ABC ... 123 ... Know your ICD9s & CPTs

Part of me wants to break out into song....or cryout Bingo.

Recently I had a Nuclear Bone Scan to determine the level of bone remodeling around the tip of my hip implant in my femur, to see if there is a difference from before "failed implant" status. Today I received a Lovely call from my local hospital saying I had a copayment of $649.00 for the scan that has a base cost of $2456.08(per the negotiated rate between my insurer and my husbands company). My policy is a 10%copay up to $2500 "out of pocket" maximum per year.

Before you have any conversation with an insurance company or a provider, especially if they have differing opinions arm yourself with these basics to sort out what may be the difference of a extraordinarily large out of pocket fee.

Know your ICD9s (diagnosis codes) and CPTs (procedure codes). These numbers are the most critical for determining whether or not the procedure you are having is covered and at what cost to you and the insurer. At a later date I will discuss the fascinating world of codes and how they make the difference between being paid and not. Sometimes there are alternatives.

Check if provider verified your benefits via a phone call as opposed to on-line.

Ask for a contact ID or name of person you speak to and take notes of the converstaion. As the person if there is a contact ID that tracks the call/conversation. Some insurance companies use representatives names

If there is a discrepancy, request a conference call with your insurer and provider. They usually will try, especially your insurance company.

What a Couple of Weeks ... and a Bit of Backstory

Day One Post Surgery

Two weeks ago,  I started the next series of surgeries to try to alleviate the ongoing, never ending pain in both my legs due to my mulit-focal osteonecrosis in both hips and knees.  This makes surgery 18 or 19.  I cannot keep up.  After careful consideration and meeting with our friendly specialists across the country the decision was to target the leg/joint that had the best chance of recovering fully, which is the right knee.  We had a 80% shot at success.

The hip revision specialist I saw, at Rush Orthopedics, in Chicago, Dr Wayne Paprosky, said to me, I see 1000s of patients a year with complex hip revisions, but only see a handful of people like you... (again, not the special I am looking for). He agreed we needed to target the right knee first so that it could handle the hip revision surgery.  The downside was that we knew that the weaker leg, with the failed stem implant, would be a challenge to manage, however that surgery is far more extensive,  has a much higher level of risk, and not straight odds of success. So, we went for it.

The plan was a right knee scope and bone marrow aspirate stem cells (from the iliac crest), which we did, with a possible micro fracture. A knee scope is no big deal, but a micro-fracture is a whopping kick-ass drilling into the bone surgery to bring blood supply to the surface to help regenerate cartilage. It results in a much longer recovery, much longer non-weight bearing, and a much much longer time (two months rather than the current three weeks) in a CPM (at 6 to 8 hours a day).

CPM MACHINE

We were braced for the worst case scenario surgery which is usually what happens, but that wasn't the case.  Thank Goodness, because based on what is going on it would have been a horrible horrible recovery! The last 14 days were bad enough. The good news is that the knee recovery has been relatively straight forward, until my hiccup yesterday, but that is the way it is with a knee that has had 5 surgeries (I guess).  This is going to take four times as long to recover.  I am practicing patience

More importantly, what I did not anticipate were two things. 1) The extent that my left leg, which is the weaker of the two legs due to end-of-stem pain, would not manage the "loading" required to support the early phases of recovery and 2) a dental infection for which I had an emergency root canal Monday before last. Both kicked my ass to kingdom come. Post-op and the first two days of recovery were looking good. I was alert, talking medical research etc. On the morning of the third day, I stood to pivot on the left leg, which overloaded the femur and the loose titanium stem in my leg (which I felt rotating) and then I was screaming in pain all the way back to PT (physical therapy). That single movement wreaked havoc on my body, and tipped the scales of my wellbeing. I ended up on heavy duty pain killers, to buffer the discomfort. Jesus that was rough. Then, the tooth, for which I was pro-active about taking care of (fixing an old filling) prior to surgery, because I know that dental problems/germs can cause problems at elevation (I went from sea level to 8,000 feet) turned into a full on dental infection. I went into surgery wondering why the tooth had not recovered from the treatment I had at home, but was so focused on surgery, that I ignored the signals. The weekend before last I was holding on for dear life repeating to myself that I just needed to get to Monday, pouring large amounts of Indica tincture on my tooth to stop the waves of excruciating pain. I had onboard lots of pain killers for the left leg. I even wanted Larry, my husband, to take the tooth out with pilers, that was the indicator that maybe it is more than a sensitive bite. Last Monday, I was able to get an appointment with a local dentist, who was able perform an emergency root canal. It was a good thing because it was pretty nasty.

For 10 days we were in triage mode. The infection triggered concerns of infection impacting the replaced hip, so I was placed on 2000mg of antibiotics a day. And, because there are so many weak links in my body, we have been playing "whack a mole" trying to calm down overloading parts. The medical team got into full gear to get me a wheelchair, a raised commode so I did not have to overload my left leg (I never thought I would be so happy to have a raised toilet seat), additional ice machine components which help with pain. Thankfully things are calming down. It was a rough ride. A lot of stress. I am thankful, we are around that bend. My husband, Larry, has been a hero managing everything. I finally started feeling somewhat like myself this weekend. My knee is finally progressing and getting stronger. (I like those stem cells). It is clear I need to focus on getting my hip replacement replaced, which we do have a plan for, but right now the focus is to get the knee ready to rock and stabilize it so it doesn't require more surgeries...that would be grand.

What I learned:

1- The thing that you worry about is usually not the thing that will go wrong.
2- Don't ignore continued dental pain. Chomping on a bad tooth can result in a root canal.
3- Keep your focus and wits about you
4- Have a sense of humor.
5- Have a great team! (which I do!)

Two Illnesses and a Death: What I learned About Patient Advocacy

Whether my fortune or misfortune, recently I have had the opportunity to flex my patient advocacy skills for the benefit of my closest friends. Although each situation was radically different, much to my surprise I could leverage what I have learned over the years and find that I am very comfortable in a hospital/medical setting, maybe too comfortable (LOL).  The skills I learned for one specific illness can be transferred to another illness. The specifics are different but the rules are generally the same.  Newbies (those new to medical treatments) find the system daunting. I used to think it was about intelligence.  It has nothing to do with intelligence. It seems a lot to have to do with expectations, naiveté, and language.  There are code words everywhere, and now that I have done this over 20 years I seem to have learned something. It is like how I learned gardening. You learn by doing and repetition, and by exposure to the language. Think of it as language immersion classes. 

The most important thing is even if you don't think you know something …. ASK… ASK … ASK. People are far too often afraid to ask the doctor questions. Some worry, even myself that she/he may get irritated. Go for it. It is your only opportunity.  You are paying for it. Doctors have a pretty good ego. (And, if they don’t there are other problems to think about. That’s a yellow flag in my book.) It is your life after all. I use the mantra, I am the CEO of my body. It is the doctor's job to answer your questions and help make sure you two have a good working relationship. If not, that can be/should be a deal killer. 

Follow your instincts, not some dictum, even if the doctor is the "Top in their field”. Medicine is taught and delivered by humans to humans and to deny that human factors in medicine exist, is being in denial. All this means is that medicine, whether Western or something else, is never ever perfect. Don't let anyone tell you otherwise. My motto is: You can have good outcomes with bad doctors and bad outcomes with top doctors. It is ultimately a crapshoot. All you can do is the best you can at any given moment as does the doctor and his/her team. 

You have to follow your instincts of what is right for you, and hey sometimes that doesn't always work out. Ultimately you have to live with the consequence, which means each medical decision you, as the patient, make needs to become your responsibility. I find that a useful technique because then, if something goes bad, I cannot say well…this is x and y's fault (unless it clearly is, e.g., a mistake was made). For me, that technique increases my investment in the medical decision/choice at hand.  So, I take joint responsibility with the healthcare provider and their team, whether it be a Western or non-Western approach. 

That leads me to the next realization I had…a new diagnosis leads to all sorts of well meaning people who want to share, help, give, impart knowledge and experience, commiserate, love the person(s) in the medical crisis. As a patient, especially with a new diagnosis, and lack of experience in the medical system, you have to filter, rank, and analyze all the incoming inputs. This, I have seen can lead to treatment paralysis, or treatment overkill from everything to Ayurvedic, to Andean shaman, and bee-sting therapy, that doesn't include all the detoxing and supplement overdosing that can happen.  It is hard. There are so many choices out there. It can be helpful to get a good third ear to listen and help make decisions, and then run the decision past that, can I live with this “filter" and go with it. Sometimes you have to tell people to stop giving advice, but know they are coming from a position of love. And, sometimes, especially during an acute crisis, people's personal issues get intertwined with the desire to help, so one needs to keep that in mind too. I still struggle with novel treatment solutions to varying degrees.  It seems to be inversely correlated with how well I am feeling. When I am feeling worse, I start rooting around looking for a new thing that is not Western mostly, and even new Western techniques, and start a supplement regime.  I just did it last week. So, even old-timers, suffer from looking for the new best thing. And, sometimes it is good to do, as time moves new treatment protocols come along, so it is not all bad to look for new things.

Lastly is patience, there is nothing like the motto, “Patients are practicing patience”. From waiting rooms to diagnosis, to healing, to dealing, with billing or rehabilitation, to … you name it.  I find it a sublime meditation. For me, that has been the metaphor and mantra of my evolution, and continues to be that which I need to work on most. I have learned when I need to hurry things along and those that don't really help hurrying. Medicine, especially when it involves you, can get very complicated, and sometimes we do ourselves a disservice. We try/want to hurry things along especially healing, that is another really hard lesson! Giving us time to heal, giving one self-permission to heal, and sticking up for it is a real challenge in this culture. We are far too trained in our society to focus outside ourselves …work…do…We are nothing if we aren't doing. (I am not one to talk). Healing both physically and spiritually is very important. And, in a world that is not comfortable talking about, or acknowledging, illness and death, it is not easy to give permission to take time to heal and to slow down the pace. Sleeping is so important for healing of the body and the brain. That is one of the reasons that hospitals are quiet.

Looking back on the last weeks these are the big picture things I learned from being with my friends in their difficult times. I hope to look at each story and bring out more that I learned to share.

Here are the tops tips:

1. Ask questions!  You are the CEO of your body; it is your right to know and be informed
2. Learn the language
3. Trust your instincts.
4. Live with your decision. It is no one else's.
5. Filter well-intentioned recommendations (go through steps 1 though 4)
6. Have patience with all of the above and yourself. It takes time to learn the language and nuisances of the system. 
7. Give yourself permission and time to heal.

Sometimes it is the small things that warms your heart and gets you excited.

I have been working with a new doctor, Dr Thomas Parker Vail,  at another large facility, UCSF, he is the head of Orthopeadic and Reconstructive surgery.

To determine the state of my "end of stem" pain, a condition related to a failure of the stem part of the implant, Dr Vail,  requested I do another metabolic bone scan to see what the bone reabsorption rate (performed by osteoclasts) is compared to the rate of laying down of bone (performed by osteoblasts). If more is being reabsorbed than being laid down that is where there is a problem.

Anyway, the reason why I am sharing this part of the story has more to do with the doctor. He  asked me to send him an email when I was scheduled for the test. It took me 3 months, after I first met with him to finally get the test done, I emailed him to let him know, that was last night; this morning at 6am he sent ME directly an email back, thanking me, and asking his assistant to be on top of it.

Now, that is the exciting part of the story. He followed through on what he said he would do. This is a busy surgeon, chair of his department at a large academic hospital, and he emailed me. That is a WOW. My previous experience with a large academic hospital was horrible...I couldn't email anyone, it took them weeks to get back to me, and the doctor essentially blew me off.

I am sharing this because as a patient, with a chronic, painful, and complicated ortho condition it is such a relief to have a doctor treat you like a human being. Outside of my group of ortho doctors in Vail Colorado (how ironic) the positive patient to doctor experience has been desperately lacking. This doctor did not make me feel bad about myself, he didn't say "suck it up", and he treated me like a professional on the team, which when you come down to it, with any medical condition, especially a chronic one, is so very important. The simple action of being treated like a professional adult telegraphs to a much more positive overall patient experience and makes me very hopeful that I may have found the "ONE", so to speak. It doesn't mean that everything will be perfect, but this is a good start.

I will never, or I will try to never not follow my instincts again, as I had struggled for years with my doctor at Stanford, as was documented and reported last month by Kimberly Leonard from USNews, in, How to be an Empowered Patient. 

I thank her and the marvelous #Epatient Advocate Trisha Torrey, who diligently and wittily authors the About.com's Patient Empowerment site and her own Every Patient's Advocate site among other patient advocacy engagements, for reaching out to me and asking me about my story. Who knew anyone would care about my story?

 It is because of these two ladies that I got inspired to re-engage my more broad patient advocate hat and share some of my stories so that others may not have to go through the same experiences. If my sharing helps even one person, that is one person more that can spend their life living rather than fighting the convoluted Healthcare system in the US.

So, stay tuned for more tips and tricks. And,  a shout out to Trisha Torrey and Kimberly Leonard! 

Drugs and Lawsuits..that is the question

There are points in life that define you. Many years ago I was urged to file a lawsuit for my bone disease (osteonecrosis) that was due to medications (high dose Prednisone) for a misdiagnoses case of MS. Increasingly there are reports of lawsuits for precisely this condition. And, Drug manufactures are finally adding it one of the potential side affects. The statue of limitations for finding out the condition is two years. Too bad I missed that boat. And, I am the one holding the proverbial bag. It is an interesting thing to watch how drug impacts unfold. This is the advantage of age. This process has taken nearly 20years for me. First know cases of Steroid induced AVN was in 50s. 

I am particullarly reminded of the lifelong impacts of a particular drug. This is very similar to the thalidomide problem many folks : http://www.cbsnews.com/8301-202_162-57504597/german-drug-company-apologizes-for-notorious-drug-thalidomide-50-years-later/. How many other stories are out there?

Hard lessons of Cobra, Medicare, and "Qualifying Events" or All I want to do is go on a Honeymoon!

Today, for the first time since my last surgery of 6 weeks ago, I was relaxed, lighthearted, feeling good. I was finally feeling like I could look across the horizon rather than being bogged down in my small recovery world. I was even preparing a blog post on healthcare issues I have been thinking about, especially a recent new experience I have had. A really positive one.

Great...I was starting to expand my life beyond immediate day to day dealings with healthcare, or the bureaucracy of healthcare...And, then ... you probably can tell...a Large Huge Bummer came from the sky....make that two:

#1: We have been living on my husband's COBRA since he was "separated" from his job. That is nearing it's end. He has been doing contract work, which has been good, but no benefits. We understood that we likely are eligible for an extension of Cobra due to my LTD (Long Term Disability), well today after countless calls over the last two months to the HR department from his company (which has been outsourced) we were told the "qualifying event" of my disability and receiving of Social Security had to occur within and only within  2 months of his being terminated, not after his severance ran out, or when we started COBRA etc.. so it is highly likely we will not qualify for a COBRA extension. The COBRA folks need more info from SS to determine whether or not we are eligible for "the qualifying event". Don't you love those words? I don't! (or at least do not find humor in them today)


#2 I call Social Security to get the needed documentation. They let me know when I started receiving benefits...which makes me think maybe we are not eligible for the Cobra extension which ends in 2 months. YIKES! So, I ask about the worst scenario case for me and my ability to get Medicare, since I think I am eligible. Well, apparently:

1. Since I declined Medicare, which I did because we had good medical coverage and I was trying to save money not to pay two premiums for medical insurance, I was told that for each year of not taking medicare I pay a 10% penalty fee. The agent said, "The good thing is that premiums are dropping next year".
2. I am not eligible for Medicare special enrollment (which means that you can sign up for it anytime if you have a "qualifying event"), because that is tied only to the "qualifying event" of my husband losing his job, not to the severance package period, or to Cobra benefit period. (Oh Shit)
3. I am eligible for Medicare "Open Enrollment" in January of 2012. I would have to pay the penalty of 10% per each year of decling coverage....and, only after 6 months would I be covered....so that means there is a likely scenario I will not have medical coverage (Medicare) until next July.

Well, there went my day... too pieces. Unfortunately I am not like "some" who can deal without coverage. My condition is in constant need of attending. Maybe I will have to throw the dice and hope next year slows medically down after each year of surgeries, sometimes a couple or more. 

All I know is that the harsh reality of my life is that there is never a respite from constant medical attending be it bureaucratic or physical. I am pissed with myself for missing the boat on this. I normally am on top of all things disability, insurance, but I screwed the pooch on this. 

And, today, as I hoped to feel the release of the grip of the chains, and stoke the joy I had from yesterday's  Moose spotting on a drive my husband took me on, to have distance  from being a patient and the shit that comes with it. I am back into the fray again to sort out the details and make the best I can out of a bad situation. 

Not up for it today....and not sure how we are going to make this work.  Other people do so I guess I have to figure it out or not. The bottom line is that I am sick and tired this whole thing is my life. 17 surgeries, fighting for benefits, fighting for rights, fighting for care, plan ole fighting. Thank goodness I have great doctors, from whom I have to travel 1900 miles, and pay for the extra rent. But that is good...I would not even be writing this without them.

I close this with....I just want to go on a honeymoon with the man I love (we haven't yet because we keep needing to go to Colorado, for my doctors to keep holding me together). He has stood by me, going through surgery after surgery, rough spot after rough one, and the continuing onslaught. I thank him and his encouragement for that. He is steadfast in times of trial and tribulation. He is a solid compass and always says don't worry, we are going to be ok. We have so far been so. I guess I need to rest my rage in his caring hands, even when he is unsure of his future....that is courage....and I should take a lesson in that.

Sometimes Even #Epatients Need To be Simply Patients

Today I have been watching #med2 (the official hashtag) for Medicine 2011 at Stanford Ca light up my Tweetdeck. (There also appears to be another tag #med20.) There are so many great people there including Lee Ase,  Susannah Fox, Sherry Reynold = @Cascadia , Coleen Young, Jen Dyer = @EndoGoddess  and Bryan Vartabedian = @Doctor_V among so many others and too many to list. Earlier this week was The Mayo Clinic's Transform 2011 Symposium in  Rochester Mn. with another cast of wonderful attendants.  You can see the archive of tweets here: #txfm11 or read/watch more here. One session was dedicated to the Transformation Power of Social Media and talks about us patients as an underused asset. Both conferences included scholorships for Epatients. A number of them are members of the Society of Participatory Medicine. Alas I am/was not at either. I am bumming... And, this leads me into my topic, which is the strange conundrum that  I face as a "patient/Epatient". It is a weird tension between wanting to be out there, having an active voice, and changing the world one bit at a time and sometimes your body, and the reason why you are an Epatient having to take the priority. And, therein lies the conundrum. (It is almost like the tension I had when I was working and managing my health)

This churn in my brain started several weeks ago when Nancy Finn = @nfinn8421 from The Society of Participatory Medicine, made a post about upcoming conferences (for the rest of the year), asking if anyone from the society was going to any of the conferences that the Journal of Participatory Medicine would like their contributions.

Upcoming conferences:
September 11-13, Rochester MN: Mayo Clinic Center for Innovation Mayo Clinic Transform 2011 Symposium

September 16-18, Stanford Ca: Medicine 2.0 Congress

September 18-22, Bethesda, MD: AHRQ Leading Through Innovation and Collaboration Annual Conference

September 20, Philadelphia, PA: e-Patient Connections 2011

September 20-22, San Francisco, CA: National Medical Home Summit West (new to list)

September 24-29, Nijmegen, Netherlands: E-Patients Boot Camp

September 25-27, San Francisco, CA Health 2.0 Fall Conference

October 3-5, Kansas City, MO National Academy State Health Policy 24th Annual Conference

October 7, Columbus, OH: 2001 Personalize Health Care National Conference

October 15-18, Boston, MA: American Academy of Pediatrics National Conference and Exhibition 2011

October 17-19, Rochester, MN: Mayo Clinic's third annual Social Media Summit with Ragan Communications

October 21, Washington, DC: Patient-Centered Primary Care Collaborative 5th Annual Summit

October 22-26, Washington, DC: AMIA 2011 Annual Symposium

October 27-28, Berlin, Germany: Health 2.0 Europe 2011

October 26-28, Washington, DC: National Congress on Health Care Clinical Innovations and Cost Containment

October 30-Nov. 2, Nashville, TN: 2011 Planetree annual Conference on Patient-Centered Care

December 5-7, National Harbor, Washington DC: mHealth Summit

This includes the preeminent Health 2.0 conference, put on by Matthew Holt = @boltboy and Indu Subaiya = @bluetopaz at the end of this month (follow related tweets @health2con)which I have been dying to go to for years, but haven't been able to do because of my health constraints ... mostly due to surgery timing, which seems to fall in Fall of nearly every year (for a host of reasons...mostly tactical). boo :(

And, that is the crux of the tension I have between being "out there" and needing to tend to the "home fires".  As I move through this world of healthcare with a developing voice and want to be apart of the healthcare solution I find myself wrestling with wanting to participate in the larger dialogue and my body demanding attention in whatever form it takes that day, or stretch of time; be it too exhausted, recovering from surgery, doing physical therapy, going to appointments, which never seem to end, or whatever combo. And, that is a kicker.

I was so eager, "chomping at the bit eager," to apply for a scholorship for the Stanford Medicine 2011 event, then I realized that I couldn't in good conscience for myself and healing body and that was tough (just finished surgery and heading into another). I was mad for a few days, and then I saw Nancy's post, and I was more mad....then I got through it.

Ultimately I have to remember that the reason why I am apart of the discussion is because of my health issues, and frankly there is little I can do because yes, the body wins at times. And, apparently it does so for others. Look at @Marcela's post earlier today. The wonder of it all is that I can still participate in some fashion even if it is by reading my Twitter Stream, reading and commenting on posts, being playful with a twitter friend, even writing a blog post, and when I can more actively participate go to conferences, like the one I did in May for Mobile Health 2011. Also, I can encourage other #Epatients as I can, like those who received scholarships to the Medicine 2.0 Congress including Hugo and Marcela who I know are members of The Society of Participatory Medicine (I am sure there are let me know) and anyone else who has a vested interest in making our healthcare world a better place. Thank you Twitter friends who keep us up-to-date on health topics like today #med2.  So, please contribute your experiences and let's make a difference by getting involved in our own healthcare to start and branch out from there. 


I would love to hear comments, especially from patients who may struggle with the same issue.

A Synopsis: From Then to Now

My Shoulder

My name is Alexandra Albin, I am what one would call an "e-patient" – which can be construed as a patient who is engaged, electronic, empowered.

I have an orthopedic condition called avascular necrosis – aka, Osteonecrosis: a painful bone disease which essentially results in dry rot of the bone which can lead to collapse. It is due to loss of blood supply to the bone and, in my case, a result of medications given for a misdiagnosed condition of Multiple Sclerosis. "Why?" is another question, but there is no clear answer.  I have had 15 ortho surgeries and am currently both recovering from and preparing for another. Goodness knows why, but I keep trying to save my bones and preserve my mobility. Call me crazy. I was coming to terms not going to the Healthcare 2.0 conference in SF due to the competing priorities of my health and/need for timing my ortho surgeries for a host of entangled reasons, when I saw a post by @Regina Holliday about her #walkinggallery event. As I was wallowing in my misery, I asked her to make a jacket for me so I could participate in abstention. Read Regina's blog to learn more about her moving patient advocacy project. She asked if I had a post about all the surgeries I had and I realized I didn't. So...that is the beginning and end of this tale.

The Past:
In 1994, following a whole lot of life changing events and a sudden kidney infection (sudden in the sense that I did not realize it until I was really sick), I was ultimately diagnosed, by a highly reputable Neurologist in Santa Monica, with MS. I had odd symptoms, like a paralyzed bladder. I was not be able to void even with a bladder filled up to 800 cc. I had to learn how to self catheterize. Ultimately things got worse, I started to lose balance, among other odd things. The Brain and Spinal MRIs were all clean. Dr. Sheldon Jordan, based his diagnosis of my abnormal evoked potentials and my medical history (there had previously been odd neurological events). One of the several spinal tap tests were positive with white blood cells.  Long story short: as things deteriorated, Dr. Jordan recommended having a Solumedrol Dose Pack for ten days; that involves daily three-hour drips, administered at my home. This was followed by tapering dosages of prednisone. That was one of the most awful periods in my life: literal hell!  I was 34. After getting my career going I had suddenly become unfunctional and was taking drugs that jacked up my body and made my mind crazy. I became highly compulsive, angry, couldn't sleep at night (due to the speedy affect of the steroids) I had my entire apartment rearranged and had my piano brought home so I could relearn how to use my hands. Things got so bad that I couldn't hold a cup without dropping it. I ended up in a wheelchair for quite a while. And, adding insult to injury, I developed the classic side effects from taking steroids, gaining 20-30 lbs. Luckily I was surrounded by a ton of amazing people to carry me through a very dark patch of life. Then life moved on and I regrouped, and was back on my online educational career path. I had minor intermittent episodes of some weird neurological issues, but ultimately all resolved. I did do Beta Interferon for several years – to the tune of $1500 per month. (Thank you Dad)

The Middle:
In 1997, I  started having pain in my legs, and thought that they may be MS related. Then we started going around to different neurologists to figure out what was going on. I ultimately saw an Orthopedic surgeon and a Neurologist the same day up at UCSF. The ortho said, "Well, you have this condition in both hips called Osteonecrosis...where the bone dies." The neurologist said, "Well you don't have MS, but now you really have something." So that became the medical issue of the moment...little did I know it would last fovever. Since both hips had this condition, the verdict is that the blast of steroids caused it.

That started the very long curvilinear process that has lead me to Now. And, the long and the short of it is that I have ultimately end up having over 15 orthopedic surgeries over the years, on hips, knees, shoulder, elbow, wrist to save my joints. All the lower limb joints have been directly related to the bone disease. The upper limb ones are unclear.  Some joints were worked on several times, others once. Most have been bone preserving.

Most of the surgeries where performed by doctors in Colorado, who I accidentally came across in 2000 because one local Dr. had the guts enough to say to me (when I learned that I had AVN in knees too), that I should not see him or any other local and go to Dr. Steadman in Vail Colorado. And, since then it has become this weird second part of my life. Some people have go to their Mecca. I have the Steadman Clinic in Vail, Colorado. Other surgeries have been done in California. I have gone to the East Coast, up and down the West Coast to find top orthopedics who could deal with my issue. One of the specialists I saw in Baltimore (who has written lots of papers) was more concerned that I had not been referred to him by Doctor Steadman ("doesn't he know who I am?"), and that I had a pre-publication version of his article. He then recommended two surgeries, back to back – just days apart on both my knees. So much for Baltimore. (I don't care how talented you are). I was sent to Dr. Bugbee, in San Diego, because Dr Steadman wanted a second opinion before he and I started our series of knee saving surgeries.

My FVFG

I have had a host of different types of surgeries....I have had arduous recoveries and those that were a breeze. The first surgery was bilateral hip surgery with no weightbearing for 3 months. That was awful and dumb in hindsight. Ah Youth!  I have had wildly experimental surgeries. In 2001 I had what is called "Free Vascularized Fibular Graft," where they harvested most of my fibula and implanted it as strut to hold up the hip head while providing a new blood supply. (you can see my missing Fib in the standing Xray pict above) That was a difficult  9 months recovery. Other experimental surgeries include one by Dr Philippon, when he implanted an OBI biomatrix plug (bioabsorbable bone graft substitute) to repair the large lesion in my femoral head, along with a series of microfractures, similar what they are now using in Rat models for growing bone parts using stem cells. AMAZING! (But, that did not work so well in me. Nearly two years  on/off crutches = grouchy!).  I have had a lot of microfractures, spent lots of time in a CPM machine, tried HGH, drank worm juice tea (chinese herbal recipe), acupuncture, ultrasound to help stimulate bone growth, had several PRPs (Plate Rich Plasma injection...a lessor form of stem cells... full of growth factors). I even had conventional procedures like a total hip replacement by a top orthopedic, whose "speciality" is failed hip replacements. That one didn't go so well: I now have a constant and pretty intense pain in the middle of my femur from a condition called "end of stem pain", that is a whole other story and series of problems.

Acupuncture time!

I worked through most surgeries; once while I was being rolled into ER they realized my laptop was still plugged in. I had to ask them to wait. I even went on an extended two week business trip all over India on crutches. Mind you, they don't do handicap very well there. They don't have elevators in most places even airports. The solution was to have me carried in my wheelchair up stairs and to the plane by a team of men. Imagine doing that while traveling with the VP of  a multi-billion dollar company and your boss. That trip was my career undoing. Once I was home in the US I ended up in the hospital throwing a clot. OY! It became my body or my work. My body won.

One Year of EOBs 

My Medical Records

Since that fateful trip in 2007 I have become a full-time patient. It is my job. It is my career. I often use the term I am the CEO of my body. I have learned the hard way the ropes of being my own advocate. Have developed enough confidence to make difficult decisions about a condition that is not well understood. I have had to scratch, fight, and claw for my rights as a patient, from dealing with the medical to disability insurance quagmire. I have also had amazing humane caring moments with caregivers throughout the medical chain and made friends in the process.  I have learned more about beauracratic issues related to a chronic illness including CPT and ICD9 codes, dealing with those marvelous EOBs, how to get your medical records, how to correct coding issues, know what your insurance approves and disapproves of, and appealing a denied procedure (like my $33K Femoral Acetabulum Impingement (FAI) surgery that was denied by my medical insurance company – the same insurance company who sponsors the research that Dr Philippon is doing. As you enter the Steadman Clinic you see the "Aetna Hall of Champions" over the hallway with Athletic Jerseys  lining the walls thanking the Drs for saving their careers.  And I have had to deal with the whole package around what laws govern your insurance company and what rights you have to appeal decisions based on how your insurance plan is structured (ERISA anyone?).  I have been nearly buried by my disability insurance company that tried to deny me coverage and even place surveillance cameras on me and my house. I have run the gambit of dealing with the Doctors' egos who think they reign supreme, or who don't like someone who asks questions, or  misdiagnose you, or when they plain old run out of ideas (and don't have the guts to say so). I have learned that you can have good surgeries by mediocre doctors, and bad outcomes by top doctors.  I have fully come to appreciate the fact that medicine is a hybrid of science, art, and human nature (the good and the bad). I have also learned that feeling safe with a doctor or clinic (whether or not they have all the answers) counts in spades. And, run when you don't really trust what you are being told or who is telling you (although that taps into that second guessing yourself piece, which I do a lot).  And, I know I have still so much to learn.

In between and On the way to surgery

To wrap up this long tale...I am getting ready for another relocation to Colorado for surgery and recovery for 2 months. This is not the life I planned, but it is the life I live and I am doing what I can to keep it interesting and take the best care of myself that I can.  Who would have thought being a patient could open up so many different journeys from deep sorrow to moments of epiphanies,  triumphs, and connections.  In that process I have really enjoyed becoming apart of the larger movement of the Epatient community on Twitter, FB, blogs, wherever. I never was much for support groups other than to data mine. I even joined the Society of Participatory Medicine. I thank so many people, near and far,  for  getting through this thing call life and for helping me take my story a little further than myself and raise it above the immediate. There times when that is tough, but that is the ultimate goal. And, I thank Regina for prodding me to consolidate my story in one place. Now, when people ask me I can say... Hey: read this long post...

FICO® Medication Compliance Score: #FAIL

Today, on my list serve group at the Society for Participatory medicine, the question was raised about the NY Times Well Blog post by Tara Pope on FICO®s new Medication Adherence Score. I was also inspired by @epatientDave pointing out that @nyceve1 had a blog post this morning. FICO-scoring-millions-of-Americans-on-medication-compliance .

And yes I am angry...because if you look FICOs website here is what they say about their new tool, that is easy to implement. I recommend that any self respecting patient contact them, because they are not in the business of helping patients, they really seem targeted to the Pharma companies, and  "Care Organizations" and "Health Care Payers" (I don't think they are talking about us).

Check out the tabs and pdfs for some fun reading...this is a dangerous tool that doesn't really meausre true compliance...if someone took the medication. So what if I picked up the medicaiton, or opened the glowing cap. As someone on the #SPM list serve group pointed out, "We will not be able to fix compliance problems if the denominator is as wrong as the numerator!!

The words that rub me the wrong way are highlighted in bold. Nor do they really say what data they are pulling...only the following: "third party data sources, name and address, prescription claims when available."

So, yes, I have got my cynical hat on....and my take away is (unless we revolt) Pharma companies are given tools so they can better target their marketing budget and relationships can be further leveraged with doctors ... and, enable deeper relationships with insurance companies who can have further control of what medications are on their formularies, or potentially use the data to develop additional criteria (of course they will use pretty words to make it seem fine) for dropping coverage for patients due to a poor  FICO® score.

It is bad enough that Pharma companies sell their drugs direct to patients, and take doctor offices out to lunch...Anyone see the movie "Love and other Drugs"?

So, I sent them an email. Let's see what they say.....and you can too on their contact page or call US (toll free): +1 888 342 6336

Here is information from the FICO site: (Cynic Hat on)..... highlighted a sampling of text all in blue Oh, and its easy to implement....

FICO® Medication Adherence Score is a powerful tool for predicting individual consumer’s likelihood of adhering to a drug regimen over the next year. This fully HIPAA-compliant solution helps brands identify patients at highest risk for non- compliance, direct marketing tactics where they have the greatest impact on medication adherence and health outcomes, and maximize the return on the consumer marketing budget. While pharmaceutical marketers typically rely on self-reported adherence data to identify non- compliance, FICO can score an entire patient database or list quickly and efficiently using only an individual’s name and address. Many pharmaceutical companies help address this challenge through a variety of consumer-directed programs. FICO can boost the effectiveness of these programs through a revolutionary data-driven approach to identifying a patient’s propensity toward medication adherence. Using the same world- class predictive analytics used to create the FICO® Score, the FICO® Medication Adherence Score accurately predicts an individual’s adherence propensity using a wide array of third-party data sources commonly used by direct marketers in a variety of industries. 

FICO® Medication Adherence Score leverages a patient’s prescription claims history when available and pulls on other third-party data sources when no other information is present.  The result is a powerful and versatile score that can be applied universally across a patient base to predict each patient‘s adherence over the next 12 months. This tool enables care organizations to gauge the right level of action across the patient base to optimize care, case and utilization programs— setting a universal baseline assessment on which survey results or other information can be overlaid if desired/present. The result is a powerful and versatile score that can be applied universally across a patient base to predict each patient‘s adherence over the next 12 months. This tool enables care organizations to gauge the right level of action across the patient base to optimize care, case and utilization programs—

The Medication Adherence Score is available for common chronic conditions, including diabetes, asthma, high cholesterol, hypertension and depression. Harnessing the predictive power of multiple, rich third-party data sources, Medication Adherence Score improves the effectiveness of all intervention targeting efforts.

Recent FICO research has shown that third- party data sources can effectively identify drug adherence propensity and can enhance the precision of models using claims data only. While some of these predictors, such as age and gender, are known to be associated with disease prevalence and adherence trends, FICO has unlocked the predictive power of other data sources, such as retail purchase behavior, geo-credit profiles and income/wealth indicators. The result is a powerful assessment tool that works across a prospective, new or existing patient base with minimal information requirements.AA-compliant solution helps brands identify patients at highest risk for non- compliance, direct marketing tactics where they have the greatest impact on medication adherence and health outcomes, and maximize the return on the consumer marketing budget.

Learn how your organization can benefit from the most advanced analysis solution for predicting medication adherence. Email us at info@fico.co

Mobile Health 2011: What Really Works: A “Patient” POV

This blog post has been accepted by the Journal for Participatory Medicine: Please review and comment there. Mobile Health 2011: What Really Works: A “Patient” POV