Archive for February, 2010

The Essentials of the Fertility Toolkit

February 25th, 2010

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:

Body/Mind-Body Connection:

Supplements:

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.

Are Patients the New Black People?

February 19th, 2010

I had a call this morning with the head of a huge initiative in healthcare that invited the patient perspective into the process in the fourth year of the effort, despite the prominence of the term patient-centered in their name.  One of the reasons was that, “patients were hard to find”.  Now I know what she meant – she wanted patients who were able to speak beyond the specifics of their personal experience and had the professional skills and demeanor to go toe to toe with physicians, hospitals, and other business executives.  She wanted qualified patients.

I had a sense of déjà vu.  This felt to me much like the corporate recruiter lamenting that qualified Black candidates were so hard to find.   They then proceed to use the same handful for all board positions or job openings.  Now I see both educated, talented African Americans and articulate patient advocates everywhere I go ( not necessarily in the same places) so I thought I could use the same techniques to offer them to the corporate and policymaking worlds.

The best way to find qualified Black candidates is to (1) ask current Black executives to recommend some and (2) go where African Americans congregate.  Likewise, it seems the way to identify and attract patients willing to speak and serve on behalf of other patients is to (1) ask active patient advocates (and I don’t just mean the CEOs of patient advocacy organizations who may be excellent professional association managers, but may not be able to articulate the visceral experience of someone living with or having survived a condition) and (2) go where patients go – hospitals, doctors offices, and yes, online.

So I’m asking you.  Are you in?  Will you step up yourself or pass this message along to others you know who may be appropriate?  Please send your name and bio or resume to me at dcpatient@dcpatient.us if you’d like to be part of the Patient’s Bureau I’m creating to serve as a referral source to conference planners, policy committees, and government agencies so no one can ever again have an excuse not to include the patient perspective.  I’ll also do a follow up post listing those names I am permitted to name so word gets out.

Thank you!

Weathering the Storm with Chronic Conditions

February 10th, 2010

As the 4th major storm this season hits Washington, DC I received an email (thankfully I still have power) from the National Kidney Foundation calling for drivers of 4x4s to help transport dialysis patients. Six thousand patients need dialysis in the DC area alone.  Possessing a small vehicle woefully unsuited for the task I could not help directly, but it made me think about what these crises mean for patients who rely on hospital-based services, or simply electricity and heat to be able to manage their conditions.

What can patients do to ensure that they have access to care during emergencies?

  1. Have extra medication on hand.  You may not be able to get that refill by mail order or even from the pharmacy across the street.
  2. Have your own backup plan. Contact a neighbor, family member, or work with your hospital social worker to proactively identify a volunteer to check on you, drive you for care, or provide a warm place to stay overnight and plug in your equipment.
  3. Ask your doctor or healthcare team if home dialysis or temporary home-based care is appropriate for you so you don’t have to leave your house in unsafe circumstances. Do your family members know how to administer your shots or IVs?  Get them trained!

Those of us with chronic conditions are accustomed to making plans when we travel.  I now realize that we need to be as diligent when we are at home.

Volunteer to help Dialysis Patients