Femur Journey with Dr. Paley 11/9/2021

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Posted on Oct 17, 2021, 7:56 pm

#1

Hey Y'all, I am going to start my LL journey with Dr Paley. My surgery is scheduled on Nov 9 2021. Internal femurs. I'll be happy to receive help, suggestions, advice, and will keep you guys updated, ups and downs, during the course of lengthening, to help future LL'ers in any way I can. This journal can probably help both you and me. I am going to hire a nurse for first 15-18 days to assist me with moving around and stuff.

Currently emailing some home owners for short-term 3 month rentals or condo in West Palm Beach. Any suggestions for me?

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ryand2021

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Posted on Oct 18, 2021, 10:44 am

#2

Paley has a fantastic team and a well-managed PT facility so you will do very well there.

I'd recommend stay at one of the preferred hotels (Homewood, etc.) because 1. You will have a daily shuttle to PT 2. You will meet other patients who will provide emotional support to your journey. Not everyone is friendly or down to earth but you will have a good chance making a few friends.

Your mental health will take a huge hit in the first few weeks as your body will struggle to adjust to the new normal. Try to practice standing & moving with a walker ASAP. Being able to move with a walker will be a game changer.

If your recovery is normal you don't need a full-time caregiver for that long. Try to get 24-hour care your first week out of hospital and once you feel comfortable going to restroom on your own, you can reduce the shift to daytime only and progressively reduce the hours.

Make sure you have family & friends to talk to during lengthening as you need a sufficient communication channel with others to help your mental health.

Good luck.

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TakingAction

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Posted on Oct 18, 2021, 9:53 pm

#3

Quote from: ryand2021 on October 18, 2021, 10:44:56 AMPaley has a fantastic team and a well-managed PT facility so you will do very well there.

I'd recommend stay at one of the preferred hotels (Homewood, etc.) because 1. You will have a daily shuttle to PT 2. You will meet other patients who will provide emotional support to your journey. Not everyone is friendly or down to earth but you will have a good chance making a few friends.

Your mental health will take a huge hit in the first few weeks as your body will struggle to adjust to the new normal. Try to practice standing & moving with a walker ASAP. Being able to move with a walker will be a game changer.

If your recovery is normal you don't need a full-time caregiver for that long. Try to get 24-hour care your first week out of hospital and once you feel comfortable going to restroom on your own, you can reduce the shift to daytime only and progressively reduce the hours.

Make sure you have family & friends to talk to during lengthening as you need a sufficient communication channel with others to help your mental health.

Good luck.

Thank you for your comments. Handicap-accessible shuttle is certainly a plus for hotels. I'm interested in saving some money if possible. Which one would you say it's more difficult: to get to your bed from a wheelchair OR to get to a taxi/uber from a wheelchair? Do I need a caretaker to help me get into a sedan? If the difficulty level is about the same, then, I'd consider booking Airbnb which is more a lot affordable than the price of the hotel even including the taxi cost.

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ryand2021

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Posted on Oct 19, 2021, 3:06 am

#4

If this is the case I will recommend stay at the hotel during first few weeks until you're able to comfortably stand up and make a few steps with a walker. Until then you will probably need an accessible vehicle to transfer you and the wheelchair around. Paley has the accessible shuttle, but I'm not sure the cost of accessible taxi. During this time you will need a caregiver at least during daytime.

Once you can stand, move with a walker and slowly transfer in & out of vehicle without a wheelchair, you no longer need an accessible vehicle and you will leave your wheelchair at home when you go to PT. At that point you may move to a cheaper Airbnb. If you travel alone, you will still need daycare on an ad hoc basis such as cleaning, helping you pack stuff, etc. Staying at a hotel may help you save some of these charges because hotel staff can help you clean in some of the cases.

Getting into a car is slightly more difficult than getting onto a wheelchair from your bed because you can "slide" from bed to chair, but you're usually unable to "slide" from wheelchair to a car seat. However once you can stand up from your bed with a walker, move around, and use restroom independently, wheelchair will be mostly abandoned unless it's long distance transfers (in an airport terminal, etc.).

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TakingAction

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Posted on Oct 19, 2021, 4:04 am

#5

Quote from: ryand2021 on October 19, 2021, 03:06:23 AMIf this is the case I will recommend stay at the hotel during first few weeks until you're able to comfortably stand up and make a few steps with a walker. Until then you will probably need an accessible vehicle to transfer you and the wheelchair around. Paley has the accessible shuttle, but I'm not sure the cost of accessible taxi. During this time you will need a caregiver at least during daytime.

Once you can stand, move with a walker and slowly transfer in & out of vehicle without a wheelchair, you no longer need an accessible vehicle and you will leave your wheelchair at home when you go to PT. At that point you may move to a cheaper Airbnb. If you travel alone, you will still need daycare on an ad hoc basis such as cleaning, helping you pack stuff, etc. Staying at a hotel may help you save some of these charges because hotel staff can help you clean in some of the cases.

Getting into a car is slightly more difficult than getting onto a wheelchair from your bed because you can "slide" from bed to chair, but you're usually unable to "slide" from wheelchair to a car seat. However once you can stand up from your bed with a walker, move around, and use restroom independently, wheelchair will be mostly abandoned unless it's long distance transfers (in an airport terminal, etc.).

That’s helpful to know. You mentioned that it takes a few weeks to stand up from bed with a walker, move around, and use restroom independently. But how many weeks did it take you and other people to do that from the day of surgery? Do you think it’d be fine to take regular Uber without the accessible feature one month after the femur surgery?

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Quote from: ryand2021 on October 19, 2021, 03:06:23 AMIf this is the case I will recommend stay at the hotel during first few weeks until you're able to comfortably stand up and make a few steps with a walker. Until then you will probably need an accessible vehicle to transfer you and the wheelchair around. Paley has the accessible shuttle, but I'm not sure the cost of accessible taxi. During this time you will need a caregiver at least during daytime.

Once you can stand, move with a walker and slowly transfer in & out of vehicle without a wheelchair, you no longer need an accessible vehicle and you will leave your wheelchair at home when you go to PT. At that point you may move to a cheaper Airbnb. If you travel alone, you will still need daycare on an ad hoc basis such as cleaning, helping you pack stuff, etc. Staying at a hotel may help you save some of these charges because hotel staff can help you clean in some of the cases.

Getting into a car is slightly more difficult than getting onto a wheelchair from your bed because you can "slide" from bed to chair, but you're usually unable to "slide" from wheelchair to a car seat. However once you can stand up from your bed with a walker, move around, and use restroom independently, wheelchair will be mostly abandoned unless it's long distance transfers (in an airport terminal, etc.).

That’s helpful to know. You mentioned that it takes a few weeks to stand up from bed with a walker, move around, and use restroom independently. But how many weeks did it take you and other people to do that from the day of surgery? Do you think it’d be fine to take regular Uber without the accessible feature one month after the femur surgery?

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ryand2021

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Posted on Oct 19, 2021, 5:23 am

#6

It's hard to tell. It could be as fast as 1 week after surgery or as slow as a month.

When Stryde was still a thing recovery was faster (on average) because PT would push you to practice walking with a walker almost immediately after you get out of the hospital. For P2.2, PT has become a lot more conservative and people generally wouldn't want to "rush" into walking until they are much more comfortable to do so.

At Paley they will teach you to walk with a walker even with P2.2. You just need to put some of your body weight on your arms. They generally discourage "hopping".

If your recovery is normal and there are no major complications, 1 month post surgery you should be able to get into a regular Uber with a walker. Try to get a bigger car such as SUV and avoid cars with low seats (convertibles, etc.)

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PreMalone

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Posted on Oct 20, 2021, 3:25 am

#7

楼主刚在另一个帖子看到你，我也是在美国的中国人，准备明年去Parley做。会持续关注这个帖子

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TakingAction

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Posted on Oct 20, 2021, 3:27 am

#8

Quote from: ryand2021 on October 19, 2021, 05:23:59 AMIt's hard to tell. It could be as fast as 1 week after surgery or as slow as a month.

When Stryde was still a thing recovery was faster (on average) because PT would push you to practice walking with a walker almost immediately after you get out of the hospital. For P2.2, PT has become a lot more conservative and people generally wouldn't want to "rush" into walking until they are much more comfortable to do so.

At Paley they will teach you to walk with a walker even with P2.2. You just need to put some of your body weight on your arms. They generally discourage "hopping".

If your recovery is normal and there are no major complications, 1 month post surgery you should be able to get into a regular Uber with a walker. Try to get a bigger car such as SUV and avoid cars with low seats (convertibles, etc.)

It sounds like it's safer to stay on the wheelchair for the first month. Were you able to find any wheelchair Uber in West Palm Beach or most Uber taxi are just sedan/SUV? Was there any general advice you have that you wish you knew before you do the surgery? I saw one patient talking about how it's literally like pain in the ass to take number 2 during the first few days after the surgery. Shall I buy a portable toilet like the one below now to bring it to my hospital room?

https://www.amazon.com/dp/B09B3LJV18/ref=sspa_dk_detail_3?psc=1&pd_rd_i=B09B3LJV18&pd_rd_w=JwRC6&pf_rd_p=887084a2-5c34-4113-a4f8-b7947847c308&pd_rd_wg=kcTp1&pf_rd_r=M9Y7AHF2F0EKHP0DPE49&pd_rd_r=261df40a-b539-4d28-954a-ac4e16398224&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFXWTExSjRHVjYwRTYmZW5jcnlwdGVkSWQ9QTA2MjkzMzJEMVQzODczTjRTTzEmZW5jcnlwdGVkQWRJZD1BMDAwODY2NDJPRjlVT0JXU0pXNTkmd2lkZ2V0TmFtZT1zcF9kZXRhaWwmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl

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Quote from: ryand2021 on October 19, 2021, 05:23:59 AMIt's hard to tell. It could be as fast as 1 week after surgery or as slow as a month.

When Stryde was still a thing recovery was faster (on average) because PT would push you to practice walking with a walker almost immediately after you get out of the hospital. For P2.2, PT has become a lot more conservative and people generally wouldn't want to "rush" into walking until they are much more comfortable to do so.

At Paley they will teach you to walk with a walker even with P2.2. You just need to put some of your body weight on your arms. They generally discourage "hopping".

If your recovery is normal and there are no major complications, 1 month post surgery you should be able to get into a regular Uber with a walker. Try to get a bigger car such as SUV and avoid cars with low seats (convertibles, etc.)

It sounds like it's safer to stay on the wheelchair for the first month. Were you able to find any wheelchair Uber in West Palm Beach or most Uber taxi are just sedan/SUV? Was there any general advice you have that you wish you knew before you do the surgery? I saw one patient talking about how it's literally like pain in the ass to take number 2 during the first few days after the surgery. Shall I buy a portable toilet like the one below now to bring it to my hospital room?

https://www.amazon.com/dp/B09B3LJV18/ref=sspa_dk_detail_3?psc=1&pd_rd_i=B09B3LJV18&pd_rd_w=JwRC6&pf_rd_p=887084a2-5c34-4113-a4f8-b7947847c308&pd_rd_wg=kcTp1&pf_rd_r=M9Y7AHF2F0EKHP0DPE49&pd_rd_r=261df40a-b539-4d28-954a-ac4e16398224&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFXWTExSjRHVjYwRTYmZW5jcnlwdGVkSWQ9QTA2MjkzMzJEMVQzODczTjRTTzEmZW5jcnlwdGVkQWRJZD1BMDAwODY2NDJPRjlVT0JXU0pXNTkmd2lkZ2V0TmFtZT1zcF9kZXRhaWwmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl

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TakingAction

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Posted on Oct 20, 2021, 3:28 am

#9

Cool! Have you decided which day you want to do the surgery? What's your height goal?

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ryand2021

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Posted on Oct 20, 2021, 3:55 am

#10

It's possible to find it, but will be quite expensive. I personally never booked accessible Uber because when I was on a wheelchair I just used hotel shuttle and avoided going anywhere other than hotel & PT.

Using restroom will be a problem in the beginning especially when you can't stand up from a wheelchair. That's why you may want to push yourself to practice standing and hopping with walker. Paley will tell you that standing and walking will actually help bone regeneration. Your PT will help you practice starting ~week 3. It will be very difficult or nearly impossible to navigate on a wheelchair on your own if your space is not designed to be accessible (some bathroom doors don't even fit wheelchair so you must use a walker). However, the No.2 thing is less about wheelchair but more about your digest system. When you're heavily drugged your body will not be fully functional that's why No.2 could be very difficult in the first few days.

As mentioned in my previous post, my advise is don't underestimate the tremendous mental impact you will go through in the first few weeks. It's hard to imagine that until you actually have completed the surgery. Lots of patients eventually stopped early not due to physical pain, but due to mental pain. It's critical to have some trusted friends you can talk and rant to who can "escort" you through first few weeks until your mood is fully adjusted.

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