Okay, sorry I was slacking. I'll give a quick Day 3 and then updates on days 4-6. Today is day 6.
Day 3- discharge day
Felt so much positivity today after successfully peeing yesterday. Pain was up a little bit more because I pushed myself a good bit in the second PT session yesterday. Today involved two more PT sessions - both very productive and I walked much farther. I had less of a "shuffle" with my feet. The PT encouraged me to lift my knees up. So, my gait still sucks but at least it sucks a bit less lol. Wish I could say the transition from bed to walker gets any easier the first few days but it doesn't really. The trick that works best for me is to treat it like a squat. Sit down on the bed and lean forward. Use your hands on the bed or the surface you're getting off from to help push you up. Keep going until your head is almost over the walker. I don't even put my hands on the walker until I'm about 75% vertical. So, I'm not really using the bars on the walker to pull myself up. One last shout out to Mandy the hospital PT. She knows what she's doing and it felt like she was the perfect combination of cheerleader / drill sergeant.
I wanted to poop before leaving the hospital. They gave me prune juice and milk of magnesia but nothing worked. Dr. Debiparshad came back again today to talk. We probably talked for an hour - he could definitely tell I was in better spirits. We talked more about why he decided to do CLL surgery, what his future plans were, what he's learned about other patients, patients that have approached him who he's rejected, things he learned from Paley, etc. It's interesting he doesn't make nearly as much money off this as you'd think he would. I learned I'm his tallest patient so far. I encouraged him not to set a maximum limit because this is more about what's in someone's mind and how they see themself. Having said that, I would never recommend someone taller than 5'11 or 6' go forward with this - it is NOT a walk in the park. And of course you are risking health issues down the road.
The food did not get much better the whole time I was there. There was rubber chicken, bland meatloaf, some sort of omelette, and some combination beef/spiral pasta that tasted almost exactly like you'd expect it to taste. The desserts were pretty decent. My favorite was the snickerdoodle cookie. I didn't eat more than half of each meal. It was getting close to discharge. I had to remind the nurses several times about it. One thing I give to their credit - they called security ahead of time and had my prescription drugs I brought with me sent to the room so I wouldn't have to wait hours for them to bring it up.
Ronnie from LPX came up and it was time to go. Without him I have no idea how I'd make it back. Ronnie's great. I wanted to pay him but he refused - he said his reward is knowing how he can help good people out in a pinch. Whatever, I found him on Venmo and gave him money anyway. He drives a sedan so the transfer from wheelchair to the car was NOT fun. It was about a 25 minute drive to the hotel (Hampton Inn South Henderson). Check in was smooth. Got free beef jerky (take that, my ex-girlfriend who said my obsession over loyalty programs was stupid). Placed an order for a grocery delivery for the next day.
That was it, I enjoyed being on a real bed and not having people checking in on me every 2 hours. Took my meds and fell asleep. I am NOT using a caretaker in the hotel. I know the risk that involves but I'm keeping my phone nearby in case anything goes wrong.
Days 4, 5, and 6.
Day 4 involved receiving my grocery order. I got protein bars, water bottles, gatorade, bananas, stuff to make PB&J sandwiches, stool softeners, and laxatives. Hotel overall is good. There's no room service but they will open the door to delivery services if you give them advance notice (but they make a bit of a fuss over this - the one guy said they can't really do that everyday).
Day 4 was Memorial Day so no PT. PT was to start on Day 5. However, it never happened. Teresa tried to get in contact with the PT but I guess they got their wires crossed. It's a bit frustrating because I want to push myself as hard as I can, but I made a few walks around the perimeter of my room. Standing seems to make a big difference on my muscles.
The biggest positive to come from day 5, as I noted above, was finally being able to poop. The combination of stool softeners and laxative pills did the trick. I started developing a sharp pain on the upper left side of my left leg. Overall the left leg is lagging behind my right leg in recovery. It doesn't move as well and there's a few cases of sharp pains when I bend my left leg a certain way. I HOPE this stops soon! Frustrated I had no PT but my body was pretty worn out today so I don't know how well I'd have been able to do anyway.
Day 6 is today. PT will be coming to the hotel in about a half hour. One minor annoyance is that after this session you have to figure out a way to get to the PT clinic. It's not as easy as hopping in an Uber, of course, so I'll need to call wheelchair transport companies which I'm sure will cost an arm and a leg. From what they told me, if you choose Homewood Suites in town (this and that hotel are on their preferred hotel page), they have a shuttle van that's wheelchair accessible and it will take you anywhere within a certain mile range for free. Anyway, I pooped again and this time it was much easier to sit and stand from the toilet. I still don't have very much of an appetite. I started lengthening today for the first time! I had two sessions already. The third lengthening session will happen tonight after PT. It's awesome to finally be doing the one thing I suffered through surgery to do. I read elsewhere on this forum that laying on the bed while using the machine helps - I can concur. I feel almost no pain at all when doing the lengthening. I texted Dan from Nuvasive to make sure I'm doing it right. You want to see the "X" on your leg in the crosshair of the machine. It's interesting the machine doesn't tell you if it's not aligned right though. That would be a good improvement in later iterations of the machine.
Here are a couple of pictures of the Nuvasive machine. One is the markings on my leg. I am to line up the crosshairs of the nuvasive machine with the "X" on my leg. The second is the screen of the machine.
Pain levels - left leg during movement = 6. Right leg during movement = 3. Both legs while resting = 2.
OK - we're up to date on my diary! I'll update as important things come up.
