Saturday, February 25, 2012

Addressing my Dupuytren's

Dupuytren's Contracture
c/o Janet's hands
101 Viking Lane,
Diabetes, CA  12121

Dear Mr. Dupuytren's:

It has come to our attention that you have been spending an inordinate period of time occupying Janet's hands.  We understand that you have aggressively progressed especially on her right palm, but that you have extensive expansion plans to move to the left and perhaps involve multiple finger distortions.

We respectfully request that you cease and desist immediately, or we will have to take more drastic measures to control your occupancy.  Obviously the use of vitamin E, DMSO, or even Lugol's solution (iodine) has not loosened your hold on Janet's hands.  You heedlessly move around converting collagen type I into collagen type III. This is a very bad idea, as type III is less supple and will accumulate and contract over time.

We have plans for a counter attack in one week.  Unless you opt to move on your own, we will be forced to wield a large needle and start nicking at your most beloved cords of contracture.  We have tried reason with you in the past with no response. Now it is time to bring in the big guns and force your hand (so to speak).

Regretfully yours,
Janet's Brain, Body, and Soul

Anyone who would like more info about Dupuytren's can Google or check out Wikipedia. But basically, I've had these nodules on my hands for several years, and now they've begun to turn into stiff cords. It's pretty aggressive I guess and on both hands, but so far I have one contracture that is getting fairly bad.  Cause is pretty much unknown, but there is a genetic component, and it is more common in people with Scandinavian heritage and Viking in their blood (ha! I would have made a fairly decent Viking I think).  It's also associated with other risk factors like being a man (not the first time I've had something that only men are supposed to get), diabetes, and liver fibrosis.  So probably my genes and my diabetes are messing with me.

No big surprise.

Here are a couple of photos of my right hand to illustrate the problem:

Really, there hasn't been too much functional loss except for yoga poses that require palms flat to the ground. But it's gotten worse in the past couple of years and now I do get irritated by not being able to straighten my hand and I know it will only get worse if I don't do something about it.

So, I met with a new hand specialist - I did a lot of research and had talked to another "hand guy" in Oakland. But the orthopedic surgeon types want to do surgery to remove the affected tissue. And I do not want to have the most radical treatment first when there are less invasive approaches to try first. 

I have an appointment to get a "Percutaneous Needle Fasciotomy", also called a "Needle Aponeurotomy". It sounds scary I guess, but really it is a series of nicks along the cord done with a needle that allow manipulation of the hand to straighten it out.  There isn't any big incision, and the recovery time is very short (a few days vs. a few weeks with surgery). The rate of recurrence isn't any worse than the track record of surgery either, but there is a likelihood that it will recur - and I'll probably have to have my left hand worked on pretty soon (earlier would be better than I've waited for the right hand).  Also, if after a few months it seems not 100% where I'd like it, this doc will go in with an even newer treatment of collagenase injections (Xiaflex).  His approach is a little different than the other doctor I talked to in this regard too - the other doctor didn't want to consider it and was somewhat disparaging.  My new hand specialist is a plastic surgeon, and said that he uses based on learnings from using Botox - i.e. he spreads the injections around to "poke holes" in the cords rather than squirting it all in one place.

I'm pretty happy with this plan and I'm excited to see how well the NA will work on my right hand. Keep you fingers crossed for me (because I really can't anymore, at least on the right hand)!

Just a quick update on my internal issues - stomach feels pretty good, still taking the trial medication without any side effects, working on blood glucose control using the CGM (continuous glucose monitoring), and I'm getting all caught up on my maintenance schedule in general (eye exam, mammogram, standard blood tests, etc.).  Also still seeing Dr. Who for acupuncture - I don't know whether it's making a big difference or not, but I still want to stack as many cards in my deck as possible for good health.

Tuesday, February 14, 2012

It's just a toad.

I've mentioned being very behind on things.  Wait, maybe that was on my other blog.  Well, anyway, one of the things I fell behind on (among the many things) due to being sick every other week for over 3 months was my "fun" science reading in my office (not to be confused with required science reading, which can be sometimes fun and sometimes so boring that I feel like sticking needles in  my eyes).  So in an attempt to reign in the chaos of my office I've been clearing out some recycleables, aka documents and journals, a little at a time.  My desk was in pretty good shape by end of last week so today I tackled some of the reading on my table. Three categories - 1) scientific journals that I should at least scan through for articles relevant to me, 2) trade periodicals like "CAP Today" that are relevant for diagnostics industry in general (where I work), and 3) the science magazines aimed at scientists (both professional and armchair) that are pretty fun to read through.  So those last ones are the hardest to part with if I haven't gone through them, and I often have issues of Science News or The Scientist that are many many months old.

So what?  Yes, get to it. Today I stumbled on an editorial piece in The Scientist from August of this year written by Richard P. Sloan - a bigshot professor at Columbia in Behavioral Medicine.  It was entitled "Toads". I thought maybe there would be something about poisonous toads taking over Australia, or about the disappearance of amphibian species (but that would be entitled "Frogs", not "Toads" I would think).  But the subtitle is "Ascribing benefits to the experience of devastating illness or trauma is fraught with hidden dangers"

huh?  Well, here is a link to the article if you want to read it yourself, but I will summarize a little:

The highlighted quote (you know, the one that they make in really big font in a side box of a magazine article to grab your attention) was "Casting an illness as a special opportunity for growth trivializes the adversity".  Now, I do not agree with all the statements and analogies in Dr. Sloan's piece. But many of us with chronic diseases or those who survive cancer, et al. have likely experienced something akin to a) an examination of ourselves and our behaviors, including guilt, because there is an assumption of moral irresponsibility associated with many illnesses, b) maybe some personal growth and change because illness can make you appreciate the gifts of life more (but as Dr. Sloane points out, there are lots of human experiences that lead to this type of growth that don't suck as much as being really sick), and/or c) comments from people suggesting you could be worse off because (diabetes) can be controlled and you can (opt to) live with it. I haven't had cancer yet, or any of a host of other "worse" diseases,  so I'm sure this last doesn't apply for all other illnesses.  I haven't had any comments like that about my digestive woes for example, except people who ask if it's because my diabetes hasn't been well controlled.

Or maybe you've suffered a traumatic illness and none of these things apply to you. Which makes sense to me, because like the author, I seriously doubt anyone would say "oh I wouldn't trade my hideous experience for anything in the world. It's the best thing that could have happened to me." And everyone takes away something different from every experience - both good and bad. 

Well, except for Lance Armstrong I guess.

Personally, I do like to take the opportunity to do some self-examination and regard the perspective of the world when bad things happen to me. If possible - but even for an optimist it doesn't always work that way. I have had at least one or two experiences that couldn't be spun.

Anyway, the toad reference was sort of obscure for me but it had something to do with realizing that despite a toad being adorned with jewels, it is still just a toad.  Dr. Sloane references a current agenda in biomedical research that is looking at the "postraumatic growth" or "benefit finding" aspects of the human experience with illness.  Apparently some researchers used a reference to The Wizard of Oz, stating that early stage breast cancer can lead to the "Emerald City of post-traumatic growth". Which confused me because I always thought the Emerald City was about some deception  and representing something to do with capitalism or money - I don't remember exactly what now, but I do remember in the book they all had to put on special glasses with green lenses before entering the city.  I guess the movie has a different version of the Emerald city where anything is possible. A much more optimistic take on the story, admittedly.

Again, I didn't follow the reasoning of the entire editorial, but I did agree with the final sentence of his piece:

"Illness is not a special blessing. It's not a visit to an Emerald City.  It's just a toad."

(Amen, brother!)

Wednesday, February 8, 2012

Things we all can agree on...

#1 - being healthy is great
#2 - doing your taxes is kind of a drag
#3 - a sunny afternoon after a morning of fog and clouds feels like a gift
(feel free to add to this list - just a couple of things that popped in my head today)

Update: I'm 6 days into my guinea pig gig - so far no side effects from the drug that I can identify. Yesterday I felt a bit yucky, but I still have days like that at this point. I tell you what though - I have to hurry and gulp down the 7 (yes SEVEN) tablets because they taste terrible! I think they are pretty acidic.  I looked up the side effects for this drug before I started (Kuvan).  So funny (not really, but kinda) - some significant percentage of people in the PKU clinical trial had nausea as a side effect. 

oh, and vomiting too. nice.  

So that is why I'm so relieved to feel pretty okay so far.  After 4 weeks I switch to a higher dose though - 14 tablets at a time  (that's right - FOUR plus TEN = how many pills I have to gulp down). Keep yer fingers crossed that I don't start barfing at that point.  If it seems odd to anyone that I'm testing a drug that should help my stomach function better but that might make me sick. Well, join the party! 

Speaking of things that make me barf. I realized yesterday that one reason it's hard to identify a specific trigger for the extended episodes of vomiting because so many things will make me nauseous and often result in me throwing up. Usually just a one-off thing - or at least short-lived.  Jet-lag (check), migraine (check), too much stress (check), riding in the back of a cab with a terrible driver (check and double check).  I'm serious - I have had to ask a driver to pull over and let me barf in at least 3 different countries!

Update #2: RE: my healthcare"team" composition...
I decided not to divorce my endocrinologist and dump him for someone new. I've been seeing him for over 20 years now and I went in to see him recently thinking at least I should talk to him in person before going to another doc. Then I changed my mind. I don't want to train another doctor right now. I'm already seeing too many new doctors who don't know me. 

I made an appointment with a hand surgeon for my Dupuytren's yesterday (or maybe monday)...he's located a bit farther away than some of the other options so now I drive all the way down to Stanford for my GI doc (45 minutes in no traffic), out to Orinda to see my endocrinologist, and up to Marin to see this hand surgeon. So much for centralizing and simplifying my medical/health team!

If you're wondering about Dupuytren's, don't worry - I'll write a post about just that next time, what I'm hoping the doctor can do for it, and include a picture of my hand. But for now it's time to sign off. I've been sleeping more, and I think that is a good thing. 

#4 - sleep is good.