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.