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).

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?

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.