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[InFullStryde]

Hi InFullStryde,

This is probably the best diary ever ! Thanks so much!

1) How heavy and big is the ERC device? Is it portable in a backpack?

2) Do you manage working during this adventure? I read you wanted to work from home

The ERC Device is pretty good size.  I'd say

It's about 5 lbs or so and the company will provide you a rolling type case for it.  It reminds me of a rolling brief case.  So the device is portable; but its not "fun-sized".  Its like carrying around a brief case.

I am working from home and 100% effective this way.  Since getting home from hospital after a three day stay after surgery, I have worked an average of 8 hours per day.  Stretching, PT, and lengthening are just done in between work.   

Let me know if you have any further questions!

[InFullStryde]

Day 14 - Little improvement each day; continues. [6.93mm Taller] 

Time goes fast doesn't it? It was a little over two weeks ago since my surgery morning.  One of my later life credence's is to place yourself into a process that will ultimately lead you to what you desire/want in your life.   Once placed, it is only time and effort now that is needed to get you to that exact place.  Well, here I am.  I've placed myself into a process and time goes by so quickly...(where does the time go?) and I'm doing everything I can to succeed in this process.  Today was a decent day.  I did have dull pain in my legs again at about level 5...which is very comfortable.  In a bit a daze as well, since I been using the Norco pills regularly; but I'm all out of them and I'm glad I am.  The pain isn't too bad at the moment and I'm switching to Tramadol and Tylenol PM.  My hope is that I can get my pain under control very soon.  I understand that I'm still in the initial difficult weeks.  The first 3 weeks of LL based upon the diaries and conversations I have read and had are the most challenging and they test you in ways you could have never imagined.  Today, I worked a full 8 hours, I am transferring from bed to wheel chair to walker to bed on my own and I'm ready to take major "steps" forward in the up coming 3rd week.  My left leg is still the "weaker" leg; but it gets better daily.   I don't want to brag to much about my right leg; but I feel like I can kick field goals with it. All joking aside, it's recovering too; but feels great.   Little by little my friends. 

My status at end of week 2:

Pain Average: 

1/10: 5%
2/10: 5%
3/10: 13%
4/10: 25%
5/10: 25%
6/10: 20%
7/10:  4%
8/10:  1%
9/10:  2%
10/10: 0%

Walking Status:

-Walking very slowly and carefully on a walker. Slightly favoring weaker left leg. Mostly fluid steps and full range of motion. Balance is still off and a bit wobbly. Will take some time; but should resolve shortly.

Flexibility and Strength:

-Can lift both legs to full extension while sitting down and laying down
-While sitting, can bend knees beyond 90 degrees up to about 110 degrees ( i think)
-While sitting, with bended knees can lift close to chest with no issue. Right leg is stronger than left however
-Need to work on bending knee while legs are lifted. Have not tried to bend leg to touch butt with foot yet. Advanced movement that I will introduce in week 3.
-Slow and safe side way, leg movements, and nice to see mobility returning with fwd , back, and sideways movement of legs. Ways to go; but it is returning.
-Overall Legs are still tender; but as I mentioned, improving every day and haven't pushed hard with PT yet (won't push for first 2 weeks), week 3, we start to go harder.

Guy's, other than that, just going day by day. Let me know if you  have any questions.   Onward and upward.

Best Regards,

 

[Movie]

Awesome Diary so far ! I'm going to be doing my surgery with Dr. Mahboubian as well since I reside in East LA!
Keep pushing! I'll be following your diary sending positive vibes and support

[superusercj1]

Very good diary!

Forgot to mention one tip that happened to myself and a couple of friends, later on during your lengthening we started missing cycles, and started having leg discrepancy.

I’m not sure why my friends had it, but for me, I stopped lengthening in the bed but rather started sitting in the chair.  Well what happens when you do that is you flex your quadriceps. When this happens the magnet has less ability to make good contact. Toward the end I went 14 days on my right leg and only had 3 days worth of length. So advice, do it in bed and relax your quad for maximum contact, also give it slight pressure for good contact.  If I had to guess, it happened in my friends because you start to regain your quadriceps and if you have big quadriceps magnet contact becomes an issue.  Infant for me, immediately post op they had me lengthening from the side before going on top because I started out with big quads.

[InFullStryde]

Very good diary!

Forgot to mention one tip that happened to myself and a couple of friends, later on during your lengthening we started missing cycles, and started having leg discrepancy.

I’m not sure why my friends had it, but for me, I stopped lengthening in the bed but rather started sitting in the chair.  Well what happens when you do that is you flex your quadriceps. When this happens the magnet has less ability to make good contact. Toward the end I went 14 days on my right leg and only had 3 days worth of length. So advice, do it in bed and relax your quad for maximum contact, also give it slight pressure for good contact.  If I had to guess, it happened in my friends because you start to regain your quadriceps and if you have big quadriceps magnet contact becomes an issue.  Infant for me, immediately post op they had me lengthening from the side before going on top because I started out with big quads.

This sounds like a great expert tip to me! I have been doing my lengthening, so far, from my chair, with partially straitened leg since the wheelchair had elevated foot rests.   My quads are not large and I do apply a bit of pressure myself.  That is so interesting that they had you lengthen by placing the device on the side! I suppose, that so long that the device is lined up properly that it will elongate regardless of where the ERC is placed.  I place on top of the leg, central to the area where Dr. M drew the line on my legs.  Friday, January 25th, will be x-ray day and I'll report back on if any issue occurred for me while lengthening and sitting!

[InFullStryde]

Awesome Diary so far ! I'm going to be doing my surgery with Dr. Mahboubian as well since I reside in East LA!
Keep pushing! I'll be following your diary sending positive vibes and support

Awesome, man. I could use all the support available! So far, so good with Dr. M! Follow close and I'll be as detailed as possible.  It's important that everyone knows what to expect when it comes to CLL.  We can eventually connect over the phone to review once I'm deeper into the process here.

[InFullStryde]

Day 15 - Walking taller and continuing to Stryde [7.92mm Taller]

I surely hope that each of you had a great week.  My week was pretty decent and of course, it was like no other week I have experienced in my entire life. 

 Basic summary of the day...

-Worked a complete 8 hour work day. 
-Had a great PT session
-My friend brought over some fish taco's yum
-Pain level was at average a 2 or 3! Tramadol worked much better for me then the Norco and I don't feel the harsh side effects that Norco brings

Highlight of my day...

Well that would definitely have to be the thrill of the PT Session.  I assume that in another month or so the days are going to become quite routine and perhaps even boring; however, during the early stages of CLL, the CLL'er is always looking for every tiny glimpse of improvement.  Today, at PT, i walked well over 100+ steps, with the walker...high knees, leg over leg... So that was great. One minor little issue at the moment however. My notorious left leg has a tendency of wanting to bend inward a bit and hence my feet are too close together when I walk. My right leg, is strong and no issue at all.   This is just one of those post surgery things that should eventually go away once all the muscles reactivate, are strong, and ready to go.   In talking to other LL'ers, who have experienced similar issues and hear that this typically goes away in and around week 4/5.  The key is to keep walking and focus on keeping the leg outward.   It's important to note that my leg isn't stuck inward; it just seems to want to go that way. I can keep it outward if I'm conscious about it.   Either way, I'll have Dr. M look at it next Friday during my follow up visit. 

All-in-All a good day guys.   Lower pain, walking with the walker, getting stronger and mastering a routine hopefully that will allow me to gracefully glide through these next few 4-5 months in "Stryde".  One other fun note. You have to love the new Stryde nail.  I was fullly weight bearing on it, while on the walker. The walker mainly just kept me balance.   It's a real workout for your legs when you can have that body weight bearing down on those legs.  Once I am able to balance well enough on my legs I should be on crutches and cane.  That could be 1 month from now, or 2, not sure; but just going to play it safe and focus on doing my part correctly.

As far as lengthening goes, I do feel tighter; but nothing major.  I am massaging the soft tissue and continuing to stretch around the clock. 

Okay, Guys...That is all I got for now but please feel free to ask questions.   

[MichaelJose]

Excellent to hear!

[InFullStryde]

Bonus Update

Hi guys, just a bonus update. I woke up a bit ago and did my lengthening and all worked out well.   I will still do my day 16 update later this evening; but I wanted to include this bonus update since its a positive thing to share.    I finally got a good night sleep!  My switching over to the pain medication, Tramadol, away from  Norco, and taking 2 Tramadol's every 4 hours and then at about 1 hour before bed time, I took 2 Tylenol PMs'.....this combination provided for a rested night and my legs did not bother me much at all.    I just wanted to share this, in case any current or future CLL'ers struggle with pain, especially within the first few weeks.  My pain level, which had been on average between 4-6/7...is down to a 2/3..sometimes 1.  It has only been 1 day; but I will let you all know if this trend continues; especially as I get into the 4th/5th cm.

I'll be back later with more update on how Day 16 went.

[InFullStryde]

Day 16 - Another Day in the Books. Very low pain level, left leg still being a pest [8.91mm Taller]

Good day LL'ers.  Today was pretty mellow and not a ton to report. I kept myself pretty comfortable; however I was stretching my legs the entire day it felt like.   Sometimes; I find myself stretching just to test the leg out; especially after a lengthening.  My pain level is the lowest it has been since the surgery and that is making this process a lot easier to deal with.  I would say that my pain was at average a 1 or 2 today and at most a 3.  The change in my medication has been key for me.   I am taking 2 Tramadol every 2 hours and a 2 Tylenol Pm's before bed time.  It's on the higher side of the dosage meter; but it's safe and this is a  big time for me in getting past the rough pain section of this procedure (The first 3 to 4 weeks).   

All the walking I did yesterday just fostered a minor set back... My left leg/knee is bothering me.  Its really around the nail site and up the leg.   I'm going to chalk this up to surgical inflammation guys and the fact that my left leg was likely weaker going into this procedure.  I can remember 2 weeks ago when I first had the surgery; I could barely even touch my left leg w/o letting out a shrieking sound.  Well, now, I can lift it up, touch it and even put some weight on it while walking w/ the walker and it does fine.   The balance is off however...so I have to be very careful while walking.   Also, my ability to take agile steps to the side is limited still.  It's all about forward and backward steps right now.  Guys, this is all apart of the process of recovery.  Only the strong will survive and I know I am one of the strong ones and I'm sure you are too. Feel free to ask me any questions you might have.  Tomorrow will mark 1 centimeter of growth and I'm excited to report that here on the boards with all of you tomorrow evening. 

Nothing else is really note worth for today.   

Here are additional thoughts below:

-Buy a good walker that fits your size well.  If you are on the shorter side of the spectrum like me (5'1.25"), then its worth getting a jr walker so that you can adjust the height to fit you. No shame in that; get what will fit you well.

-I want to reemphasize to all CLL'ers that you will need someone with you who is supportive and on your side and willing to help you for up to at least 3 weeks and ideally 4 weeks.  The pain and tenderness of your legs after surgery is such that you would be safest to have someone near by to assist you with complicated tasks that require bending, reaching, etc.

-Keep those legs moving! Check this out - works well https://www.amazon.com/gp/product/B00B1VDNQA/ref=ppx_yo_dt_b_asin_title_o06__o00_s00?ie=UTF8&psc=1

-A belt that you should have on when your caregiver is helping you walk - https://www.amazon.com/gp/product/B00YW8USKI/ref=ppx_yo_dt_b_asin_title_o00__o00_s00?ie=UTF8&psc=1  If you start to lose balance or fall, they can lift you with this belt.

-Jr. Walker that Fits shorter height level men (4'6" to 5'5") Its alot more affective to have a walker that fits you snug vs. trying to fit the standard - https://www.amazon.com/gp/product/B00A3RAAFU/ref=ppx_yo_dt_b_asin_title_o04__o00_s00?ie=UTF8&psc=1

-Another tid bit; you will not be able to move around much; so i recommend getting a portable cooling fan, and portable heater and have them near by your resting area; so that you can climate control your space.  From a Wheelchair or when you are not very mobile; you may not be able to reach the A/C or heater button.  Think ahead and if you can have these things remote controlled even better.

-Feedback so far on Dr. Mahboubian.  He get's an A so far.   I cannot feel the nails in my legs which is good.   I have barely any pain after 2 weeks.  He answered my one 10:00pm call the day after surgery because I was concerned with swelling. He told me to apply ice and swelling was gone in 15 minutes.   He answers every email same day or next day.  He prescribed me alternate pain medication same day requested, when I told him Norco wasn't working.  So far so good, guys.


Question to CLL'er Community

Any tips on muscle/joint pain relief?   Creams? Oils? Techniques? etc.

[kkt122]

Overall, how easy is it to bear the pain? Would you describe the pain as unbearable or do you think it's pretty manageable and definitely worth it?

[InFullStryde]

Pain isn't too bad at all. It's worth it.  3 inches of height is worth the amount of pain I'm going through.  If i can stay strong for 2.5 more months, this will be worth it. 

[InFullStryde]

Day 17 - Good day. [9.99mm Taller]

Good day overall. Watched some good football and kept my leg stretched out look forward to some physio tomorrow.  I'm in the wheels chair and walker at the moment. Hoping that I can graduate off the wheel chair in 2 - 3 weeks.   Hope you all had a great day!  I have reached 1 CM.

Best regards,

[Cr7]

Hello infullstryde, can u pls post some photos and x rays, that would be very  good for the people on the forum.Hope your recovery and lenthening keeps on getting better.

[InFullStryde]

Hello infullstryde, can u pls post some photos and x rays, that would be very  good for the people on the forum.Hope your recovery and lenthening keeps on getting better.

My first post surgery x-rays which include my lengthening is on Friday, January 25th. I will try to take some pictures of those and post for the community.

[Cr7]

My first post surgery x-rays which include my lengthening is on Friday, January 25th. I will try to take some pictures of those and post for the community.

Indeed that would be very helpful brother. Keep strong and achieve your goals. Lenthen and recover with the same positive mindset (it's kind of rare on this forum these days) that u have right now.

[BladeRunner]

You mentioned you hired an caretaker.
May I ask what specific things the caretaker do?
- Making food
- Helping you with stretching ?

[InFullStryde]

You mentioned you hired an caretaker.
May I ask what specific things the caretaker do?
- Making food
- Helping you with stretching ?

Hi BladeRunner,

It is absolutely needed that you have a supportive person whether it be family or caretaker for the first 3 weeks. I recommend up to 4 weeks, at least.  If you can have someone with you for the entire distraction phase that is even better. 

My current approach is the following:

My Sister helps me get started in the day - picks up things around my apartment, cleans dirty dishes, refreshing my vanity, fresh water and makes sure everything I need is within easy reach of my arms.   She also helps me with PT.  Basically, she pushes me to stretch more deeply, which is important.

My brother helps me in the evening and is spending night in my apartment also. In the beginning he helped me get to bed, and cleaned up around my place and prepared me for the evening. My brother also helps me with PT

I also, interviewed a care taker service and met with a care taker one time. I wanted to know what was available.  I haven't used very much; but I have an agency I can call now and pay about $25/hour to take care of me on some hours where I need special assistance and no family member is available for me.

I do formal PT with Physical Therapist Home Health 3 days a week at the moment.   

  A Caretaker basically should take care of anything you need; including helping you transfer to bed, toilet, prepare meals, etc.   I have my meals home delivered to me so that there is very little prep.  I also use the Amazon Fresh for random groceries and things.  I have tried to make everything as streamlined as possible.  I will create a "game plan" for all future CLL'ers so that they are ready when they decide to go forward with this.

[InFullStryde]

Day 18 - Challenging PT Session, Left leg started out rough, ended well and using walker more and more [1.122 Centimeters Taller] 

Greetings LL'ers.  Day 18 was a pretty decent one. I will say this... My left leg remains my biggest challenge.  It is very sore at the knee and quad area and slows me down a bit. I will say this; the left leg IS still able to weight bear and I'm able to do wide range of motion stretches with it.  When it comes to walking; the left leg is still tender. I'm going to keep working on it. This is just one of those things you discover the hard way; but you get through it.   Each day the left leg gets a bit better; slowly yet surely.   

Physical Therapy today was rigorous! My PT Pro, had me up on my legs with no walker, doing stretches to my chest, side stepping, holding onto my kitchen counter for dear life and circling it! ..You name it he had be doing it haha.  I guess PT really does stand for pain and torture! All joking aside; he gave me a good work out and I learn about new PT training tips each time he comes and apply them to my private rehab.  Remember WALKING is the best mode of PT. If you're walking all the time and you can tolerate it; you are doing 75% or more of what is needed to maintain your lengthening goals.  Having said that; DO NOT push it the first 1 -3 weeks. Take it easier.  Let those surgery pains and inflammation heal and settle a bit.

Other than PT; I am able to easily transfer to my bed.  I'm using my walker to get to my bathroom sink, use the toliet, and I hope to conquer the shower by the end of the week. Still figuring this one out a bit.    Another thing I'm going to try; since I'm getting fairly comfortable on the walker, Is working out on my BowFlex.   This is a pretty decent workout machine; but it was hard for me to use it the first couple of weeks since it requires you to stand and sit.  Tomorrow, I may give this a shot. I'll keep you all posted.

Other things I did today while LL'ing... I worked a complete work day of  8 hours, sat outside for a bit, and watched some YouTube videos.   Everything is pretty calm.  I'm hoping that this week I really see some magical 3rd week healing of my left leg.  Once that is resolved; I'm going to be an excellent shape.  I love the Styrde nail by the way.   I am able to fully weight bear which is making for a great productive workout.   

Pain level today was 2 or 3.  Pain really was not a factor today.  Hoping this trend continues.

Okay guys, I'm over 1 centimeter...every 10 days means another centimeter.  Send me some good vibes for that left leg to get stronger! The right leg...well like I said before...I can kick a field goal with it...It's pretty strong.

Take care and best regards, talk to you tomorrow!

[InFullStryde]

Day 19 - Another day in the Books.  100% walker and 100% Weight bearing!  (But I do like to roll around in the Wheelchair, sometimes)....Healing slowly; but key word is "Healing" [1.188 Centimeters Taller] 

How we doing today LL'ers?  I have said this quote in the past and I'll put it up on the board again and likely will put it again.... In life there are things we want to change in someway...sometimes its your height, maybe it's your income, your relationships, etc...it can be anything.. The key to resolving any matters of the heart is to place yourself into a "process".  Once you're in the "Process", your effort and the inevitable passing of time shall carry you forward.   I have barely blinked and I'm already 18 days into this.   I'm almost 25% complete with the distraction phase.   You have to take chances in this life. You only get ONE chance at this life.  Perform your due diligence and go for it! Okay, I'll get off my soap box now here is the summary for the day.

My Pain Level Today = 2 Max...Here is my not so secretive concoction....  2 Tramadol over 4 hours (when pain is reduces over several days reduce to 1 tablet..and adjust to 6 hours)...about 1 hour before bed, take 2 Tylenol PMs. 

My Left Leg Issue = No pain while resting, tenderness when bending and putting weight on it, 100% weight bearing, but requires support and slower movement when walking. Requires Walker also. I have a feeling the left leg issue will take a bit more time to resolve.  With this in mind; I'm going to continue to stretch it out and build strength and weight bear on it.  It will catch up with  my right, in time.

My Walk = Slow, but nice.  I'm 100% weight bearing on my walker. Walker is used to keep me balanced and to assist in exercises. There are many muscles within my legs that are not yet activated. Until those are strong again; my walk will not be where it needs to be. This will take time. Oh, let's not forget the whole I have 2 broken legs part to. :-)

My Typical Day: Wake up at 5:00am Lengthen, Take medication, work out on bow-flex machine, walker myself to bathroom and prep for day, Sit my butt at my home office chair and put in a full 8 hour work day so that my company continues to strive. Mixed in with this is constant stretching, walking using walker, Self-PT and Pro PT as well as family PT. Wind down the night with a movie or maybe some Madden. 

Sleeping: Slept very good last night. No aches and pains.  Still sleeping on back. The nail site/incision areas are still painful to move. I anticipate being able to sleep on side in 2 - 3 weeks,  maybe sooner. I'll be conservative with my estimates.   What helps me? Tylenol PM, a cool wind fan blowing on me (not sure why, but i tend to get hot at night, esp after this procedure), and some sleep/meditation music flowing through my headset. 

The process will get easier and easier and the process will have it's tough spots as I get tighter and tighter; but I'm going to try my best. 

Guys, let me know if you have ANY questions. So far my experience has been just fine and I'm excited about my brand new 1 centimeter of height. I have a brother who is my exact same height and we stood next to each other and he said to me.. "dude you're taller than me".... Made me smile.


Best regards and I'll update again tomorrow

[psilocybe]

Great journal! Great to hear the process has been good for you thus far.

Some questions:

When are you expected to start walking relatively normally? I read about this nail a while ago and was under the impression recovery times are supposed to be substantially quicker and "normal" walking is supposed to take place relatively soon...

Sorry if I missed it, but are you in California? I imagine most people would need to take a flight back after their surgery. Sounds a little daunting.

Are you supposed to go back at some point and have the nail removed?

Thank you

[InFullStryde]

Great journal! Great to hear the process has been good for you thus far.

Some questions:

When are you expected to start walking relatively normally? I read about this nail a while ago and was under the impression recovery times are supposed to be substantially quicker and "normal" walking is supposed to take place relatively soon...

Sorry if I missed it, but are you in California? I imagine most people would need to take a flight back after their surgery. Sounds a little daunting.

Are you supposed to go back at some point and have the nail removed?

Thank you

Hi there Psilocybe! I'm glad to answer any questions for you.  I am expecting to really start to get my walk back in a couple or even a few weeks or so; which would be a bit north of 1 month.  To be honest, my right leg is ready to really take off; but apparently my left leg just took the surgery a little bit tougher than my right so it's slowing down my gait recovery.  I can fully weight bare, meaning, i can stand straight up and down for probably an hour or more (haven't tried), without any support.  I'm thinking during month 2 of this process that the muscles in my legs will re-activate and I'll really start feeling good about my walk soon.  The main difference with the new Stryde nail is that it is weight bearing; meaning you can put  your full weight on the nail without worrying about it breaking.   One must still be able to tolerate their own weight however.  That is where the healing in my left leg comes in. I just need a bit more time. 

I'm actually fortunate enough to live about 45 minutes from Dr. M; so normal transporation is good enough.  In fact, my recovery so far has been 100% in the comfort and privacy of my own home. 

After one year post-op; it's best to have the nail removed.   I hear it's a quick procedure and you're out same day.

Best regards,

[psilocybe]

Thank you for the response.

Wow, that's convenient! How do you think you'd feel if you had to of gone out of state (like Vegas, or Florida) for the procedure?

I'm assuming full weight bearing means your entire body's weight on the one nail (not both legs splitting your weight). I think I read something like the new Precise nail can take up to ~250 pounds?

I wonder what would happen if you didn't get the nail removed...

[InFullStryde]

Yes - exactly.  Full weight bearing means that even one nail can withstand my body weight.

The process would likely be a lot more difficult on me psychologically if I had to leave home.   I would be out of pocket completely to my family life, work, etc.  These things are helping this process go by a lot quicker for me. 

[MichaelJose]

Hey buddy - this is a great diary and thanks for taking the time to write it.

My question is about tramadol - I broke my kneecap 4 years ago and I was given tramadol for the first couple of weeks to pain manage.

For the first couple of days I took 2 tablets at a time and that stuff would be so hard to stay awake on - do you get that same drowsiness? I’m impressed you’re able to work a full day with that stuff.

1 tablet at a time effected my concentration - and definitely would’ve impacted my work output to some degree - how are you finding the affect?

[InFullStryde]

Hi Michael Jose,

Thanks for your question.  There is no doubt that Tramadol will make you drowsy. I have the same symptoms after taking it. For me, I had to pick my challenges there.  The pain was at a dull resting state of 4-6; so I was willing to fight through the drowsy state vs. struggle against the pain.  My advise would be to battle against your pain first; the best you can and then ween off to 1 every 6 hours and eventually, maybe 1 every 8 to 12 hours, and even stop taking the medication all together once your pain is under control.

[7231]

Hi Michael Jose,

Thanks for your question.  There is no doubt that Tramadol will make you drowsy. I have the same symptoms after taking it. For me, I had to pick my challenges there.  The pain was at a dull resting state of 4-6; so I was willing to fight through the drowsy state vs. struggle against the pain.  My advise would be to battle against your pain first; the best you can and then ween off to 1 every 6 hours and eventually, maybe 1 every 8 to 12 hours, and even stop taking the medication all together once your pain is under control.

One question - what is problem with drowsiness? that is better right? I mean sleep helps recover the body and rather than watching tv for 8 hours out of 24 I would rather sleep for 12 or 14, so is not it (drowsiness) a benefit? or am i missing something here?

[InFullStryde]

One question - what is problem with drowsiness? that is better right? I mean sleep helps recover the body and rather than watching tv for 8 hours out of 24 I would rather sleep for 12 or 14, so is not it (drowsiness) a benefit? or am i missing something here?

Hi 7231! I agree with you.  When in heavy pain, especially, I prefer to be drowsy and enjoy sleeping through much of the episode. In this case, I believe MichaelJose is referring to when at work, he is trying to avoid being drowsy.  So far, I have been fortunate enough to be able to work despite being drowsy.  I feel pretty wired right now with everything going on with the CLL procedure; so that could be what is keeping me up.   

Let me know if you have any other questions!   I'll update my diary tonight with how today went. Each day is another adventure.

[InFullStryde]

Day 20 - Concluded Home Health Physical Therapy, Signed up for Outpatient PT (Starting next Thursday!) Long Slow Walk, Ouch - Hurt my Hip Flexor, Recovering, Okay. [1.297 Centimeters Taller]

Today was decent. It did not start out well, however. Piece of advice for all CLL'ers. Sleeping is going to be its very own adventure for you during the early stages of CLL. I suggest having some great pain killers, sleeping medication, etc and making sure that the environment is as comfortable and calming as possible. AND do not twist around or TAKE ANY CHANCES with hurting your legs when turning off lights, reaching for things etc. There is just no reason to aggravate your pain.  Last night, while reaching to turn off the light (a very basic and common movement); I aggravated my left leg pin site around the hip flex-or. OUCH! It went into a cramping cycle for most of the next day.  When you strain or aggravate your leg, esp, after surgery, your muscles and surrounding muscles go into protector mode...so your entire leg starts to tighten up whenever you move that area.  Needless to say it was rough.  My left leg did battle through it however as i forged on with my home health physical therapy.  The leg is actually feeling okay now. I just iced it on and off all day and I anticipate it feeling good again by Friday.

I'm up on my walker now and performing all needed tasks at home on my feet. Albeit, I'm walking slowly; but I'm walking and I'm full weight bearing on the Stryde Nail.  The right leg is so strong and working great. Left leg is trailing behind and we'll just keep building its strength and working toward catching up with the right leg.   Today was actually my last day of "Home Health Inpatient Physical Therapy".   My PT Jason, did a good job getting me back on my feet, keeping me stretched out and getting me through his initial phase of the CLL process.  I'll be stretching and using all the skills I learned from Jason for the next week on my own and with my Brother and Sister....prior to my outpatient PT starting up.  I'm looking forward to the outpatient PT...finally I'll be going outside around people; other people battling with physical challenges and getting some great fresh air to.  I anticipate doing outpatient PT with formal PT Professionals 3 times a week and then the other 4 days of the week; consistently stretching, walking and performing my self-trained PT skills on my legs.   As far as today was concerned I walked the length of about 1/2 a football field! I walked all that way on my new 1/2 inch of height.  That's right. I'm 1/2 inch taller!

Today, I also worked a full 8 hour work day and worked out my chest on my bow-flex home gym.

Other notes, in case you are wondering.  Once you are comfortable with your walker; you are able to pretty much do all the needed things required to sustain a decent life routine through this process.  I prepare my meals, I can move things around (carefully), I'm able to get into my shower chair (carefully); and showering is good to go.  I can get on the toliet...no problem.   I'm 95% walker and i just use the wheel chair whenever I feel like I need to rest any post surgical pain that is lingering.  I'm actually looking to shed the wheel chair within the next few weeks. 

Here is a brief overview of "MY" transitions. These are unique to me and not necessarily what everyone else can expect.

- Week 1 - 100% Wheelchair and needed full time assistance

- Week 2 - 50% Wheelchair and 50% Walker and needed someone to watch over me a bit for safety purposes - My weaker left leg was finally able to deal with movement and weight bearing; so I began to explore using walker and became much more independent. 

-Week 3 (This week) - 95% Walker and only using wheelchair when I want to fully rest a surgical pain.  I could be 100% walker if I wanted to.   I am 95% independent as well.  I only require assistance for any objects that require a more awkward type of movement.

-Week 4 Goals (Next week) 100% Walker, Further smooth out the walk and have a more stronger left leg to work with during my first outpatient PT next Thursday.

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Guys, all in all.  Everything is fine at the moment.  Dr. M has done a good job with my legs. No swelling at all; nice soft calm legs. You woudn't even know anything had been done to them unless you saw me walk.  Had it not been for my left leg being a bit weaker (unforseen); I believe that I could probably walk without any assistance already on these great Stryde nails.   I literally stand up without any assistance all day long with perfect balance.  How is that for some great PT? Full weight bearing and standing! 

Okay, I'm going to sign out for now.   My first x-rays will be on Friday. I hope to see that 1/2 inch that I'm measuring on my own.

Best regards,

[Megatron]

great diary man. Hope you reach your height goal without any pain or complications along the way. I wanted to ask you if you resided in a different state that required you to take a flight back there what day after your procedure do you think you would be able to take the flight back without it feeling like a major hassle. Like a 4 hour flight in particular.

[InFullStryde]

great diary man. Hope you reach your height goal without any pain or complications along the way. I wanted to ask you if you resided in a different state that required you to take a flight back there what day after your procedure do you think you would be able to take the flight back without it feeling like a major hassle. Like a 4 hour flight in particular.

Good day Megatron! Thank you for the question.  I really want everyone to ask questions because I think it's so important that everyone truly understand what this surgery is all about for a fairly typical candidate (myself). 

Megatron, I had my surgery on the  morning of January the 3rd.  I was actually fortunate enough to be living and settled only 45 minutes away from Dr. M; so its quite convenient and almost feels like a regular doctors visit. 

Let's be hypothetical and imagine what it would be like if I had to take a plane flight home.  Okay, I would say, after a 3 day day in the hospital; I would probably hang around town for at least the first follow up visit with Dr. M.  Knowing that you are going to be leaving soon; he may even schedule initial x-rays earlier than he did for me.  My first x-rays aren't until Friday (again, me and Dr. M are neighbors practically).   I would say at about day 7-10 you should be able to fairly swiftly travel via plane.  You will want to make before hand accommodates with the airport and airline for a full 360 accommodate to your condition.   I know money is always tight; but budget appropriately.   Travel comfortable for yourself and keep yourself safe.  So, 7 Days is cutting it close to travel, 10 days a bit better, 14 days is really nice because you will be feeling much better by this time (not perfect, but better).  Ask Dr. M and staff questions, questions, questions... do not leave California without knowing everything you need to know; especially since you will not be here after surgery for the most part.    Let me know if any additional concerns or questions you may have and I'll provide the best feedback possible.

Directly answering your question - 4 hour flight should be fine at day 7 or beyond, take some pain pills and make sure you have accommodations ready for you at the airport so that you transition smoothly.  I would use wheelchair van transport to get you to Airport and to pick you up and take you home.