Quote from: BelowTheMean on November 14, 2020, 06:16:00 PMFinally, I’m actually a bit proud of myself for going through with this. Taking a physical trait of mine that I don’t like which is “impossible” to change and then going ahead and modifying it is empowering in some ways. It allows me to redefine what is actually possible and expands the boundaries of control that I have over my own life. After this is done, I think that the perspective that I gain should help me exert more control over my personal satisfaction and contentment. I’m very optimistic about my life coming out the other side of lengthening but I need to get through the difficult part first.
This is a really great perspective that I didn't think about before. Doing this is absolutely something you should be proud of, it takes a lot of mental and physical willpower that not many people can do.
My surgery is in a few months and I'm really nervous, but reading this has made me feel more at ease. I'm looking forward to your updates!
Good luck with your surgery!
BelowTheMean – Stryde Femurs w/ Dr. Debiparshad – Nov 2020
Hi everyone! Unfortunately I was not in the mood to browse the forum after surgery, and I definitely didn’t have the energy to write anything. I actually didn’t even bring my laptop to the hospital. Since I’ve been gone for a couple of days, I hope you all weren’t too worried about me. I’m still alive and things are progressing for me. Here is what has happened starting from surgery day. Note that I’ve never had surgery before this, so I will write everything in detail so that other people who have never had surgery can know what it’s like. Note that some of the stuff I describe may be a little gross so be warned!
Surgery Day
I took an Uber from my Airbnb to the hospital at 5am and checked in. The only entrance that was open was the ER, and they checked for COVID symptoms when I arrived. At the front desk, since I had already pre-registered and pre-paid all I had to do was review and sign a bunch of paperwork, which was pretty quick. I sat in the lobby for about 15 minutes and then I was called into a prep room. I changed into a hospital gown and then had to wipe my entire body down with some kind of sticky chemical wipe to reduce the likelihood of infection. All the stuff I brought to the hospital was placed into labeled bags for safekeeping, then the nurse just told me to lay in bed and wait. Eventually another nurse came in, took my vitals, and inserted an IV line into the inside bend of my elbow, which was super uncomfortable. I turned off the lights and lay there doing nothing. Over the next 30 minutes a bunch of other people including the anesthesiologist and OR nurses came by to say hi to me. Dr. D was the last person to stop by and we had a quick chat. He said that we would get started shortly and then left to prepare.
After another 30 or so minutes, one of the OR nurses came and disconnected me from all the equipment in the current room I was in and wheeled me into the OR. While being wheeled I remembered seeing a bunch of the same faces that I saw earlier and everyone was watching me. Once inside the OR I had to scoot from my bed onto the OR table, which was cold. The nurses pulled my arms out from under my blanket and put them on these metal stands which were also very cold. I was shivering, and then I heard the anesthesiologist say that she was injecting my IV with some meds now so that I wouldn’t feel anxious anymore.
The next thing I remember I was in a recovery room, which was a hallway with a bunch of beds on each side, though most of them were empty. Nurses would periodically come over to check my vitals and give me water through a straw and ask how I was doing. I floated in and out of consciousness but did not feel any pain at all. It was all very hazy and I don't remember any of the conversations I had - only that I had talked to people.
Some time later, they wheeled me into my room in the hospital. It was a pretty nice private room so I didn't have any complaints there aside of being right under the vent, but keeping my blanket on was enough to keep me warm. While they were setting up the room I noticed that I had a second IV attached to the back of my hand, but I don’t remember if they put it on during surgery or after I arrived in the recovery room. Later on, I would find out that having an IV in this spot was absolutely terrible for using a walker as I would be pushing the needle into my arm every time I put weight on my wrist. It must have been mid afternoon at this point since it was still light out, but I was still totally out of it. Nurses stopped by my room every hour or so to check on me. I also eventually realized that I was hooked to a catheter, and after noticing it, immediately started feeling uncomfortable there as well.
In the early evening when it was dark out a hospital PT came by to try and do a session with me. I was able to stand up with the walker and transfer from the bed having no pain and I started walking. However, I was still super nauseated from the anesthesia so I didn’t even make it out of the room. The PT had to grab the vomit bag and I dry heaved into it for a bit. Since I was on an empty stomach, there was nothing to throw up. I walked back to the bed with the walker and lay back down to continue resting.
Dinner was brought to my room at around 5 or 6 but couldn’t eat since I was nauseated and wanted to throw up if I sat up at all. I spent most of my time laying flat on my back with the bed reclined all the way. The nausea eventually wore off and around 8pm and I was able to eat part of my dinner (which was already cold.) After that I had zero nausea and could get up easily. I actually didn’t even use my cell phone on the first day. I was just so tired that I could fall asleep instantly and randomly if I lay down and close my eyes. However, time went by incredibly slow for me. I would fall asleep for what felt like hours, but then I’d look at the clock and only 30 minutes had passed. I woke up at least five times in the middle of the night, mostly from the nurses coming to check my vitals or draw blood, but each time I fell back asleep easily since I was so tired.
One annoying thing during the first night is that my ice packs kept leaking so I actually had to get up twice during the night and stand with the walker while waiting for the nurses to change my sheets and gown. After the second leak at 4am, they decided to swap me to some kind of closed electric pump system which was nice and cool but didn’t have any chance of leaking.
Surgery Day +1
I’ll consider the start of this day as sunrise, though the days kind of melded into each other. Now this is super embarrassing, but I woke up with morning wood (not good with the catheter still in.) It felt super awkward and uncomfortable and I was desperately trying to think of things that would make it go flaccid and reduce the pain. While my mind was racing I drifted off again. A nurse woke me up at 6am and fortunately I didn't have morning wood anymore (phew) and just when I was thinking about when the catheter was going to come out, the nurse said that she was going to take it out right now. I was not psychologically prepared for this, but it was quick at least. It wasn’t super painful or anything like that, but there was an internal burning sensation that felt like it lasted for a few seconds. Of course, while pulling it out urine spilled everywhere (which was super gross) but she had paper towels ready to catch all of it. It was definitely routine for her, but I still felt kind of bad.
The nurse then said that I had to pee within 6 hours since the catheter was removed or they would need to ultrasound my bladder and check for issues. Having read about this from some other people on here, this could result in needing to have the catheter reinstalled while I was awake, so I was certainly determined to pee asap. I actually felt the urge to pee less than an hour after the catheter came out and I tried to pee into a bottle while sitting on the bed. I tried this a couple of times but could never get any flow, and eventually I really really needed to pee, so I called a nurse and told her I wanted to try and get up to go pee in the bathroom. Like the previous day, I was able to stand up with no pain at all. I walked into the bathroom with my walker, and although it took a while I was able to start peeing. It was just a small trickle, even though I felt like my bladder was full, but I was so happy that I succeeded I didn't care. After clearing my bladder, I went back to bed to eat breakfast, which I had no problem wolfing down. I actually managed to pee three times in those first six hours after the catheter came out, so everything was perfectly fine. Between all the water I was drinking and the IV fluids, I had to get up and pee quite a bit while I was at the hospital.
A PT stopped by my room around 10am and we did a long walk around the hospital corridor on my floor. I estimate that I walked at least 50 meters, and it took forever, but I was not in any pain. It definitely felt really good being able to walk, even with the walk being more of a limp. I’m still amazed by how I could weight-bear on day one with Stryde. I can’t imagine how tough the guys with P2.2 and earlier rods must have had it. While walking around the hospital floor I bumped into Dr. D and he had a few questions for me about my recovery. After the walk, the PT gave me some stretches to do in bed before lunch. They were quick and easy, though at this point I had noticed that my left leg had a super awkward movement, like my heel bone was moving inside my heel. It wasn’t painful or anything, it just felt really weird! Dr. D left at the same time as the PT so I didn’t get a chance to ask him about it. At this point I thought that it might have to do with how inflamed my legs were.
For the rest of the day, I’ve also been off the IV and ice packs since the PT said it would be hard to stretch and walk while I’m iced, but that we could put the ice back on later at night to reduce the swelling. Unfortunately even though I wasn’t hooked up to the IV, the needle was still in the back of my hand so it still hurt to use the walker, especially if I put any weight down on my right hand. I was still getting Toradol and antibiotics through the IV, so they didn't want to take the needle out yet.
Next, I had lunch and took stool softener for the first time. I was hoping it would help me go number two before leaving the hospital but the nurses said sometimes it wouldn't happen. But as long as I was passing gas, that means my digestive system was working, and as long as I was taking laxatives, I should eventually be able to produce stools. I actually haven’t needed too much pain medication, which was quite surprising to me given some of the journals that I’ve read. I’m hoping this lasts and my surgical pains just happen to be minimal.
The Nuvasive rep stopped by after lunch and gave me the ERC device which itself isn't big, but is in a gigantic box. He showed me how to use it and gave me his contact info. It’s the 4th generation device that knows when it’s connected to the magnet on the rod, so I don’t have to worry about running it and not getting my 0.33 mm because it was misaligned. Also, the device is faster than previous generations so the amount of time spent each day lengthening is reduced. Hopefully it won’t be too hard to transport it on the plane as a checked bag. The rep also gave me the documentation that certifies the device for flying as a checked bag.
The PT stopped by again in the afternoon which gave me a chance to use the restroom again. I have been able to vacate more of my bladder each time, so I feel good about that, though I have not had a bowel movement yet. I’m making sure to drink a lot of fluids but I probably just haven’t eaten enough to make stools yet. We did another walk around the hospital floor with me on the walker. I was able to walk a little faster this time, even though it wasn’t really necessary. I guess I’m one of those people that likes to push my limits and the PT did encourage it. Of course, it’s only been one day since surgery so I’m still holding back quite a bit. Last year when I was still working out inside the gym, I could do a set of 8x weighted dips with two 35lb plates attached, so even though I’m not as strong now I can easily support my entire body weight with just my arms, which makes me very confident walking with the walker. We also did two sets of half squats in the PT gym which was very tiring, but he said that he wanted me to be stronger and able to transfer from bed to walker in the Airbnb.
After PT, he had me sit in a chair instead of on the bed to practice my knees bending. It felt okay so I watched an hour long episode of TV on Netflix on my phone, but that might have been overdoing it. When the nurse came to take my vitals, she said I had a slight fever and low blood pressure. I moved back to bed to be more comfortable and to eat dinner. Dinner, like the other meals, was good because I was quite hungry, but otherwise the hospital food wasn't gourmet or anything. I ate one of the protein bars that I packed after dinner to supplement. Having nothing else to do for the night, I just watched Netflix and occasionally moved my legs around. I fell asleep after dinner and woke up around 8pm, with my legs and neck in pain. This was at least 4/10 pain and the most I had experienced since waking up from surgery. I called the nurse in to administer my oral pain medication and use the ice machine on my thighs again. This definitely helped after a bit. I was able to get up and use the restroom before going to bed for the night. Another nurse came and took my vitals an hour later and I still had a fever and some pain, so she gave me toradol and put me back on the IV drip as well. After that I slept like a baby.
Surgery Day +2
I was awakened by a nurse at 4:30 to check vitals. My fever had subsided and my blood pressure was normal again. I fell right back asleep for two hours. The IV alarm went off since it needed to be refilled and I wanted to go to the bathroom as well, so I called in the nurse. I was feeling zero pain sitting in bed and only 2/10 pain from soreness when I got up to use the restroom. I felt way better in the morning than I did during the previous night. At this point I’m wondering if I was going to continue being in more pain at night than in the morning. I also got my blood drawn again and after that I decided I might as well stay awake since it was daytime.
I watched some TV until breakfast arrived, which I took with some more laxatives and MS Contin. I still haven’t gone number two yet. I was actually a bit light headed all morning, but I did a set of the three laying down stretches that my PT wanted me to do. After that I was pretty tired and drifted off for a bit. The PT came by a few hours later and we did another long walk, where I realized my left leg was a bit in pain, like 3-4/10 when putting weight on it. It has been wobbly, which I don't know if it's an issue with my skeletal structure or muscle weakness, but overall my right leg is doing way better than my left one. We got back to the room and did three sitting exercises and I was allowed back onto the bed. At lunch I was a little light headed and nauseated, though not to the point of wanting to throw up. I finished lunch, then promptly passed out for a few more hours while listening to music. Some time after, Dr D stopped by my room and checked everything and said that I was okay to be discharged today. I was awake for most of the afternoon watching Netflix. After dinner, I was sitting up in bed just waiting to be discharged. I was told that I would be discharged at 6pm, but apparently it’s right before a shift change so it took forever to get me processed.
Finally, after signing the discharge paperwork, the thing that I was looking forward to the most finally happened! The head nurse took all the IV needles out of my arm and I felt so much better! It’s a bit amusing to me how the intramedullary rods are super invasive and literally screwed to my bones but I don’t really notice or feel them at all, while the Foley catheter and all the IV needles attached to my skin were the worst part of my hospital experience by far since they had been making me constantly uncomfortable for days! Before taking the IV line out I had the nurse give me one last shot of Toradol just in case, since I hadn’t had any acute pain meds yet for the day. It worked pretty well the night before, so I assumed it would get me back to my Airbnb at least. The nurses had no problems giving me any pain meds, since I was in low pain for most of my inpatient stay and didn’t need to take all the meds meds on the dot. While they took all the needles out, there was still a ton of tape and bandages, etc that I still had attached to my body. I will need to find a way to clean all of this over the next few weeks.
My home health aide came up to my hospital room to grab my stuff, and boy did I have a lot more stuff than I came with. Aside from my clothes, I also had to take back all my prescriptions, PT worksheets, the two ice machines, and the ERC in a giant suitcase. A nursing assistant also helped me with all the stuff and got me onto a wheelchair. We loaded everything onto the aide's car and drove to my Airbnb incredibly slowly. Since each home health aide session needs to be at least 3 hours long, I had her stay with me at the Airbnb until 9pm. It was a bit crowded inside, but she was able to make me a snack and chat for a little while, which was okay. I let her go before 9pm, and then I was all on my own. My legs were pretty stiff and sore, but I didn't take any pain meds except MS Contin, which didn't do much. I was more or less ready to pass out anyway around 10pm.
Surgery Day +3
I woke up at 6:30 am, after having also awakened 4-5 times overnight. I went to the bathroom 3 times last night, with each time being progressively more difficult than the prior, since I hadn’t had any painkillers aside from MS Contin at 9pm. Since my legs were still swollen and tight, and I was in a bit of pain while walking (maybe a 4-5) so at 7am I decided to take all my prescriptions aside from MS Contin (which I wouldn’t be able to take until 9am) It made me super drowsy within 30 minutes, but at least that meant that it was working. I’m not sure if it’s the pain medication or the muscle relaxant that was making me more drowsy, but I’ll probably get a chance to individually test each one out later.
This was my first day of outpatient PT. They scheduled me for 9am but my home health aide showed up late so we didn’t even arrive until almost 9:30. I had already put on clothes, so I was ready to go as soon as my shoes were on. The drowsiness was not a huge deal as I figured that I could just power through the hour, and once I got back I could easily take a nap. At the PT, all I had to do was fill out some paperwork since the cost for the first two weeks was covered as part of my payment to Dr. D. The PT had me do a couple of exercises, then used a heat pad on my thighs for 15 minutes. I was actually still pretty flexible while he was stretching me, so I don't think I've so much lost my flexibility as I have lost the ability to use my muscles. I scheduled PT for the next two weeks, and I have some exercises that I brought back with me.
After the aide dropped me off, I just had her make me a snack and help tidy things up a bit since there was still some time left. Once she was gone, I pretty much had nothing to do. I had a set of PT exercises to complete in the afternoon - other than that the only thing there was to do is watch TV. I’m still waiting for the go-ahead from Dr. D to start lengthening, but I guess that will happen in the next day or two. So yeah, pretty bored right now, I'm at 0/10 pain while sitting on the bed and maybe 3/10 pain at most when I get up and walk around. I'm also using a cane instead of a walker when I go to the since since the walker doesn't fit in the hallway. I hope any soreness and stiffness due to surgical pains continues to decrease, and hopefully lengthening pains don't kick in for a few weeks so I can have a break in the middle. In the meantime, I need to continue practicing rationing my pain meds and using them at the right time.
Hey man thanks so much for doing this!
I noted that you mentioned that you've read a lot of journals on this site. I have to ask, weren't/aren't you at all worried? To me it seems like the risk of complications is like 20-30+%, which is what's personally holding me back from doing it. I'm looking forward to your next updates 
Good luck on your journey!
Quote from: Undecided on November 20, 2020, 02:37:12 PMHey man thanks so much for doing this!
I noted that you mentioned that you've read a lot of journals on this site. I have to ask, weren't/aren't you at all worried? To me it seems like the risk of complications is like 20-30+%, which is what's personally holding me back from doing it. I'm looking forward to your next updates
Good luck on your journey!
I'm not sure where you've seen such a high risk of complications. I feel like Paley is one of the few doctors that has the volume to publish stats on complication rates, and I haven't seen him show anything near 20%+. There are obviously risks to doing this compared to not doing it, but most of them should be manageable. What specific complications are you worried about? Even reading through the journals on here, most of the complications are pretty minor, especially with Stryde femurs.
Sorry, I should have been more clear. I meant as in based on the journals one can find on this forum, I kind of got the feeling that maybe the risk of getting serious complications is quite a lot higher than what it's being portrayed as. I guess maybe people who have had bad experiences are more likely to engange in a forum like this, since it was honestly a bit more gloomy than I had anticipated. You've likely read more journals than I have, did you not get the same feeling? I'd love to hear your thoughts on this.
Quote from: Undecided on November 21, 2020, 03:50:32 PMSorry, I should have been more clear. I meant as in based on the journals one can find on this forum, I kind of got the feeling that maybe the risk of getting serious complications is quite a lot higher than what it's being portrayed as. I guess maybe people who have had bad experiences are more likely to engange in a forum like this, since it was honestly a bit more gloomy than I had anticipated. You've likely read more journals than I have, did you not get the same feeling? I'd love to hear your thoughts on this.
Again, you'll have to be more specific about what complication you're afraid of, otherwise it's not possible to have a discussion. Each complication has a different likelihood of occurring and severity, and also varies with the starting health status of the patient and the type of procedure being done. Dr. Paley has previously published stats on complication rates for cosmetic lengthening, and I don't have the link off the top of my head (maybe you can search for it on here) but I don't remember any of the complication rates being higher than the low single digits, except maybe needing a blood transfusion during surgery. All of the severe complications were super unlikely.
I think there's a lot of selection bias on here. Keep in mind that all of the major CLL doctors do way way more LL cases (both cosmetic and not) than there are journals on here. There are plenty of people who got CLL and don't even know that this forum exists, let alone are willing to spend the time writing a journal for it while in pain. Also, the members on here who stay here after lengthening tend to be the ones with more issues, or whose height dysphoria wasn't fixed by getting CLL, so they tend to have a more negative attitude toward the surgery. The ones who succeed move on with their lives and don't come back here anymore. I would also say that the diaries with the worst outcome (i.e. Unicorn) get the most traffic, so I think people certainly talk more about negative outcomes than positive ones on here, regardless of their likelihood. One topic is clearly more interesting and drives more discussion than the other.
I'm not trying to convince you to get CLL by any means. If you browse this forum and feel like the complication rate is truly 20-30% then you should avoid it like the plague. I would say trust your gut feeling and don't get the surgery; it'll save you a ton of money and potential damage to your health.
good job man glad surgery went well
Quote from: ghkid2019 on November 23, 2020, 09:08:54 AMgood job man glad surgery went well
Thanks, ghkid2019! Welcome back.
Hey everyone, I'm adding a couple more days to the journal. I you are all doing well; I feel like I've just been enclosed in a little bubble here in Vegas. Again, note that some of my entries talk about gross topics, so be warned.
Surgery Day +4, Lengthening Day 1 (+0.66mm, 1.66mm total)
I woke up at 5am, went to the restroom and back, then sat on my bed and ate the pills I prepared last night in case I woke up early. I then went back to sleep and got up again around 7am. I went to the bathroom again, but it was quite a struggle. I was walking extra slow and I was more than a bit out of breath. After splashing some cold water on my face and eating breakfast, I felt better, so I don’t believe it was anything too serious. However, I still spent much of the morning taking blood O2 readings with my watch since I’m scared of blood clots. I don’t know if the watch readings are accurate, but they were consistent enough so I wasn’t too worried about it. I took some more meds on schedule and tried to stay awake until my PT appointment, but the hydrocodone was making me super sleepy, and I was struggling to keep my eyes open. I went back to sleep for another hour or two.
My home health aide arrived at my Airbnb on time, 30 minutes before PT. However, she got here while I was in the bathroom trying to go #2, so that initial interaction was awkward. After we met and talked, she drove me to the PT facility. So far I’ve had a different aide for each session, but I don’t mind. Aside from having to explain a bit about the surgery to each aide, none of them have actually been super inquisitive about the details my procedure, and they’ve all been kind and encouraging to me.
Today’s PT training was quite similar to last time, though this time I had a chance to ride the stationary bike as well as the normal exercises. I was extremely slow on the bike (like maybe 15-20 rpm) but it actually helped me warm up my quad flexibility by quite a bit before doing the regular exercises. I felt pretty good doing PT, just like on the first day. Walking definitely helps loosen up my muscles and I’ve found that the more I do, the easier it gets, at least until my muscles are sore. The first rep of every exercise is the hardest for sure. I got the heat pads again at the end of the session, which felt great. After each PT session I always feel like I can walk a long distance.
After PT, the aide drove me to out to get some food - I was looking to get something with extra fiber since I still trying to go #2. While we were out for food, there was a bunch of people awkwardly trying not to stare at me (and probably feeling sorry for me) though I was in a good mood so I didn’t mind. One guy actually tried to hold the door open for me even though I was 30 seconds away from him at my current snail pace. Fortunately, my aide thanked him and waved him away so I didn’t have to try and go faster. The handicap spot right outside the restaurant was taken by two different non-handicapped people while I was ordering food. I walked past one on my way in and one on my way out, with the walker in full display, but neither of them gave me a second glance. Somehow I don’t think either one of them were the type of person that would feel bad for parking in the handicap spot. Anyway, I could walk fine with the walker, I was just really slow.
After getting back to the Airbnb and eating, I noticed that my appetite wasn’t very good, but I needed to eat more calories, so I wolfed down my whole meal. After that, I felt the food coma coming on, so I sent the aide back and passed out for a bit. After waking up, I warmed up my legs and did another set of PT for the afternoon.
It was around this time that I heard from Dr. D’s office that I could start lengthening, so I was pretty excited. Finally, I could make some progress on those height numbers! I decided to do a total of two sessions during the first day since I was starting in the early afternoon. Lengthening for the first time was pretty uneventful, though the right nail seemed to make some clicking sounds during lengthening that didn’t happen with the left nail. I asked about this and they said it is normal, so hopefully there are no issues. If there is something wrong with the nail, I guess I won’t find out until my first follow-up appointment with an x-ray. Having done some self-PT right before the lengthening session, I only felt a tiny bit tighter after lengthening, otherwise my legs are still the exact same as before. I’m assuming that the first few millimeters, or even a centimeter or two won't really stretch out my legs all that much.
Overall, my pain has been 0/10 while laying in bed, and anywhere from 3-5/10 when walking. I get around 2-3/10 pain while stretching my legs either sitting or laying in bed, though I have been stretching pretty hard. If I stretch lightly, I don’t really feel any pain at all. I’ve tried a lot of different positions so my legs don’t get stuck in one position all the time and I think I can stay in most positions without pain. I would say that I’m pretty comfortable with the current baseline of pain, and if it stays this way during the whole distraction phase, I won’t have any complaints about pain at all.
I tried to eat more for dinner than usual, since I realized I wasn’t eating all that much, especially considering I need all the extra calories for bone regeneration. I don’t know how much of it is because of painkillers and how much of it is due to a natural lack of appetite, but I do have to focus on forcing my food down.
After dinner I did some light stretching and noticed that maybe because of sweat or my knees bending, that some of my waterproof bandage covers were starting to get loose. I texted the team and they said that I could come into the office tomorrow to get it fixed. I wasn’t even that worried about it since I wasn’t planning on trying to take a shower yet, but if they can take care of it, then that would be great.
I did some more light stretches and PT exercises, then took my routine pain medications before my second lengthening session of the day. It went smoothly again, though the machine still made clicking sounds when I used it on the right side. Since it was late, I decided to go to bed soon after. First thing though, I drank a giant glass of milk thinking it would help me poop, and it got me really close. I figured out a technique that allows me to sit down on the toilet much easier. Still, although I was close, I did not succeed even after trying for nearly 30 minutes. My legs were numb from being on the toilet seat too long and getting back up was hard. I dejectedly went to bed and passed out like a rock.
Surgery Day +5, Lengthening Day 2 (+1mm, 2.66mm total)
I woke up at 4:30am and took a laxative. Went #1 and suddenly noticed the toilet water was green. It scared me at first since I was still drowsy and I was scrambling to Google “green pee” on my phone, but then I realized that the toilet cleaner was fading away so the color was just a mix of yellow pee and light blue toilet cleaner. I also tried to go #2 as well, but didn’t try for too long since nothing happening. I planned to try again later in the morning after drinking a ton of milk, so I went back to sleep.
I got back up at 7:15am and took a couple more meds. I drank a bunch of water too since I had cottonmouth. Then I drank another giant glass of milk. I tried to go #2 again as I figured I should be close since I was constantly passing gas. Unfortunately, I did not succeed, but it actually felt like I was almost able to, so hopefully that means there is progress. I’m continuing to eat more fiber and I increased my fluid intake, so I'm really hoping that helps me go #2 soon. Personally, even before surgery there would be days in a row that I wouldn’t need to go #2, so this doesn’t feel like a totally uncommon occurrence for me, but I think it’s still necessary that I do it at least once soon.
I relaxed for a bit while chatting with friends on my phone, then started a self-PT workout at 8:30am to loosen my muscles for the first lengthening session of the second day. Everything was still routine, though I noticed the right rod clicked fewer times during lengthening than before, and I had slightly adjusted the position. Maybe it's possible that the v4 ERC will show that it senses the rod even if it's not at the exact right angle. I don't have any lengthening pains and flexibility loss yet, and my surgical pains seem to be going away slowly, so things are looking up. My main complaints are that my sutures are still a bit itchy (itching is better than pain though, for sure) and that my thighs are still bruised, sore, and swollen.
Since I had nothing important to do for a bit, I got my laptop out and watched some TV while doing some light stretches. At 10:30 I took both prescription laxatives, and over the next 30 minutes I ate cookies, dried cranberries, yogurt, clementines, a protein bar, and chugged two glasses of milk. Sure enough, within the next 15 minutes I was in the bathroom successfully going #2. Although not large in mass, my stools were pretty regular, came out easily, and there was no indication of bleeding. So far so good! Even though I was pretty confident that it was coming soon, it was still a big relief when it actually happened.
After getting up from the toilet seat I felt light-headed and realized that I had been sitting on there for way too long. My watch indicated my heart rate was as high as 140 bpm, which is very high for someone sitting down and "resting". I went back to bed and sat with my back against a pillow on the wall and it dropped to 100 pretty quickly so I guess sitting on the toilet is still tiring since my legs are partially supporting the weight. I was sweating a bit as well. That things which may seem trivial and easy in daily life can be a challenge after LL surgery. I rested in that sitting position for a bit and everything returned to normal.
Since there was no PT scheduled today, I wasn't going to go out at all. However, since I needed to replace some of the waterproof covering on my surgical dressings, I stopped by Dr D’s office during the day. Since I didn’t have anything scheduled with the home health aide company, I decided to take an Uber over by myself. My Airbnb is actually only one mile away from the office so it was a quick hop. I already had plenty of experience getting in and out of different types of cars from the walker. As long as my driver was willing to help fold and store my walker in the trunk and get it back out for me, then I would be fine.
The driver was happy to help and I arrived at the clinic on time. It felt quite good to do some walking around as well. While I was there, I didn’t see Dr D, but both Teresa and Ronnie were there to greet me. Ronnie replaced the waterproof covers on my bandages. Even though I was only using bath wipes to clean myself (not comfortable with showering yet) he said that the bandages should stay waterproof until the sutures are out. I mentioned that the wound sites were itchy, and he said that was normal and would go away when the skin heals. Everything looked good, though my thighs were still swollen like fat sausages. Ronnie recommended that I use the ice pumps that I got from the hospital, as icing frequently will help with swelling. Before I left, he also helped remove some of the stickers that the hospital put on me that I wasn’t able to get off myself since I didn’t have the right solvents at my Airbnb.
On my Uber ride back, the driver assumed I was recovering from a sports injury, and I just nodded and agreed with everything he asked about it since I was tired and not in the mood to talk a lot. I was pretty sweaty as well when I got back. It was the early afternoon and too early to do the second lengthening session of the day. Therefore, I tried to use a makeshift ice pack (frozen yogurt bars) to cool my thighs for a bit, but the "ice packs" were too small to really get any effect. I was also a bit sleepy but had trouble taking a nap. However, since I was playing down with my legs under the blanket the whole time, when I was ready to lengthen, my muscles were stiff again, and I had to warm them back up with a set of PT exercises. Nothing special to note about the lengthening session.
After lengthening I realized I was still very tired from going out in the afternoon, so I lay down trying to sleep again. Another hour and a half of YouTube videos later and I was still fully awake and noticed that my left heel was a bit numb. I was a bit sweaty and overheated even though I wasn't doing any physical activity. I got up to pee and walk around a bit and felt better. I need to avoid staying in one position with my heels digging into the bed for a long time. I thought about what I wanted to eat. Although I had a lot of food in the pantry, I just wasn't in the mood to cook, so I thought ordering pizzas should be good since it's a ton of calories. The pizzas arrived late but at least they were still hot. I was only able to eat half a large pizza though, which honestly isn’t enough calories (or all that nutritious.) It’s difficult to shove food down when you don’t have the appetite though. I stuck the rest of the pizza in the fridge to microwave later if I needed a quick meal.
At this point, there were still over four hours until the final lengthening of the day (if I wanted to do it on schedule) so I had to find something to do. I was too physically tired to do PT, and mentally tired of playing with my phone/computer. I'm sure many previous LLers have encountered this type of boredom early on during lengthening. Hopefully, I’ll become more mobile soon so I can walk around the Airbnb a bit more casually. Right now it’s still a big deal to switch from laying to sitting to standing position.
Eventually my left leg started hurting a bit (like pulsating) and I realized that I hadn’t taken any pain meds in a while. I took some of the anti-spasm muscle relaxant and that helped a lot. I sat around reading the LL forum and checking random websites, then took some hydrocodone and laxatives at 9pm. It was late enough to lengthen, so I started warming up my legs with PT exercises.
It was at this time that things took a turn for the worst. After my first exercise, I realized that I was not able to do much with my legs at all. They felt a bit overheated, very swollen, and in 6/10 pain from the swelling. I didn’t know what to do, and Googled how to reduce thigh swelling. I found out that I could raise the level of my legs above my heart and that should help a bit. I stacked a bunch of extra pillows on the bed to use as a leg stand, and lay there for a while. It only helped a little, but at least it helped. Soon after, I was able to take a hydrocodone pill, which I took promptly, hoping to reduce swelling. That also didn’t do anything for me in the short term.
After laying in bed for another hour with medium-high pain from swelling in my thighs I also noticed that I had two gigantic bruises on my inner thighs - one on each side. I didn't remember if they were already there after surgery or if it just started bruising. Now this freaked me out quite a bit, and I was worried it could be compartment syndrome or some kind of blood clot or that I might be suffering from DVT. I sent the pics to Dr. D’s team along with a message that I was in severe pain and didn't think I could do my last lengthening session today. They replied and said it was just normal bruising and not blood clots. Then they said I needed to warm up before each lengthening session and cool down afterwards, frequently stretch and to use the ice pumps. Also, it’s much too early to give up and slow down on lengthening.
After hearing this, I gained the willpower to lengthen once more (or maybe the hydrocodone kicked in.) I did a full set of each PT exercise and realized that I wasn’t feeling as weak anymore. I proceeded with the lengthening session, then set up my ice pumps. I was originally going to wait until Monday for my aide to help set it up, but I was determined to ice my legs now to reduce the swelling, so I decided to do it myself. It took a grueling 45 minutes, but I got it done one small step at a time. I put cold tap water and a half-frozen bottle of water on each side. I don’t actually have any ice in the mini-fridge so I had to improvise.
At this point it was well past midnight already. I turned the ice pumps on, climbed into bed, then applied the cooled pads to my thighs. Even though the water wasn’t as cold as if I had real ice in there, it still felt incredible. I couldn't believe that I had waited this long to use the ice pumps after getting out of the hospital. I also felt a great sense of satisfaction from setting the machines up all by myself, even though it’s something I could have done in 5 minutes with two working legs. Pushing through the pain was definitely the right move for me on this night, so hopefully you can see how important it is to be psychologically prepared for this. I drifted to sleep with a smile on my face.
Suddenly I woke up from a weird dream. It was not even 2am yet so I had only been asleep for an hour or so. The ice pads were barely cool now. This is good because you're not supposed to fall asleep with ice pads on. Since I didn't have enough real ice in the machine, it wasn't going to give me frostbite though. Nevertheless, I unwrapped the pads from my thigh and then lay back and fell asleep immediately. I forgot to turn the ice pumps off, but the ambient hum from the motors probably actually made it easier to fall back asleep.
Surgery Day +6, Lengthening Day 3 (+1mm, 3.66mm total)
The following morning I woke up at 5:30. I lay in bed for 10 minutes while reflecting on the dream I just had and eventually realized that I wasn’t going to fall back asleep again. I was just going to have to try and take a nap later in the day. I got up and went to the restroom and turned my ice pumps off while walking over. The pumps were definitely a tripping hazard based on how I set them up. I needed to figure out a way to keep my room safe for a temporary cripple. Given how difficult it was for me to carry any heavy objects or to even just slide things around on the ground, it wasn’t going to be an easy task.
I rearranged the ice pumps with the corresponding wires and tubes, then lay down and played with my phone for a while. Before I knew it, it was already 7am - time for me to take my pills and start warming up for lengthening. At this point every lengthening session seems like an arduous task so it's definitely not routine for me yet. I hope that things will get easier over time though. It actually took two hours for me to finish my PT exercises because I got a bunch of messages and was talking to people for a bit. However, over the course of those two hours the hydrocodone fully kicked in and it was pretty easy to do all the PT exercises. My left leg is still quite a bit weaker than my right leg but I think both are improving. Lengthening was the same as usual, though I changed the position of the ERC on the right thigh and this time there was no clicking sound, so maybe that means it is perfectly aligned. If that's the case, then the X marked on my right leg might be a bit to the left of where it should actually be. Given how swollen my thighs are, I wouldn't be surprised if it had moved. Afterwards, I dumped and refilled my ice pump buckets so I could ice my thighs and rest for a bit.
I sat around on the bed for a few hours playing on my computer and phone, then it was around lunchtime. I heated up some leftover pizza, but didn't have the appetite to finish it. I only ate a slice and a half, but at least I was able to fill with some other snacks. I still think it’s going to be very difficult to eat adequately during this phase of lengthening. Maybe once I’m done taking painkillers my appetite will get better. After eating, I took both laxatives and the muscle relaxant drug. I tried to go #2 in the bathroom, but nothing was happening, so I went back to bed. I listened to music and watched videos hoping that I would be sleepy enough to get a quick nap in. However, I didn't manage to fall asleep and the early afternoon flew by uneventfully.
It was 4pm and I decided to get another lengthening session in. I took both my short and long acting painkillers and got started on the warmup. In the last few days I've been doing the most PT exercises right before the afternoon lengthening session. I got a pretty good workout in and was all sweaty. After lengthening, I started changing the water in the ice pumps. I realized that the “cold” water that I got out of the faucet was only a tiny bit colder than the water that was still in the pump (which is insulated.) Therefore, I realized that it wasn’t worth refilling the whole ice pump bucket each time. Instead, I could just keep the water inside, and swap the frozen bottle of water from the mini-fridge into the pump and start running it. Since I’m still not very good at carrying things, let alone heavy buckets filled with water that could spill, this was a much better solution for me. The icing session felt great as usual, and I went from tight and sore almost to the point of cramping all the way down to relaxed.
After icing for a bit I got up and turned off the pumps, then went into the kitchen looking for snacks. I really didn’t have an appetite though, and I didn’t have an appetite for dinner either. All I could do is stuff myself with snacks whenever I get a chance so I was at least meeting some kind of minimum calorie requirements. I can definitely see why many people who do CLL lose a ton of weight throughout the distraction phase, even though they have more flesh, bone, and metal at the end.
After "dinner" I was pretty bored. I browsed the web on my laptop and played some games on my phone. I also frequently got up to walk around, eat snacks, and use the restroom so I wouldn't be stagnant. While walking around, I noticed a few new bruises. Well, I’m not sure if they are new or not, but my right wrist (where the IV was taken out) is bruised. My left palm is also bruised (or maybe this one is a sore muscle) which makes using any walking aid somewhat painful on my hand. This is unfortunate since I'm supposed to be increasing my daily step count each week. I also noticed the big thigh bruises from the day before were actually even bigger than yesterday, though only by a little. I also felt like I had bruises on both shins, but I didn’t see any discoloration, so that might just be from the impact of swelling. Xarelto makes you bruise more easily and makes bruises last longer, which is quite unfortunate because surgical procedures produce a lot of bruises and swelling! I still feel more comfortable being on Xarelto though since I’m a bit paranoid about blood clots after orthopedic surgery (and blood clots on flights.)
Anyway, the evening went by and even though I got up so early in the morning, I was never tired. Just before 11pm I remembered that I still needed to get another lengthening session in before midnight. I did a quick warm-up, lengthened, then swapped the frozen water bottles in the ice pumps. I turned the ice pumps on and attached the ice pads to my legs. Everything is starting to be streamlined now! I felt great after icing, and I was suddenly very sleepy, so I got ready to go to bed. It was at this time that I noticed my surgical sites were a little uncomfortable, as well as my shins. Nothing too serious, maybe 2/10 pain, but still it was a completely new type of pain that I hadn’t experienced yet after the surgery. Since there were no available painkillers for me to take at the time (all on cooldown) I decided to just ignore it and try to go to sleep.
I wish the night had just ended like that, but instead I got the worst night of sleep yet, since the surgery. I had this terrible sense of dread the whole time laying in bed, with no certainty to where it was actually manifesting from. I kept feeling like something bad was going to happen to me if I fell asleep, but I was still trying to fall asleep at the same time. So I would sleep for a few minutes, dream that I was suffering somehow, and then wake up and not be able to sleep again for a while. Also, there was quite a few occasions that I'm not sure if I was actually awake or asleep. I had a ton of nightmares throughout, dreaming about post-apocalyptic scenarios, and nearly dying a few times in my dreams. Overall, the whole night was absolutely terrible.
(Checking data from my watch later on, I saw that I had woken up eight times in total on this night and only got a total of three and a half hours of real sleep.)
Surgery Day +7, Lengthening Day 4 (+1mm, 4.66mm total)
I woke up before 7am and was not able to fall back asleep, and when I woke, I also realized that my base pain level was higher than it was the night before. However, the areas that were sensitive were not the same ones as during the prior evening. Last night, I feel like my shins and incisions hurt more, but this morning my thighs felt incredibly swollen. I was at 3/10 pain from thigh swelling even while laying down and not moving. I realized that I probably could not get up and walk comfortably without taking any painkillers, since I had sharp 5/10 pain when moving my legs. Since I wasn’t on any medication “cooldowns” at this point, I took both my short and long-acting painkillers, both types of laxatives, and Xarelto. I sat down on the side of my bed to check my phone for a bit and wait for the painkillers to kick in. At this point I was very glad that I bought a grabber tool. It was a lifesaver since the nightstand with all my prescriptions was just out of arm's reach from the bed and I was in pain trying to move as little as possible while getting my meds ready.
About 15 minutes later I wanted to pee pretty badly, so I was forced to stand up. I managed to get up and walk to the bathroom. I peed quickly and came back, then I immediately sat back down on the bed because my legs were tired already. That was one of the hardest bathroom walks I’ve had since arriving at the Airbnb from the hospital. This was definitely a low point for me, but having heard so many people say that things get better after the first two weeks, I can only remain optimistic. Still, it’s difficult not to worry because I won't have any x-rays in the first two weeks, so I won't know if all this pain has been worth anything yet.
The painkillers at least partially kicked in by 7:20, so I got up again. This time it was a bit easier, and I walked to the kitchen to make breakfast. At this point, I realized that my left leg was not weight-bearing at all, either due to pain or weakness. My right leg was still fine though. While I can make up for the lack of leg strength with arm strength, my hands are starting to get bruised from all the pressure I put on them from supporting my weight. My left leg has consistently been weaker than my right leg so far, but this is the first time I felt like I couldn’t stand on it at all. I ate quickly, then limped back to bed. I wasn’t sure if I could start my PT exercises and do my first lengthening session of the day due to the pain, but I wanted to get it done earlier in the day since I was going to have to go to the PT clinic at 11. I was planning to do my second lengthening session after exercising at the PT, so I wanted to do the first session as early as possible in the morning. However, all I could do at this point was lie down in bed and rest.
A couple of friends randomly messaged me throughout the morning, and while none of them know that I'm this procedure, just talking about fun stuff with them put me in a much better mood. I was distracted for a while, and then without even realizing it, my pain had gone back to a baseline of 0/10. I guess that meant all the narcotics kicked in. However, if I was moving around then it would be around a 3-4 level.
Now that I was all good pain-wise, I realized it was well past 9am already, so I rushed to do a full set of PT exercises and some stretches, and then did an lengthening session. Afterwards, I took the muscle relaxant drug and iced up my legs. I lay there for a bit, until my home health aide arrived, since I knew she was coming soon. When she arrived, she helped remove the ice pads from my thighs and poured out the water in the ice pumps. She also helped toss out some garbage while I was putting my socks on. I still needed help putting my shoes on though. Well, I could possibly do it at this point, but I think it’s riskier than trying to put on any other item of clothing. We drove to PT and there was no parking, so she dropped me off at the front entrance.
Inside the PT center, I got a new trainer today, since my prior one (who was very good) had all of Thanksgiving week off. However, since we were doing pretty much all the same exercises, it didn’t really matter who the trainer was. The PT office has been progressively making workouts harder for me, adding more weight, reps, or hold duration to the various exercises over time. I’m still not sure why my left leg is so much weaker than my right one, but I pointed out all of the weakness and pain that I was feeling during the various exercises to the PT. The PT’s theories as to what the problem could be were all related to muscle or soft tissue flexibility (though I’m hesitant to come to any conclusion as to what the problem is yet.) At the end of the hour I didn’t have time to use the heat pad, but I did get a quick massage that hit the right sore spots on my quads perfectly. After PT I felt so good that I asked my aide to take me to get some food, and grab a bag of ice before we got back.
I went to the same restaurant again (though it was with a different aide last time.) Someone was parked in the handicap spot again (of course) but when I walked past the driver, this time it was an old lady and she had a handicap sign hanging from her rear-view mirror. However, there was still the issue that she was actually only taking up 1/3 of the handicap spot, and 2/3 of the empty spot next to the handicap spot. I needed to walk through that empty spot since it's where the ramp starts, but I had trouble squeezing between her car and the next car without bumping into them on my walker. Eventually I did get through though, and went up the ramp. When I got to the front of the restaurant, there was an employee standing there who said that the building was at capacity due to new lockdown rules, so I would have to wait outside until more people ordered/ate/left. I was already tired from my 50 foot walk to get to the entrance, so after that I didn’t feel like eating anymore. I told the aide to go to the next location. We went to a chain grocery store hoping that they had ice freezers outdoors, but they didn’t, so we had to park and go inside. I told the aide that I wanted to spend more time walking with the walker, so she didn’t drop me off at the front of the store. There were tons of people in the grocery store, and lots of people either stared at me or awkwardly tried not to look at me, especially this 80-year old man who was walking about the same speed as me, but without a walker. I’m still pretty built in the upper body and I was wearing tight workout clothes, so I probably looked like a crippled gymnast or something. Okay, maybe not that buff, but you get the idea. After buying the 10 pound bag of ice, we drove back to the Airbnb.
During the drive back, the Airbnb host asked me if I wanted my unit cleaned since he had housekeepers over. I said sure, so they came over and started on that. The housekeepers were also able to do my laundry, which was nice since I don’t think I could do it myself. Since I was nearly halfway into my trip, with all my dirty clothes from the first half of the trip cleaned, I could easily make it through the second half without doing laundry again. They changed my sheets and towels, and mopped every room, and even took out all the remaining garbage for me. I was waiting outside so as to not get in the way, and when they had the bed ready, I went back in to sit on the bed. I started stretching since I wanted to do another lengthening session. I noticed that my time with the aide had run out, so I sent her back to avoid accumulating any additional fees.
Once the housekeepers were done cleaning, I was already done stretching, so I immediately ran the ERC on each leg. Afterwards, I still had that 10 pound bag of ice in the sink to deal with since the aide didn't have time to help me with it, so I unloaded half of it into each ice pump bucket and then filled each of them with water using a glass. This by itself was quite the workout and I was sweating by the end of it. Fortunately, everything was ready and I turned the pumps on and attached the ice pads to my legs. Let me tell you, the feeling that you get from using ice pads with real ice is so much better than cold tap water; it's not even on the same level. This time I was nice and relaxed within 20 minutes, which worked out fine, since 20 minutes is the maximum ice time anyway.
After that, since I had skipped lunch, I prepared a ton of warm food (microwaved) and ate it. My appetite was actually decent, so I ate a bit more than usual, but still I don’t think I’ve been eating enough to produce stools. I had a lot of free time before the final lengthening session of the day so since I had only slept 3.5 hours the previous night, I tried to take a nap. I watched YouTube for a bit and actually got pretty sleepy, so I put on some music and tried to nap for a while, setting an alarm so I wouldn’t sleep too long. I think I actually did doze off for a bit, but I doubt I got more than 30 minutes of sleep total.
Around 7pm I was ready to take the afternoon dose of my 12 hour drugs. It’s usually around this time that the pain starts acting up again, so maybe that means the extended release pain kill works better than I thought. I prepared and ate some more food, and also took some laxatives (with no success.) Since I had real ice in the ice buckets, I iced myself again for 20 minutes, which was nice. My thigh swelling was still quite severe though; I’ll probably need to wait another week for it to go down. Overall, I don't feel too bad right now, but not great either. I really hope the second week will be better than the first one.
I watched more TV and tried to get some my quad stretching in at the same time, since the PT said that was one of the big issues with my flexibility. Eventually, it got late and I was starting to get sleepy, so I did a full set of PT exercises and a lengthening session. Fortunately, the water still had a tiny bit of ice in it, so I basically got a full day’s worth of icing out of one bag of ice. I might try to get ice delivered to the Airbnb in the future, but I’m not sure what grocery service would be able to do it.
I fell asleep quickly after shutting down the ice pumps. I had a lot of dreams, but fortunately no nightmares. I woke up two times to go to the bathroom, but was able to fall asleep immediately afterwards each time. Overall sleep was very good, though I still totaled less than 6 hours.
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P.S.: Is anyone actually reading this stuff or is it just too much? It’s actually starting to feel quite time consuming for me to write at this level of detail, so future entries will probably be much shorter. I have a feeling that most people would rather read a cliff notes version of what happened, and only care about things specific to the procedure and lengthening.
I read the whole thing and enjoyed the level of detail. I think most people going to go through LL should read these as they would be able to feel prepared on exactly what to expect/feel during the process.
It looks like you’ve had a heck of a lot easier time than me during the first week. I was dead in bed until day 7 when I took a few steps and was forced to go to PT. It’s great to see you walking so soon and recovering well. It would be nice if you continued to post like this, but as we all know, life is busy. Don’t worry too much, focus on recovery and post in point form summary to share your journey if you can’t. Now is the fun part of growing taller 
I also read the whole thing! I’ve never seen so much detail, it honestly helps a ton since I’ve got my LL scheduled next month. keep it up and I’ll be following closely.
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