients, who are older than I am). Keeping myself from getting an infection in the surgical site will be the best way to make sure I get out and stay out. I can do that. Oh, and not falling down the stairs.
Finally, I know that after all this is over, I get to deal with the medical bills. Medical facilities have a variety of numbers that they put on bills, many of which are meaningless. First there is the "charge" for the stay. That's meaningless. That's just a number that the CFO of the hospital has decided will be assigned to this particular DRG (diagnosis related group). I'd have to start another blog to explain medical billing in any detail, I kid you not. Based on the charge, and my insurance, there will be an "allowable charge" (a lower number) that my insurance company and the hospital have worked out ahead of time will be the amount that they will actually get charged (as opposed to the "charges" which nobody gets charged unless they are uninsured. The irony) Then there will be co-insurance and a bunch of other complicated crap that I'll have to wade through. I'm already theoretically $500 into this journey ($250 deductible toward the MRI that I paid, plus my co-insurance which they have billed me at $322 but which I have not yet paid).
My plan is to ask the hospital for an itemized bill, preferably before I even leave. Then I'll go over that in great detail and question every single line item. It's entirely common for hospital patients to be billed for stuff that was never done or to be billed more days than they actually stayed. This is because hospital set rates for all the "stuff" that you'll need for whatever they are going to do for (to) you and it gets billed automatically. If you deviate from the expected course, there isn't necessarily going to be somebody who will catch that. You'd think the insurance companies would, but they don't. It typically falls to patients.
Being down the rabbit hole is an interesting place to be for somebody who does what I do. Knowing as much I as I do from my vantage point up here in the data, I'm curious as to what the view from down there will be like.
Monday, May 28, 2012
The unbearable whiteness of cleaning
I think my house is the cleanest it's been in its life. And I'm talking about the type of cleaning that you do when you move -- dusting the top of the 'fridge, cleaning the baseboards, vacuuming behind the dryer. Of all the things I'm worried about, being unable to move and having to watch my house get dirty ranks right up there with falling down the stairs.
I've always been a clean freak. Even as a teenager, I was fond of taking a toothbrush to the grout in my bathroom. This is going to be a challenge.
So this Memorial Day weekend, I've spent time cleaning everything I can think of. My goal is to get my house SO CLEAN that is actually stays clean for the next 8 weeks. Probably not going to happen, but that's the idea.
I'm also happy to report that the kids really stepped up as well. And I'm not talking about the kind of stepping up that they do when I read them the collective riot act and threaten to withhold TV, video games, computer, food and water until they actually start acting like functioning members of this household. This was the type of stepping up that comes from the fear that Mom might actually die in surgery (no, I'm totally serious. Cheyenne has asked me three times who is going to buy her clothes if I bleed to death in the operating room). Said 12-year old cleaned the microwave without even being asked!! And she also picked up her room. The fact that I discovered later that she'd taken everything off the floor and stuffed it in the closet and closed the doors doesn't diminish the fact that she really tried. Morgan vacuumed nearly every square foot of the house and also picked up his 3-year old sister's room. His reaction when he found it completely trashed again 6 hours later was priceless. Welcome to my world.
I've also made a list of "mindless tasks I can do while seated and floating on pain medication". These include cleaning out my closet of clothes I haven't worn since the Bush administration and cleaning out my pantry of things that are on the verge of becoming sentient. I figure my mother can help with these tasks and it will satisfy my need to continue to be a vital part of this household even though I won't be able to push a vacuum or operate a car.
This time next week I'll be enjoying my last evening before my surgery. Meanwhile, I'm going to find more things that are dirty.
I've always been a clean freak. Even as a teenager, I was fond of taking a toothbrush to the grout in my bathroom. This is going to be a challenge.
So this Memorial Day weekend, I've spent time cleaning everything I can think of. My goal is to get my house SO CLEAN that is actually stays clean for the next 8 weeks. Probably not going to happen, but that's the idea.
I'm also happy to report that the kids really stepped up as well. And I'm not talking about the kind of stepping up that they do when I read them the collective riot act and threaten to withhold TV, video games, computer, food and water until they actually start acting like functioning members of this household. This was the type of stepping up that comes from the fear that Mom might actually die in surgery (no, I'm totally serious. Cheyenne has asked me three times who is going to buy her clothes if I bleed to death in the operating room). Said 12-year old cleaned the microwave without even being asked!! And she also picked up her room. The fact that I discovered later that she'd taken everything off the floor and stuffed it in the closet and closed the doors doesn't diminish the fact that she really tried. Morgan vacuumed nearly every square foot of the house and also picked up his 3-year old sister's room. His reaction when he found it completely trashed again 6 hours later was priceless. Welcome to my world.
I've also made a list of "mindless tasks I can do while seated and floating on pain medication". These include cleaning out my closet of clothes I haven't worn since the Bush administration and cleaning out my pantry of things that are on the verge of becoming sentient. I figure my mother can help with these tasks and it will satisfy my need to continue to be a vital part of this household even though I won't be able to push a vacuum or operate a car.
This time next week I'll be enjoying my last evening before my surgery. Meanwhile, I'm going to find more things that are dirty.
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