Hey L8GrowthSpurt,
1. How are you currently mobilizing? Walker? Crutches? Wheelchair?
I've used a wheelchair for the first week. After the surgery, you can use walkers for a very short period of time, but walking more than maybe 50 feet is pretty difficult. When you use wheelchairs, buy a transfer board. It was really helpful while I was transferring to/from bed to the wheelchair, and from wheelchair to toilet. It's a necessity.
After a week, I used a four-wheel walker, which allows you to walk naturally unlike a walker. It was also easier for me to go long distance. However, adjusting to the walker is pretty difficult at first. You need pretty good upper body strength. I actually gained a lot of muscles on my upper body.
Crutches to me seem a bit dangerous. There's higher chance to fall than walkers since it only has only two points of contact unlike four points of contact for walkers. However, I will use crutches when I start consolidate.
2. Did you stay nearby for all the rehab? If not, how challenging was it to find a good PT somewhere else?
This was one of the important considerations before I took the surgery. I thought that going to and from P.T. would be very difficult so I tried to find a place nearby but hotels are just ridiculously expensive. I ended up renting a really upscale 1bed 1bath 750sq foot place with a nice pool and a gym about 15 min drive from the Dr.D's office and the PT works with Dr.D so he knows what CLLers need for PT. From the second week, I was actually able to drive easily so it was also a big financial relief since I don't have to use expensive uber rides. Also, the rent for 6 month was only $1590/month for a really upscale apartment with wheelchair accessibility + A/C + washer/drier unit. So if you want CLL, I would recommend to find a place first rather than booking a hotel.
Another thing is that, the doctor recommended me to get an aid nurse for at least the first week, but I didn't hire any since I found that I could do everything by myself. The only thing that is most difficult is going to the toilet, which a $20 wooden transfer board solved. Also, I bought a Roomba i4 so I didn't have to worry about cleaning the house at all. Also, you don't need to change your cloth too often and just pile the cloth for few weeks until you get better. I did change my bed sheet and wash clothes easily after a few weeks. You can survive some stinks/stains for few weeks. It's not life threatening.
3. How long were you reliant on the wheelchair?
One week, but at night/morning the pain was pretty bad for a month so I used wheelchairs in the morning and night.
4. What was starting height? New height? When in June did you do the surgery?
I started at 171.5cm, now it is 179.3cm. Late June
5. Any complications along the way during lengthening? If so, any takeaways on how to avoid them?
This is one of the most life threatening moment in the leg lengthening.
After the surgery, there is a high chance of mild to severe fat embolism. You will be in the hospital from Friday to Sunday and within that timeframe if there's any fat embolism, there will be signs. Your oxygen saturation level will be low because fat from the femur blocks the blood vessels in your lung. Also, for me, I had some complication on my retina since blood vessels in the eyes are very very fine and can be easily blocked by fat. Also, you will have fever. I had everything and it resolved naturally with time. However, on my eye, I see some tiny gray patches on my left vision probably due to fat blocking oxygen to some retina cells. Retina cells don't regenerate like your brain cells. I recommend not moving or sitting upright for first few days to prevent fat from traveling to upper body.
Even after I was discharged, I found that my blood oxygen level was low around 80%. (buy a bluetooth oximeter for $25). So I bought oxygen concentrator for $300 and it worked wonders. I was able to breath easily and reached 99% oxygen concentration while I sleep.
Everything is fine now except my vision, but I sometimes use the oxygen concentrator since I found I wake up very refreshed when I use it sometimes, although the rubber pipes are kind of annoying while I sleep.
6. Any idea on when you will be consolidated enough to weight bear without any aids such as as walker or crutches?
The doctor told me 6-8 weeks.