One year ago, I was extremely ill. I was full of ascites and having belly taps every week to every other week or so. The doctors did not know what to do, or how to help me aside from pumping me full of diuretics and giving me belly taps. I began to look anorexic on top and without hips my pants would get lower as the day wore on and my belly filled up. It literally felt as if there was a water bed inside me.
Since this seemed to be uncharted territory for my physicians and the team, they started to call me the mystery. On a more personal note, this helped my self-esteem immensely. Can you hear my eyes rolling and sense the sarcasm? I began to make up a story about my belly and what I would “call the baby when she was born.” Mind you, the due date constantly changed depending on my size.
During this 7-month saga, which I will revisit in future blogs, it became clear to me that the CHD community was entering a new age or a new generation. This is the medical technology revolution. There are commercials for other medical diagnoses and the advances being made in those areas, but not in ours. Why is this? Is it lack of a spokesperson? I will speak up and I know others who will too.
Media is a form of technology and I feel we need to join resources and hit the ground running, or we will have only ourselves to blame for the current status of things. I sing for those who cannot and donate what I can. With the new ACHA third party program, I only hope I can generate enough money and resources to do this again on a grander scale.
Currently, I refer to us as being part of the “guinea pig” generation. This is to refer only to how we are stumping our doctors and how technology is not quite ready for us. Technological and medical advances appeared to be happening all around, just not where it applied to us as a CHD community.
I found an entire CHD community on Facebook, a growing technological advance in itself. Here I met other people with the same or similar issues. I did not feel so alone but rather comforted in numbers. Likewise, this frustrated me, too. How come so many of us were having similar issues with no clear-cut answers? What works for one person may not work for the next.
Technology has started to advance, and new medications are being tried with success rates for some, but not all. People are being referred to facilities where the technology and success rates are both higher and better. I am on sildenafil and a fraction of the diuretics I was on a year ago. Lucky for me I feel and look better. Plus no one asks, “When are you due?”
Pacemakers and other devices have been improved upon and made smaller and smarter. For example, some Holter monitors are pocket-sized, pacemakers record events, and with the use of a pacemaker check kit that has a magnetic mouse, you can submit those events though the phone lines. Within the next few years pacemaker checks will be able to be transmitted wirelessly via smartphones.
Advances are happening, just not as fast as we would like or need. If you have any stories to share or can relate to this topic please let us know below. I must admit that this blog was typed on my first iPad, which is a hand-me-down and so “obsolete” that the Apple store does not even carry cases for it! The technological age is off and running fast. Advances in the CHD community of all kinds should be so quick and catch up to our generation.
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