The insurance quagmire -- enough to make your sick!

Today, was one long day of digging into the insurance nightmare. I am boggled how medical billers (doctors, hospitals, any medical provider etc) charge the amount they do for services, or sometimes they don't charge for services. Sometimes insurance pays far more than I think they should, and other times, they have these bizzare rules that make, what seems like a legitimate charge ineligible. It is completely random. I have over 5" of Explanation of Benefits (EOBs, in industry speak) for this year. That is over 2 reams of 500 sheets of paper. It is insane. What is more insane is that I, as the patient, am stuck in the uncomfortable middle. There is no transparency in the medical billing/insurance system. It is totally fucked up! I as a consumer have almost no rights, which seems completely wrong. All I can go by is my hutzpah. Sometimes that only goes so far. There are times I simply pay because I am too exhausted to fight.

There are so many different types of billing schedules for every variety of insurance plans offered within a single company (i.e. PPO, HMO, traditional indemnity, other flavors of indemnity, etc...) and then add across all companies. It is insane, and a huge time synch to fight for your rights. It is bad enough to deal with a series of cascading health events. Then, add the stress of insurance. No wondering why our country is in the hole with medical care. I really hope with the new administration there will be leverage to improve (what I really mean is overhaul) the healthcare system in our country. I hope that some healthcare 2.0 initiatives take on insurance issues, including patient advocacy.

Web 2.0 and Social Networking Come to Health Care | Newsweek Health | Newsweek.com

Web 2.0 and Social Networking Come to Health Care | Newsweek Health | Newsweek.com. I think it is interesting that there are so many challenges to innovating healthcare using web based technologies. But, it is a really exciting brave new world, and we are only at the cusp.

The test is in the pudding

Somewhere along the line, I feel like I have missed some critical answer on a test with someone, something, somehow. And, i don't know what that was. There are some days that is the only way I can rationalize all that is going on. Logically, I think, I know otherwise, but these are the days when I actually speak to some higher power to get me through. Show me a little light, warmth, and protection. I actually recite the serenity prayer. When I do that, I know I am desperate. I guess desperate times require desperate measures (from my perspective).

This last Tuesday , in the midst of all my stuff, Larry had a significant fall. It has resulted in (by working the hell out of the system along with some really amazing people, like Dr Hackett and his team) a significant shoulder surgery including metal parts to put him back together again. I bet Humpty Dumpty wished there was a Dr Hackett for him. This all started as I was coming up for air from the last surgery nearly 3 weeks ago. Of course, this added another layer of spoiled ricotta to our diet. We had to move heaven and earth to pull resources together and most importantly take care of our worldly and dearest creatures, especially Enzo.

Thursday it was decided that Larry would need surgery, which requires quite a bit of immobilization in a funny arm sling. In order to accomplish the surgery in the time we have, currently in Vail it needs to be done by Tuesday the 4th -- that is next Tuesday. All agreed. Our challenge was to get the animals covered and help on our end here in Vail, especially since I need to get through my elbow surgery the following week. So, Thursday night, after many family conversations Larry decided to drive home and get Enzo and Misha (and take all the kitchen stuff we accumulated). That is a 18 hour drive. We packed up the house Thursday night. Friday morning Larry had his Pre op clearance appointment, which we are still not out of the woods with, since Larry smokes, drinks, has high blood pressure, and is near 50. By Friday noon, Larry was sent off in a comfortable car with our stuff to get home Saturday night (tonight), get new support at the house, and turn around Sunday morning to arrive Monday night. I, in the meantime, am trying to get the house together with two painful arms. In fact my body is wracked with pain in all the fun and game joints. So, to sum things up. I feel like I am being squeezed (once again) through a really small portal, which I am far to big for. So, there are a lot of rough points along the way.

So, this goes back to my first point of being tested. And, it only seems to increase and never stop. Is it me? The world (that is certainly happening these days), who the fuck knows. But, man, it is exhausting and stressful. I find moments of pure joy, when I find a great thing at the thrift store (like some cheap champagne glasses) that I can do flower arrangements in. it is followed by hard work. A lot of tight and important coordination.

My body and soul are so tired. We are gritting our teeth and getting through. The cost is high. And, I do wonder can I/we pull through this and everything else. How we are going to manage is a mystery and yet to unfold. And, I guess that is the larger metaphor (or only one). That really everything in life is a mystery, despite our efforts to plan the future. Like a lotus flower it will unfold and show us it's wonders. I am watching.

The Vortex of Despair

It has been six days post op of the right shoulder surgery, and it has not been an easy road. The first two days were slightly more than typical discomfort, which I had been warned, then the third day I thought, I made it through and things were not going to be that difficult. Then, I had my silly grin wiped off my face and got served a dose of humble pie. That was Thursday. And, I was in excruciating pain, my swelling increased, and my tendons flared up. Every tiny movement in my right shoulder and arm down to my fingers sent searing pain through my arm and body. There was no escape, even very strong medicines, including oxycotin, oxycodone, and robaxin barely touched the pain; and ice, my personal favorite simply dulled it. It has been a long time since I have experienced that extent of pain -- nerve pain -- searing -- inflamed pain. OY!!! I say it in the past tense, because I think my head is above water now. I still hurt, but not over the top, out of place, sobbing hurt. I am just going to be very very careful not to move my arm too much, or my fingers, or anything in the upper right quadrant of my beloved body. Poor thing.

Thursday and Friday were the worst. I could not stop sobbing. To add to physical pain there was emotional pain (as documented by my last post). I spiraled into despair, feeling of abandonment by the universe and close friends, no one called, except my housekeeper, Pilar, or all people to check in. Of course there was Facebook to keep me warm. I diligently updated my status to elicit feedback, which I did, but, that is a weird pyscho/social phenomena. I think (know) that it distorts the meaning of friendships. It is more like a scorecard of coolness and quips. Yet, especially now, I frequently am looking it up, what other people are doing, saying, who they are commenting on. It is a pervaded and per-versed meaningful social connections. And, I am equally guilty. There are days I find it exciting and others depressing. It adds to the mood swings I have recently been suffering. And, I think as unhealthy as any other elicit substance out there. Oh well, we do have to stay connected like the rest of the schlubs out there. In fact, because my life these days is so confined to my physcial recoveries, FB is sometimes a marvelous distraction.....That is what it is....a distraction, I think, even under the best of circumstances. Hopefully, when I return to the living (or making one) I will feel less compelled to be drawn into the vortex (oh, I see, there is a theme).

Back to physical despair....it is tough, and I am not having a good time with this latest surgery. Overall, my body is not responding proactively, like it usually does. It all is out of wack...I am not finding a silver bullet to release me from my frustration. All I can do is ride it out, find hope and salvation in the small things, not be too judgmental, of myself and others, and mostly stay calm and breathing. Breathing would be very good and important to recovery. I can see I am doing better because I seem to have a sense of humor today, and I certainly haven't (owww, a twinge from typing). Ok, that is a queue to say adieu to the vortex of machinery and treat myself to warm running water to help release those poor spasmed muscles.

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.

A day in the life of Physical Therapy

So, when you go undergo rehab with Steadman Hawkins. You get to be treated to top end physical therapists at the Howard Head Clinic. Each of the joint teams have developed rehabilitation protocols for each of the specialized surgeries the doctors' perform. They work with all walks of life and levels of rehabilitation, from ordinary folk to elite athletes. I am always amazed, and motivated when working the staff. I have had the fortunate position to work with some of their top PTs, and I attribute a lot of my recovery, good humor, and subsequent ability to move through the surgeries to the Physical Therapy team.

Going to PT is an everyday job. For the first 3 weeks, I went everyday, including Saturdays and Sundays, two times a day. That was exhausting. Now, I go 4 days a week, for a couple hours a day. I am expected to do other structured strengthening exercises in the later part of the day, along with some activities on weekend. It is still exhausting and rehabilitation is an everyday job. Talking about nose to the grindstone.

The Patience of Being a Patient

Being a "patient" has many challenges, mostly related to patience, with self, for others, and sometimes for the self. it is an especially challenging experience for everyone directly involved in the "recovery process" both for those of able body and not so able. Sounds like we are cleaning up after a "natural" disaster, and in many ways the very first weeks of recuperation requiring a lot of cleanup, especially, for those mobile helpers that have to bear so much burden. Without Larry's indefatigable help, albeit, occasionally grumpy, I would not be in as good of shape and out of a bad slump.

It is hard to realize, unless you have the experience of being laid up, how much we take for granted that we do for ourselves each and every day, from the simplest of reaching for a glass of water, throwing something into the garbage can, being able to walk into your bedroom to grab a sweater when you are chilled. I bet that we perform those mindless acts without thought over one thousand times a day. You only realize how much you do those things we you are "laid up" and having to rely quite heavily on someone else to essentially throw out your dirty tissues, and be your arms, legs, etc.

This is a really big challenge to negotiate between partners and loved ones, between laid up one and non-laid up ones. Patients (at least me) go through this difficult convoluted process of deciding what is too embarrassing to ask for. And, at the same time, they are stuck in bed screaming inside wanting to just be able to get up and pick up something. There is this terrible balance between being patient for things, able to request something, and not over requesting."Honey, can you get me a glass of water?... Oh, and I need a straw... Can, I have some crackers with that?.. Oh, can you reach for me that blanket?...I need more ice in the ice machine, the foot pumps stopped working..." It goes on and on, then there is the gratuitous stuff, like staplers, and highlighters, and magazines.

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

The Highs and Lows

So the shit hit the fan, so to speak, and my life has gone into quite a spin. A very different spin than I was planning.

At the tail end of my visit in Vail, co, with the fabulous medical folks, it surfaced that I have a major problem in my right hip now. I always knew I would have to contend with it at some point, but I was not planning now, in front of other scheduled events, including my wedding, followed by my planned shoulder surgery. Alas, my fucking hip has trumped everything. It was a weird experience. I got our of bed one morning to discover that I had consistent pain in a new place. I even got confused between my right and left leg. It was really disorienting. After quick Xrays, followed my an MRI the same day, followed by a consult with Dr Philippon and Dr Ho (radiologist) Saturday morning it was made clear to me that I had to address the right hip sooner rather than later. Quelle Drag!!!

Because we are not wealthy and the weather starts getting burdensome starting at the end of Oct. we have come to the dear realization that we need to hit the road and get out there so that I can have one of three pending surgeries (unless something else crops up), possibly squeeze in two. This is fucked up! This avascular necrosis stuff is for the birds. As such, so I can maximize my time out there, we need to postpone our wedding, at the end of September, and pack our bags and leave in two weeks, so we can squeeze in a trip through the northern US, I have always wanted to go to Wyoming and Montana to the Grand Tetons and Yellostone. So, that be the plan.

On the semi backwards good news front, I was awarded SSI, and received retroactive pay. I cannot believe, given how notoriously difficult the system is in awarding disability, that I got this in 6 months. OMG. I have heard it often takes years! This is good news, but it does seem strange to be happy that I have been considered officially disabled, by our federal government, so that I can receive benes. At least that relieves some of my pressure, and that is a good thing, as Martha says. So, with that news, I am quite done with the harriedness of the last 3 weeks.

Now, we prepare to move on, figure out the next steps, and find the good things in life....like a road trip through big sky country. I get to spend time in the Rockies (one of my favorite beautiful places), and hopefully bring Enzo.

So, there......bye for now

Beat as a Dog

I cannot even see straight these days I am so overwhelmed with decisions. I dislike the position I am in, however, somewhat resigned. I am not sure if that is a good or bad thing. Probably does not matter. Sometimes when things get rough, although you have lots of booming ideas in your head it is difficult (or, more so exhaust) to actually share and diseminate those thoughts. Sometimes all you can do is go inward and hope that you will find safe harbor.

Since Vail I have been trying to figure out the best way to navigate new decisions and waters but I am simply still bobbing along waiting for a sign that we can figure this out.

Creating the Connected Patient: Cindy Tanenbaum with MedStar Health presents how HealthVault and a patient portal is improving the patient experience

Creating the Connected Patient: Cindy Tanenbaum with MedStar Health presents how HealthVault and a patient portal is improving the patient experience. I found this article today on a patient portals webinar by Medseek about the role of patient portals in improving the patient experience. Let me know what you think.

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).

The secretive world of joint replacements - MontereyHerald.com :

The secretive world of joint replacements - MontereyHerald.com : Here is an article that caught my eye, and ironically, this is exactly what I was talking about with my partner yesterday. The close relationship (almost exclusive) that a doctor has with a particular joint part. This raises my concerns, because, not only do you need a good surgeon for a replacement, one also needs the right type of implant based on age and other factors. As such finding the right surgeon and right part for your body may not be as easy to find. This adds to the overall frustration of taking the step to get a hip replacement. I will add more later.

The Importance of Medical Records

Last week, there was a family crisis. 

One of the aging parents in our family took a terrible turn for the worse. As a result, the family needed to surround themselves around her to make sure care was followed through on, etc.... 

Among the myriad of challenges of stepping into an instance of geriatric care (trial by fire), especially of an aging parent, was that the elderly patient went to an Emergency Room that was out of her ordinary hospital -- Kaiser.

As such, the fear was that, when she went to her followup doctor, at Kaiser, she would not have the medical history of the emergency visit unless the notes were physically printed out and carried over, following all proper authorization/records release protocol, or the facility subscribed to a sister health information technology system as Kaiser hosptial. ( There is a compounded challenge when you are not the patient, and there is very poor documentation of Power of Attorney, or Trustee protocol.) This is the niche Google Health is trying to exploit -- medical record transparency.

This stressful moment happened when the family realized, as they were transporting to the main facility, that they did not have in hand, any of the results, from the 24 hour hospital stay, from the first hospital. The downside is that without medical records, the patient, is often victim to needing to have test reduplicated, since, one would hope, the primary care doctor, would follow a similar line of reasoning, as the emergency care doctors had.

The end result was that through some shinanigans and creative thinking we were able to secure the records within 2 hours on the day of Lilian's appointment. It was amazing. And, ultimately proved helpful. The followup doctor was able to modigy his existing diagnoses based on test results from the "other" hospital.

So, the moral to anyone's medical story is always, get a copy in hand of the records from your patient visit. They are typically available, from a primary hospital, within 24 hours. And, there are different cost effective ways to get copies of records. I step back when a hospital records admin staff says to me, well, if we send them to your doctor they are free, if you want them it is a $10 charge and $.25 fee per page. I say heck no. I have always figured out how to get my records legally and free. I refuse to pay for something/service that I have already paid for.

So, there is my pearl of wisdom of the day. Always, get your medical records.

(If you ask for them at the time of your visit, typically, a hospital, is required to provide them to you free of charge. You just have to remember to ask.

Integration Of Joint Replacements Improved By Coating Titanium With Polymer

Integration Of Joint Replacements Improved By Coating Titanium With Polymer Interesting article on how to improve bone grafting to hip replacement parts. I am always looking for the latest and greatest. This site, Medical News today has a lot of good summaries of medical current events. So, I thought I would share this article for those of out there contemplating replacement surgery at a younger than ideal age.

Enjoy

What should we expect from a doctor

For the last 5 months I have been interviewing doctors. Imagine that. See post below hunting for rabbits, or is it doctors and this post local ortho elimination process

We think of interviewing employees, nannies, schools that our children go to etc., but we don't interview doctors, who can have a big impact on your life, in more ways than the obvious. This becomes especially apparent with the chronically ill patient, because they usually have a much higher interaction with the medical community, usually have complex cases, and have a higher level of investment in the outcomes. Those people who go to the doctor a few times a year, or less, probably don't think too hard about the quality of their doctor's. (Or, I am just guessing)

After the first couple orthopaedic appointments I had early this year in CA I was so disgusted with the talk down to you approach that I decided to do what I have been needing to do and that is create a supportive medical team to help me navigate my increasingly complex medical situation. As I have eluded to in other posts this has been a difficult and often traumatic experience. Everyday brings new insight as well as more confusion when I interact with medical people. And, lately I have been doihng this alot. I have on average 3+ appointments per week. Some weeks I have had two a day, Monday through Friday. This includes maintainence appointments, such as allergy shots, chiropractic, physical therapy, and mental therapy. Then I have followup appointments with specialists: orthopaedic, cardiology, urology. Currently, I have a high rate of appointments because I have been trying to have a good team of people I can trust and rely on. The anxiety of not having that is very stressful. There are days I have been hopeful and there are horrible days, like when a doctor thought I was trying to be self important by seeing many doctors. I am beginning to believe that I am getting closer to creating a team of people who are thoughtful, compassionate, and will be a great support to my overall care. They may not have all the answers, but, they certainly seem willing to help me through the mess I am in. I have had to create a personal patient schema to keep track of the specialists that I need to deal with on a regular basis and how they overlap with other doctors.

I wonder if I am crazy sometimes because sometimes it seems I am pushing the system to do something that it is not designed to do. I keep wondering how do other people who have a long term condition that is less straightforward deal with this. There are days I want to crawl into a fetal position out of despair because I feel unsupported. Most of the local doctor's are new and I feel like I have to convince them of how difficult life is for me. Sometimes, I want to throw up my hands in despair and just stop trying, and crawl into a hole. Then there are those few occasions, when I want to throw my arms around a doctor and say thank you for hearing me, caring for me. Those are the doctor's that really surprise me! I get so prepared for what I think is a difficult conversation related to paperwork, or questioning of their proposed approach to dealing with my multiple conditions, and they simply say ok, no problem, let's try that. Sometimes, they even say, maybe they should talk to someone else. And, that is often times the most refreshing statement I ever hear. I got inspired to write this post after reading the following article Get Yourself a Thinking Doctor

Am I crazy to expect that a doctor should listen to you, not pretend to know everything, and ask questions to better understand what you are going through?

I have become increasingly amazed how doctor's actually think. On the one hand they say to me, boy you have lots of problems with your joints, or, boy you are a mess, and will keep us busy. On the other hand they think I am working full time after I have told them how devastated my life has become, and that I rely on my partner to take care of managing cooking, cleaning, grocery shopping. I just wonder who is listening. After those appointments I wonder what is wrong with me? I wonder, what did I do wrong? I generally come home dejected and worried about my future. These are the people who hold my future in their hands. OY!! Thankfully, those appointments get balanced out by those doctor appointments that hold a lot of compassion, understanding (or at least not dismissal), and feeling of care. And, those are the people that I move towards, embrace, and feel buoyed by in the midst of my own personal storm. That is when I feel calm and cared for.

So, what do other's experience? Am I the only one out there that is puzzled and surprised by the medical institution? Sometimes I really do feel alone in this mad mad world.

What do you do when a doctor says that you are not Ted Kennedy

You write him and his boss a letter.

I went to a highly regarded Pain Management specialist in my area. I filled out the questionnaire. Signed all the release forms, answered all the questions the nurses had. Then, I sat in the exam room waiting for him. He came in, annouced that I was seeing too many doctors (which I already knew) and that I was not Ted Kennedy and that all I needed was a hip replacement. I did not need to see specialists. My jaw dropped, and I said but what about all the other joints that are causing me such difficulty? He said, "You just need to bite the bullet and make a choice of what is hurting most. I lost my composure, I teared up and started crying, sobbing, etc..... That was a first. In all the years that I have struggled with my medical problems, I never had someone, who did not know me, be so cavalier, opinionated, and generally gruff. He did mention that he was being tough on me. It took me several minutes to regain composure.

In hindsight, I wish I stood up to him more than breaking down and sob. I did tell him I was affronted by his behaviour. Frankly he was demeaning, unprofessional, and egotistical. Am I not important enough to have good quality care to help preserve my mobility? He apparently does not know what it is like to have several joints inflammed and non cooperative at the same time.

What was he trying to impart to me...that this is not life threatening and that I was not a deserving patient of his time. Oh, and was he making a judgement of the number of doctors I am currently seeing? Did he even enquire as to why? No! I did explain that I was working on interviewing doctors in my area to be apart of the team that helps me manage my lifelong condition of serious joint problems. And, he was apart of that process.

In the end, he provided some reasonable suggestions for means to help me deal with chronic pain in the joints. So, I am grateful for that.

This week I called the clinic back and spoke to the head nurse letting her know how angry I was by his behaviour. She said she heard from him what he said and she told him that it was inappropriate. Apparently he agreed and said he was sorry. She said to me, that she told him that, too bad the patient won't hear it.

I have decided this is one situation I am not going to let go silently. His behaviour, along with his posture -- slouched in chair with legs splayed -- was unprofessional. I am resolved to write him a letter telling him what I think. I will cc his boss.

There is no reason why a doctor should treat anyone poorly, especially a Pain Management Doctor. Thank goodness I have a fair amount of home support and am not suicidal. He raised doubts in me of not deserving good care, or being proactive about my care. I really hopes he treats his terminally ill patients with more tenderness. Maybe they are more deserving in his eyes.

Has anyone else had such an experience, and if so, what did you do?

It's no LOL: Few US doctors answer e-mails

I came across this article a week or so ago. It's no LOL: Few US doctors answer e-mails from patients | ajc.com

I am really intrigued with this area of the medical management process. I love email as a mean of communicating and receiving information. I find I am more thoughtful about how I am communicating I am always surprised, that something that would seem like such a time saver, from the patient POV, would not be embraced by doctor's. It seems like such a no brainer. I have read there are security issues.... patient confidentiality challenges, and . While I can understand, I think it ultimately comes down to the fear factor of patient liability issues.

I am wondering what other people think about this issue. Please share your thoughts.

Google Health.COM

Today there was an announcement about the launch of Google Health care. NyTimes Google Healthcare article. I am really excited about about the direction of the IT industry into the healthcare space. From what I can tell, this is one of the most innovative approaches to moving into this space, and could better enable healthcare management into the hands of the consumer in a way that will empower the patient. I obviously need to look further into what they offer and how they structure their legal agreement, in addition to patient privacy issues.

This type of service offering has enormous potential and potentially enormous pitfalls in relation to patient privacy and targeted consumer pharmaceuticals advertisements. See this article about the business skeptics: Google Faces Skeptics on Opening Day.

Personally, I have been a big proponent of moving the healthcare industry into the electronic space. I come from the information industry, and based on my personal experiences am really keen where this will all go.

Coming from the patient care and healthcare management perspective I really want to see something change especially for patients that have complicated healthcare issues, such as myself.

Although I love technology, I have found that when I go to doctors that have adopted healthcare IT solutions, that there is something missing in the doctor patient experience, especially when they are looking, typing, or dictating notes into the computer with their back to me. Here are some issues raised by Dr. Jerome Groopman in the following article: Do Electronic Records Impede Care. In addition read the following article from Australian news: For medical history, read hit and mystery


I foresee that the healthcare industry can only benefit from electronic record management, undoubtedly there are many powerful benefits of technology in the healthcare space, if used judiciously. Imagine emailing your doctors questions, getting a tailored Physical Therapy protocol through the internet, among other things. The flip side of the coin is that without interoperability standards will make this whole thing useless. If one system cannot read the information from another system there is no point in capturing the data if it cannot be shared. That is a common problem with technology, the ability to share information.....with other systems.

No matter what, we are moving into the technology age for healthcare. Google is making a valiant first stab at the problem. Here is a link to Google's explanation of what they are doing: Google Health, a first look I am going to review further what their service offers. The first thing that comes to my mind about how they have chosen their adisory board is that there are no patients, only doctors and healthcare admins. The exchange of information should not preclude the importance of patient input. If I had a voice, I would encourage the Google team to include a pure play patient, as opposed to a committee that is healthcare industry based. Here is the link to their healthcare advisory board: Google Healthcare Advisory Board

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.

Hunting for Rabbits (or, is it doctors)

After my return and ultimately separation from the Vail clinic, I made a promise to myself to go through the diligent process of creating a network of doctors locally that can help me navigate my increasingly complex orthopedic situation.

The process has been an endurance race. I have had nearly 3 to 7 doctors appoints a week over the last 3 weeks. Two that I always have; allergy and chiropractic, sprinkled in with an alternative mental health maintenance appoint. The others have been to dealing with my ongoing UTI and attempt to establish a local orthopaedic solution.

The task turns out to be far larger (of course) than I originally suspected. Not only is there the physical aspect, but there is a largely mental and financial element to the process of, essentially, interviewing doctors. And, I am tuckered. So, I leave this piece for another entry.

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

Big Decision -- postponing Surgery

I have been coming up to my hip surgery and have become increasingly anxious....First, I am still dealing with the tooth extraction and titanium screw implant in my mouth, 1/2 my tongue feels like sandpaper. And, I am still having troubles with my UTI.

And, most importantly, I am unhappy with my new surgeon, Dr Maloney. Since the first time I met him I have never had a comfortable experience. He was so dismissive and waved away any concern that I had. When I complained of swelling and pain in my knees, after looking at my Xrays, he simply said I was sensitive to pain and sent me to the Pain Management clinic. When I saw them, they said....oh, we should put you on methadone.....(Well that is interesting, because that is a pretty heavy duty long acting pain killer, and it is used to help people get off of heroin). Who the heck is Dr Maloney to judge or even know me. He has only seen me two times and has not even looked at the MRIs of my knees. 

I have been so used to excellent care with my orthos in Vail, that this current experience really drives my anxiety. I lay awake at night blaming myself somehow for how the doctor reacts to me. Of course it must be my fault. Then, I go through periods of anger. Ultimately I am frustrated.

I am tired of the whole doctor experience thing. I have a GP that isn't very helpful. A new ortho, who is very insensitive. Through this process I have realized I have no good medical infrastructure close to home. and, I sorely need that. In my frustration I checked out a book from the library called, "How Doctor's Think". I highly recommend this book for any chronic patient. It helps frame the thought processes of doctors and how those processes can impact the doctor patient experience.

After reading the Introduction I realized I needed to break ranks and cancel my surgery to take care of my fundamental medical issues and develop a proactive medical infrastructure that addresses managing more core issues before I go off fixing my hip.

And, that is what I am doing now. I cannot tell you how much less burdened I feel by making this decision. Before I felt like a cow going off for slaughter. There is no reason why I SHOULD NOT HAVE caring doctors around me that can help me manage my condition....

I encourage anyone out there who is frustrated with their medical care to be proactive, not be afraid of doctor's feelings, and get the care you or your love one deserves.

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.

Bush Wacking -- a medical sidetrack

Two weeks ago I went to my GP suspecting I had a UTI. Historically, I have not presented standard symptoms sometimes to the point that I have ended up in the hospital with a kidney infection. Odor is the only thing that has helped me guess with near 100% accuracy that I have an infection. 

One would think that after 5 + years of experience and numerous dealings with me in this regard that my primary care physician, would get a clue when I tell her that..."I think I have an infection".  

Over the last 5 years she takes an in office sample runs a ph test often with negtive results, or conflicting results with the hospital's more extensive culture, or trace positive, to which she has sometimes not given me medication and other times a quick course of Cipro, which has sometimes worked and other times not.

The latest is two weeks ago I called stating I think I have a UTI. Her office assistant said she will need you to come in so that she could run a test. As usual the test was inconclusive -- trace positive -- so she wanted it to be cultured. In the meantime, due to my history she gave me a short course of CIPRO. I took the CIPRO. I received a call from the office person who said that the culture was contaminated and that I should be ok with taking the CIPRO. One week later I was still alarmed and had worsening symptoms.  I called her office to find out she was away. I was given a backup physician's phone number that I called. The nurse took my information and said the doctor would get back to me.  The next day I received a call from the 2nd doctor's office stating that since they did not know me they needed me to go to the hospital and provide a sample. I dutifully went to the hospital, provided a sample, and waited to find out......

The next day I received a call, saying that there were findings, the test was not conclusive that it was sensitive to CIPRO so they were getting a further culture and that my doctor (doctor #1) would be getting the results on Monday and she would get back to me. So, after two + weeks, two + test, and a short course of antibotics I am still waiting to here what is happening to me. I certainly hope I do not get a kidney infection.

The whole thing strikes me as absurd. This is modern day medicine after all. How hard can it be to figure out what bacteria I have and how to treat it. 

• How can a doctor that I have seen (much to my chagrin) for over 5 years not get a handle, a clue, an awareness of my unique symptoms and find a relatively straightforward solution? 
• Why do I have to continually jump through hoops that seem to be so rote that they serve essentially no value in my case? 
• How can doctor's after years of experience with a patient not modify diagnostic/treatment routines to reflect a particular patient's symptoms especially for something seemingly so simple. For Christ's sake this is only a f%$#@ng UTI. And, my doctor is supposed to be quite diagnostician. 

It raises my concern, my hackles, and my rage. I think this is a very small microcosm of the medical institution and how many new doctors operate. There is a disavowal of the patient's own self experience. One would think (at least I do) that after years of dealing with a situation, and with a high rate of accuracy rate of calling out a symptom correctly, that a doctor would learn to have some relative trust in me, the patient. (Over the years when my doct would say I don't think you have anything based on my in office test, I would say, I really think that something is going on, she would concede and get a culture that would show something). 

It is not the case I want to be right, show her, or any other doctor up. I just want to be listened to and not treated like a bumbling idiot, with the attitude of you are not a doctor so how could you know your own body. After years of dealing with medical problems I think I have learned to pickup on my symptoms. So, today I sit and wait, shake my head, and jump through doctor's hoops. The end result is the process is 

1. More expensive than it needs to be (which I end up paying for) 
2. Takes an awful long time to resolve, and
3. Smacks of futility. And, it really doesn't need to be that way. 

The lessons for me are to find a new GP that will listen and continue to fight for my interests as a  patient, and not give up. Sometimes I do  throw in the towel and accept mediocrity. But that has to stop. As a patient, one cannot do that because the consequences can be significant. 

Gearing up For Battle

I have an outstanding bill that neither the medical insurance company nor the hospital wnat to explain why I owe so much. In all the years that I have had insurance I have never run into such a large out of pocket expense. So, I am getting ready to fight the good fight.