Thursday, January 19, 2012

Fighting for the right to access my heart’s data


7 comments:

Robert David Cohen said...

I had my Medtronic ICD removed a few years' ago after the wire connecting it to my heart fractured. The Sprint-Fidelis lead had been recalled by Medtronic because of high rates of failure (it was not considered by the FDA to be a new product and therefore no new testing of it was performed by Medtronic -- an outrage). Because it was too dangerous to remove the wire, which had become embedded in the heart muscle, my surgeon proposed snaking another model lead through the same vein into my heart. "What if that wire fractures, too?", I asked. When no satisfactory answer was forthcoming, I decided to have the ICD taken out. I had lost all confidence in the technology, the company, the FDA, and the doctors. So I am risking sudden cardiac arrest and death as a result of a sick, profit-based, corrupt health system. Lack of transparency about patient data is an important issue and I join you in demanding disclosure and accountability, but the problem is with the system as a whole.

legrande said...

I just heard you on my local radio station. I feel it is a very American way to handle things self reliance self management self control when we give up control of those things we hold dear, due to being lazy or just not being aware, we invite trouble into our lives. Would you give someone else full access to your bank account? No. What makes a doctor or a company think they can just own information about you and not disclose it. If someone found oil on my property they couldn't just dig it up without my consent. The question is do we own our bodies? Who is there to represent us in the decision making? Our doctor? Did we ask to be out of the loop. Who made us wards of the medical community.? Thanks for standing up. Something does need to change. Sincerely legrande.

legrande said...

I just heard you on my local radio station. I feel it is a very American way to handle things self reliance self management self control when we give up control of those things we hold dear, due to being lazy or just not being aware, we invite trouble into our lives. Would you give someone else full access to your bank account? No. What makes a doctor or a company think they can just own information about you and not disclose it. If someone found oil on my property they couldn't just dig it up without my consent. The question is do we own our bodies? Who is there to represent us in the decision making? Our doctor? Did we ask to be out of the loop. Who made us wards of the medical community.? Thanks for standing up. Something does need to change. Sincerely legrande.

Srmartinson said...

Robert, it is amazing but I haven't heard of anyone else who has removed their ICD removed after a lead failure, I thought I might be the only one: but after 26 inappropriate shocks, 6 surgeries in 4 years and after learning about the FDA as well I made the same decision as you.

I think this fight for access is awesome:) I wish Hugo the best!

Tiffany said...

I heard your entire segment and I think I can aid you in your quest to access the data provided by the instruments in your body. The company I am working with is called Cytta Connect and I have told one of leaders in this company about you and she was very excited to hear about your story.
My name is Tiffany, and you can reach me at tharz@aol.com
Hope to hear from you Hugo!

michelle said...

Dear Mr. Campos,

I also have an ICD (Medtronics), which was implanted in July of 2011. I also have another heart condition as well; Hypertrophic Cardiomiopathy with Obstruction with moderate regurgitation. How fun is that? Anyway, if you would be so kind to email me any information you have regarding Medtronics (how I can inquire about accessing my data, etc., I would be most grateful.

thank you and good luck!!
to both of us :)

federico said...

i have my 3rd ICD
st jude. riata it is ok
i don't know what is the information on my ICD but we would have the right to see it when we want!
i never talk about this with my Dr. but i will...
kiss from argentina
PS: it is very hard be good after a shock terapy right?