Sunday, August 21, 2011
Tips and advice for Carticel patients to be
While Carticel and A.C.I. (autologous chondrocyte implantation) surgery is now ~15 years old, there is still a lack of non-Genzyme originated patient info out there. I've previously covered some of my experience online:
To anyone considering or just beginning their Carticel experience I’d offer the following points for consideration:
Tips & Insights
1) 1) Your most valuable item is your green, ring-bound rehabilitation guide. There’s a very good chance that your rehab center has never seen a Carticel patient. There’s a good chance as well that your therapist will see “A.C.I.” and think “ACL.” To combat this, share your green rehab guide guide, or better yet, get more than one copy so that you have one too.
2) 2)Get clarity on how your protocol changes with time and progress. Surprisingly, there’s not a ton of precision on when a patient progresses into a different protocol. Can you sleep without a brace at week 4 or is it week 5? Do you get off crutches at week 6 or 8? It’s fluid – get firm, clear instruction from your doc/your doc’s physician’s assistant/physical therapist.
3) 3) Just like protocols were sometimes confusing, I sometimes got confusing and contradictory advice on simple things, like how to put my leg brace on. For instance, I was first told directly that the brace should be snapped in order from top (pelvis) to bottom (ankle). I found that the brace would tend to drift down my leg. Four weeks in, my physical therapist (my 4th different one) suggested a different order: when putting my leg brace on, it seemed that snapping the braces on in one particular order produced the best results. Mine has 4 ‘bands,’ which I’ll label from my ankle to my pelvis 1 through 4. I got the best results locking #2 first, followed by #1, #3, then finally #4.
4) 4) Since the Carticel cells are frozen once fully grown in anticipation of shipping for surgery, the scheduling of the implantation surgery is elective. I considered surgery during the winter holidays, or perhaps in the quietest part of winter, with the thought that these times were most conducive to sitting around, and basically doing nothing more demanding than rehab. I ultimately chose to operate immediately (July, after a late March harvesting of cells) mostly due to an interest in getting better sooner rather than later, but it had a benefit that I hadn’t anticipated: it was the time of the year to wear shorts. As I realized, long pants aren’t really a good option for the first month or so post-surgery, so consider having your surgery during a warm month.
5) 5) I’d suggest relying on a walker instead of crutches for the first month or so. Walkers are a bit slower and less mobile, but far more stable. I’d say that while on crutches, I’d have at least one “whoopsie” incident a day where I might have to apply significant (if momentary) pressure on my sore leg. Not fun. In contrast, walkers are very, very low risk. Also: you can drape a bag over an arm of the walker in order to carry books & gizmos with you.
6) 6) Get an iPad. You’ll be spending LOADS of time just sitting around recuperating. You’ll be in need of mindless distractions or entertainment. I picked up a second-hand iPad for ~$225 and it was worth every penny during my recovery. I also used the iPad to gauge my health: I play backgammon and pre-surgery was beating the computer probably 3 out of 4 times on average. During the first ~3 weeks, my success rate against the computer was ~50/50, with some prolonged periods where I lost more than half my games against the computer, corresponding (on reflection) with the times where I was most exhausted or in pain. I’m happy to report that I’m back to normal, winning ~75% of my games.
Uncommon Man's Creed
"I do not choose to be a common man. It is my right to be uncommon -- if I can. I seek opportunity -- not security. I do not wish to be a kept citizen, humbled and dulled by having the state look after me. I wish to take the calculated risk; to dream and to build, to fail and to succeed. I refuse to barter incentive for a dole, I prefer the challenges of life to the guaranteed existence; the thrill of fulfillment to the stale calm of utopia. I will not trade freedom for beneficence, nor my dignity for a handout. I will never cower before any master, nor bend to any threat. It is my heritage to stand erect, proud, and unafraid, to think and act for myself, to enjoy the benefit of my creations, and to face the world boldly and say, "this I have done." All this is what it means to be an American." -- Anonymous