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