Monday, January 21, 2013

Lyrica - The Shoe-Eating Wonderdrug

Alright, I am having a terrible day, and it is a super stressful and busy week for me, so I am going to tell a funny story because that is going to help me feel better. Some of you may have heard it already, but bear with me, it is worth retelling.

So, the second-last time I was in the hospital we had a really hard time getting my pain under control. We tried a few things, getting the pain management team on board, a weird cancer drug that made me throw up on command, and eventually, we wound up with me on Lyrica. The first few days were rough, but then my body adjusted to it pretty quickly. It takes about a month to take full effect, so I left the hospital without it kicking in or seeing much benefit.

The fact that I was prescribed Lyrica is actually kind of interesting. I think it actually shows how up to date on the research my doctor is, and I feel lucky for that. Lyrica is primarily used for a few different things, one of the most common ones being Fibromyalgia. It's also used for seizure disorders, for pain associated with shingles, less commonly for other neuropathic pain and it's also approved in the EU for anxiety. Apparently it's used in association with other anxiety medications. Apparently in Canada we just use Gabapentin (It's older cousin) instead. Anyway, the newer research on pancreatitis is that a significant amount of the pain is caused by nerve involvement. As the pancreas gets inflamed and damaged, it inflames and damages the nerves around the pancreas as well. Some of the more sophisticated pain management techniques can involve surgical nerve blocks of certain nerve centres close to the pancreas. Unfortunately those are temporary and must be repeated. They also sound kind of squicky. Lyrica acts as a neuropathic pain dampener, and I'd rather take a drug a couple of times a day than go through more chronic procedures.

Anyway, about a month after I started taking it, the Lyrica started to kick in for me, and when it did, it really kicked in. I had more energy than I had had in a long time. I started to be able to multi-task, crossing projects off my to-do list like a pro. I felt like this drug had been the best thing to happen to me in a long time. I was focusing better. There seemed no end to the list of benefits that I was getting from the drug. I didn't seem to be having many side effects from the drug either. The only one that we've been able to identify is these intense bursts of energy that I get where I have so much energy that I try to do 20 things at once and usually manage to get a whole raft of things done before the energy wears off. When I am not somewhere where I have the ability to try to accomplish 500 things at the same time, apparently most of that energy gets channeled into talking non-stop and I don't have the ability to sit still. It's a bit like I took uppers and then drank a lot of red bull. Once we ensured that I wasn't going manic on my medication, my doctors just kind of said to enjoy the highs. So long as I was in control and wasn't doing anything ridiculous it didn't sound like that bad a side effect to them.

Almost two weeks ago now, I came home from an appointment near my house and had one of these random bursts of energy. I'd walked home and I just couldn't sit still when I got there. I was all over the place, doing twenty things at the same time. I was trying to make and eat my lunch, making sure I took my meds first, email a million people before I had to leave the house again, was chatting on my phone, attempting to work on an assignment for school and also hang a magnetic board up in my room. All in a span of about 2 hours. I'm sure there were other things that I can't even remember anymore. I was all over my apartment and doing all kinds of different things.

As I was leaving the house I was distracted with a bunch of things that had happened simultaneously. My mom had just received some exciting news so she was texting me, a friend was having an emergency so she was texting me and I was on the phone for her, my sister had just come home, my dog needed out and I was running late for an appointment. When I got to my appointment I looked down at my feet and realized that I was wearing the wrong shoes. They look really similar to the shoes I wear on a day-to-day basis, but they were old and worn out and I'd just never gotten around to throwing them out. I made a mental note that I was wearing the wrong shoes and went on with my day.

That night when I got home I went to look for my shoes. I can't find them anywhere. I look around my apartment a little bit, but don't worry too much about it. The next day I begin searching my apartment in earnest. I ask my sister for help, we look everywhere that we can think of and we can't find them anywhere. At this point I decide that Lyrica must have stolen my shoes and post on Facebook and Tumblr that Lyrica stole my shoes.

That weekend my Dad and my brother are over at my apartment. I ask them for help looking for my shoes. They turn the place apart looking for my shoes. Even they can't find them. At this point I start contemplating buying new shoes.

At this point it's been almost two weeks and my shoes still haven't shown up. There is no sign of them anywhere. No ransom note from Lyrica demanding that I pledge my eternal allegiance to the drug or they will be gone for forever. There have been 4 separate people searching my apartment looking for them. I can't figure out how a pair of shoes managed to disappear in the space of 2 hours. The only explanation is that Lyrica is a shoe-eating wonderdrug. I'm certain as soon as I go buy another pair of shoes they will magically show up again. Then everyone will treat me like the Lyrica has managed to make me imagine the whole thing in the first place (Now, hallucinations are a side-effect worth coming off a drug for). This whole thing just baffles me.

Does anyone else see any other explanation here?

Wednesday, January 16, 2013

Conversations Around Surgery

I think I decided that I like when I blog and start a conversation with people. It is less like talking to myself.

I wanted to have a conversation around surgery. I'm going to be having surgery in about 10 weeks and I was curious what people do to cope with surgery. I figured I'd share a bit about what I am thinking and what I am going about doing, and then let other people talk about their experiences and what has helped or hindered etc.

The last time I had surgery I didn't do a lot. That surgery was a lot less scary though. They were taking out an infection that could kill me if I didn't let them out of my ear, and a good chunk of the bones in my ear with it. Since I didn't want to have bacterial meningitis I let them do it. It was my head so there wasn't really any pain. At least not by the time I got out of the hospital. I don't even remember having an active iv overnight afterwards. My prep mostly involved getting really anxious and trying to bring my teddy bear into surgery. Afterwards I felt fine and sat in my house and knit for two weeks straight while trying to keep wind out of my ear. Not exactly a hardship.

This surgery is going to be different. This time I'm allergic to a lot more. The surgery itself is much more complex. The hospital stay is much longer, and the recovery is longer too. There are things that just are, like the part where I am going to have this surgery because I need it and need to be better, and there are things that are more flexible, or that I at least have more control over.

I'm lucky enough that the hospital I am having the surgery in has flexible visiting hours and I'm going to try to have someone essentially stay the night with me for the first couple of nights at least. I'm going to be on heavy pain management and have lots of tubes and little ability to move or be independent so having someone there seems essential to me. I'm a good advocate, but being that compromised and it not being in the hospital that I prefer means the need to have others to help with advocacy.

I'm also thinking a lot more in terms of what is going to happen when I get home. For the most part I know hospitals and how they work. Gradually I'll start being allowed food again (Not like I have any experience with that process or anything *sarcasm*). As my pain gets better I'll be able to knit, watch stuff, read, colour, all of my standard hospital activities. Eventually I'll be able to get up and walk around, get my own water or tea. That kind of a thing.

Before my surgery I am, barring some exceptional reason why it can't happen, going to get an occupational therapist to come to my apartment to assess what equipment I might need to help after my surgery, like supports to get out of bed and in my bathroom and stuff. I am also going to get all of the mobility and other stuff that she suggested last time that I haven't done yet. This will include a scooter. Right now my mobility has improved a lot such that it hasn't been an essential but I feel like it is going to give me a lot more independence and flexibility after my surgery to get out and be a part of the community again sooner.

I'm also organizing friends who can help, the way that I usually do, with laundry, cooking, cleaning, things to give my sister/roommate a break from taking care of me at a time when school is stressful for her. I'm hoping to be able to do things like get my room cleaned and in good order before the surgery, but trying to finish 4 courses at school in 9-10 as opposed to 12 weeks might make that difficult.

One of the other things that I'm trying to do before my surgery to help make after better is to build up my strength. For me this has meant increasing my activity in some pretty measured ways. Unless I am sick (and not sick in the I don't want to way) the rule is that I go walking or swimming everyday. So far that has worked really well for me. I have to be careful not to overdo it too much, and be careful it is the right kind of exercise with my other disabilities but going for a walk with my puppy or swimming at school when I'm there anyway works well for me. Swimming makes me super happy and I'm getting better at it too. I'm surprised how quickly my body has gone from "worrying the lifeguard that I might drown because it's been so long since I swam" to actually having some coordination and while I'm not a competitive swimmer, my body is remembering how to put moving my arms, legs, and breathing together in a coordinated effort to move me from one side of the pool to the other.

These things all sound kind of simple when I write them out, and like they don't actually make up a really coordinated effort to control the parts of this that I can and not have it be terrible. I'm curious what other people have done, especially anyone else who has had pancreatic surgery. I'm curious about what to expect, and what other people have done to make surgery manageable for them. Obviously people survive it and it is supposedly better than all of the pain I'm going through without it, so I feel like I probably have the wherewithal to get through it, but I like to be well prepared and do what I can.

Sunday, January 6, 2013

ER Advocacy

Seeing as how I've spent so much time in the ER (Though not in the last month or so.. whoo hoo!!!) I've found a few things that make it a lot easier for all involved. Being in the ER is never fun, and it is particularly less fun when you know how it is going to end but have to get through the process anyway, but having a few tips can go a long way to making it a lot better. I feel like writing a numbered list tonight so that is what this post will be.

1. Expect to be there forever. This may not seem like much of a tip, but managing expectations can go a long way. I've seen so many people lose their cool over how long the wait for a doctor is, or to get called back into the ER after triage. If you expect to be there for awhile, you can handle the wait a lot better. If you are able, try to read, or knit or something to help pass the time. Usually by the time I make it to the ER I'm too sick to do any of that, but I try to find a comfortable spot where I'm not in too much pain and I let whoever I am with distract me or sometimes try to rest until it's my turn. Getting frustrated about how long it is to wait doesn't help anyone. It's hard when you are in a lot of pain, but since they prioritize the people who are most severe it can be awhile. I'd rather know that if it was life or death I'd be in there first and getting care right away and having the doctor there, than make a giant fuss about how long I'm waiting to be seen.

2. If you have a diagnosis, or even a strongly suspected one, and you are there for a flare of a chronic condition tell them. This seems a bit basic, but it is really important. From the triage nurse onwards I tell everyone I am having a flare of chronic hereditary pancreatitis. This helps them know how serious it is, can help express how much pain I am in at the time, or how likely I am to puke while waiting (surprisingly that actually hasn't happened yet) etc. Understand though, they are still going to investigate all of the other common things that might be causing your symptoms. They will do all the routine blood and urine cultures etc. to try to confirm what you are saying. It's not that they don't believe you, it's just that it's better not to miss that it's actually a bowel obstruction or gallstones or something else that is similar but just not quite.

3. Bring a list of all of your medications, dosages and schedules. When I bring in my list (that has other stuff on it that we will cover shortly) nurses and doctors never hesitate to comment how awesome it is and how rarely they see something like this. It scares me the stories that I hear of people not even knowing what medications they take or what they take them for. If you take meds and you don't know what it is for call your pharmacist or doctor ASAP and ask. Keep it up to date too. I'm constantly printing mine again and again because it constantly changes. Also, you could put it on your smartphone or tablet, but I like being able to hand someone a physical copy to attach to my chart. This is helpful for all kinds of reasons, and is one of those no brainers that shouldn't need to be said, but if you are on more than one or two things, or have conditions that lead you to forget things like names of drugs (or if there are just too many) it is essential. Also bring the drugs with you. I've definitely sat in the ER with a pharmacist pulling every drug that I ever take ever out of my backpack and going over why I take it, how much I take and how often I take it with them. It is really important.

4. Bring a list of all the things you are allergic to. Especially if you are likely to encounter them in an ER. I'm allergic to basically all medical contrast ever and all adhesives ever so I have lots of fun in the ER. It's gotten to the point that there is one adhesive that is kind of okay to use with an iv that I can use. The ER that I go to doesn't stock this. My solution is rather than wait for the ER to track some down from another part of the hospital, that could delay my iv and needed medications is to carry it with me. I actually just keep it with me at all times. Again a list of allergies is helpful because it means they can plan treatment etc. around them without harassing you every ten seconds.

5. Be knowledgeable about your condition. If you've had any surgeries or procedures, if there are things in your body that wouldn't normally be there, if you know what dose of what pain medication works when you are in hospital, let your doctors know. Often the doctors will ask. The one that I really love is the doctor will come in, and they will ask me what is going on that I came to the hospital. I will tell them I have chronic hereditary pancreatitis and I am having a flare up. They will then without exception ask me if I know how I got pancreatitis. Sometimes I just stare at them and repeat it's chronic hereditary pancreatitis and let the second word creep in. If I'm in a moment of less pain though I usually tell them I got a perfect copy of imperfect RNA.

6. Go to a hospital where you have a history. This should be 1, but I'm too lazy to go back and change my list. It has improved my care 100 times over to go to a hospital where my GI doctor works, as opposed to the hospital that might be closest. Having access to past tests, procedures, records of my pain management regimens, makes a world of difference. On top of that sometimes I get lucky and it is my GI doctor who is on call. My GI doctor is however 100% of the time consulted and involved in my care. If it isn't possible to do this (Like when my sister and I were on vacation and she ended up in hospital hours away from home) make sure contact information for all of your specialists is also one of those things you bring to the hospital. Once they get you stable the doctors involved in your care can call your specialist at home to find out the intricacies of your care, and you'll be better off for it.

7. Be nice to people, but don't be afraid to advocate. This also extends to try not to go to the hospital alone if possible. It's awesome to have people to help track a nurse down to ask for the next dose of pain medication, or to steal an extra blanket for you (Though pro-tip: Ask a nurse for a heated blanket, it's a small thing but they are way better). Also, if they try and put you on NPO negotiate to be allowed ice chips and water if possible. Again a small thing, but makes a huge difference. Just remember that nurses are human too, and when it gets busy it is busy. From spending so much time there I've learned a lot of patience, and it's hard, but things happen in their own time in the ER. It is it's own world, and at least there is a lot of people watching to be had there. Not often people in their finest moments, but there can be a lot to be learned from that.

Anyway, that's what I've got for now. None of it is really magic, but it is a lot of small things that make a difference. Anyone else have tips for ER visits I haven't mentioned here?