I spend almost every waking hour fixated on health and healthcare – my own, my family’s, the nation’s. I do research, discuss, or meet with innovative thinkers and practitioners on economic theories and cutting edge technology. Yet I think the best lessons I’ve had in a while on the true meaning of health came Saturday night at the fantastic concert with Sting and the Royal Philharmonic Concert Orchestra.
1. I have had a skip in my step for 2 months since my husband told me he had bought the tickets. Many studies have shown that having a happy marriage can lower blood pressure, inflammation, and levels of stress hormones.
2. Likewise, having something to look forward to all week, seemed to lighten the load of every task I undertook.
3. The music at the concert somehow allowed me to both transcend and fully inhabit myself in a way that my poor but earnest attempts at daily meditation never reach.
4. I danced for much of the 3 hour set and certainly never thought of it as exercise.
5. Watching, being in the presence of people creatively and passionately expressing themselves inspired me to do the same.
6. Finally, experiencing the music live in the company of hundreds of others similarly enjoying themselves gave a sense of universal harmonization and wellbeing, a comfort in alignment.

So what did I learn about health at the Sting concert?
Health is a manifestation of a positive emotional and mental state much more than simply lack of physical disease.

Sixteen years ago this September, I was blessed to receive a liver transplant. Having been diagnosed with two auto-immune conditions as a teen, I was more than receptive to discussions with my transplant team of surgeons, physicians, and nurses on how to suppress my immune system so that I would not reject the organ.  Only recently have I realized that something was missing from that discussion.

With the five year patient survival rates for liver transplants at approximately 70%, depending on initial diagnosis, most recipients can expect to recover and return to work, school families – LIFE.  However, the longterm consequences of overimmunosuppression are seldom discussed, except for increased susceptibility to infections and increased risk of cancer.  After talks with my orthopedist about my diagnosis of osteoporosis, my primary care physician about a rise in my creatinine, and alerts about implications of immunosuppression on hypertension and cardiovascular risk, I have come to better appreciate that harmonizing the immune system rather than knocking it out should be the goal of post-transplant management.

Although approaches and protocols certainly differ by transplant center and even by transplant team, my sense is that the prevailing philosophy is still to prescribe as much immunosuppression as the individual will bear to preserve the organ.  I would like to argue that the goal of transplantation today should be to balance and optimize the individual’s immune system for graft survival and long term optimal health.

The tools most transplant centers use to monitor and manage immunosuppression are, for the most part, blunt instruments that measure levels of immunosuppressive medication in the blood or damage to organs.  I have recently been tested using an immune system function assay called ImmuKnow made by Cylex  (http://www.cylex.net/hcp.html) and found that despite therapeutic levels of immunosuppressive medication (I take Prograf and Imuran) my immune system is still highly active.  This empowered me to push back on my transplant hepatologist’s recommendation to reduce my immunosuppression further. We were able to have a discussion based on my personal immune system response and look for other ways to ameliorate some of my symptoms in a way that does not expose me to increased risk of rejection.

I’ve been surprised to find out that although there is this FDA-cleared test that gives such useful information to guide therapy, supported by more than 120 studies and 200 publications, most transplant centers haven’t yet adopted it and few other patients know about it.  Although my insurance covers the test (why not, compared to the cost of my medication or unthinkable, another transplant) some insurance companies, have denied coverage or are in the process of making that decision.  If you’ve used ImmuKnow or would like to have access to it in the future consider contacting the following fine insurance executives:

BCBS Patients in PA should send comments to:

Virginia Calega, MD

Highmark Blue Shield

Medical Management and Policy

125th Ave Suite P4105

Pittsburgh, PA 15222

Phone: (412) 544-7000
email: virginia.calega@highmark.com

Assistant: Marcine Benton

Ext: 42640

Subject: Cellular Function Assay

Policy Number: Z-24 Miscellaneous Services

Effective 2/15/10 – Highmark BCBS , general policy bulletin – lists 86352 (and a number of codes) as Investigational (no documentation of review of specific medical literature, clinical utility or patient impacted has been noted in the policy bulletin)

BCBS Patients in Texas should send comments to:

Allan Chernov, MD

Blue Cross Blue Shield of Texas

Medical Director

1001 East Lookout Dr

Suite B – 10.408

Richardson, TX 75082

Email: allan_chernov@bcbstx.com

Phone: (972) 766-1149

Assistant :

Holly Rock: 972-766-2011

Subject: Immune Cell Function Assay in Solid Organ Transplantation

Policy #:  MED207.147

Effective: 1/1/10 – BCBS Texas is considered experimental, investigational and unproven  (need to hear from patients about real world experience and how this is important to their quality of life , care and treatment)

BCBS Patients in Illinois should send comments to:

Kim Reed, MD

Blue Cross and Blue Shield of Illinois

Medical Director

300 East Randolph Street

Chicago, Illinois  60601

Email: reedk@bcbsil.com

Phone: (312) 653-5487

Subject: Immune Cell Function Assay in Solid Organ Transplantation

Policy #:  MED207.147

Effective: 1/1/10 – BCBS Illinois is considered experimental, investigational and unproven  (need to hear from patients about real world experience and how this is important to their quality of life , care and treatment)

Since I bought a new car 2 weeks ago, I’ve noticed every car advertisement whether in print, on tv, or on the radio.  Similarly, 2 years ago, when we began facing conception challenges I started noticing advertising for fertility clinics. It’s as if they sprang up like the soldiers made from dragon’s teeth in the original Jason and the Argonauts movie – suddenly they are everywhere.

The further along in this journey I travel the more these ads bother me.  I appreciate their presence, acknowledging that these are medical issues that can be treated and that there is no shame in seeking treatment, however, the ads usually read something like this:

“ Where Dreams come to Life” or some other mystical, aspirational marketing statement.

List of Services: the higher tech the better, as if we are in some fertility arms race — “egg donation, Intracytoplasmic  Sperm Injection ( ICSI), Preimplantation Genetic Diagnosis . . .”

“ Nationally Acclaimed, Highly Successful”

I understand, just like cardiac or prostate cancer centers that advertise their new Da Vinci robot, we are supposed to be comforted by and attracted to the facility with the latest and greatest, also practices need a certain volume to amortize the cost of expensive equipment of highly sought after sub-specialists like geneticists.

However, I wish that there was a center brave, bold, and honest enough to put forward the following:

There are no guarantees

We will work with you to 1^st help get you and your partner in the best physical shape pre-conception.

Then we will leverage the best of Eastern and Western Medicine to optimize your own reproductive cycle.

We have meditation and yoga classes and resources on site since this process is inherently stressful.

This will solve a high percentage of couples’ conception challenges.

As for the rest we will THEN apply only so much medicine, science, and surgery as is necessary to reach your particular family building goal whether that be your own genetic child, a pregnancy, or give you the information you need to assess when adoption or childfree living are options.  We will not pressure you into believing that all these are the same.

This may take a month or several years.  Depending on your insurance coverage it will likely be expensive.

We are your partner and will do everything we know for you.  The rest is really in God’s Hands.

Call us.

Several months ago I wrote about the scourge of nosocomial (still my favorite word) or hospital-acquired/healthcare associated infections (HAI) as one of the most important indicators to measure and monitor in an assessment of healthcare quality. HHS testified as much to Congress last month.
See Post: A Patient’s Quest for Quality in Healthcare
After spending many days in the hospital with my father, watching him beset by multiple tubes and catherers, noting the prophylactic antibiotics in his IV and the fact that his hospital staff was diligent about washing hands, the topic seems ripe for revisiting.
See Post: From DCpatient to CTcaregiver

It seemed timely that I was sent information on an initiative sponsored by Kimberly-Clark, the Not on My Watch Hospital Acquired Infection Prevention Campaign, that aims to reduce these infections. I’m sure with Medicare no longer paying for readmissions caused by preventable infections, many hospitals are keenly interested in information on how to reduce their infection rates. Most know Kimberly-Clark as the makers of Kleenex and other home icon products. I certainly didn’t realize they had a sophisticated healthcare division. (Disclosure/Non-disclosure: I am not compensated in any way for this post)

Some important facts to note:

In a quality report to Congress in mid-April 2010, the Health and Human Services (HHS) department noted that “very little progress on eliminating hospital-acquired infections” has been made since the problems were brought to light more than a decade ago. In addition to the potentially fatal considerations for patients, this lack of progress in preventing infections could have financial ramifications for the hospitals as the new health care overhaul law comes to fruition over the next few years.”

The Centers for Disease Control (CDC) of the U.S. Department of Health and Human Services notes that 5-10 percent of the patients admitted to acute care hospitals and long-term care facilities in the U.S. develop hospital-acquired infections, with an annual total of more than 1 million people. These infections are usually related to a procedure used to diagnosis or treat the patient’s initial injury or illness. A CDC report published in March-April 2007 estimated the number of U.S. deaths from healthcare associated infections in 2002 at 98,987.

The CDC has estimated that about 36 percent of these infections are preventable through strict adherence to guidelines by healthcare workers when caring for patients. These infections can be extremely dangerous because they are occurring in people whose health is already compromised. HAI often leads to lengthening hospitalization, increasing the likelihood of readmission, and adding sizably to the cost of care per patient. Financially, HAIs represent an estimated annual impact of $6.7 billion to healthcare facilities.

Two of the most important things that patients and caregivers can do are to ask about infection reduction practices in their hospital and insist that everyone washes their hands (from doctors to visitors).

Not on My Watch HAI Resources: http://www.haiwatch.com/

HHS Action Plan to reduce Healthcare Associated Infections: http://www.hhs.gov/ophs/initiatives/hai/research.html

While in NYC for business I received a call from my mother that my father had been admitted to the hospital. I raced home to Connecticut arriving at the hospital to find my father on a gurney in the hallway, pale and connected to oxygen and other tubing, waiting to be wheeled down to testing. I leaned over to kiss his cheek and let him know I was there.

So began my transition from DCpatient to CTcaregiver.

I’ve spent the bulk of the past two weeks trying to coordinate care for my father and support my mother as they struggled to understand and adapt to this health crisis and what it means moving forward. Now was the time to see if I could actually apply all the fancy patient advocacy talk and e-patientism to a situation closer to home.

1st Lesson: Being a caregiver is much harder than being a patient. You get no meds and never get to lie down.

2nd Lesson: Education is not Empowerment.
My parents are very smart people. My mother has a PhD and my father has 2 masters degrees. They are retired teachers – my father taught life science. Still the amount of detailed information on the myriad conditions that my father was battling and the pace and format at which this information was given was overwhelming. Also, information was also given without context. For example, in the huge package of information there was a list of the sodium levels of different foods. BFD. What was the recommended goal for how much sodium he should have each day? What should be the limits for sodium per serving he looks for on labels? My task was not to give them more information (although my husband and I were looking up drug information and clinical guidelines on our phones from the hospital room) but to give them tools to help them digest the information and apply it to their lives.

3rd Lesson: Fragmentation of the healthcare system can kill ya.
Now I knew this from my own experience, but since I have the ability to compensate for the gaps and uncoordination of medical care in my own situation, I did not truly appreciate the potential consequences of not getting it right. The most important and impactful things I did while I was with my parents was to get support services in place from the Visiting Nurses Service, schedule follow up appointments with all of their doctors, and to ensure that follow up testing was ordered, conducted, and shared in a timely fashion. My Dad is on coumadin for example, but the order for the INR (the test to see if his blood is being appropriately thinned to avoid clots but not too much) was not given, and then they expected him to travel to the office to have it drawn. IMHO all of this should have been done before discharge.

I could go on and I’m sure I’ll write about this more, but let me leave this post with . . .
Five Things Hospitals Can Do to Make it Easier for Caregivers, Reduce Readmissions, and Improve Patient Care:
1. Upon admission, prompt for ALL doctor’s names and ALL medication. Have a mechanism to alert all a patient’s doctors that the patient has been admitted. My Dad had eye drops that were counterindicated with his blood pressure meds and the ophthalmologist and cardiologist never knew of each other.
2. Proactively provide timely information and updates to family twice a day. (Luckily I knew enough to skulk around the nurses’ station well before posted visiting hours spotting anyone in a white coat or tie who handled my father’s chart to corner them into an update and plan for treatment. It shouldn’t be that hard.)
3. Conduct training. Don’t just give pamphlets before discharge. God bless my 70-something year old mother for figuring out how to wrangle my Dad’s oxygen tank and foley catheter into the car. Good luck trying to get my transplanted southern African-American parents to instantly transition to a low sodium, low fat, complex carb diet without significant intervention.
4. Schedule all follow up and have prescriptions ready upon discharge. The caregiver may not be able to leave the patient to pick up prescriptions and has too much on their hands to play round robins on the phone with multiple providers.
5. Finally, I’d like to request a 24 hour cafeteria. I appreciate the thought of the “Vending Café’”, but I’m never going to order a seafood salad sandwich from a vending machine and I don’t want to end up in the bed next to my Dad because I passed out from hypoglycemia. Caregivers need their strength to shoulder all the burdens laid there by the healthcare system.

National Family Caregivers Association http://www.nfcacares.org/

National Transitions of Care Coordination http://www.ntocc.org/

Today is the next to last day of National Infertility Awareness Week. I applaud Resolve® The National Infertility Association for sponsoring a wave of activities including media and advocacy visits to Capitol Hill. The most striking part of this effort, to me, has been Project IF.

Project IF is RESOLVE’s ongoing public education project. The goal is to make sure the public…
• understands that infertility is a disease that affects 1 in 8 couples of reproductive age;
• acknowledges that there are many ways to build a family;
• understands that the disease infertility impacts the physical, emotional, and financial health of those that are facing it;
• knows when to seek the advice of a specialist.

The online abbreviation for infertility is “IF”. And when you’re faced with infertility there are so many “IFs” involved. “What IF we can’t afford treatment?” “What IF it doesn’t work?” The “IFs” are endless… When you’re a friend or family member of someone with infertility there are many IFs you can’t always understand. “What IF we aren’t grandparents?” “What IF my friend doesn’t come to my baby shower?”

These “What IFs” have run through the mind of everyone I know struggling with this issue including myself. Thank you to all the bloggers who have taken up the challenge to expose your personal What IFs to the world towards creating greater understanding, empathy, and action. The best example, amongst many heartfelt and heartbreaking entries this week was Keiko Zoll’s video seen here on her Hannah Wept, Sarah Laughed: Redefining Faith & Womanhood in the Face of Infertility blog.

However, after reading and watching so many of my sisters pulling back the veil of the oft-troubling thoughts that ravage our minds and hearts, I wanted to put forward something a little different.

When I think of how to describe the infertility experience I ask people to picture a roller coaster or a swing. Emotions and moods going up and down. Most of us just want off the ride. So although there are many lows there are also highs and reason’s for hope and that’s what I want to add to this conversation.

What IF . . .
• I end up with not one, not two, but three kids (from 3 healthy singleton pregnancies) like 3 of my friends who went through IVF and then had subsequent natural conceptions
• I get pregnant next month
• All the things that I am doing to make myself the healthiest “vessel” establish life-long habits that enhance my life whether I get pregnant or not
• The meditation classes I take make me a better wife, daughter, sister, boss and business person
• I am a better mother when this is all said in done because I had to learn patience and endurance
• The clarity with which I know that I love my child even now is so powerful it changes the world

The traditional view of patient advocacy is a group of patients in various stages of a condition – sick, well, wheelchaired, put your youngest and oldest members up front – storming Capitol Hill for photo ops on the steps and protesting outside an office and getting a perfunctory “we support research” from the junior staff before leaving. Surely some long-suffering well-connected heads of patient advocacy organizations and their hand-picked favorite patient are invited to testify at a hearing or opine on a bill as one of 100 in a room at a public session.

If we look closer, though, sometimes patient advocacy has a different look. Sometimes patient advocates are the policymakers themselves. Two recent experiences brought home to me the power of policymakers and key influencers sensitized by their own experiences with facing a life-threatening diagnosis, navigating a dysfunctional health system, and balancing an illness with work, family, and life.

The Honorable Hank Johnson, member of congress from Georgia’s 4th district, gave his support for the HR 3974, the Viral Hepatitis and Liver Cancer Control & Prevention Act at a press conference for the National Viral Hepatitis Roundtable after fighting his own battle with hepatitis C. Mr. Johnson discussed the impact of the legislation not only from an understanding of the statistics, as did his colleague Bill Cassidy, a practicing hepatologist in addition to representing his Louisianan constituency, but from his understanding of the stigma, fear, loss of identity, and perceived lack of productivity and potential.

My second experience in the same week came from a conversation with Billy Tauzin, the soon to retire head of the Pharmaceutical Research and Manufacturers of America. Mr. Tauzin, a former Republican and Democratic member of Congress and instrumental to the passage of Medicare Part D’s drug benefit is credited often as a savvy politician and negotiator. I appreciate how he has put patients’ voices and experiences, including his own, front and center, better connecting the products that the industry produces to the lives they save that anyone else. And he carries this voice and message to places – high-stakes formal and informal negotiations — where it truly matters. His advocacy has an authenticity money cannot buy having originated in a hospital bed, with a dire diagnosis and a medication that restored him to health.

This is not a plea for emotion-based legislation or for everyone to tout their own personal interest above what’s best for the country, but if policymakers are expected to bring their experiences in banking, business, and law to bear on their work, why shouldn’t they bring their experience as patients. While I wish every member of congress good health, I hope that if they do have personal experience with the healthcare system that they channel that into making and supporting relevant, reality-based healthcare policy.

http://www.newsweek.com/id/230061

I remember reading President John F. Kennedy’s Profiles in Courage when I was a girl and being inspired by the recounting of Senators standing up to colleagues and constituents alike to speak out and vote on principle for what they thought was in the highest interest of the nation. Courage was the word that has most frequently come to mind with the passage of the Patient Protection and Affordable Care Act, better known and the Health Reform Bill, Sunday night in the House of Representatives. Despite levels of vitriol not seen since the Civil Rights Movement of the 1960s, complete with shouting, spitting, and name-calling outside and inside the Chamber, Democratic members of Congress came together to lead. With this bill the administration made a statement about who we are as a nation, as a people, a nation that cares and supports all its citizens, a nation that understands that a foundation of health is necessary for enjoyment of all our constitutional rights and the many privileges of living and working in this great country, a nation that can find money for peace as well as war.

Some say that this is a government take-over of healthcare. It is not. Insurance companies, drug manufacturers, and hospitals are still standing and benefit from more insured. Small businesses are key beneficiaries and there will greater opportunities for job mobility without fear of losing and never regaining insurance coverage one can afford. Patients benefit. Almost all of us will have a “pre-existing condition” if we live long enough.

Some say it costs too much. How much is too much for health? Ralph Waldo Emerson once said that “The first wealth is health”. We would do well to remember that. Do we need to do more to reduce (not just shift) costs of healthcare while maintaining/improving quality? Yes. However, one bill is not required to do all things.
If the purpose of government in a capitalistic, constitutional democracy is to do collectively what we cannot do individually to ensure a strong, stable and prosperous country then this Democratic Congress has done its job. They have my vote not only in the next election, but for the next edition of Profiles in Courage.

Dear Friend of Health and Patient Advocacy,

While we all wait to learn the results of the tremendous public debate on expanded health care and insurance reform, significant changes in the practice of medicine and delivery of health care are proceeding non-stop. Electronic health records are one example of how technology is transforming patient-provider interactions, but digitalization is also being applied to new devices and medical technologies. When combined with wireless communication, patient and diagnostic data can be uploaded from and sent to all locations with an Internet connection. For patients with chronic conditions anywhere or living in remote areas, this means vital signs and many health conditions can be monitored and reported without limitations of geography, transportation or time. But one more change is also quickly revolutionizing health care and that is genomic applications.

Now, the Friends of the National Library of Medicine has organized front-line developers and users of these new technologies in a ground-breaking two-day conference at the Natcher Center at the National Institutes of Health in Bethesda, MD to highlight how these changes are fostering true patient-centered care and creating a new “e-Patient” paradigm. The conference will also put the patient experience at the forefront of the presentations and consider the meaning of comparative effectiveness evaluation in a time of personalized health care.

Although the early registration deadline is past, the Friends of the National Library of Medicine is offering a 50% registration discount to personnel associated with nonprofit and patient advocacy organizations. You can review the entire ePatient program at http://www.fnlm.org, but to register at the $195 rate, please send an email requesting this special rate to Sarah Pease at spease@oai-usa.com.

Thank you, and I hope to see you at FNLM’s ePatient conference on April 6-7, 2010.

Download the promotional flyer

Sincerely,

Richard Gelula
Executive Director
Friends of the National Library of Medicine

P.S. Flash Update: Dr. David Blumenthal, the Administration’s National Coordinator for Health Information Technology, has confirmed as keynote speaker. Other keynotes will be given by Susan Dentzer and Ewe Reinhardt as well as presentations by leaders in research, technology, industry, patient advocacy and other topics.

In the “I wish I knew then what I know now” category are a laptop hard drive and full bookcase of information on fertility that I have amassed in the past 2 ½ years. Fertility challenges are something that few women envision encountering (although 1 in 7 couples may experience) and I, like so many, went straight to What to Expect When You’re Expecting.  After 6 months (I’m over 35) and a few blood tests I realized what I needed was more like What to Expect When You’re Expecting Expecting and Expecting, But Never Seem To Get Pregnant.  Through trial and error I have amassed some essential resources that I would like to share with any woman experiencing difficult conception.  This pared-down collection of must-haves reflects my belief that understanding your cycle in detail, creating a mind-body connection capable of withstanding the inherent stresses in the challenged fertility process, and optimizing your nutrition are the key elements to a successful fertility journey whether you get pregnant or not.

The DCPatient Fertility Toolkit

Books:

• Taking Charge of Your Fertility by Toni Weschler, MPH
• Navigating the Land of If: Understanding Infertility & Exploring Your Options by Melissa Ford
• The Infertility Cure by Randine Lewis, MD
• Conquering Infertility by Alice Domar, PhD
• The Fertility Diet by Jorge Chavarro, MD Walter Willett, MD, Patrick Skerret

Meditation/Mind-Body Connection:

• Circle +Bloom http://www.circlebloom.com/
• Listen to the February 24^th Real Women on Health! Blog Radio Show featuring Circle +Bloom http://bit.ly/au3ce2

Body/Mind-Body Connection:

• Pulling Down the Moon – information and appointments for acupuncture, yoga, and other complementary therapies http://www.pullingdownthemoon.com/

Supplements:

• FertileAid http://www.fertilaid.com/

Websites:

www.resolve.com

www.conceivingconcepts.com

That’s it!

Although it wouldn’t be fair to leave out my personal go-to fertility coach and meditation workshop instructor/acupuncturist – Connie Barrow http://www.fertilepossibilities.com/ and Lisa Eaves http://www.heal-from-within.com/

Let me know if you find this helpful and feel free to recommend the essential elements of your fertility toolkit.