My Femur Stryde LL (with Dr. Debiparshad) diary

I will be methodical in writing so as to help you - i) understand my journey and ii) learn from my knowledge and experience to plan yours. Notes - 1. I will put some pics as and when I feel like, should be sufficient as proof but I may or may not post what you want me to 2. I may not be regular in updating the diary, sometimes I will update frequently, sometimes not for a long time, and I cannot and will not explain why so, what I can say is at the very end the diary will be a complete diary, but it may take long time.

About me - Indian Citizen Male who studied in US and is working in silicon valley (as senior program manager, not as engineer), aged 37. Not unhealthy, not very healthy, medium fit but high upper body strength and very high mental strength. "VEGETERIAN all my life". 5'3" to 5'3.5" current height.

why I want height ? otherwise I am quite good looking and with height would be really good looking, I have nice inner personality I want nice outer personality as well.

how i learned of LL? through old forum  and this forum.

which doctors i was considering ? I wanted weight bearing nail, given my budget I was considering Betz, Gichet , Giotikas and Mahboubian. After more research and based on email exchanges I finalized Giotikas for stryde (primarily because his solid resume and impeccable cost). I did phone consult and set up surgery date but the visa thing became a big hurdle, so after a lot of thought I decided I will do it in US. based on my budget I first looked into mahboubian and went for in person consultation, meanwhile I learned about Dr D. and went for in person consultation as well. I liked both doctors and was struggling to decide which to chose, (cost was similar Dr. M was cheaper by 3k), one big differentiating factor here became Dr. D's assistant Ronnie. During consultation Ronnie talked to me separately and I felt safe and secured with him and realized that he is a nice guy who wold help me through thick and thin (and he has been even more awesome ever since, more so on him in next posts) and on the other hand Dr. M's assistants were pathetic in answering questions.  Anyway, I finalized Dr. D. for surgery on 7/19 7 AM PST. Note: pre-op clearane was done on the day I had went to Henderson for consultation.

1. Day before surgery (7/18) - checked into hotel and set up foods, clothes etc. I had it booked for 2 weeks. went to Dr.'s office and made full payment. Was told not to eat or drink after midnight. Filled my prescription from a pharmacy.

2. Surgery day (7/19) till hospital discharge day (7/21) - checked in (in a nearby Las Vegas hospital), was put on table (after putting the needles etc. gown etc., tests etc, the usual BS), was talking then don't remember anything...woke up with some voices talking around me giving my status. It was in a hospital bed, in a big hall with many patients, was kept on pain medicine and don't remember much, was transferred to private room at night. Nurses kept checking on me. Most nurses and assistants were awesome, 2 assistants were idiots (don't want to go to details, have no proof and nothing happened but I recommend you do not dangle your premium credit cards wallet i the open while asleep). Food was  ty, so did not eat much, peed a lot through catheter. Realized that I have to ask for pain medicine when I need it, was asking Dilaudid, because that was one working like magic , taking away all pain in seconds and was making me sleep well, other medicines were joke. on 20th morning I had to forcefully remind them of giving me Xarelto and they did (doctor said he had prescribed and they would probably have given me anyway and maybe I asked them just before they might have given me. maybe - but I am not sure - I don't trust the nurses - they might have forgot as well who knows). They refused to give dilaudid 8 hours before my discharge. I called uber, I also called Ronnie, the hospital's staff, Ronnie helped me get into the uber and Ronnie and an aid I had pre-hired at the hotel helped moved me and my stuff to my hotel room.

Next on next post.....

continued..

between 7/19 to 7/21 (hospotal stay) - I had 2 PT sessions done by hospital PTs, they were awesome, one named Mandy is just like an gel the other (forgot name) is also an angel. but there was one real bad experience as well (not anybody's fault) - I was on pain 0 (min) to 5 (max) all 3 days, but I made a mistake - after catheter was taken out (which is an experience one must have once in lifetime just to experience it, it is nothing you can imagine, it is something like real weird  , though I will not say very painful, it is actually like pain level 2/3 but the feeling is something different) - I asked PT to help me (assisted) walk to the restroom so that I can pee (bladder was full) and after -5 minutes struggle I peed and man it was awesome - I peed like I was about to flood las vegas, maybe like 1 litre, anyway - one interesting thing happened while I was peeing, 2 nurses (who were on that shift, and they were angels the best) came running into my room and I could hear them asking the PT (who was waiting outside restroom) where am I, she said I am peeing inside, anyway I came out after flooding las vegas (with happy face) and askd the nurses what happened? they said while I was peeing the heart beat rate shot upto like 140 (they can see remotely) !! I laughed sayign maybe because I was peeing away like crazy, they also laughed. Now, the bad part - next day (7/21) I told my PT that just like I peed in restroom yesterday I want to take dump today (remember I was like 3 days without bowel movement and wanted a clean stomach because in normal life I poo every day, at times twice) and she should assist me seat on the commode (note- all this while I was walking using a walker with minimal assistance from PT) she said that is great idea. we went to restroom, I sat on commode, here note - my tibia is short and feet cannot fully reach ground, only like fingers, anyway I told PT that just like my peeing session I will try for 5 minutes and she can wait outside, she got a call from somebody and said she will be back in 10 minutes while I can try pooping. 5 minutes passed, I could not pee and pain started shotting up (due to the uneven commode and due to my feet not being able to fully touch ground), the pain kept increasing and gradually went to 10, I tried to man up and hold thinking PT will be back and get me up and out but she did not come even after 12 minutes, I ran the alarm bell , the nurse's assistant ( a not so bright lady) came and she could see I am almost crying, she said she could help you get up, but she is thin and I knew even if she were strong she would not be able tosupport me stand ()and falling would mean doom) because - i) my rigth feet was numb, ii) my right feet did not want to move no matter if you kill me I could not have, it was like 11/10 pain, only a PT could have done some rbubing etc. to sooth it and help me get up, she called PT lady and PT said she will come in 2 minutes, but even after 5 minutes nobody came, I keep crying and yelling like crazy in pain (have never felt that pain in my 37 years if life), I thought i will simply just stand up using my full mental tenacity/strength but I knew I will fall down even before I am up 1 inch, at last ordeal ended and the PT came, she was trying to help me get up with force support from her but I knew unless my right feet is numb I will fall, she (and I) did some rubbing etc to make the feet awake again and ten using my maximum willpower I was up. That moment onwards I decided I will never go and set on toilet seat for long unless I am well recovered. Other than this one, I have no unpleasant moment at the hospital (first 3 days) and it was actually very less painful (like mostly 0 to 3) most of the time, in fact Dr. D asked me what do I think about the prevalent thoughts (I had told him that I found about him on this forum and I use this forum for info. gatheing over years fir my LL plan) on pain level during LL and actual pain level am experiencing - I said see, normally when you just on bed resting or walking slowly with walker pain is like minimal (0 to 1/2) but there are moments when you try to do things that require a little more strain - like trying to sleep on side, trying to bend the knees a bit more, it hurts like crazy and that pain reaches 7 to 10 easily, and another thing to note is even things that are not painful sometimes, you will surprisingly see that another time that same activity may actually suddenly give you a 7-8 pain (this phenomena is like a puzzle to me, though I have a theory to explain this).

Continued.. I am getting some queries in PM on how is  the doctor and support staff etc. so here is my response -

Regarding doctor - I met him 5 times, once during consultation, once during pre-surgery day, then on the day of surgery and then for a few minutes on the other 2 days I was in hospital. All my interactions were brief and he answered all the questions I had satisfactorily in a simple, to-the-point and concise manner, as a person - to me he seems like a humble and simple down to earth guy who understands the procedure very well and takes pride in his work. next I will meet him during my 2 weeks post surgery visit.

Regarding doctor's secretary/admin Teresa - she was super accessible when I was trying to set up consultation and get answers to questions (before surgery) and that was one thing that I really liked and she even told me ''don't worry we will always be available at your disposal should you need any help' , but I am sorry to say that the 2 times I had called her after (I had made the payment and finalized my surgery) she never took my call, and in fact disconnected my call. I don't know what is going on (I hope all is well with her), maybe she is busy or whatever but at least a text would have been nice and this sudden 180 degree change in being supper accessible (before I signed up for surgery) to disconnecting phone and not responding (after I set up surgery) is something that has not gone down well with me (what if it is like an emergency kind of need? she knows I am doing the LL alone and I don't have doctor's direct number. Fortunately for me those were not emergency situations but the fact that calls were ignored is not very professional thing, especially during the crucial period of 2-3 days post surgery). So, I have decided not to call her again, anyway I have access to doctor's assistant Ronnie who is super accessible and helpful.

Regarding doctor's assistant Ronnie  - He is a gem, he is like my sunshine during this LL journey, my brother. I cannot list down the helps and things he has done for me (the list will become too big) and it is because of him that I would 1000% recommend Dr. D to anybody for this surgery. This guy is the most helpful, humble and kind and good hearted guy I have ever met, period. Ronnie was one of the biggest reasons I had chosen Dr. D (when I was in dilemma between choosing Dr. D and Dr. M) and If given the option to do the surgery again (I may do tibia after 2-3 years), I will do it with Dr. D just because of Ronnie (of course Dr. D is also very good doctor, but my primary factor to chose him would be Ronnie). I wish him huge success in life, he deserves it with his work ethic.

Hey Lalbasshah,

Thank you for starting a diary.  Did Dr. D required you to do the ILIOTIBIAL BAND RELEASE?

Thanks

Quote from: azman on July 27, 2019, 09:58:43 PMHey Lalbasshah,

Thank you for starting a diary.  Did Dr. D required you to do the ILIOTIBIAL BAND RELEASE?

Thanks

Yes

Now, I would like to add my input on whether you can do this thing alone or not. Here is what I think -

1. Doing this completely alone is almost impossible (I know people have done it, still I think it is almost impossible) unless by 'alone' you mean there is somebody coming to give you food at your bed and somehow you have figured out an option of pooing while on bed (can't think how that is possible) or you can withstand the feeling that you will have while not pooing for for around 6-7 days. This would also require very very high upper body strength. IMPOSSIBLE for a girl or thin men. Close to impossible or very difficult for a man with strong arms.

2. With hiring aide for a few hours, very much possible - that is what I am doing. Still, if you will not have the aid with you at night then you need very high upper body strength - very very difficult for girls or thin men.

So, my recommendation for women and thin men would be - don't even think of doing it alone - you can't. even with hiring aide for a few hours you will struggle, for girls and thin men I really beg you - bring family member or partner with you.

For males with good muscle strength - doing it alone will be close to impossible but doing with aides hired for a few hours - yes very much possible without much difficulty.

Hey Lalbadshah - first off congrats on starting down this amazing but difficult journey! And thanks so much for being so detailed in your write ups, I'm sure many of us planning for CLL now will benefit greatly from the information you're sharing.

A couple questions:

1) When you talk about hiring an aide for a few hours - during what part of the day do you find yourself needing help the most?
2) How did you go about finding an aide? Any particular websites or did you just find one through friends or the hospital?

Hey Lalbadshah, glad there is now a second diary for Dr. Debiparshad. I look forward to reading your diary. I also sent you a private message. Happy to weigh in and offer advice as needed.

I agree with you entirely about Ronnie - he really is a gem. Teresa is very good about returning calls/texts during work hours. If you contact her during the weekend then you probably won't hear back until Monday. Remember you can always text Ronnie or Dan from NuVasive and both of them are able to contact Dr. D. at all hours if there is an emergency. The other name you mentioned - Mandy the PT at the hospital - is also fantastic.

Quote from: Lalbadshah on July 27, 2019, 10:24:23 PMNow, I would like to add my input on whether you can do this thing alone or not. Here is what I think -

1. Doing this completely alone is almost impossible (I know people have done it, still I think it is almost impossible) unless by 'alone' you mean there is somebody coming to give you food at your bed and somehow you have figured out an option of pooing while on bed (can't think how that is possible) or you can withstand the feeling that you will have while not pooing for for around 6-7 days. This would also require very very high upper body strength. IMPOSSIBLE for a girl or thin men. Close to impossible or very difficult for a man with strong arms.

2. With hiring aide for a few hours, very much possible - that is what I am doing. Still, if you will not have the aid with you at night then you need very high upper body strength - very very difficult for girls or thin men.

So, my recommendation for women and thin men would be - don't even think of doing it alone - you can't. even with hiring aide for a few hours you will struggle, for girls and thin men I really beg you - bring family member or partner with you.

For males with good muscle strength - doing it alone will be close to impossible but doing with aides hired for a few hours - yes very much possible without much difficulty.

So my view is slightly different from yours about doing it without a caretaker. I did not use a caretaker for a single hour. I have decent muscle strength, and I feel it was very possible to do it entirely alone but you need to be aware that it is going to be very difficult. Still, with a portable urinal (and more importantly - your meds) by your side and if you can get the hotel staff to open the door to let Uber Eats in and you use Walmart grocery delivery or another grocery delivery service, it's very doable. I don't know what else one would use a caretaker for besides helping them get to the bathroom - especially overnight. In my case, they would've been doing little more than watching me sleep   Since you used a caretaker, it would be great for others who may use Dr. D. to have their contact info. I was actually trying to hire a caretaker but never received a call. The other options wanted a commitment to a minimum # of hours that I wasn't prepared to make.

I know you were able to poop much earlier than I was able to, and maybe if I needed to sit down on the toilet on day 2 or so my view would be different. It took me a good 5 days post surgery before I could go, and that was only because I took stool softener the day before. Of course, sitting down on the toilet for the first time was very difficult but I was able to maneuver myself using the accessible room wall bars.

You must be feeling so much better. I remember especially in the first two weeks that each day felt so much better than the previous day. You've made it past the hardest part! Good luck to you!

Quote from: verticalpush on July 28, 2019, 01:07:34 AMHey Lalbadshah, glad there is now a second diary for Dr. Debiparshad. I look forward to reading your diary. I also sent you a private message. Happy to weigh in and offer advice as needed.

I agree with you entirely about Ronnie - he really is a gem. Teresa is very good about returning calls/texts during work hours. If you contact her during the weekend then you probably won't hear back until Monday. Remember you can always text Ronnie or Dan from NuVasive and both of them are able to contact Dr. D. at all hours if there is an emergency. The other name you mentioned - Mandy the PT at the hospital - is also fantastic.

So my view is slightly different from yours about doing it without a caretaker. I did not use a caretaker for a single hour. I have decent muscle strength, and I feel it was very possible to do it entirely alone but you need to be aware that it is going to be very difficult. Still, with a portable urinal (and more importantly - your meds) by your side and if you can get the hotel staff to open the door to let Uber Eats in and you use Walmart grocery delivery or another grocery delivery service, it's very doable. I don't know what else one would use a caretaker for besides helping them get to the bathroom - especially overnight. In my case, they would've been doing little more than watching me sleep   Since you used a caretaker, it would be great for others who may use Dr. D. to have their contact info. I was actually trying to hire a caretaker but never received a call. The other options wanted a commitment to a minimum # of hours that I wasn't prepared to make.

I know you were able to poop much earlier than I was able to, and maybe if I needed to sit down on the toilet on day 2 or so my view would be different. It took me a good 5 days post surgery before I could go, and that was only because I took stool softener the day before. Of course, sitting down on the toilet for the first time was very difficult but I was able to maneuver myself using the accessible room wall bars.

You must be feeling so much better. I remember especially in the first two weeks that each day felt so much better than the previous day. You've made it past the hardest part! Good luck to you!

Hei bro, yes I will give you a call, actually I had tried calling you twice before my surgery - always went to voicemail (maybe you were busy), anyway will try again. Agree on Ronnie - he is a real gem. Good idea about Dan, I will try to find his card and keep it handy in case I need his advice any time.

I know you did without caretaker, it is just that if you think of some variables - if some things might have turned a little different/negative you may have had issues without a caretaker (think about Fallen774's case - on his fifth day diary) - that is why my personal recommendation/believe is not to to without any caretaker at all, at night of course you don't need. Yes man, the problem is the minimum hours commitment thing, I agree.

Actually it seems we were able to poop on same day (post surgery), and I must thank you for that because - I was able to poop only after taking what you recommended (dulcolax) - it came out like a big anaconda coming out from my ass . LOL. Though my peeing seemed to have been easier than yours - I was peeling well with catheter on and even after catheter off I peed well.

You are right, each passing day is better than previous one. man, when you are planning to be back to Henderson (whenever) let me know (here or PM) and we will see if there is any date when both of us plan to be here and can meet. All the best bro.

Quote from: JsElysianEagle on July 28, 2019, 12:26:30 AMHey Lalbadshah - first off congrats on starting down this amazing but difficult journey! And thanks so much for being so detailed in your write ups, I'm sure many of us planning for CLL now will benefit greatly from the information you're sharing.

A couple questions:

1) When you talk about hiring an aide for a few hours - during what part of the day do you find yourself needing help the most?
2) How did you go about finding an aide? Any particular websites or did you just find one through friends or the hospital?

1) this is more of a personal choice based on your plan and you can always change the hours, for example I just changed my hours to suit my PT session hours so that my aide can take me to the PT (i.e. helping me switch between wheelchair and walker and gelp me get into uber and then put the walker and wheelchair in uber and do same thing while I am coming back to hotel from PT). I would recommend you plan in such a way that - i) your urinal dumping/cleaning, water/filter filling up/food prep/warm up, your move to the commode and back, your walkign session wit walker and physical therapy - these 6 things can be covered, now - depednign upon your need/situation you may actually need the caretaker to help wit only 4 of these 6 or 5 o these 6 or all 6 of these , that depends on you, but this list of 6 things is (I believe an exhaustive list of things that caretaker help can be used for).

2) Doctor's admin (Teresa) called up one service provider and they called me and I used them for 3 days but they were very unprofessional, so I stopped using them and found one on my own on internet which is a little costlier than the one recommended by doctor's office but is awesome, they are so methodical, organized etc. that I ,who work with multiple fortune 500 companies, can say the professional way they operate can put big multinationals to shame. There are many others, an online search will give you whole list.  If you want name of the one I am using let me know and I can PM you.