Bye bye nasty drugs. Hello sitting up.

Today was a pretty good day for me, and definitely a big one at that! I am off the OxyContin (pain med). I'm done with Lovenox injections (for blood clots). I skipped Percocet (pain med) for the day. My goal is to only take it at night, and then likely after PT once I start. (Almost) No more nasty drugs!

Just in case that wasn't enough excitement for one day, I also sat up for quite some time in my wheelchair today. The first successful time I've been able to sit up since before surgery.

I'm still using the bedside commode, but hopefully I'll be able to make it to the real bathroom soon. We'll need to get a little creative because there's not support in the bathroom (hand rail, etc) and it's just about the smallest bathroom ever, so there's not much room for someone to help me get in and out. We'll save that victory for another day.

This has definitely been a slow recovery, lots of baby steps. I'm used to that with EDS, as unexpected  things come up because of complications. But, it's nice to have some measurable progress now. It gives me more motivation and definitely comes at the right time. I'm starting to get a little stir crazy as these past four weeks have been spent solely in bed and watching tv; my only time out of the house was coming home from the hospital and a post-op visit to my surgeon. I need to be able to master sitting up a little bit more before I can go out to do something (and the snow will need to melt quite a bit), but I'm heading in that direction!

Here we go week three!

This Friday will be my third week post-op!

Last Friday, I had a wound check with my surgeon's PA (physician assistant). Everything looks good with my incision. It's staying nice and closed (which can be a problem with my EDS skin) and there's still no drainage of any kind, both very good things. My surgeon stepped in to see me because he's awesome. He was concerned with how uncomfortable and increased my pain meds. I was wishfully hoping to be able to back down soon, but I'm not quite there yet. He was hopeful that in the next couple of weeks I would turn the corner and be more comfortable.

After being on the increased meds for almost a week I'm more comfortable than I was before just laying in bed. It seems easier to get situated in bed with the many many pillows we have. I think I've finally found the most comfortable position for my leg, so that helps a lot too. The increased meds mean even less of an appetite than I had before. My family has gotten pretty creative and we're trying to find things I can eat, but somedays it can be a bit challenging. As long as I eat at least a gram cracker with my meds I don't get sick, so I'll be keeping that up.

Getting up is still a big task for me. I'm not allowed to abduct (laterally move my leg away from my body) at all, so someone has to pick up my leg as I scoot to the side of my bed- that will be necessary until 6-8 weeks post-op. It puts more pressure on my hip to move in my bed in order to get up. Then once I'm vertical, well it's just a totally different feeling than laying down of course. One I'm just not quite used to yet. I can't make it all the way to the bathroom yet. I think I could probably get there, but our downstairs bathroom is the size of a matchbox and not very accommodating. I need something to hold onto while I sit down, that's not available in the bathroom for the amount of support I would need. So, it's still the bedside commode for now. I would much rather be more stable and safer, then struggle just to use the real bathroom.

I'm cleared to start water PT at the end of this week. I'm scheduled to start im two weeks with my physical therapist. I'm excited to be able to do some kind of activity so that I don't get too weak.

Post-op Update

Six giant screws later, a little extra blood, a couple IVs later, surgery went very well. My surgeon is very pleased with the coverage he was able to give to my hip joint.

I spent six somewhat eventful days in the hospital after surgery. I had an epidural for the first three days, I'm very thankful for that because it made pain control slightly easier. I had a reaction to the dressing from the epidural (nothing we didn't expect) so it was taken out a day earlier than planned. I had a blood transfusion, of my own blood that I donated pre-op, a couples days after surgery. Then things got a little interesting. I had a big drop in blood pressure (90/30) and we couldn't figure out what was going on. Since pain meds can lower blood pressure, the only option was to greatly drecress them until it went up a little bit. My body wasn't exactly a fan of that and then spiked a fever in the middle of the night, which made my doctors uneasy. By about the next day, my blood pressure went back up, still not my normal but more stable.

I was able to a slowly progress with PT while in the hospital. We started with just sitting on the side of the bed, and then by about day four I could walk to the doorway with my new fancy SmartCrutches. They are special crutches which are designed to take the stress off of your shoulders and wrists. They're great.


By day five I was ready to go home and have been resting appease here since then. We moved my bed downstairs (our usual post-op plan) in the family room so that I can be more comfortable. Sitting up is still pretty uncomfortable and I only do so when I'm going to the bathroom. I'm still on all my pain meds around the clock, but will hopefully be able to back down shortly.

Post-op Update

I'm slowly starting to feel a little better each day. As of yesterday I'm not as tired, I can keep my eyes open for a little bit, before it was a lost cause.

I'm not quite ready to start skipping and cutting down on my medicine, I'm still in quite a bit of pain. Moving around is a struggle and makes my hip very soar, so I usually stay in a spot for the majority of the day. Right now, it's uncomfortable to sit up in my wheel chair so I either lay in my bed or on the couch.

I'm still not eating much. My dad made some homemade pita bread last night and I was able to eat that. Once I start cutting down my medicine I'll get my appetite back, but until then I just have to be careful that I'm eating enough so that I don't pass out.

Yesterday I had a bad headache, almost a migraine. I had a bad one in the summer with my right hip surgery. It turned out that I was getting too much oxycodone. Remembering that, my mom had me skip my next oxycodone and just take my other pain medicine (trazadone). After a nice long nap, my headache went away. Skipping the oxycodone was good for my headache, but it made my hip pain hard to control after that. It took a couple rounds of medicine to get it back under control.

I had some friends visit Friday, which was nice. They brought me a bag full of stuff from my journalism class with lots of useful recovery items to keep me warm and occupied. I really appreciate having my friends stop by, it makes my recovery more pleasant.

A Little Update and Some Surgery Talk

I know it's been a while since I've filled everyone in, it's been a busy past couple of weeks. I thought I should get a quick update in before I have surgery.

My left hip (operative side) is pretty much the same, still popping out (the reason I'm having surgery) and still causing me pain. I guess that's a good thing since I'm getting it operated on this Wednesday. My right hip (June operation) is so much better than it was a year ago, and I can't wait until I can say the same about the left side. However, my right hip has started some new issues. I'm having more joint related pain, most likely due to minor subluxations in that hip. But, it doesn't cause constant pain and it seems to be subsiding from what it was a few weeks ago so that's good news. I'm still much much better than I was a year ago, even two and three years ago so I'm not complaining.

Well now that we have the hips out of the way...
I've been having more lower back pain (SI joint area). It's most likely due to the increased subluxations of my right hip. I've had SI joint pain off and on way before I knew I was diagnosed with EDS. It was always just on my left side, now it's on the right side too. There isn't much I can do before I have surgery, so I've been using the heating pad as much as I can, which gives me some relief. I'm kind of getting used to the back pain, which makes it seem not as bad. I'm hoping that I'll get some relief once my left side is operated on because I'm sure the fixed hip v. the not fixed hip isn't helping the situation.

I go in for surgery tomorrow, which I'm completely ready for. I'm ready to get it over with and I'm ready to have a working hip. The hospital will call sometime this afternoon with the time that I need to be at the hospital, most likely bright and early. The surgery is the same on I had this past June, just on the other side (left) and it's a combined surgery as opposed to the separate scope and Z-Plasty (lengthening IT Band) surgery. Overall, it will make my recovery faster, but I'm expecting to feel not as well for a little longer than I was in the summer since it will be more extensive surgery all at once. My surgeon will go in with the scope first to check things out, fix any tears and tighten my hip capsuel and any other surrounding ligaments that need tightened. Then he'll open my hip up laterally and lengthen my IT Band with the Z-Plasty technique. (see past blog post on Z-Plasty)

I'll update as soon as I can after surgery, probably tomorrow night.

Physical Therapy Check In

I went to PT yesterday to have my gait video taped for the last time before my surgery. My gait is even still improving from the surgeries on my right hip, which is very good news.

As always, good news comes at a price. Recently my right hip (operative side) has been causing me more discomfort. Since surgery I've had little, if any pain in that hip; but now it's beginning to sublux. (Just to clarify, this is not what was corrected in surgery. My IT band is not snapping over my hip anymore, which was what my biggest problem was) This subluxation that I'm experiencing is my actual hip joint moving out of place.

My PT tested my hip yesterday and confirmed that my pain and discomfort is coming from my hip joint. So this is good news because it means that IT band wise, the surgery is working and holding up; not so good news because my joint is now moving out of place.

There isn't much I can do right now for my right hip until I have surgery on my left side. Of course, I'm going to avoid movements that make me more prone to subluxations, but I can't avoid moving completely. My PT recommend sitting on an exercise ball while I'm at home; watching TV, or just doing homework. This is a simple way to gain core strength and balance, which will provide my hip with more support. I'm going to try it for the next week or so and see if I see any improvements.

Walking & Popping

Day three of walking and things are looking good. I'm not have much pain at all, and if I do it's not from my IT band (z-plasty) but from my actual hip joint it's self.

Let me explain my "popping" for a second.

My hip problems consists of two different kinds of popping. The first is the IT band, when it slips over my hip (greater-trochanter; lateral side of the hip). I refer to this as "my hip popping out." The second is when my actual hip joint pops. It never actually pops out, like a dislocation. The best way to describe it is as a clunk, you can hear it and I can defiantly feel it. The z-plasty of the IT Band was to fix "my hip popping out", the scope may or may not fix the hip joint clunk.

With that said, my right (operative side) hip doesn't seem to be popping out now (IT band), but then again I try to avoid letting that happen because it would be very soar. It feels like it isn't going to do that anymore, meaning the surgery was successful, but it's still a little too early to say for sure. Right now the only popping I'm having in that hip is the clunk of my hip joint. It's hard to tell if it is better, worse, or the same as it was pre-op. My surgeon said at this point you just have to wait and see how the scope part of things heals. He said a lot of the time patients experience popping and other things post-op and by about 4 months later they all go away. He couldn't say for sure if the popping I'm having now will go away then, we'll just have to wait and see.

As you can imagine, when my hip joint pops (the clunk) I have more pain since it's newly operated on and things are still sore. Other than that I'm really doing remarkably well. My walking feel almost like normal. I even have to make sure I hold back a little bit since I'm not 100% yet and so that I don't increase my pain; pain is my guide.