Friday, March 6, 2009

The Challenges of Surviving an Organ Transplant

Recently I met a woman whose husband had had a liver transplant. We were both on a flight and our trip-length discussion started off as casual conversation of “what do you do?” Her eyes lit up as I described Zume Life, and our focus on helping people take better care of themselves, of making it easier for people to manage their own health. What I described was not theoretical to her; it was her day-to-day reality.

Over 25,000 people receive organ transplants in the US every year (data). Their lives up to the moment of their transplant have naturally been very difficult. But, what comes next can be overwhelming for the patient’s family caregivers—a long, arduous, demanding, and tricky process of bringing the patient to a healthy state.

She showed me a folder, that she always has with her, which held reams of blank and filled-out worksheets of her husband’s daily health activities. Each day, spread throughout the day, she had to remember and record 30-40 specific health activities: 5 different biometrics, 17 different medications (Rx, OTC and supplements), and notes on food, symptoms, moods, activities and other notable events. Many of the medications had complex requirements (e.g. dosage dependent on a biometric measurement, “no food 1 hour before or 2 hours after”, different schedules for different days, etc.). In addition, the regimen changed constantly based on her husband’s changing health situation and the doctors’ interpretation of these changes. Being able to adhere strictly to this complex regimen and keeping very good notes is critical to her husband’s successful recovery.

As his health is so poor, due to both the underlying problems and the effects of this bombardment of powerful medications, the burden of adherence really falls upon her, and other such family caregivers. My fellow traveller explained that she was able to manage—hard work but doable—given her professional experience managing the details of large, complex projects. But, for many others in her organ transplant support group, this situation was overwhelming. They just couldn’t cope, they just couldn’t manage. They needed help, and she felt that Zume Life’s system was absolutely essential.

Through this conversation I also came to appreciate why the post-transplant situation is so demanding. Having never really thought about it, I assumed that once you replace a bad organ with a good one you’re on your way to recovery. It’s not so simple. The body is a complex organism, with lots of different working parts. If one component is working poorly, everything else is affected; the body has come to achieve an equilibrium where it continues to function in some manner despite the poorly performing organ. After that organ is replaced, all the other body parts are still working as they were before, creating havoc, and a big portion of post-operation activity is keeping the body from spiraling out-of-control.

Hundreds of thousands of dollars spent on the operation ... and then we leave families to create their own spreadsheets! Clearly we need to do better.

No comments: