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.

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...

Tips for Understanding your Medical Insurance

Dealing with and understanding any medical insurance requires some talent, patience, and mostly perseverance. What happens when you have to change policies? That can be a stressful experience. 

Recently, I had to change from my fabulous traditional indemnity policy (straight 80/20 split) with no distinction between in- and out-of-network benefits) to what is considered by modern day standards pretty darn good insurance a PPO - Plus (boo hoo). The "Plus" only means you have additional out of network benefits.

After I whined and moaned for a while about my fate, I decided to bootstrap it and understand the new animal I was dealing with. And, boy, can it be complicated. Pay special attention to the language; it can be very obfuscating.

Here are some basic questions for the insurance company

1. How do copays work? Do they apply to deductible? Most don't.  That is simply what you pay out of pocket. Your deductible is the "co-insurance" part of the deal

2. What is the definition of in-network and out-of-network benefits? It is important to understand what they mean by whatever breakdown figure they use (for this example I am going to use a  70/30 split).

   What you will ultimately pay is not necesssarily based on what the doctor bills you. It is dependent on what the insurance company deems as "allowable". (And, all use different fee schedules there are no federal or state guidelines, although all insurance companies go off certain standard metrics).

   So, let's say you get a bill for $150 for an out-of-network doctor. Your insurance company may say that $100 is allowable by their schedule. They base their reimbursement on the allowable fee of $100. So, that means they pay $70 and you pay $30. The other shoe that will drop for you is the $50 that insurance did not allow. The docts office will "balance bill" you that amount + your coinsurance. So, your total out-of-pocket costs will be $80. (Sometimes, you can get a doctor to write off that $50, but you have to be proactive and ask.). This is not the same as a co-pay.
   

The other part of the equation is to understand how you provider works with the insurance company. Usually, doctors offices know who they contract with and who they don't. Remember it is your job to ask, so you know what your cost could be. 

There are many flavors of the same insurance company. Just saying Anthem won't get you very far. For instance, Anthem in California is only run by Blue Cross (not both Blue Shield and Blue Cross). You need the specific insurance info, which is determined by ID and Group numbers on your ID card. Those numbers do more than simply identify you and will let you know what the score will be. Think of it as your medical credit card with your personal rate information.

1. If you are not sure how your new insurance will treat a provider (this is usually only significant in the out-of-network scenario(s)) You can always ask for the diagnosis code(s) (ICD9) and procedure code(s) (CPT) the docts office will use for your treatment/visit.

   Then go back to the insurance company and ask to run a test claim. That should give you a good guideline on how insurance will pay. When you do this, make sure to ask if the call has been recorded, and always take good notes that summarize the discussion and outcomes (include name of person, date, and summary). Insurance companies always say that no claim quote is valid until it is completely processed. Good data is key. In the event that something goes wrong, you can point to the conversation you had. It is always more difficult to recreate your memory.

2. If you go to a hospital in your area, make sure you find out if both the facility fees and doctors fees are covered. Ask this of the billing department. The receptionist checking you in is often not a reliable source of information. I have come across cases where the facility is covered but not the doctor (i.e. radiologist, pathologist, emergency). It is a serious drag to not know this in advance. You think you are all covered, but then you get a $450 or more doctor's bill.  

   The hospital is generally not proactive in telling you this (unless you get someone who is on the ball, which in my experience is not very often.) Tell me, how many times have you asked the same question from multiple representatives of a facility or insurance company and gotten as many answers? Please note: Most say, that they do a courtesy billing. That does not mean that they are preferred providers of your insurance company. 

These are some simple techniques to help you better manage your costs. Until our medical system changes and patients have better consumer control over their costs, these simple techniques have been the only way I have some measure of understanding and controlling costs.

I highly recommend doing these basic steps before you need to use services. An emergency can happen at any time, as I have found out the hard way. Once you get a handle on what the expenses are (especially your out-of-pocket ones) before you have any treatments, procedures, etc... you will be much better in control of your outcomes.

Never assume, always ask questions, because it is in your best interest to manage the nuances of your healthcare and be a better CEO of your healthcare and body.