I am a 40 y.o. female. I was diagnosed with idiopathic gastroparesis in 1994. I had a GJ tube inserted and received nutrition and medication via continuous feeds using the Kangaroo-Backpack Enteral Pump. I had tried every medication/treatment available. Tube feeding was my only option. I was 27; my son was 4; my daughter was 3; my husband was (still is) supportive and an inspiration.
We agreed to live the best life we could regardless of the medical situation. And every day I strapped on this backpack, hooked up the tubes, took the kids to daycare, went to work, picked the kids up, played at the park....lived life the best we could.
In 1996 I participated in a study to assess the efficacy of Gastric Electro-Stimulation therapy. It uses an implantable programmable device with leads connected to the stomach to simulate gastric motility. I was the first in Canada to receive this type of therapy. It's a pacemaker for the stomach and it worked!
I got my life back. My children got their mother back. My husband got his wife back. Life was great!
In October 2004, the pacemaker had to be removed because of serious chronic post-surgical infections. Immediately, the symptoms from the gastroparesis returned: continuous nausea, daily episodes of vomiting, unable to keep even the most elemental/simple foods down, weight loss, muscle-wasting...you get the idea. It's terrible. I now receive all my nutrition via IV (Parenteral Nutrition). It takes 10 hrs to complete the therapy. I infuse medication intravenously each day.
I need a new pacemaker and I need it now!
Gastric Pacing Therapy is not an insured service through my provincial health plan. I was advised last year, by GI to begin a campaign to pressure the provincial health ministry to add gastric pacing to its list of insured services. So I did.
More than 100 letters were sent to the Minister, MPP's, opposition critics and Admin at the Hospital. Over 500 postcards were mailed to the Minister's office. Each explained the need to insure the service so that I may have a significantly improved quality of life.
I spoke with directors and chiefs at the Ministry several times each week. And then,
We were denied by the Ministry. I received a letter that explained to me that Gastric Pacing Therapy is still considered experimental. It is not recognized by the province as medically necessary, nor the most appropriate treatment for gastroparesis.
And yet it is both medically necessary and the most appropriate treatment for intractable gastroparesis like mine.