A big part of recovery is pain management, and this is the part of my journey with that. The pain I have is transitory, which should subside over time as I heal. As opposed to chronic pain which never goes away. They require to very different managment styles. So when I say something works for me or doesn't work for me in this post it is because, like all medical stuff, variation from person to person is a factor. My point is don't use my examples as a template for a all pain sufferers, or as a how to for dealing with your own pain issues, I'm not an expert.
I am unsure of exactly what and how much I was being giving while on ICU, that week was a bit of a blur. I do know that my supposed allergy to Morphine and Dilaudid were not an allergic reaction after all. It just what happens when you have a whole lot of them and don't eat. So I had my share of both of those during my first week of recovery. Nice to know that those options are open to me again.
Once I was transfered onto the the transplant unit I was given the choice of Percoset, Dilaudid, T3s, possibly some others I'm not sure. I do know that they did a piss poor job explaining my option to me. This is likely to be my only real grip with the unit, they let me(and I have to assume other patients as well) get into a such a state before they start to push pain meds. Now maybe this is so we don't have a unit of people all hooped up on goof balls when htey don't need it, but when it feels like they are trying to keep my pain managment options a secret, I call fool. 2am is not the best time to explain what you can do for me: I'm half asleep, heavely distracted by pain or loopy from meds.Apparently you can only get one kind of painkiller every so many hours, BUT that doesn't mean you can have a different type for "break through" pain management. That was the fun little secret they were keeping from me as I count the minutes till I can have something to get me to relax and stop arching my back and breathing as shallow as possible. It took about 6 days before I finally said "Do not wait for me to ask for painkillers. You just bring them to me at a set time, EVERY time. If i need more after that I will ask for more".
My thinking on this, and it has been backed up by medical professionals, is that if I am in pain and stressed out my body is not using all its energy where it should. The energy it should be using to heal is being redirected to deal with pain. Another big problem is that if I am in pain, i don't eat, another big hindrance in the healing process. If I keep myself pain free I will get better faster. How do i keep myself pain free? By taking the painkillers on a set schedule, even if I don't feel like I am in pain right then, I stay ahead on the wave and never end up in pain. Having to play catch up with pain killers sucks. It is a struggle just to get a functional level and then I find that the dose doesn't last long enough. A lot of the guys on the ward like to play cowboy and just tough it out. For me that might make you tough, but it sure doesn't make you look smart.
I could guess why some people wouldn't want to use painkillers. They are some damn powerful drugs. The first few time I had a Micheal Jackson hot shot (I.V. Dilaudid) I was rocked. I had messed up dreams about fighting terminators, were I could smell the gunsmoke and feel the chips of concrete spray against my skin from the bullets ricocheting. Generally they get you in a state of mind that isn't nice. I was much happier when I just got a dose of meds every six hours, often I didn't need the break though/additional painkillers if I did that.
I currently take 40mg of Percoset in a 24 hour period, that is two pills every 6 hours or so. I have been trying to switch to once a day using T3s instead, but every time that leads to a wet bucket of suck. I get cranky and sore, I don't feel like eating, everything gets hard to do/deal with. So I will be sticking with my current dosage for a another week and then I will give it another try. The doctors have not expressed any concern over how much painkiller I am using so I don't think its an issue. Any of the side effects from the meds have been minimal, and I don't feel loopy when I take them, so no reason to change whats working.
Monday, 27 August 2012
Thursday, 16 August 2012
Victory over Illness
Today I saw a perfect example of victory over illness. Now we have all been in a mall, or airport, or pretty much any place with a tile floor with more than one color. After just a few minutes of looking you should be able to find some small child walking around in a zig zag fashion trying to only step on tiles of a certain color. This usually looks funniest when they are doing while holding onto their parent's hand at the same time.
Today as I was leaving the hospital I saw this little kid, who was missing his right leg just above the knee, try to only walk on the red tiles. He was doing a proper job of it too, didn't see him once step on the green part of the floor. He managed to keep up with mom and sister the whole time, like nothing was amiss.
This is what I want in life, to have normality.Mine will not be a true normal i know, but I would like to go through life without having to constantly think about lungs and medicine. To just participate in life like everyone else and have the same shared experience. That kid today had that. He didn't bother to think about his leg, he just wanted to stay on the red bricks instead to the green tiles.
Today as I was leaving the hospital I saw this little kid, who was missing his right leg just above the knee, try to only walk on the red tiles. He was doing a proper job of it too, didn't see him once step on the green part of the floor. He managed to keep up with mom and sister the whole time, like nothing was amiss.
This is what I want in life, to have normality.Mine will not be a true normal i know, but I would like to go through life without having to constantly think about lungs and medicine. To just participate in life like everyone else and have the same shared experience. That kid today had that. He didn't bother to think about his leg, he just wanted to stay on the red bricks instead to the green tiles.
Wednesday, 15 August 2012
Two days shy of one month
Yesterday was a rather long day. Long in that it was more hassle than it needed to be and could have been simplified immensely with a little clarification at the outset. That being said, it got done. Everything the doctors need was completed, and it all looks good. I would just prefer not to have to go for blood work at 740 in the morning, or show up at a clinic for a test and there not even be a receptionist in the room (or even have lights on). Things just seem so much harder when it appears that people are actively trying to screw with you.
Ever marching forward, I have a few new things to do at physio everyday. We are now bringing in some arm and upper body stuff, though I am only using the little pink 2 pound weights to do them. I don't think the work out itself is getting easier, but I am getting better at doing it, I know what stations to start with, when is the best time to show up at the gym, and all the other things to make it more efficient. I can walk from the loft to the gym without stopping on a good day. As for the other issues I was having, those are also coming around. My eating has gotten better, but I am still down about 15 pounds. My throat isn't complaining as much when I eat or take my pills. There are good and bad days, but the lows don't seem to dip as low as they have been.
Some short term goals I would like to see myself reach in the next little while are just to get back some of my flexibility and arm strength so I can get a little more independent. Its not that I don't like have some else put my socks on for me, I just miss doing it for myself when ever I want. Being able to get myself a snack, or pick up an object that I have dropped on the floor are still just out of my range of safe actions. The OT and physio are helping with this, but as usual progress no matter how fast isn't quiet fast enough. Thats the stuff I've got for now, see ya next time.
Ever marching forward, I have a few new things to do at physio everyday. We are now bringing in some arm and upper body stuff, though I am only using the little pink 2 pound weights to do them. I don't think the work out itself is getting easier, but I am getting better at doing it, I know what stations to start with, when is the best time to show up at the gym, and all the other things to make it more efficient. I can walk from the loft to the gym without stopping on a good day. As for the other issues I was having, those are also coming around. My eating has gotten better, but I am still down about 15 pounds. My throat isn't complaining as much when I eat or take my pills. There are good and bad days, but the lows don't seem to dip as low as they have been.
Some short term goals I would like to see myself reach in the next little while are just to get back some of my flexibility and arm strength so I can get a little more independent. Its not that I don't like have some else put my socks on for me, I just miss doing it for myself when ever I want. Being able to get myself a snack, or pick up an object that I have dropped on the floor are still just out of my range of safe actions. The OT and physio are helping with this, but as usual progress no matter how fast isn't quiet fast enough. Thats the stuff I've got for now, see ya next time.
Saturday, 11 August 2012
Oot and Aboot!
I was released on Thursday, and it could not have come soon enough. The care I received was excellent, but the unit was loud, too many nurses bugging me, and just not enough control over my own space. The apartment might be loud at times and have a few other draw backs, but it is a far nicer place to be at..
I have, however, not being feeling great the last few days. The initial momentum I had right after the surgery (you know, the joy of breathing again) ran out the middle of last week. The cause I point to would be the tubes I had down my throat, four at one point. I am still sore from that, my throat is not as talented as some peoples i guess....*giggle*. The issue is that it has made it hard to eat and drink anything. And having to swallow, I shit you not, a shot glass of pills a day has not help the healing process. So if you eat less, you have less energy. Less energy to do things like get up and walk around, and you just generally feel like garbage. And when that happens...You don't feel like eating. Vicious cycle FTW!
So my little red wagon started out screaming down the hill, but has come to a stop in the tall grass. It has come time to get out and pull. When Your day to day accomplishments are many and significant, it is easy to keep going hard and strong. Once they start getting spaced out or become indistinct it can begin to seem like you are going backwards. I told this all to my doctor at clinic yesterday. How I was feeling nauseous, having trouble eating, tired all the time. He said "yeah that is all in keeping with someone who just had a major surgery, we did just cut you in half 3 weeks ago".
That put my mind at easy, knowing that I wasn't back sliding and that I'm still on the right track. I am still ahead of the game with many things: I am not using as much pain killer as average, all my stitches are healing cleanly, and I am back on a regular diet. So there are always place to find improvements being made.
I have to re frame this recovery in my mind. This three months stay is not about tweeking medication, rehab, and adjusting to a new normal. This three months is the equivalent of the two days the make you stay in the hospital after you break your leg. It is the bare minimum of time to heal from the kind of surgery. thinking about it this way is going to help me reconcile how I feel when I might be slowing down. That all I have for now.
I have, however, not being feeling great the last few days. The initial momentum I had right after the surgery (you know, the joy of breathing again) ran out the middle of last week. The cause I point to would be the tubes I had down my throat, four at one point. I am still sore from that, my throat is not as talented as some peoples i guess....*giggle*. The issue is that it has made it hard to eat and drink anything. And having to swallow, I shit you not, a shot glass of pills a day has not help the healing process. So if you eat less, you have less energy. Less energy to do things like get up and walk around, and you just generally feel like garbage. And when that happens...You don't feel like eating. Vicious cycle FTW!
So my little red wagon started out screaming down the hill, but has come to a stop in the tall grass. It has come time to get out and pull. When Your day to day accomplishments are many and significant, it is easy to keep going hard and strong. Once they start getting spaced out or become indistinct it can begin to seem like you are going backwards. I told this all to my doctor at clinic yesterday. How I was feeling nauseous, having trouble eating, tired all the time. He said "yeah that is all in keeping with someone who just had a major surgery, we did just cut you in half 3 weeks ago".
That put my mind at easy, knowing that I wasn't back sliding and that I'm still on the right track. I am still ahead of the game with many things: I am not using as much pain killer as average, all my stitches are healing cleanly, and I am back on a regular diet. So there are always place to find improvements being made.
I have to re frame this recovery in my mind. This three months stay is not about tweeking medication, rehab, and adjusting to a new normal. This three months is the equivalent of the two days the make you stay in the hospital after you break your leg. It is the bare minimum of time to heal from the kind of surgery. thinking about it this way is going to help me reconcile how I feel when I might be slowing down. That all I have for now.
Saturday, 4 August 2012
I came, I saw, I updated the blog
Greetings it is I, Peter. I am out on a day pass, checking out the new apartment and taking advantage of the solid internet. My doctors think they will be discharging me on Tuesday, so I will be taking over the news feed from my street team and various other PR people. The updates might seem a little foggy, depending on how long ago I took my pain meds, but we can pretend that it is just me trying to bring you deeper into the experience.
The routine of pain management, exercise, napping, and fueling/eating has been established and the recovery going well because of it. My mom says that my color is better than it has been in years. During exercise my blood oxygen stay in the high nineties, and I have no problem getting in and out of bed on my own. I still use a huge amount of energy to do anything. but everything is easier when you aren't pulling a tank with you. It is thing having a now freed up hand, and not having nose plugs to fidget with that I keep discovering.
The next few updates will be the day to day happenings, and some 'themed' post regard some of the big things that stand out in my mind as interesting. This post is short because I keep falling asleep and hitting my head on the keyboard. Time for a medically prescribed nap.
The routine of pain management, exercise, napping, and fueling/eating has been established and the recovery going well because of it. My mom says that my color is better than it has been in years. During exercise my blood oxygen stay in the high nineties, and I have no problem getting in and out of bed on my own. I still use a huge amount of energy to do anything. but everything is easier when you aren't pulling a tank with you. It is thing having a now freed up hand, and not having nose plugs to fidget with that I keep discovering.
The next few updates will be the day to day happenings, and some 'themed' post regard some of the big things that stand out in my mind as interesting. This post is short because I keep falling asleep and hitting my head on the keyboard. Time for a medically prescribed nap.
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