Topic: My Journey with Dr Pili(HEF) (Read 35166 times)

fivetenneeded2016 · « **on:** April 25, 2018, 08:02:57 PM »

Hi all, I have my surgery tomorrow with Dr Pili. I would keep the diary updated once or twice every week, providing the synopsis to aspiring LLers, and at times(most times :p) seeking your support, and of-course, guidance from the veterans. And thanks to all for having such a community.

myloginacct · « **Reply #1 on:** April 25, 2018, 08:07:44 PM »

Awesome, FTN!! I hope your surgery and first few weeks go as smoothly and as painlessly as it is possible within the realities of CLL.

Best of luck to you and your legs throughout the whole process.

onemorefoot · « **Reply #2 on:** April 25, 2018, 08:45:02 PM »

Good choice, I Hope the BEST for you during this process.

fivetenneeded2016 · « **Reply #3 on:** April 25, 2018, 08:48:51 PM »

Background

I made my mind to get this surgery, ever since I started working, and therefore the username.
Like any other beginner I had Dr Paley, Dr Guichet, Dr Betz, etc on my list. But then, once when I hit the reality, I thought of limiting myself to tibias, and I started to think of Dr. Pili/Catagni, Dr Barinov, Dr Xia and Dr Parihar.
And last year, if you check my post, I had thought of getting it done then, with Dr. Parihar. But due to personal and financial reasons, I thought of deferring the surgery.

Since it was in back of head for so long, I was unable to focus much at work. I used to think of it almost all times. I used to read the forum daily, the first thing in the morning before I go to work and just after I reach home from work.

Since it had started to affect my work offlate, I finally thought this year, in the beginning, to confirm my dates with Dr Pili after narrowing upon the surgeon. I was really excited after booking my slot. I trained my upper body a bit and my calfs and achilles.

T -7(circa)
Having come to a new country, with no prior exposure to the western world, the first few days I was in awe with the life and the environment here. I went to the hospital the day after I arrived. Dr Pili measured my calfs to decide on the frsmes to use. Later, as I got out, just on the road beside, I saw Dr Catagni on his white Lamborgini. I dont know why but I felt like I pictured him that way before..it was like Deja-Vu, Lol. I was super excited as I would be striking off the top item from my bucketlist in a few more days.

I still need to work with the embassy for extending my visa. I plan to fly back in a week post surgery(If I can just about manage, then I would go back and visit here monthly, but for plan b, I also have funds to stay here for few months). These are some of my concerns currrently.

T -1
I still have my visa to be extended, some prior tests to be done before the surgery. I was assured it would all be taken care of tomorrow.
Currently, I just got back from my last(well, for quite many months :/) normal supper on my free and perfect legs. As I walked I thought to myself, this moment, that I am walking so well, I would miss for a long time. That moment of thought gave me a pinch of anxiety. But still I hope all goes well tomorrow.

fivetenneeded2016 · « **Reply #4 on:** April 25, 2018, 09:41:14 PM »

Thanks a lot, MyLoginAccount and OneMoreFoot

Android · « **Reply #5 on:** April 25, 2018, 09:58:23 PM »

Excellent start! Looking forward to your future success.

Body Builder · « **Reply #6 on:** April 25, 2018, 10:11:54 PM »

Quote from: fivetenneeded2016 on April 25, 2018, 08:02:57 PM

Hi all, I have my surgery tomorrow with Dr Pili. I would keep the diary updated once or twice every week, providing the synopsis to aspiring LLers, and at times(most times :p) seeking your support, and of-course, guidance from the veterans. And thanks to all for having such a community.

Ι am here to help you.
Good luck and keep strong!

fivetenneeded2016 · « **Reply #7 on:** April 27, 2018, 09:00:18 AM »

Thanks, Android and BodyBuilder.
I would definitely need your advices. I am done with my surgery. Currently no pain..except a bit of heavyness on my left leg. I am on no painkillers/IV. I feel Dr catagni too operated, as I saw him too in the OT. There was pain, but only immideately after sugery. Had a good sleep as well. To those who would like to see the photos, I would update it send the link on PM, after I have uploaded.

Only problem i my left leg is not completely staright as my right. Although I expected the opposite, as I previously had ACL on my right knee.
But the doctor said it would go away as i learn to walk, which they would teach today on cructhes.
Hope all goes well.

fivetenneeded2016 · « **Reply #8 on:** April 27, 2018, 10:36:53 AM »

some pics of the ambience
https://imgur.com/gallery/LyMjOxg

fivetenneeded2016 · « **Reply #9 on:** April 27, 2018, 01:14:57 PM »

took my first steps today on a walker..i can lift my legs up quite well. my left leg too feels better than it eas this morning.

next to me lives a family, who are doing it for their second son..he too got his surgery yesterday. Their first son did 9cm +ATL last year. They say he is doing well. swimming/jogging etc.

Argent_Lecter · « **Reply #10 on:** April 27, 2018, 05:11:09 PM »

Hello there,

This is a really nice diary and I'm hoping to do my surgery with Pili on 2021 or so. I have a few questions about the accommodation. How much do you pay for it? and in case of an emergency who do you need to call? are you by yourself or do you have a nurse taking care of you? It would really help me if you answer my doubts. Anyway I hope you are recovering fast, my friend.

Take care.

- A. Lecter

fivetenneeded2016 · « **Reply #11 on:** April 27, 2018, 05:29:13 PM »

Quote from: Argent_Lecter on April 27, 2018, 05:11:09 PM

Hello there,

This is a really nice diary and I'm hoping to do my surgery with Pili on 2021 or so. I have a few questions about the accommodation. How much do you pay for it? and in case of an emergency who do you need to call? are you by yourself or do you have a nurse taking care of you? It would really help me if you answer my doubts. Anyway I hope you are recovering fast, my friend.

Take care.

- A. Lecter

Hey buddy, I had around 30k€ circa. I , initally for the visa, had booked a room for 700€ circa for 10 days. My dad is coming tomrrow to accompany me. For help in hospital you have a button to call the nurse. But I feel you can do it yourself too..depends actually, better to take a help worst case.

costs
The surgery costed 20k€(19.something) which included 2-3 days stay. I would leave tomorrow to my hotel. In case I need to extend my stay i have some cash reserve. If you do it in Lecco, find a local, or a student, they say the cost of living in sharing is around 300-400€, double it, you would have food too included. So 800€ per month..round it to 1k€ and assume uou stay for 5 months, it would total to 25k€ and add another 5k€(upper limit) for ATL if you require. So 30k€ should suffice.

I am doing fine. I walked today..like 15-20 steps, first on walker and then on crutches. Dr even made a video. But now its starting to hurt

Lets see.

Argent_Lecter · « **Reply #12 on:** April 27, 2018, 05:38:04 PM »

Quote from: fivetenneeded2016 on April 27, 2018, 05:29:13 PM

Hey buddy, I had around 30k€ circa. I , initally for the visa, had booked a room for 700€ circa for 10 days. My dad is coming tomrrow to accompany me. For help in hospital you have a button to call the nurse. But I feel you can do it yourself too..depends actually, better to take a help worst case.

costs
The surgery costed 20k€(19.something) which included 2-3 days stay. I would leave tomorrow to my hotel. In case I need to extend my stay i have some cash reserve. If you do it in Lecco, find a local, or a student, they say the cost of living in sharing is around 300-400€, double it, you would have food too included. So 800€ per month..round it to 1k€ and assume uou stay for 5 months, it would total to 25k€ and add another 5k€(upper limit) for ATL if you require. So 30k€ should suffice.

I am doing fine. I walked today..like 15-20 steps, first on walker and then on crutches. Dr even made a video. But now its starting to hurt
Lets see.

Thanks for the reply man!

Okay, I assumed it would be around 30K € which is fine to me and I'm going by myself so I guess I'd share room with a student.

Btw can I PM you?

- A. Lecter

fivetenneeded2016 · « **Reply #13 on:** April 27, 2018, 06:25:20 PM »

sure man

fivetenneeded2016 · « **Reply #14 on:** April 28, 2018, 08:50:07 AM »

Just a quick update, I got the discharge letter from the hospital and I can leave tomorrow or today. I would start lengthening from 10th May. i can keep my legs straight, bend them like sitting on a chair and walk a bit on crutches. Might stay here a couple more days though.

fivetenneeded2016 · « **Reply #15 on:** April 28, 2018, 10:33:35 AM »

frames
http://imgur.com/gallery/uNeVG7d

Argent_Lecter · « **Reply #16 on:** April 28, 2018, 07:51:59 PM »

Quote from: fivetenneeded2016 on April 28, 2018, 10:33:35 AM

frames
http://imgur.com/gallery/uNeVG7d

Man, those frames look good and study! Keep updating it would be nice to see more of your journey. Take care buddy.

- A. Lecter

Android · « **Reply #17 on:** April 28, 2018, 08:03:34 PM »

Quote from: Argent_Lecter on April 28, 2018, 07:51:59 PM

Man, those frames look good and study!

Some may even say they look... HEFty.

fivetenneeded2016 · « **Reply #18 on:** April 28, 2018, 08:04:38 PM »

haha yea they are bulky...any suggestion on what to wear to conceal it? I plan to go back to work(desk job) next month.

fivetenneeded2016 · « **Reply #19 on:** April 28, 2018, 08:06:39 PM »

Quote from: Android on April 28, 2018, 08:03:34 PM

Some may even say they look... HEFty.

One thing, for sure, they are weight bearing but. I am circa 55kgs. but i can walk moderately well now. and times when i had to leave the crutches, like moving to bed entering a car, even then i feel confident on these.

myloginacct · « **Reply #20 on:** April 28, 2018, 08:21:21 PM »

Also, how was the discussion about your lengthening goals with Dr. Pili? Is he attentive, realistic? I think it's these little details that have been left from the previous Pili/Catagni diaries. The patients all seemed to have had good results and never came back to the forum (so they could reply), either.

Thanks for any help, FTN!

fivetenneeded2016 · « **Reply #21 on:** April 28, 2018, 09:03:59 PM »

Quote from: myloginacct on April 28, 2018, 08:21:21 PM

Also, how was the discussion about your lengthening goals with Dr. Pili? Is he attentive, realistic? I think it's these little details that have been left from the previous Pili/Catagni diaries. The patients all seemed to have had good results and never came back to the forum (so they could reply), either.

Thanks for any help, FTN!

I personally, face to face, spoke barely much with dr Pili. We cleared most stuff over mails. First time I met him, he just took the sizes for my crutch. Even most of their tests were no-nonsense types. On the day of surgery, they took the xrays and blood tests and in 1-2 hours I was in for surgery. Right now, I have an issue with my visa, that he said he is looking upon.

All i could say is, they are very precise, and they dont waste time in repeating/explaining.

fivetenneeded2016 · « **Reply #22 on:** April 28, 2018, 09:04:56 PM »

Quote from: fivetenneeded2016 on April 28, 2018, 09:03:59 PM

took the sizes for my crutch.

*frames

Android · « **Reply #23 on:** April 29, 2018, 06:33:38 AM »

Quote from: fivetenneeded2016 on April 28, 2018, 08:04:38 PM

haha yea they are bulky...any suggestion on what to wear to conceal it? I plan to go back to work(desk job) next month.

Some people have custom covers made, like this and this. Not many make a finished product, but here's one, and it's not cheap. You can also opt for Thai trousers, basically loose-legged pants.

Rocky · « **Reply #24 on:** April 29, 2018, 03:35:09 PM »

Hi fivetenneeded2016

I can see that we started LL almost at the same time. I really wish you wholehearted all the best and may all wishes become true. Keep strong

fivetenneeded2016 · « **Reply #25 on:** April 29, 2018, 04:27:57 PM »

Quote from: Rocky on April 29, 2018, 03:35:09 PM

Hi fivetenneeded2016

I can see that we started LL almost at the same time. I really wish you wholehearted all the best and may all wishes become true. Keep strong

Hey buddy, coincidently, yes. We were operated on the same day and discharged too the same day. Good you chose femurs and chose stay. I would fly back once my Visa issue is fixed. Hope all goes well eith you. All the best. You can PM me, so we can share the ups and downs

.
Good luck

Life · « **Reply #26 on:** April 30, 2018, 12:08:00 AM »

Funny! You can create a magic bond. Hope you both have a smooth experience.

fivetenneeded2016 · « **Reply #27 on:** April 30, 2018, 08:45:52 AM »

update: flexibilty and ease kind of reduced as I have been experiencing pain(little pain but constant). I try to restrict painkiller intake to once a day(before i sleep)
currently having burning sensation at mid tibia oon right leg. No there are no pins/screws/stitch on that point exactly. Could anyone reason out why? and solution? I mailed Dr Pili. awaiting his response.

myloginacct · « **Reply #28 on:** April 30, 2018, 11:46:34 AM »

Quote from: fivetenneeded2016 on April 30, 2018, 08:45:52 AM

update: flexibilty and ease kind of reduced as I have been experiencing pain(little pain but constant). I try to restrict painkiller intake to once a day(before i sleep)
currently having burning sensation at mid tibia oon right leg. No there are no pins/screws/stitch on that point exactly. Could anyone reason out why? and solution? I mailed Dr Pili. awaiting his response.

How many hours of sleep have you been getting since your surgery? I know you're not lengthening yet, but just curious.

fivetenneeded2016 · « **Reply #29 on:** April 30, 2018, 01:14:08 PM »

Quote from: myloginacct on April 30, 2018, 11:46:34 AM

How many hours of sleep have you been getting since your surgery? I know you're not lengthening yet, but just curious.

I take a painkiller 15 mins before sleep so i sleep well

. only thing is from evening i start lying down, which is why i wake up due to back pain. Leg only pain while sleeping, if i dont take painkillers.

Rocky · « **Reply #30 on:** April 30, 2018, 05:24:45 PM »

Hey buddy. Yeah, it is funny we began the same time. I have been getting those pain killer injections every 5 hours. I have been sleeping all the time. Just sleep and watch Netflex. The doctor gave instructions to reduce it to 2 injections now. I don't feel that sleepy like in the beginning. How is your condition now?

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Author Topic: My Journey with Dr Pili(HEF) (Read 35166 times)