RandyCare: Part I

Everyone knows that I enjoy rambling about current events from time to time, but strangely I rarely hear people mention how much they miss these ramblings when I’m not around. As I assume this is simple absent mindedness on the part of my friends and family, I thought I’d write up some of my thoughts about health care in the US and how I would choose to reform it in that utopian alternative reality where my opinion mattered.

I originally intended to make this a single post, but it started to get to long, and I wouldn’t want to deprive our readers of all this great material, so I decided to break it up into 3-4 posts.

Part I: Problems

While I’m really more interested in writing about a hypothetical health care plan, it probably wouldn’t make much sense without a little bit of background on what I think the major problems are. I’m not going to go into a whole lot of detail, as these issues are probably familiar.

1. End of life care

a. We spend huge amounts of money on end of life care for benefits that are minimal compared to the costs. People should naturally be allowed to spend their own money on heroic end of life care for the elderly, but the socialization of this care needs to be seriously reconsidered.

2. Defensive medicine

a. Contrary to popular perception, money paid out in medical malpractice tort claims is a minuscule part of overall health care costs. On the other hand Defensive medicine practices (such as excessive testing) create significant amounts of waste (waste = costs –benefits). Health care providers (doctors) have an incentive to over test and over treat as it provides both protection from lawsuits and increased revenue.

3. Pharma patent system

a. Pharmaceutical companies have learned how to game out current patent system by maintaining patents on legacy drugs, and have focused huge amounts of innovation of medications that can take the most advantage of the patent system. We need to incentivize innovation both more efficiently, and more broadly. We need to motivate innovation beyond medications that are taken regularly for a patents entire life.

4. Emergency care

a. Emergency room treatment has become both the safety valve for the poor who can’t afford medical care, and the source of bankruptcy for middle class people. Emergency treatment needs to be accessible without being abuseable.

5. Catastrophic care

a. Catastrophic health care costs have become a major cause of bankruptcy for middle class Americans. Catastrophic health care costs is one area of health care that it does make sense to deal with through a traditional insurance model. Catastrophic health insurance is relatively resistant to moral hazard problems, costs can be effectively mitigated though risk pooling, and everyone is subject to the risk.

6. Incentives

a. The common disconnect between the entity that pays for health care (often an insurance company or the government) and the patient who recives the care can create inefficient incentives for potential patients. There are a lot of ins and outs when it comes to the economics of incentives, and I don’t want to go into details, but it’s definitely an important issue to keep in mind.

The Grand Blizzard

While I saw the Grand Canyon once before on a road trip with the guys, Lorna managed to avoid it despite visiting Arizona 3 times before moving here, and living here for about 6 months. After deciding that this wasn’t really a record worth pursuing, we finally decided to make the six hour drive north to visit this wonder of the world.*

When we left Tucson it was a nice December day, meaning 75F and sunny. Six hours, and about a 5000’ climb later we were in the middle of a blizzard with about a foot of snow accumulated. We were a bit shocked, but what’s a little Arizona flurry to New Englanders? So we summoned our northern blood, and trudged to our cute little cabin near Bright Angel lodge just a few dozen feet from the Canyon. Since it was dark when we arrived, we settled in to get ready for a big day of hiking and sightseeing the next morning.

But when morning came we stepped out onto the ridge and all we saw was a fog of whiteness. Below is the view from the Bright Angel Lodge which normally offers a view of the majestic canyon.

After spending an hour or so in slack jawed surprise, we bundled up with the clothes we had (not much since we expecting warmer temps), and headed out to view the many famous and inspiring indoor attractions at the Grand Canyon. While there were about a dozen buildings labeled either “museum” or “historic,” there appeared to be a strict rule not to break a museum to gift shop ratio of 1:1. The one advantage to the fact that each gift shop had largely identical merchandise was that it became progressively easier to hold Lorna back from buying trinkets.

We also scheduled a tour of a house right on the edge of the Canyon, The Kolb House, which was built and occupied by two brothers (Kolb) who had a photography business there in the early days of Grand Canyon tourism in the early 1900's. Just a few minutes before the tour the snow and clouds broke, in dramatic Arizona fashion, and a beautiful snow covered Canyon finally appeared! We still did the tour, which was neat, and provided an opportunity to view the Canyon without standing in the cold. I thought I grew up in a house with an amazing view, but those Kolb brothers were really in a league of their own:

Unfortunately we didn't have the opportunity to hike down into the Canyon due to the very icy trail conditions. However, we still had a wonderful time hiking along the southern rim of the Canyon and admiring its beauty from the many look-outs. Afterall, the best views are from the top of the canyon! Also, an added bonus to visiting during the winter months is that there are far fewer fellow visitors which is always nice.

Since we were only able to participate in some of the canyon hikes and activities, we left lots to do with friends and family who choose to visit. Hint. Hint =) The lodges were clean, affordable, and some looked directly out to the canyon!

Here we are beckoning you to visit...

Random Buggery

I’m going to try to catch up, in no particular order about some of the Vaguely interesting stuff that Lorna and I have been up to. The first thing that pops into my head is Ethan and I rented a dune buggy from a random guy that Ethan found on craigslist. After a bit of difficulty finding the guy and signing a waiver (that I personally found to be a little weak compared to other waivers I’ve seen) we set to work dutifully testing the limits of the machine.

I was concerned before we started that dune buggy riding might be one of those activities that sounds extremely fun, but that just doesn’t really live up to expectations, but those concerns turned out to be unfounded. The “track” (a random dirt path in the desert) gave a nice mix of twists and turns, rolling “dunes,” and straight always with little jumps. Over the course of the two hours we quickly went through the three stages of thrill riding: 1. Oh my god this thing is crazy, we’re going to die! 2. Yeah! This is so much fun! 3. Damnit, why won’t this thing go faster!

Anyway, it’s definitely on the list of fun thing to do in the desert for people thinking about visiting sunny Tucson (and my neurologist assures me that the fact I started getting Transverse Myilitis the next day was a complete coincidence…).

Here's a quick clip, you definitely have to be on it to get the full effect though.

Friday the 13th

So we are attempting to revive our blog which has been dead to the world for some time now. For a while it just seemed like our lives weren’t exciting enough to blog about. Unfortunately this changed last week.

Last Friday (eerily, Friday the 13th), Randy was diagnosed with an incredibly uncommon neurological disorder called Transverse Myelitis. You may be asking yourself… wait… what is Transverse Myelitis? Even if you have a medical background, it is so uncommon that you may not remember the details. Basically, it is a disease that causes inflammation within the spinal cord and can cause a host of scary and debilitating symptoms. Only 1-4 per million people are diagnosed with it per year (I knew he was 1 in a million… but didn’t have this in mind!). Here I will tell his story and then write a bit about what it is and what it means in our case.

I will start by saying that Randy has been completely healthy his entire life, except for having high cholesterol. About 2 weeks ago he began feeling numbness and tingling (paresthesias) in his feet after riding on a dune buggy (desert ATV-like-thing). The next day he woke up and the paresthesias had spread to his calves. At first we thought it may have been related to the dune buggy ride or maybe a side effect of the statin he started a month ago. He stopped the statin, but the symptoms kept climbing up his legs, and into his belly creating a banding or "girdle" sensation. Still we were not very concerned, but thought it warranted a visit to his PCP, Dr. Murray. Dr. Murray was actually quite concerned and did not think it was related to the statin. He ordered a brain MRI, blood tests, and called a neurologist so he could be seen the next day. By the time R saw the neurologist his paresthesias/dysethesias had risen to about the T6-8 level in his chest and into his fingers. Also, his legs had become stiff, or spastic. Interestingly, symptoms were completely symmetrical and very well-demarcated. On physical exam he had hyper-reflexia in his lower extremities and near complete loss of vibratory sense in the affected areas. His neurologist gave him the tentative diagnosis of TM and ordered a spine MRI for the next day (last Fri). After R got the MRI he came back with a CD which I viewed. Although, I am by no means a neuroradiologist, it was fairly obvious that there was a large area of gadolinium enhancement (swelling) within his cervical spinal cord. Immediately I called his neurologist and it was decided that R would be admitted to TMC for 3 days of IV steroids. It is frustrating to think that if I had not been pushy about seeing the CD then we would not have known about the lesion until the following Mon. Even when I told the neurologist about it he did not want to start treatment until Monday (for no other reason that I can think of other than convenience). I pressured him into admitting R for treatment and am ultimately glad I did, even if Dr. B is annoyed with us. There is substantial evidence showing that starting steroids early is can help lessen symptoms if not prevent them from worsening. I have read many stories from other people diagnosed with TM on an online support forum and it is sad when people have to wait weeks for steroids and their symptoms (which may be become permanent) progress during that time. The problem is that the disease is so uncommon that many neurologists dont recognize it or know what to do. We are lucky at least that his PCP and neurologist were on the ball enough to realize it was serious and then to diagnose it correctly. Fortunately, so far Randy's symptoms stopped progressing since Thurs, the day of the neurologist appt.

Now for what this all means for us. Basically, the natural course for TM is that it causes inflammation to the spinal cord and then stops. 70-90% of the time it never comes back. Over the next 2 years the symptoms will either completely resolve (1/3), partially resolve (1/3), or stay the same (1/3). Most people with TM have paresthesias, bowel and bladder issues (ie. incontinence), and weakness or paralysis. Many people spend MONTHS in the hospital and some even require mechanical ventilation in the ICU. In other words, Randy has a VERY mild version of TM. At this point we can be fairly confident that he has been spared all the other really debilitating symptoms. As you can imagine, it was terrifying when his symptoms were progressing. Then for the next question... what started all of this? Afterall, TM came from an Arizona sky (aka clear, blue). Turns out it usually does affect healthy, young people. About half the time the cause is never determined, but the rest of the time there is another disease detected which is underlying it ie. MS, Lupus, or an infectious disease that triggered it (ie. HSV, EBV, HTLV etc). Of the underlying diseases MS is the most common. So that is obviously a concern for us. We would love to have whatever caused this just be done and leave us alone.

Randy is taking this remarkably well and keeps up a great sense of humor about all of this. He has Ruth, his Mom (also an MD), and me doing all the worrying for him. The first day he came home he started exercising and stretching, which is hard since he feels exhausted after a one mile walk (he was running 5 mi multiple times a week before). He has a great attitude though and is determined to regain his endurance.

Fortunately, work has been impacted very little from all this. My attending (boss) was kind enough to relieve me of the second half of my long call on Fri. Sat was post call, Sun I had scheduled off, and then Mon was the start of a 1 wk vacation. How lucky was that! Although, we had hoped to be sailing down the Baja peninsula right now, I am just so happy that I can spend this week with Randy without having to worry about other people who are sick. Randy has not been working, but is studying for the bar exam he is scheduled to take in Feb. Fortunately, he has still been able to get some studying done.
Over the course of this past week Randy is tapering his prednisone and starting to feel some recovery!! He now feels an 80-100% improvement in the paresthesias in his feet, buttocks, and legs. His worst symptom right now is the banding around his abdomen. He says it feels like someone fastened a really tight belt just above his belly button. He also has stiffness and funny sensations in his hands which makes typing difficult.

Yesterday we learned that his cerebral spinal fluid was negative for oligoclonal bands. This combined with his clean brain MRI makes a future MS diagnosis very unlikely. We are still waiting for more tests to come back which may tell us if there is an infectious cause… but MS was our main worry which has been largely cast aside.

In conclusion, we will be okay and feel confident that no matter what the future has in store, we will be able to handle it. Randy's neurologist is very optimistic about his recovery and so are we.

Thank you all for your love and support.

The Avian Menace

Bird watching is a hobby that sounds awfully strange to anyone who hasn’t gone out in to actual “wilderness” hoping to see cool wild animals. You very rarely see the type of neat animals that one seeks out at the zoo, but what you do see is birds. I can see how this could lead the aspiring animal viewer to decide to seek out birds, as you’re a lot less likely to be disappointed than, let’s say, going on an all day tiger trek, and having the highlight being a chicken running across a 10 meter path.

Now I haven’t capitulated to the point where I go out looking for birds, but in lieu of daily bobcat viewings, Lorna and I did set up several bird feeders (two standard, two humming bird). The initial results were very encouraging, as we attracted lots of cute little birds:

Unfortunately cute little birds where replaced with, IMO rather ugly bigger birds.

I apparently don’t have a picture of these guys on the feeder, but a dozen or more of them would show up and just pillage the feeder in a matter of a few hours. One of the feeders had little doors that could be closed over the access points that made for a much smaller feeding hole. This didn’t stop the ugly big bird, they just destroyed the feeder and ate the food off the ground:

As much as I like the cute little birds, I’m not sure it’s worth it to keep them full for the likes of those savage pidgeon-like-birds. Perhaps I could get a more solid feeder, or perhaps I have another solution…

Up and out of the desert

The other weekend we decided to do some exploration of the area, and took a hike up Mt. Lemon. Contrary to most “back east” hikes where one starts at the bottom of the mountain and hikes up, the standard system with Mt. Lemon seems to be that you drive to the top of the mountain and then hike down a bit then back up. My first reaction was that this was further evidence of the growing problem of obesity in America, but when you get out of the car at the top of the mountain the logic of the system hits you immediately after the cool refreshing air.

It’s a whole different ecosystem up there then down in the desert climate of Tucson, there was also some very cool rock formations. Here are some photos: