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.
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.
16 comments:
It is shocking to me that in this country with universal health care that we would let someone starve to death; that we would deprive them of treatment that is available; that we could save them but we choose not to. Tell me: what can I do?
I had tears in my eyes as I read your story. This is unbelievable to me. Can we send your blog to every elected official in the Province? They need to understand that they didn't turn down the procedure, they turned down your chance to live a full and fulfilling life. I'm shocked.
Have you contacted the people that make the pacemaker. Maybe they can present a case to the federal government to expedite this approval>
Hello Christine -- I am having trouble posting and will try again
Have you seen our non-profit website: www.digestivedistress.com
We initiated the action in AB for trying to get approval for GES (Enterra Therapy)
Please call me -- contact info on our site
You have many options for accessing GES and other treatment options
hope to hear from you soon
jeanne Keith-Ferris
dear Christine, I "work: with jeanne on the GPDA site. She (with minor assistance from me) has tried repeatedly to improve awareness of this horrible disease and now to promote the aproval ao the GES pacer. i am so lucky with my gp... I have had it for 17 years and so far am resonably well controled by mega doses of meds. Good luck to you and i will continue my efforts on yours, and other sufferers behalf, celia
In this day and age and in Canada it is disgusting that this type of procedure is not covered by our health care.
how much do you need?
Thank you, Tasha. What you could do for me is to keep your family close and value them. Always have room in life for laughing and always listen to your Mom (ha, ha on the last one!).
Solicit pro bono care from the medical provider - ask for monetary donations from "everyone". Forget pride. Many are generous and will do all they can to help if you will but ask. Who knows, there might be someone out there with tremendous financial resources who would love an opportunity to do something truly worthwhile. ASK! God bless you.
Hi Christine, I'm so sorry to hear this. How frustrating for you. I can relate. I have had gastroparesis for several years and I am now on home TPN too. The pacemaker is not really an option for me right now because I have small bowel dysmotility as well. I also have weird anatomy and they are worried about perforating my bowel during surgery. Anyway thanks for blogging. It is good to know I'm not alone. Hang in there.
http://neuronswithdystonia.blogspot.com
February 21, 2008 at 5:42 PM
Hi Christine, I was taking about you when I had my appointment with my GP psychotherapist yesterday. When and where did you have the operation for the gastric pacing with implanted neurostimulators done?
you are in my prayers,
Lucie Simard Serre
Thanks for checking out the site. Hope you were saying nice things about me to your doc (Laugh). By your comments, I'll guess you suffer with gastroparesis, too?
The pacer was reinserted in Cleveland at the Cleveland Clinic:
Evaluative Appt Series
Surgical Appt Series
Follow up appt in Cleveland, still not posted to blog yet (It will make it there eventually)
Offline emails, anytime via link near top of page.
Best,
What do you think that my GP psychotherapist can do for my condition with gastroparesis? I have a difficult time to be able to talk to a professional. Who did you to talk to about your condition of your stomach?
Lucie Simard Serre
I live in ontario and I like more information please.
Lucie Simard Serre
Your article from the Toronto Star was read by my GP psychotherapist. My yahoo.ca e-mail and e-cards is not working well. Please tell me more on the site or comments. How are you Christine and what have you been doing?
Lucie Simard Serre
Lucie,
In the right sidebar is a link to join a group forum. The comments section here doesn't facilitate a conversation.
You'll need to join the group to post to it.
CL
Living With Gastroparesis Forum
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