Humana: Our 800 Pound Gorrilla in the Oxygen War of 2009

A couple of weeks ago we were contacted by Humana to discuss Keith's oxygen situation. Specifically they were concerned that the home healthcare provider was requesting reimbursement from Humana/Medicare while still taking cash from Keith for his oxygen delivery. Additionally, as a Humana member, Keith has a cap of $6.25 per delivery as opposed to the ~$200 per delivery that the home healthcare provider was collecting. I informed Humana that we had been in contact with Rep Lloyd Doggett's office [D-TX] about this situation and that it was being investigated at the federal level. At the very least, the home healthcare provider is clearly violating federal law regarding oxygen delivery as detailed in the Patients & Providers Act of 2008.

The work to bring this to the attention of the right people has been exhausting. The amount of energy necessary to find people who care has been appalling. For me, insuring that Keith has the oxygen he needs to continue healing is of paramount importance and that has been the primary motivation to move forward. However, I am also driven by the unknown others who are being affected by this home healthcare provider's policies in this region. To top it all off, it sickens me to see the recent advertisements by this company expressing their commitment to their clients when I know our experience on the local level has been quite different. And, we are not alone. There are many oxygen dependent clients who are experiencing similar issues. I'm hopeful that with Humana on our side that we can not only sort out Keith's O2, but improve the options for others as well.

The Cost of Failure to Enact Health Reform

The Robert Wood Johnson Foundation and the Urban Institute have released a study that the groups say underscores the financial necessity of reform.

The report breaks out the coverage and cost estimates for each state. Below is a snapshot of Texas' data. You can see it in larger, clearer detail on page 57. If you live elsewhere, the state projections begin alphabetically on page 14.

Researchers from the Urban Institute used their Health Insurance Policy Simulation Model to estimate how coverage and cost trends would change between now and 2019 if the health system is not reformed. The report shows that under the worst-case scenario, within 10 years:

• The number of people without insurance would increase by more than 30 percent in 29 states.
  In every state, the number of uninsured would increase by at least 10 percent.
• Businesses would see their premiums increase—more than doubling in 27 states.
  Even in the best case scenario, employers in 46 states would see premiums increase by more than 60 percent.
• Every state would see a smaller share of its population getting health care through their job.
  Half of the states would see the number of people with ESI fall by more than 10 percent.
• Every state would see spending for Medicaid/Children's Health Insurance Program (CHIP) rise by more than 75 percent.
• The amount of uncompensated care in the health system would more than double in 45 states

Read the full report HERE.

Rhetoric Rising

Wow, can't believe it's been three weeks since I posted. Over these weeks, Keith and I have been immersed in the political rhetoric keeping our attenae up for the golden moments when a real discussion of the healthcare issues we live with daily bubble up to the top of the candidates' messaging. As you all know, those are rare moments indeed.

Without a doubt, the economic crisis is deservedly the overarching message delivered in multiple forms as the 2008 presidential election builds to its (vain)glorious finish. Like all Americans we are acutely aware of the rippling impact of the economic meltdown. What has me scratching my head in confusion, is why the candidates seemingly separate the country's fiscal health from its physical health in their campaign stops.

I got the following facts from the National Coalition on Health Care website. There is much more information there, these are the points with which I found myself nodding my head in agreement:

• In a Wall Street Journal-NBC Survey almost 50 percent of the American public say the cost of health care is their number one economic concern.
• Rising health care costs is the top personal pocketbook concern for Democratic voters (45%) and Republicans (35%), well ahead of higher taxes or retirement security
• One in four Americans say their family has had a problem paying for medical care during the past year, up 7 percentage points over the past nine years. Nearly 30 percent say someone in their family has delayed medical care in the past year, a new high based on recent polling. Most say the medical condition was at least somewhat serious.
• Nearly one-quarter (23 percent) of the uninsured reported changing their way of life significantly in order to pay medical bills
• A recent study by Harvard University researchers found that the average out-of-pocket medical debt for those who filed for bankruptcy was $12,000. The study noted that 68 percent of those who filed for bankruptcy had health insurance. In addition, the study found that 50 percent of all bankruptcy filings were partly the result of medical expenses. Every 30 seconds in the United States someone files for bankruptcy in the aftermath of a serious health problem.
• One half of workers in the lowest-compensation jobs and one-half of workers in mid range-compensation jobs either had problems with medical bills in a 12-month period or were paying off accrued debt. One-quarter of workers in higher-compensated positions also reported problems with medical bills or were paying off accrued debt.
• If one member of a family is uninsured and has an accident, a hospital stay, or a costly medical treatment, the resulting medical bills can affect the economic stability of the whole family.
• A new survey shows that more than 25 percent said that housing problems resulted from medical debt, including the inability to make rent or mortgage payments and the development of bad credit ratings.
• A survey of Iowa consumers found that in order to cope with rising health insurance costs, 86 percent said they had cut back on how much they could save, and 44 percent said that they have cut back on food and heating expenses.
• Retiring elderly couples will need $200,000 in savings just to pay for the most basic medical coverage; many experts believe that this figure is conservative and that $300,000 may be a more realistic number

What is not on this list is the immeasurable cost in time and energy of managing post-crisis aftercare. As you know from this blog, Keith and I have experienced this first hand as we negotiated the paperwork, funding concerns, insurance requirements and, oh yeah, actual health issues over the 5 months since Keith returned home to recover. We are fortunate to have the support of family and friends, excellent personal caregivers, good insurance, interested health providers, and, most importantly, the ability & confidence to create our own best path to recovery.

However, all those pluses don't prevent me from falling asleep with an eye on the oxygenation/heart rate monitor to be sure that there are no indications of a restless night. Or making sure that the oxygen tube has not silently slipped off the ventilator because there is no alarm built in to alert you of that situation. (I emailed the company about this the first time it happened in the hosptial. Their reply? "Yes, that's a problem. No, we have no plans to do anything about it."). Or knowing that every piece of paper that comes through the door takes about 20 minutes of your life that you'll never get back. Or any number of other things that can happen to slow the recovery process as we, like far too many American citizens, practice unlicensed medicine managing machines and medications.

Yet, with all that said, we are still firmly in the category of the lucky ones. Keith is healing faster than anyone anticipated (except for him, of course, lol). We have weathered the economic storms and are fortunate to be in Austin which was recently named the best place to ride out the recession. I can do my work from home so I'm not away from the house for long periods of time and Keith has been able to continue his business life from the comfort of bed (much like the European royalty in the Middle Ages).

Without a doubt, we are the exception to many, many rules. Of course we have adapted our life to meet the new responsibilities, but haven't been forced completely off track. The reality is that most folks have been or are being beaten by the healthcare system. They have been forced to compromise their financial resources to maintain their physical health. Every day brings a new short-term choice that sacrifices long-term sustainability. While the dollar cost of those decisions is painfully measurable, the emotional strain is exponential and has a dangerous ripple effect. Once the fundamentals of your world are eroded, the rest falls rapidly.

The United States is the most powerful country in the world and, as noted on the National Coalition on Health Care website, experts agree that our health care system is riddled with inefficiencies, excessive administrative expenses, inflated prices, poor management, and inappropriate care, waste and fraud. These problems significantly increase the cost of medical care and health insurance for employers and workers and affect the security of families. As the 2008 Presidential election winds down, it's time to ask ourselves and our candidates if we are being served. There is an old saying, "when you have your health, you have everything". So, by extension, is it also true that if you don't have your health, you have nothing? We have all worked too hard to have nothing and deserve leadership that understands and acts on the knowledge of the importance of a healthy citizenry to the sustainability of America.

Sobering, indeed.

I was perusing the news on Yahoo tonight and a headline caught my eye "6 die in family murder-suicide in upscale LA home". I lived in Santa Monica for about 13 years and knew quite a few folks in upscale homes so I clicked on the link and read the article. As I read the article, I scanned for the name of the people involved. There was no name but as I read the work details naming Price Waterhouse and Sony Pictures, I turned to Keith and said there was a good chance that I had been acquainted with the gunman. (Like many places, LA is big at first glance, but once you get into certain circles, it's a pretty small town.) About 30 minutes passed and the story was updated. My eyes were drawn to the name, Karthik Rajaram. It was one of those surreal moments when the news moves from there to here at supersonic speed. All of a sudden I got a clear mental picture of Karthik in the PW offices (no C at that time) excited about his second son's birth and explaining to us the significance of his son's name. Ganesha, in honor of Lord Ganesh, the Remover of Obstacles and Lord of Beginnings. When he died on Saturday, Karthik's son Ganesha was only 12. To add more significance, in numerology 12 is the number of what is completed.

I cannot pretend to know why this tragedy occurred, or why Karthik felt he had no other options. I do know that Karthik was proud of his family and was committed to successfully providing for them. I also know that I saw moments of fear in his eyes that were covered up with intellectual bravado. Even on that day he was overjoyed at his son's birth, the fear was still there. He felt validated for having another son, yet knew that the proving had just begun. Apparently, it all became too much and it ended Saturday night in an upscale home just north of LA.

I think this story struck me for another reason as well. With what Keith and I have experienced this year, I have been made acutely aware of how thin the thread can be that binds us to this world. We create constructs such as friends, family and other emotional or physical commitments in the hope that they will keep us grounded and engaged in our own life. Keith has said that one of the reasons he didn't succomb to those near-death moments is because he knew he had to live now that he had a wife. That was an emotional commitment that overrode any other fears he may have had. Keith chose to live despite institutional care that put him at serious risk and, seemingly, would have been just fine if he had slipped away. The institution is not moved by individual desires and once you know that, you know what you must do to survive.

Clipped

Just about 10 days ago the clip that supports Keith's ventilator tubes broke. It's a plastic part that probably cost less than a nickel to manufacture and, in the big picture, doesn't have a whole lot to do with Keith's breathing. However, it still serves an important function. This clip keeps the ventilator tubes at a balanced angle so that the drag on Keith's trache is minimized. This is important because that drag pulls against the tube in his throat and impacts the healing at the intubation site. We put a call in to the home healthcare agency. They told us that it had to be ordered and would take about 2 weeks to arrive. In the mean time, we have been scouring the internet looking for this elusive piece of plastic and actually found the whole ventilator tube kit but nothing would arrive before the end of the month. And, since we expect to have the part from Walgreen's by then, we are just doing what we can to keep the trache tube from moving too much.

As I'm writing this, it has occurred to me that this little plastic clip is a perfect metaphor for the problems with the healthcare system: the big things get taken care of pretty well, it's the little things that cause the most grief and can shift the balance against you. We are managing as well as we can as each of these little things show up on our health doorstep. It's a team effort and among all the tools at our disposal, patience and humor are the most powerful. So, we'll continue to wait for the clip and laugh at the absurdity of it all as we just continue to breathe.

Critical Mass

These are the opening paragraphs in an article entitled "Fla. Medicaid Recipients Want Out of Nursing Homes."

Charles Todd Lee spent a lifetime going backstage at concerts, following politicians on the campaign trail and capturing iconic shots of everyone from Martin Luther King Jr. to Mick Jagger to Mickey Mantle. Today, he enjoys such freedom only in his dreams.

The 67-year-old photographer has been confined to a nursing home for five years, the victim of a stroke that paralyzed his left side. And he's angry.

"Most of the people come here to die, so you want to die," he said. "It is a prison. I can't escape it.


The article ends with a quote from John Boyd, 50, (who) has been in a nursing home for the last nine years. He hates them. He became a quadriplegic 36 years ago when he fell off a wall and broke his neck.

"I can't choose what meal I want, I can't have a visitor after 8 o'clock — it's just like a prison without bars," he said. "People are making decisions for and about me that don't even know me or even care about me. All they care about is the money they're getting for me."

Since our journey through the American healthcare system began last February, articles like these tend to catch my attention. The stories from patients like Mr. Lee or Mr. Boyd illustrate the limited options available to people who, like Keith, still have a lot of life left to live but, because of their disability are relegated to institutions just because that's the only option Medicaid dollars will pay for at this time.

This is a shameful state of affairs. As a country we are warehousing people who are willing and able to contribute but are prevented from doing so because of the powerful institutional/nursing home lobby that has heavily invested in maintaining the status quo and the short-sighted politicians who enjoy the benefits of that status quo.

What will it take to bring Mr. Lee, Mr. Boyd and others back into their community? Well, in the state of Florida, they've filed a federal lawsuit seeking class-action status on behalf of 8,500 institutionalized Floridians based on the premise that the state is illegally forcing them to live in nursing homes when they should be able to live where they choose. Should they be successful, not only will these patients be free to create independent lives, but they will also be setting a precedent for other states to follow. You can be sure we'll be keeping a close eye on this case.

While there is no guarantee that Texas will follow anybody's lead, it gives us a bit more hope that we're not alone on this journey and that the critical mass needed for institutional change is growing. Stay tuned.

Where the Presidential Candidates Stand on Advocacy for People with Disabilities

I came across Patricia Bauer's blog which featured an article by a person with disabilities who researched the primary parties presidential candidates' position in healthcare with special attention to disabilities. The author, Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University.

If you are physically disabled, have serious medical issues, or love someone with a physical disability or serious medical issues, I would encourage you to read this article prior to casting your ballot for President on November 4, 2008.

The Dead Zone

The 2008 election campaigns have included rhetoric about tax breaks for middle income families, and media coverage has included stories about families who have children with disabilities. Left out of all the election rhetoric are the candidates' positions on and commitments to those babies with disabilities who grow into adults with disabilities who all-too-often survive on extremely low incomes (less than 30% of the median income). These extremely low incomes are often the fixed benefit amounts of SSI and Social Security.

So, how does Texas stack up? Not very well at all. Texas is currently ranked 48th out of 50 states and scores extremely low in both eligibility and scope of services (followed only by Mississippi and Idaho). Here are some highlights. The entire report can be viewed here.

• Total Score: 335.5 out of 1000
  Rank: 48 out of 50
• Placing in the bottom 10 in two categories, including the one with the heaviest weight, Texas ranks a poor 48th overall. In fact, it is the only state that places consistently at the bottom, all its category-specific ranks ranging within 10 ranks. Unlike other states that have made a policy decision to cover more persons for fewer services, or vice-versa, Texas ranks extremely low in both eligibility and scope of services.
  
• With respect to eligibility, Texas tends to adhere closely to the minimum Federal Poverty Levels, for which it earns no points since the mandatory minimums leave many who cannot afford private health insurance without healthcare. This poor showing in eligibility in Texas means that large numbers of people are excluded from Medicaid just because of where they happen to live, and they would be covered in a state with more lenient eligibility criteria.

The most dangerous of the gaping holes in the Texas support network is shared by many states and is referenced in the first paragraph of today's post. It is about the dangerous and destructive dead zone for people with disabilities: age 21-65, the most productive years of all of our lives! During the time that they can be contributing to the world, they are marginalized, povertized and institutionalized. They are taken out of the economic mainstream and effectively left to beg for support. This is patently un-American. As a country we should be developing productive citizens at every opportunity.

In this election year, politicians constantly chatter about lower taxes, smaller government and putting everyone to work. Here in reality, I hear people complain all the time about the people who 'live off the government' and, to be fair, there are people who fit that profile. However, the majority of U.S. citizens want to be productive and contribute. They'd be happy to pay taxes if it affords them a quality of life that makes them feel like a whole American citizen. Many years ago, Martin Luther King called for people to be measured by "...the content of their character, not the color of their skin," it's now time for those civil rights to be extended to people with disabilities who want the chance to be full economic citizens, rather than be relegated to a place at the bottom of an economic ladder that they cannot currently climb. There are ways to help them up the ladder, one of which is the Community Choice Act. With the socioeconomic map of the United States shifting under the pressure of institutional failures, it is imperative that we create opportunity for all citizens. We cannot risk leaving anyone in the Dead Zone.

Healing

We actually got to see the hematologist last week. He's a very nice guy who usually sees cancer patients so when he opened the door to the exam room, took a look around and said "everyone looks pretty healthy in here, why are you here?" Keith told him about the anemia and the low red blood cell count. He looked closely at Keith and said "You don't look anemic to me, let's take a test and prove it." Stacy, heretofore known as the 'Blood Whisperer', entered the room and quickly drew the blood needed. (This in itself was a bit of a miracle, since Keith has a reputation as a 'hard stick'.) A few minutes later, the doctor came back in the room and declared that Keith was absolutely not anemic.

Not only is this a tangible measurement of how much better Keith is healing at home rather than in some institution, but also how the system can work once you identify the problem. In this case, the same day that I told the person in Keith's primary doctor's office my theory that we were just being paper shuffled around until the doctors could merge and deny service, we got the appointment. Coincidence? Probably. But it felt like I had somehow broken a spell by naming the wrong. (Okay, maybe I spent a bit too much time in Middle Earth as a kid, lol). Without a doubt, if we had not persisted, demanded and questioned we would not have had the appointment. How many people cannot do that for themselves? Too many.

As we've been on this healing journey, we have gotten a lot of agreement from folks about the broken system. This message is not just from patients, but from doctors, nurses, respiratory therapists, institutional health providers, home healthcare workers and just about everybody who has crossed our path. While in some ways it's comforting to know that we are not alone in our experience, it's also overwhelming to realize that the brokenness of the system is so accepted by all. The weight these healthworkers carry trying to hold it together is now breaking them. Perhaps patients are being sent home with ever more complicated medical routines to give them a better chance at healing. Certainly Keith has experienced exponential improvement at home.

So, should the broken system just be accepted as 'the way it is'? No. Can one person make a difference? Absolutely. It could be one person listening to a healthcare worker discuss her passion for patient care so that she is reinvigorated for one more day. Or the person who finds and connects with the individuals in the institutions. Or building community around solutions. Most importantly as long as one person continues to hold the vision of a strong, vital healthcare system, then we all have the chance of experiencing that truth. I have often been branded an idealist and, as my friends will attest, one of those individuals who actually holds those kinds of visions. So, when you're feeling overwhelmed with the broken system, uncaring healthcare workers and other uninspired participants in the healthcare world, just know that I'm your designated idealist holding a vision of a system that works.

Medicare(less) Lessons 1 & 2

As is often the case, the government infrastucture is designed for acute issues and falls apart once the diagnosis changes to 'chronic'. We all see this in the news every day. Some of the stories hit home, others are at home.

We will be eternally grateful that Keith was accepted into the Medicare program on January 1, 2008. Knowing that the costs were covered took some of the stress out of the 3-1/2 month hospital stay. We are also grateful that we had some time in the hospital prior to returning home to train with the respiratory therapists so we could handle the new duties when Keith moved home with the ventilator and trache. We were fortunate that Walgreen's Home Healthcare is the provider contracted to take care of the post-hospital needs. So, without a doubt, the government-managed Medicare fulfilled its purpose in regard to the acute healthcare issues Keith has experienced this year. However, in this phase of healing, when Keith's health needs have been recategorized as chronic, Medicare has transformed into Medicare(less).

One of the most important parts of this healing process is getting Keith back into his pre-hospital life. In that life he engaged with the world daily, he did not hang out in bed for days at a time. Because Medicare will only cover a manual lift, he can only get out of bed when one of his male attendants is here. This is because the process of using the manual lift requires quite a bit of upper body strength, which is not something that most female attendants have. We have requested an electronic lift, which is easily managed by one person and is safer for both Keith and his attendants. Unfortunately, Medicare considers this an unnecessary expense and does not pay for the lift. This forces Keith to be confined to bed and allows him experience the world second hand through me, his caregivers, visitors, the internet and the television. So we have leveraged all of those elements to spread the word about Keith's progress and get the world engaged with him. Although his physical movement is still limited by the lack of an electronic lift, he has been able to reposition himself as an activist and is back to engaging with people near and far.

Lesson One: Insurance does the bare minimum to keep you alive, but does not allow you to truly live. If you want a full life, you have to fill it!

We were recently informed that Medicare had determined that the inner cannula on Keith's trache only needed to be changed every three days, rather than every day as we had been instructed to do at the hospital. (The inner cannula fits in the trache and is the is the first line of defense against infection.) We didn't find this out from Medicare, we found this out when our Walgreen's representative dropped off supplies last week and we only had one box of replacement cannulas instead of three. Naturally, it was disconcerting to discover that Medicare was reducing support for something that we had been told was vital to Keith's good health. After conferring with Keith's doctor, we decided on a workable compromise and the inner cannulas will be changed every other day. Medicare will cover one box and Walgreen's will sell us the 2nd box at their cost. It's an additional expense for us, but well worth it.

Lesson Two: Medicare does not service individuals, they serve groups. You have to do the work to make the plan work for you.

Okay, those are the lessons for tonight. No doubt there will be more, after all, tomorrow is Monday and government is back in session!

Community

I have always recognized the power of community. Whether as a comfort when you are feeling alone or as an energized group working towards a common goal, it is a vitally important element of the human experience. This year Keith and I have been overwhelmed with support and kindness from the folks in our life who are our community. As the year has progressed and our lives have changed, we have been compelled to expand our community and tell our story to the world. Through this blog I've reconnected with old friends and been introduced to many other folks. We are all bound by the desire to improve the community by sharing our challenges and using the experiences to create an even stronger community ready to take on all that life offers.

I found this video yesterday and it struck me as a strong reminder that community begins with one person working to make a difference. I hope you enjoy it and pass it on:

PSA: Community Choice Act

As all good public information channels must, we're having a short break in the regular programming for a Public Service Announcement. (You can thank years of watching PBS pledge drives for that, lol).

Since our sojourn into the healthcare maze, we have found one piece of legislation that has given us a bit of hope that lights the way. You may have heard Keith and I refer to the Community Choice Act on a number of occasions. I thought it would be helpful to share the information here as well as give you a quick link you can use to tell your elected officials of the vital importance of this legislation if we want to be able to live indepenent lives to the best of our abilities. Keith may be the first person you know who personalizes this need, but I am quite sure he won't be the last.

Community Choice Act

For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.

Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice.

The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice. In addition, people would not be forced into institutions in order to get out on community services; once they are deemed eligible for the institutional services, people with disabilities and their families will be able to choose where and how they receive services. Instead of making a new entitlement, the Community Choice Act, makes the existing entitlement more flexible.

The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

TAKE ACTION!

Please click HERE to both speak for yourself and for others who have no voice.

Beware Cheerful Women Who Answer the Phone

Just got off the phone with Keith's doctor's office. We've been trying to follow doctor's orders and get an appointment with a hematologist because Keith developed anemia while in the hospital as a result of the drop in red blood cell production that can occur in cases of chronic illness. It all sounds pretty serious to us, so we're committed to jumping through the hoops necessary to make it happen. Trouble is, the hoops are moving, and on fire.

The hematologist that Keith saw in the hospital is not in his Humana/Medicare provider network. When we called for an appointment, the cheerful woman on the phone told us that the first $10,000 in expenses was our responsibility. Naturally, our next call was to Humana/Medicare to find a provider in the network.

Humana/Medicare gave us the names of several doctors in network, we chose the ones closest to Keith's primary physician and called for an appointment. The cheerful woman who answered the phone asked that we have Keith's records sent over before any appointment could be set, once she had those records she would call us to schedule the appointment. We immediately called Keith's primary physician with the request and were told it would be taken care of the next day.

About a week later, we realized that there had been no phone call so we followed up with Keith's doctor who assured us that the files had been transferred. We then called the hematologist's office who told us the person in charge of that was out, they'd check and call back.

Another week passes.

Another call to Keith's primary physician's office, more reassurances, ball back in the hematologist's court.

Another week passes.

I spoke with Keith's primary physician today and he said he'd check on it. A few minutes later his office manager called and said the doctors we had selected did not accept Humana/Medicare insurance. I called her back, told her that we got those recommendations directly from Humana/Medicare. She hesitated for a moment and, as if she was telling me a state secret, said that those two doctors were joining the practice of the original hematologist who saw Keith in the hospital. (Thus forcing us back in the position of having to pay the first $10,000 in expenses if we chose to make an appointment with them.)

I was appalled. If we had been told a month ago that these doctors were not going to be accessible to do the job, we could have made an appointment with another of the in-network doctors. In my estimation, they had knowingly continued to delay the appointment citing paperwork and blaming anyone who wasn't on the phone so that this merger could occur and they wouldn't have to deal with Medicare patients like Keith.

Fortunately, Keith is of hardy stock and is hardly wasting away from anemia. However, if this need was so urgent in the hospital that he was given direct hemoglobin and iron transfusions to strengthen his red blood cell count, why the hell was this appointment given no urgency here in the 'real world'? How are we expected to trust our doctors when the most urgent question is "how are you going to pay for this?" when "this" can't even be proven to be a problem that we as patients should give any urgency to at all? We are fortunate in that Keith & I are very resourceful, able to ask questions, and find alternatives. However, as Keith, who is a great poker player says, it's hard to win the game with the deck stacked (and re-stacked) against you.

It has been just about a month and we still haven't gotten an appointment set. So, the ring cycle begins again, and we will begin calling the next bunch of doctors and trying to get them to care. One thing I am sure of is that a cheerful woman will answer the phone

Labor Day (and Night)

According to Wikipedia, Labor Day is a United States federal holiday observed on the first Monday in September. The holiday originated in 1882 as the Central Labor Union (of New York City) sought to create "a day off for the working citizens".

The whole holiday has confused me ever since I was a kid. I grew up in Texas where there are no labor unions so we didn't have the parades or other indicators of the meaning of the holiday that might be more apparent to me. My confusion also might be tied to the fact I grew up in a family of entrepreneurs and otherwise creative thinkers and observed that work was a 7 day/week opportunity.

While that childhood didn't prepare me for holidays, it certainly prepared me only too well for work. Not just the timeclock driven work that is at the root of this holiday, but the 24/7 labors of love such as the work that Keith and I have taken on as we have committed to bringing him back to optimal health.

When we first arrived back home from the hospital, the work of managing his trache, the ventilator and medications seemed quite daunting. It became quickly apparant that we could handle all that and soon it developed its own rhythm. The bigger work that has emerged is understanding and taming the many-headed hydra known as the U.S. healthcare system. Believe me, this was not our original plan for the first year of married life. However, some are borne to seemlingly daunting tasks, others (like us) have them thrust upon them.

As we've researched the good, bad and ugly of the beast, we have been heartened to discover some amazing folks along the way. The first is Dr. Julia A. Hallisy who has written a book called The Empowered Patient which is a compendium of action steps and strategies for patients. She directed us to Lisa Lindell in Houston Texas who has written the book 108 Days about her experience keeping her husband alive after a month-long hospital stay turned into a 108 day odyssey through the healthcare maze. Dr. Hallisy also strongly recommended that we read the book Who Killed Health Care? written by Dr. Regina Herzlinger since it offers a real-world, consumer-driven solution to the ailing U.S. healthcare system.

Within those three books, we have the complete value chain of knowledge necessary to do our work. Dr. Hallisy tells you how to be a better patient; Lisa Lindell demonstrates how to be an advocate; and Dr. Herzlinger provides a straightforward plan for utilizing those patients and advocates to reinvent the system.

Now, I just need to find the time to read the books, LOL.

Don't 'dis' my ability!

As a natural innovator, entrepreneur and all-around (r)evolutionary, I am not the first choice to send in to deal with the system. I'm a direct communicator that just wants to get to the point. However, the keepers of the information mete it out in meager portions and it mostly leads to more questions rather than the answers being sought. Keith is much better at this game since he's had a lifetime to hone his skills. However, even he gets exasperated at the lack of solutions available for a problem that has been with our society since time began. That problem? How do we deal with the disabled in our society so that they remain productive citizens?

It has become increasingly clear that our nation's unspoken public policy is to impoverish people with disabilities. And Texas is no different.

In spite of Keith's professional and financial success, as well as the generosity of his friends and family, it is increasingly difficult to make ends meet. But, the truth is that he'll never be poor enough to get help from the state of Texas and, like most true Texans, he doesn't want to live anywhere else. Keith's forbearers moved to Texas before the Alamo fell. They have had a strong hand in shaping his hometown, Victoria, and have contributed to the economy in significant ways.

It is appalling that Texas which, as a state, has benefited greatly from his family's contributions, chooses to devalue Keith's potential by depriving him of the resources necessary to continue as a contributing member of society. And this goes beyond limiting Keith.

As his wife, I am happly committed to doing everything I can to support him in rebuilding his health and get back to participating in a life he wants. What this means is that I'm basically on call 24/7. We have very good Personal Care Attendants who are devoted to Keith. However they are people too and there are times that I have to fill in for them. In addition to managing that schedule, I also need to earn income and, when possible, take care of myself.

By denying financial support to Keith, Texas is also "dissing" my ability to contribute. Like Keith, I am a naturally entrepreneurial and highly productive person. However, the constant strain of managing the home healthcare experience sucks energy at an alarming rate. When I hear the candidates yammer on about the energy crisis I wonder if they are talking about fuel for the car or fuel for the caregivers? I can control how much I drive, however I cannot always control how much I am driven. Right now I'm running on the renewable energy of love, commitment and faith. What I need is money to cover everything else!