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...

More about Medical Bills and the Insurance Morass

Following up to my rant/post yesterday I want to share two articles on dealing with the medical bill morass.

The first outlines some of the important techniques that can be successfully employed to help reduce out of pocket costs. It comes from a real life experience of a couple that tackled their spiraling costs. I have used a number of the techniques and it mostly works. Sometimes, like I said yesterday, it is random based on who is on the other end of the line. So, it always good to try and try again. 10 Ways to Cut your Medical Bills

Another article a couple of days ago addressed how a family member stepped up to help advocate for her brother. Negotiate Your Medical Bills And, through Htzpah, persistence, looking over an itemized bill for a hospital visit (that is enough to make anyone sick) -- Crimminy, up to $10 for a Tylenol pill. It is a sad state in this country that we have come to this.

In addition to some of the techniques identified I use the following:

1. Always, Always, keep notes for each conversation. Write, the date, who you spoke to, what about, and followup action item. This is useful when some action agreed to does not happen (no matter who it is) you can leverage that they said that they would do x, y, and/or z. Lack of Followup is great leverage.
2. When you review a bill, there are CPT codes associated with the charges, if the charge has been denied by your insurance company, find out why, then go back to the provider of services and see if they can legitimately change the CPT code (sometimes they can) and re-bill.  That has helped save me money in a number of circumstances. Each insurance company has slightly different policies and coding. I am beginning to see this as a new pattern.

If all this too much to do on one's own, or if, one doesn't have a family member, there are always professional advocates, who charge a fee, however, the reduction of stress of dealing with, let alone understanding, EOBs ( "Explanation of Benefits" for the luckily uninitiated), medical bills, insurance policies, and negotiating down the bills, may be worth the up to $80/hr fee some people pay. Benefit Advocates Help Reduce Fees.

Those are my hot insurance billing tips of the day. Good Luck and give a shout if you have further suggestions or need help.

Local Orthopedic elimination process

I have been on several doctor appointments over the last two months. Today was a follow-up with a standup local surgeon. There are some things that make me feel very comfortable and others that make me puzzle.

Today he determined that I have tennis elbow, or some other overuse disorder of my elbows. I have problems in my right shoulder that may or may not need surgery. I have bilateral knee pain, with predominant right knee swelling due to osteoarthritis, secondary to avascular necrosis (osteonecrois, avn, on, what have you). I have left hip pain due to avascular necrosis.

On the whole he made sense, up to the point when he said, on the one hand, I should not be pulling weeds, or other such work, and on the other hand, that he was not comfortable taking on the paperwork or bureaucratic management of my LTD. When he asked if I was working, I said that my body has become a full time job. And, that I cannot imagine how I could take on anything else. This truly has become a full-time job -- from Head to Toe, Knee to Elbow, Hip to Shoulder and whatever junctures inbetween. Wow. I really am, still, overwhelmed how to manage this process. it is hard to keep a business mind about it. But, I made a plan to follow through with two local orthos and try to create a support matrix here, at home.

Sometimes I think I am too deep and critical it makes we rattle my head. Sometimes I wonder if I am making this complex. I am sure, sometimes I am. On the other hand there are times that I think that is cannot be as complex it seems. I really am trying to focus on creating a local team of doctors to manage my case. I have been steadily working on this since postponing the hip surgery, due to the constellation of medical issues that cropped up. The progress seems so increbily slow. Despite my incredible frustration I am sticking to the plan. I do ultimately need a relief team. I feel like I have been in the trenches too long by myself. I am really tired.

Where is House when you need him?

Have you ever had the feeling that you are just not happy with the care that you receive? Need a more supportive doctor? Or, a doctor that talks to you rather than at you?

Well that is where I am at. I am so tired. I am tired of not having proactive, intelligent medical team to help me navigate the increasingly complex world my body seems to choose to live in. I have lost control. I am along for the ride hoping for the best. And, trying to fight for the best.

On the orthopedic front, I have up to now felt fairly well taken care of by virtue of the team in Vail. With the separation from the team I fell so much more vulnerable. It frustrates me to no end.

Somewhere in my heart I believe that I should be able to surround myself with supportive, intelligent, and reasonably proactive care. Wow, what a concept. The fact that this is not happening is really maddening. As a result I need to actively pursue and ultimate go through a measured and controlled interview process for new doctors in those areas of care that I am particularly concerned about. I know it may sound egotistical, but, currently more times than not I feel like I could run around certain doctors methodological approach. i really want someone or someone's to take things off my shoulder. I feel increasingly burdened and a sense of no where to turn for a helping hand to lift me out of the morass of medical complications. Between the AVN, ON, osteonecrosis, avascular necrosis (whatever you call it) of the hips and knees, and the whole bladder/UTI, etc....I am sick of it.

New promising surgery for osteonecrosis of the knee

I found this article yesterday on a new procedure implemented by Doctor Goodman at Stanford. Promising surgery for osteonecrosis of the knee. This is also in the resource links area.

The fact that this is coming up now is quite ironic given where I am at with surgeons/doctors. more to come