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.