Monday, April 23, 2012

Carticel patient Q&A

I've had two blog visitors in the last month who have had good questions about my A.C.I. surgery and experience with Carticel. I thought it would be useful to post their questions and my answers in the hope that they would be helpful for anyone else scheduled or considering surgery.

First up is a note from Kevin:

1. In reading through the recovery/rehabilitation guidelines, I'm not finding much instruction on when I could return to work at a desk job. I'm a consulting engineer and work primarily in a traditional office setting (can be sitting all day, if need be - not much walking). My boss has told me the company will be flexible with working from home or rearranging things at the office for me. When in your rehab did you feel you could sit at a desk for 8-9 hours a day?
2. Any problems with insurance?
3. What kind of activities did your doctor say you could expect to resume if all went according to plan with the ACI?
4. How many hours/day should be budgeted for rehab during the first 2 weeks? 6 weeks? 6 months?

Basically I would like to get as reasonably accurate of a picture as possible of what my rehab schedule will look like…….

My response:

- I found the carticel literature produced by Genzyme (the company that makes carticel) to be very helpful and pretty much spot on in all things. If you haven't received this stuff yet (I did, after my first consultation), I highly recommend you get it (and get multiple copies - your physical therapist and others will find it handy to read to.) I'm talking specifically about a green spiral-bound guide, and a small green pamphlet that is the summary of the green book.

-I found the recovery/PT to be pretty easy, as long as you stick to it. No particular exercise is too difficult, and no session was too tough. Adding up all of the movement exercises over an hour could leave you tired, but I always found it to be a good kind of tired. Sometime sore, but not in pain.

-I was really, really lucky to have a great support team. I moved back in with my parents for a month post-surgery, and friends and family were a HUGE help.

-if I could go back pre-surgery and do one thing it is to start a diet. Post-surgery you do a LOT of sitting around, and inevitably you put on some weight. A pre-surgery diet would not only make this a little easier to accept, but also lightens the load on your knee.

1. Ah, returning to 'regular' life. Here's one area where I found the guidance was a bit too optimistic. To answer your question directly: how long until you could sit in the office for 8-9 hours/day: I'd say 1 month. (But you can contribute well before then, working from home or half-days.) Here's why I say that:

I work a desk job too, and was told that I should expect to miss a full week of work, but after that, I could go back to working at my desk. Everyone's reaction to getting chopped open is a bit different, but I'd say that I didn't really get back to work for 2 weeks, and I'd say it was a month before I was good for anything but answering emails and other "light duties."

My implantation surgery was on a Thursday, and I expected to be back to reading emails and maybe joining teleconferences during the next week, with the expectation that I'd be back "in the office" the week after (i.e. 11 days post-surgery.)

Even with all the care that I was getting - getting driven around, etc., I was surprised by how draining the recovery was and how small things became big accomplishments - like taking a shower, or walking between bedroom and living room. (btw: you're going to live on 1 floor for about 2 months. Stairs just aren't worth it.)

The first month post-surgery is a blur to me now. I wasn't a vegetable, and certainly remember feeling like I was getting things done, but everything for the first month took 4X as a long as you'd expect - even simple things like reading a book. In the early days post-surgery, I'd fall asleep in the middle of a chapter in the middle of the day. This got better almost every day, but still, I was surprised how drained I was, every day.

btw: one piece of advice from my experience: get an iPad to keep you busy during the recovery.

I didn't do any work other than reading a few emails for the first full post-op week, and worked lightly from home in the second week. My third week was effectively all half-days. (Luckily this was vacation season in the summer.) It was only by week 3 when I could think better and focus.

As for the physical dimension, you'll be mobile pretty quickly (with a walker), and you could get back to your office quicker than I did. PT and doc check-ins won't really interrupt your work day, but don't underestimate how draining just getting from the parking lot to your office will be. Also: for the first month, your repaired leg will be in a locked brace running from ankle to thigh. It's not as bad as it sounds, but it has a few implications: 1) you'd definitely rather wear shorts during this time, 2) you can still get around with the brace on, but it is cumbersome and you learn real fast to minimize movement - no getting up to pick something off the printer ever half-hour.

The one thing that could keep you at home is the required time in the CPM machine. (CPM= continuous passive motion. It's a gizmo that just keeps lightly moving your leg, whether you are awake and watching TV, or sound asleep. It's not difficult, but the first week or two requires rotating 1 hour on/1hour off schedules. You really can't go back to work when you need to spend 4-8 hours a day in the CPM. Unfortunately, I can't recall if the CPM was only for 1 week, 2 weeks, or 3 weeks. I know we returned the machine to my doc at the 1 month check-in.

2. Insurance: I was really, really surprised by the insurance process. (I'm with Anthem Blue Cross/Blue Shield here in VA.) For starters, my doc's office took on the challenge of getting approval from my ins. company - I really had almost no interaction with the ins. company. There was a problem, though, in that we set a surgery date based on a regular turnaround time by the ins. company. My approval process went long, though. I was very nervous that this was a negative, but it ended up being a paperwork issue - my referring doc (my 1st orthopedist, who eventually referred me to the carticel doc) hadn't sent some particular info. One other tidbit to be aware of: I heard that insurance approval can sometimes be complicated by body weight. (i.e. insurance isn't going to pay to fix the knee of a 400-pounder), and that BMI (body mass indicator) is an important screening criteria with some companies.

The one negative in the pre-surgery process is that I never knew what my financial obligation was going to be - there aren't fixed prices for something like this. I had an idea of what the whole deal costs, and I thought that I'd owe 20% of it - which ended up being accurate - but NOONE could tell me this with enough certainty.

3. The expectations that you'll read about in the carticel literature are pretty accurate - no running or abrupt movements for a year. That said, I've been swimming, bicyling, and walking without difficulty for months now. I was swimming in month 3, and crutch-free at 4-months. Just in the last month (month 7) I've gone from thinking "just the thought of running is painful," to "yeah, I could see myself running in 3 months."

4. Rehab: actual daily demand is pretty light - like less than hour. My schedule was (roughly) go to a PT place every other day for about an hour. On the "off" days I did a series of leg lifts and other simple movement exercises which took less than a half-hour. Warning though: when you're only a week or two post-op, even these exercises will drain you pretty good. (the PT is a bit lighter for the first few weeks, concentrating on movement. Later, when building strength, you'll do the 1-hr PT period.)

I'm 8 months post-surgery, and I'm surprised to say that I'm still endurance-limited. I can do about an hour and half (max) of continuous activity (like biking) before needing a break for my knee. I'm told this is normal, and that over time this figure will rise, but that I shouldn't try to "power thru" my limits.

Kevin, I hope this helps. Please feel free to contact me with any additional questions or clarifications.



And the second note from Lisa:

How much help will I need the first week or two post-op? I live alone and some patients said I will need someone to stay with me 24 hrs a day for the first week or two and others said I wont need much help at all.

My other concern is how much Genzyme charges for cell growth. First I was told they accepted only what Aetna would pay and nothing from me, then they send me a letter that I am responsible for the balance. My issue is Carticel will not tell me how much they charge for the cell growth. Did you receive any invoices for your cell growth?

Thank you for sharing your experience,


My response:

The first week or two post-surgery is pretty slow - except for days where you have PT scheduled, all you really do is alternate between however you like to rest (TV, reading, bed, etc.) and sitting with your leg in a CPM machine. (You've heard about the CPM machine, right?) The days will fly by, as you'll find yourself randomly drifting off to sleep while reading or watching TV, which was good for me, and hopefully for you too.

PT days are straightforward too. Think of it as basically an hour of coached movement exercise - no weights, no machines.

I don't agree with the idea that you'll need help available 24/7, unless you have one of two challenges:

1) your house or apartment has stairs on the inside or outside, or

2) you don't prepare to live as smoothly and simply as possible for the 2-3 weeks post surgery.

Here's what I mean: stairs are very, very, bad, immediately post-surgery. They're difficult, draining, dangerous, daunting, and the devil, all rolled up in one. A simple flight of stairs up to an apartment, or to a second story bedroom is enough that you'll want to plan your days around your up/down trips. In addition to the challenge of the stairs, they can be very dangerous - you'll be on some kind of painkiller for ~2 weeks, and stairs + drugs don't mix well. I lived on one floor of my 2-story house for about 2 months post-surgery, with a few exceptions when I very slowly scooted up/down the stairs on my butt, and I'm glad that I did so.

Having someone around - even just a visitor every day or two - can really help out a lot with regards to stairs.

Prepping in advance of surgery can really reduce your interactions with stairs and make daily life post-surgery less demanding. Moving everything you need to one floor - or even one room would be a big help, as would doing all of the laundry, grocery shopping etc. in advance. Don't even dream of carrying a laundry basket for the first month post-surgery, and you definitely won't be pushing a grocery cart through a store. (I stocked up on shelvable foods (spaghetti, etc) and relied on friends to bring by things like milk, fresh veggies & takeout.)

Along the same lines of planning, for the first month or so you'll want to really coordinate your trips out - you wouldn't want to go to PT in the AM, then make another trip out in the afternoon to visit the drug store when you could combine these into 1 trip out, to minimize your work, and make the most of any friend who is escorting you that day.

(Oh, one other thought about having help and prepping: showers are a much, much bigger challenge than I expected. I'd try to have someone on call in the next room for your first couple of showers, and definitely prep your shower pre-surgery by finding a seat or stool to put in the shower. (I highly recommend a plastic lawn furniture chair.))

So, solo life immediately post-surgery is completely possible, just take it easy, listen to your body, and make sure your survival doesn't depend on anything that HAS to be done.

(While solo life is good, I really appreciated every visitor, sometimes off-loading stupid stuff on them ("Can you get my book?") but every little bit makes life easier post-surgery, and your friends want to help.)

As for finances, I can't give you a precise answer, but I'll tell you my experience. I had (and have) a very regular health insurance policy with our local Blue Cross. I too sweated pre-surgery as nobody could give me any exact financial answers, and I got letters from Genzyme and others that scared me - like the one that says "if you cancel the surgery once your cells are thawed (a day beforehand), you're going to pay for everything,even if there is no surgery."

Ultimately, the finances were a pleasant surprise. I'm pretty sure that the all-in, total of everything, cost for me was ~$64,000, but my insurance covered >90% of everything. I think the balance from Genzyme for growing up the cells that I had to pay was $963, and I had a couple assorted bills for everything that might have added up to another $2000 (anesthesia was one, follow-up doc visits was another - nothing too big on its' own.)

(PT was a separate issue - my insurance covered something like the first $750 in PT. My PT bill was much more than that, and I partially blame myself, because my PT folks were very adept at offering additional services to make a bit more money. I never realized that when they said "do you want knee mobs?" (manual massage of the knee) I was committing to an additional charge.....every time.)

Best of luck with your surgery!



I hope you find this helpful. As always, please feel free to send me an email through any of: my profile page, my Facebook link (lefthand column) or write questions in the comments section. To see all of my posts regarding my ACI/Carticel experience, click here or "Knee Surgery" in the label cloud to the right ---->

1 comment:

Slammah Montana said...

You mentioned in one of your posts that it took 4 months to be completely off crutches. Did this match the time frame you were originally given? I am 5 weeks post-surgery, and I was following the green Carticel guide for my particular surgery which said that I'd work up to being off crutches by 6-9 weeks. However, now that I am close to that timeframe my doctor is hesitant to say if that is still realistic. I live in Chicago and my work commute consists of a train and bus (I'm currently on medical leave), so I'm having a hard time letting my office know an official return date. I've also been in the immobilizer brace this whole time, so I know that my quad is practically nonexistent at this point. I've just started leg raises in PT. Thanks for sharing your experience!

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