Week 6: Glass Half Full

I used to hate going through orthopedic surgery recoveries. And, I do this a lot...where several months are dedicated to simply getting back on my feet, and then more to get strong on my feet. This latest surgery was a complicated revision of my failed total hip arthroplasty that was done in 2009 and it is going take around 9+ months to  recover. I am currently on week 6 and hoping I can soon increase my weight bearing. We will find out next week after X-rays are reviewed. I am currently only toe touch weight bearing on my left leg. It is difficult to maneuver especially with the bulky brace

What I have learned is how to leverage the downtime and have a small catalog of the positives on being stuck in bed:e

#Advantages of being totally laid up.

1. Get to sew those things that I been meaning to do (for the last year) but was too busy to do it.
2. Get to do all that fun sedentary paperwork that I have been avoiding. 
3. A lot of paper files are being jettisoned! 
4. Less of a mess to clean up because I am not running around making a mess
5. Get to go through all my medical paperwork that I have been avoiding
6. When I don't feel well I care less about those niggly details that usually drive me batty
7. Get to be introspective and think about the larger picture of life
8. Get to clean up, clear out, and organize my apps on my IOS devices
9. Time to pamper my cuticles
10. Get time to read my magazines and books
11. Get to get in touch with people I haven't had time to be in touch with

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!)

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...

The second guessing yourself game and the Havoc it creates

Finally, I am going to get a lightweight wheelchair. I cannot believe that I am so excited. But I am. Mostly because of the satisfaction that comes along with it.

I started battling for use of a wheelchair during my recovery over 3 weeks ago. That was when I was told, at the hospital by the discharge planner, that was a durable medical good that was not covered by insurance, along with the shower chair, raised toilet seat, and wheelchair cushion. This was after I spent a great deal of effort to determine what my policy covers. I even, in the hospital, spent hours highlighting the insurance document to show the discharge planners what was covered. Something that they never looked at. Something they pushed me back on. And, a discussion I crumbled on, and nearly gave up the fight, mostly, I just didn't push for what I really needed (a light weight wheelchair). I accepted the 2nd best option – any old wheelchair. And, that was not very good for any of us. So, since we got it I re-geared myself up to getting a light weight one. And, I have. And, it is covered.

So, what is the takeaway. Don't second guess yourself. Don't doubt yourself, especially when you know what your rights are (as I knew by my insurance company's medical policy bulletin covering durable medical goods). It is easier to doubt yourself when you are not feeling well, especially in the face of pressure and a system that seems to run on denial. I know I buckled. 

The good thing is that I regrouped, but it took 3 weeks longer to get what I should have gotten. Had I stood my ground I wouldn't have wasted the additional time (at least 8 hours in total) – day's wage – to get the right goods. So, next time I will stand my ground. 

I wonder if other people do this?  Maybe I am the only one, but I doubt that. HA!

Share if you have similar stories.

When you don't look the part

During my last several hospital stays I have taken to wearing a camisole (helps hold up the chest) and loose yoga capris after the initial surgery etc .... instead of a hospital gown. And, boy has that caused a stir to the point of eliciting comments from caregivers.  "Wow, you look like you are ready to leave." (on day 2 post surgery, while I am shuffling around with my walker). Or, you don't like you have anything wrong with you (What about all the IVs that are sticking out of me?). 

I don't think people say these things to be provocative. I guess I get provoked.  Sometimes I take it as minimizing my suffering or what I am going through. And, I do the same thing. I try to look like and act like there is nothing wrong with me so that I can pretend that there is nothing wrong. 

It does raise the question/issue of how linked people's perception are to being sick, including my own. You have to look sick to be sick. It's weird. It is almost as if, the legitimacy of struggle/illness gets reduced when one does not look the part. That happens to me on a regular basis. When people see me in person, check out picts, especially when I do not have an aid in hand (crutches, wheelchair, walker, cane) then I must obviously be OK.  "Oh, you must be doing better." When in fact, I often don't use a cane, because it hurts other joints, or I am too lazy, or whatever reason. I am in constant pain in so many places. But, because I am athletic looking, thin, long legged, I must be ok. When I went to the hip replacement class, prior to my surgery, two separate nurses checked to make sure I was in the right class. I insisted that I was. It depressed me, or should I say enraged me. It even makes me second guess myself. ..." Maybe I really am OK, and have no problems, or have lesser problems than I pretend I do ". When I allow those sentiments to grasp hold of me it can be deadly to the psyche and hurtful.

Its a conundrum. One of the many that I have had the pleasure, so to speak, of tackling in the experience of being a patient.  Mostly I have come to accept the frustrations of my condition, there are times, especially when I am fragile that I react. But overall I have gotten to accept the humor in it all and so try to find the comical. 

If I find myself needing to react. I slyly ask people, "Didn't your mother teach you not to judge a book by it's cover?"

If I didn't I would be in a very unproductive place.

Hospitalization Recap and Analysis: How you survive a hospital stay

One would not think that lying around and recovery could yield so many different unique experiences including the good, bad, and ugly. But, it is true. I have had one of the wildest health and life adventures starting when I came out of traditional hip replacement surgery ten days ago, at Stanford hospital.

Veinipuncture: Each day a new vein supply had to be found since I kept reacting to the needless IV.  They had to bring in the vein specialist, which took over 4 hours, who put my IV right in the bend of my wrist which really was unpleasant. At the end of it all I was left with marks and bruises all over my hands and arms. The first days my blood pressure was so low that I couldn't lift my head off the pillow without spinning out. That was fine, where was I going. Not far.

Rounds and Sleep deprivation: There was the usual routing of being woken up every 4 hours throughout the night to check vitals, and then of course as soon as you do fall asleep the docts start the rounds at a god awful 4 AM. I desperately kept the sheets over my head with the hope of sleepy some  Thank goodness I brought lavender essence, an eye pillow, headphones, and my Ipod to play spacey music. (these were the essentials to maintain sanity and get some sleep). 

Neighbors: Unfortunately I had a pain in the ass neighbor, who, decided because she was up at 5 AM, so should everyone else. She had no sense of others. Asking for coffee, talking loudly with the nurse at all hours of the night, and tweaking out when her friends didn't show up when she expected them to. She is the only neighbor in all my years of hospital visits that I wanted to throttle.  I know I should be compassionate, but she really lacked it.

Pain Management: There was a young resident from the Stanford Pain Management Clinic, Carlos assigned to my case, who despite countless conversations with me still had it stuck in his head that I was on Methadone for pain management since last year. I kept reiterating that was not the case, but he clearly did not get it as evidenced on my discharge summary, that I needed to quit methadone. Clearly they are so immersed in their own process/bureaucracy that they believe their own bullshit. The pragmatics of that experience evade me. I guess because they wrote something down it must be true.  Isn't that a logical fallacy? A couple of times the whole team of 5, including head honcho, would come in and talk to me for whatever reason. I will be curious what that bill will be like. 

The EHR system, EPIC: Stanford now has a "sophisticated" and probably expensive electronic health record system. To provide meds, they have to scan your wrist band. However, when they record vitals, they only confirm your name. As a result I noticed last one evening that despite a nurse checking my name, was entering data into another patient record. WOOPS. She asked my name, but the name on the screen was somebody else's. Although in my situation it was not life threatening, it could have been. That definitely raised my blood pressure. It seems more foolproof to use the same protocol as they use with medications.

Nurses: Nurses come in all forms, good, compassionate, old school, those that go through the motions, and those that are somewhere in between. The last night I was there I had one unbelievable experience. It was the first night without a catheter and the first day I started ambulating with my little walker. I needed to go to the restroom and requested help due to the mobility restrictions and lack of stability. The nurse said, "Oh, just go to the bathroom on your own, and drag the IV rack with you using the walker." I didn't respond because I did not know what to respond with. Are you fucking kidding me? is what I thought and wanted to say. Finally, I got an nurses aid to help me. She left me on the toilet for over 20 minutes. Finally, I got fed up and tried to drag myself back to the bed with the IV rack in tow. Despite my gingerness, the IV rack got stuck in the wall mounted television's cords. I was so pissed. I tried tugging at my IV to no avail. I was stranded between my bed inches away and the TV. I wanted to teach them a lesson and was seriously thinking of ripping it out and having them find me on the floor. That would learn them, but maybe not.

Discharge Planner: Discharge planners come in many shapes and sizes.  They are supposed to help you with the transition home and arrange for essential equipment to be brought to your home. They are very sweet, smiling, reiterating how they are here to help you, saying, "Please ask me any questions and let me know if I can do anything for you." When I asked for a wheelchair and shower chair (due to my restrictions and concern for preserving my other joints) the conversation went south. They said, "Oh no, insurance won't pay for that, you will responsible for the charges, it will be cheaper to get that on your own." I even spent several hours in the wee morning the evening before discharge highlighting the relevant sections, criteria, and codes of my insurance's clinical policy bulletin governing durable medical goods (DME) to  show them what my benefits were. And, all I was met was with resistance. They wouldn't even look at the document. All they kept saying was that we want to help all our patients but you realize you will be financially responsible. I kept saying, "... fine, but please if the criteria are met, can you please use the codes and terminology that my insurance requires to get things covered." I believe, if I have insurance, I should get it to work for me as much as possible. For Christ sake, for a shower chair, the requirement is that I cannot stand, which I cannot. Finally, I asked, through a torrent of tears, what is the worst case out-of-pocket scenario for these items. For the shower chair it was $27.00 and the wheelchair it was $56.00 a month.  That is far cheaper than purchasing on my own. The cheapest shower chair is around $45.00. At the end, I got what I wanted, but it was a horrid experience. Thankfully, I was right, insurance covered all the DMEs I requested. (I found out later through the case manager that my insurance company assigned to my case that the situation should not have happened. She never was asked what my benefits covered.)

So, that is a not so summary of the highlights of my 3 night stay at the great Stanford Hospital. An acme of California's medical systems. I remembered from my last experience how much I hate that system, and this time it was even worse. It is shocking. Everything is so specialized and no one seems to know what the others are doing. The continuity of care and follow through are fragmented. Dr Maloney's team, was at least on top of the things they needed to be on top of. This experience reminded me and reinforced the reasons why I have stuck with the Colorado team and Vail Valley Medical Center for so long. Increasingly I am thinking smaller is better. People are less disassociated from the larger picture and service is overall better. For instance, I prefer Ace Hardware store to Home Despot (oh, that is Home Depot). The prices may be higher, but you get good customer service and knowledgeable staff. 

The lesson in this tale is multi-fold:

1. Don't blindly trust the system including the people in the system. It could have dire consequences.
2. Be educated about your insurance policy.
3. Make sure you know what is happening around you. 
4. Be your own advocate or have someone else be your advocate.
5. Have notes written summarizing highlights of important conversations including names and dates.
6. Bring personal small comfort objects, whatever that is for you. 
7. Bring earplugs and try to get the bed farthest from the door (very helpful for sleep).
8. Bring a good dose of humor. 

The Challenge of keeping on going

It certainly has been a while since I have had the focus, energy, and surprisingly time to make a post. This is ironic since I am not a working professional these days. But, I have to admit, I am not sure where the time goes....

I do know I have had now two surgeries since the end of August. The hip repair has gone relatively smoothly, and now I am at the beginning of the shoulder surgery, and that is quite a new experience. it is tough. It is incredibly painful. I have been trying to not let it bring me down, but it is a challenge. It is not so much this surgery alone, but it is the whole package of ongoing surgeries.

Although I try not to let it get to me, and put a positive face forward, but my life is so much a cycle of pain, recovery, regrouping, physical therapy. It is increasingly leaving me feel disconnected from the rest of the world. Isolated, I have noticed that is has increased my feelings of not having real friends. At the same time, I know that they cannot really understand what I am going through. My primary connections these days are those I pay in one way or another -- physical therapists and other medical staff. That can add a layer of anger, disappointment, and frustration. That can be followed by feeling bad about feeling bad, which is a destructive cycle.

Some years ago my life vectored off into a place that few go. I have tried those chronic pain networks and my own disease networks. Mostly, I find those irritating and depressing. A lot of poor me's (that is mighty judgmental). At the same time, I can see value in people gathering together to vent. One, cannot always vent with and to their friends.

I have to go rest now. I needed to uncork the percolating feelings so that I maintain my sanity and keep on task. I am doing the best I can.

6 days Post OP -- Ok so now it is 7 days -- now it is 14

Well, this has been a long haul. It is hard to believe that just over 6 weeks ago, I/we were put in the position to make the decision to come back Vail for and unplanned surgery. This was quite a surprise for someone who nearly schedules their life around surgery. Sad but true. On the left is what the livingroom looks like in the morning after I "scrabble" out of bed to head to PT. It has turned into central recuperation station.

In synopsis, the shit hit the fan July 18th. 

So since then, we (Larry and I) have been grappling and scrambling with many complicated issues from setting up the house to be taken care of, along with Enzo, addressing changes in the kids visitation weekend, getting a house sitter, fixing the frigging leak in the pond, blah, blah blah, getting a gardener so that I don't loose the garden I started.  It was like being squeeze through a tiny hole that neither of us were small of enough to go through. But, thankfully, despite multiple hiccups we made it through and I am here 6+ days post op and doing fairly well.  

We literally left California, on August 18th, 1- not knowing if my disability payments would continue and 2- whether the surgery would be covered. (That was stressful). Thankfully point 1 was resolved, only because I was having surgery. Apparently one of my many doctors actually submitted a report stating I was capable of sitting continuously for 6 hours a day. And, to top it off, he charged me an arm and a leg ($800) for one office visit, of which he will not write off any amount. That is insult to injury. The insurance battle is one left for me to address once I am a bit more clear headed.  

We arrived in Vail nearly 2 weeks ago, Monday. I had four days to get the condo -- 2 + multiple loft bedroom and 2 bathroom condo together so that it was functional and less cluttered. One of the challenges of moving into a fairly high turnover unit is that there is chaos in the kitchen and furniture is packed in. Additionally, there were many other mechanical issues we needed to address so that we could have a dining table and chairs that would hold together -- for that we worked with Ellen Eaton, one of the owners of  Smith Eaton Real Estate who is on the ball and responsive. I would recommend her. And, since I am particular and need a certain feel to the environment I could not rest until things were workable, down to setting up a makeshift office space. We went to the Thrift shop, Walmart, and local consignment shops to setup house just so. And, we made it under the wire, when I got on my bike Friday morning to get to the hospital for surgery.  

Now, ten plus days later, any many physical therapy sessions later (2xs a day seven days a week). I am beginning to be more clear headed and able to do something other than be attached to machines all day long, which is currently mostly the case. 

When The Going Gets Tough the Tough Curl into a Fetal Position

Well, that pretty much sums it up.
It has been sheer hell. I am in over my head. I am wondering what I am doing. I am going to Vail for more surgeries. Yes, MORE! The fun never stops. 

Despite being given SSI from the federal government for my chronic medical condition (including osteonecrosis). My disability insurance company, despite having a slew of MRI test results, recommendations for surgeries, has  suggested that I  my disability would be terminated. The implication was, if I can ride a bike for 10 mins I should be able to work. Frankly, there are moments that I would rather have my legs chopped off, so I could have wheels instead. Really! I hate getting out of bed, sitting, walking, and getting up and down

All of it is a painful mess, consolidated in one body, at the same time. There are times I just wished to disappear rather than stand and fight for my rights and dignity. Hence..... curling up into a fetal ball is sometimes all I can do/want to do. There sis no rest for the wicked. As soon as you win one battle another bigger one looms, and frankly (to use the word I learned from my wonderful boss Carline) there are times I have nothing left. I am supposed to be taking care of my body and mind. It has become, so often, a burden to achieve. The mental and emotional energy to justifying my medical stuff, often takes precedent.

I am disappointed that my posts cannot be, these days, much more than spews of  the immediate. There are so many exciting topics to cover from a patient management POV, based on abstracts from my experiences, such as the mistruths in your medical records (and how to correct them) -- yes this can happen -- watch out, and how to be proactive in your medical care (and when not to be) -- that can be a fine line.

It is time to throw in the towel for this round of battle. 

Probably, if I can stand back, the lesson is how to choose your battles, and those battles you choose, be prepared to disengage.

That is the hardest lesson for me. OMhMhMhMhMhMhMh

Back in Vail Again

It has been a while since I posted. I have had so many topics I have wanted to cover, but alas, life took over. So, I am writing this as I am sitting in the waiting room at the Steadman Hawkins Clinic waiting to see the doctors -- Dr Steadman and Dr Millet today. The doctors and physical therapists here are the best I have ever met. There is a level of consistency in the quality of treatment in all the different joint areas that I find unparalleled (and I have been searching, desperately to create that closer to home).

I have tried so hard to break the Steadman Hawkins clinic habit, but, I cannot seem to find doctors that 1- are willing to dialogue with me about the problems 2- are willing to think outside of the box, and 3- are willing to tread into non-standard treatment waters. (This is especially important when I am consistently challenged with perpetual joint issues -- first it was hips and knees, now we have added a problem shoulder and bilateral elbow problems. Christ, for a relatively healthy, strong, athletic person it seems very odd to be having all these joint problems. An additional component to the Vail cocktail (and sometimes the most important one) are the physical therapists that I have worked with. They are some of the most dedicated staff I have ever met. These are the staff of the Howard Head clinic in Vail. They focus on the patient, not on the clock. Sometimes I have had PT last for 5 hours and other times much less. Sometimes you have to wait, but I would rather wait for someone that is proactively trying to solve my physcial problem, rather than have an ontime appointment with someone who goes through a standard routine.

In the one session I had here today, they discovered a couple things about my knee mechanics, that no one ever thought of looking at. With scribbles on my knees, I stepped up and down on a platform while two therapists looked, measured, and tracked how I was mechanically functioning. In that process they were able to make modifications to my physical therapy program that have already made some differences in how I walk. I was once again duly impressed. (This is why I keep coming back).

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.

Arghhh! just call me Lucky

Not a good day. My right knee, which has minimal osteonecrosis has flared up, is swollen, and hurts when I step. FUCK! Yesterday it was just fine. I went for a 4 mile bike ride yesterday. Bike riding is the last bastion of freedom and exercise I have left. So I am bummed.

Feeling sorry for myself. Feeling a bit forsaken. Wondering why me? Especially with the looming concern of my right shoulder. Gosh, I really hope there is no osteonecrosis there. I really hate being so laid up. I feel like I am wasting my time. I know that is not what I am supposed to feel, but I am so frustrated with all this. So, for today I will relax, watch movies, and simply chill. And, hope for a better tomorrow.

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

What to do when a doctor has nothing more to say

My knees have been having a new cycle of symptoms that have replicated themselves a few times over the last year. I have had surgery. I have had physical therapy. I have had mental therapy. I swim, do home exercises, and other assorted mobilizing activities. I have had consultations with a knee replacement doctor, who said, essentially, that I was sensitive to pain and needed to go to a pain management clinic. Finally,  I asked my current knee doctor in VAil Co what to do. He had nothing to add. I was quite confronted with the emptiness of no response. Woah! That left me in a personal place of OK, Now what? Ultimately, this forces my hand to find a doctor locally that can manage my case and that has been less than easy and comfortable.

The begining of this story

My name is Alex, and I have been diagnoses with a bone disease called avascular necrosis a.k.a. osteonecrosis nearly 10 years ago. The ironic part of this disease was that it is the result of medications taken for an alternate mis-diagnosis of Multiple Sclerosis, given in me in 1994.

10 years ago I did not realize how extensive the bone disease was.-- in terms os impacting my daily life, defining me in so many ways, a gift in some perverse sort of way, a galvinizer. There are so many adjectives I could throw at the end of the thought.


None the less, it is my life, for whatever it is worth. I can say that in many ways I am a very lucky person. I am surrounded by wonderful caring people. I have not been alone a single day since my surgery in another state,

It just seems like the gift that keeps on giving.