Archive for June, 2010

Redefining Success in Transplantation

June 27th, 2010

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  ( 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

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


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


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)

IVF Advertising

June 7th, 2010

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 1st 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.