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...