All of that has had to take a back seat since being diagnosed with end stage lung disease and told my only option was a lung transplant. My life was turned upside down in the blink of an eye. All my energy and focus have been going toward my lung disease and 3 hospital stays. Trying to get accepted for a lung transplant. So I have not been actively participating or writing about my IC.
Recently, if you've been following me, you know I just spent 10 days in the hospital being evaluated for transplant. The process is still ongoing but as I have gone through this process, been admitted to the hospital on 3 separate occasions, something jumped out at me that those of us in the IC Community often talk about.
Yes, it's true: I realized I knew more about IC than MOST of the doctors or nurses that I dealt with in the last 6 months. In most cases, though not all, I knew more than they did. This was not a surprise and we all often talk about this.
But here's the thing. This ended up NOT being a negative experience. As an educated IC patient, I was able to communicate with the medical staff clearly about my condition and what my special needs were while I had to be in the hospital. I have to self-catheterize regularly and I needed supplies to be able to do so.
But I cannot say enough about how seriously every single doctor and nurse took my IC. Every single doctor I came in contact with wanted to be sure my IC was being properly taken care of. They didn't talk down to me and asked me intelligent questions and took it very seriously. The staff bent over backwards to get me catheters and supplies so that I was able to continue to self-catheterize while I was in the hospital and still be comfortable.
I was particularly impressed with the Transplant Team's interest and how seriously they took my IC. They want to insure that if I am accepted as a transplant candidate that they can manage my IC and keep my comfortable.
I was so pleased to see so much interest, care and concern for me and my IC as I've gone through this process. My IC is not happy these days but there isn't much I can do about it as I struggle with my lung disease. I manage it as best I can.
But it seems we hear so many negative stories - and I know they are out there - about the lack of knowledge about IC. I felt it was important to write about my experience and how positive it has been.
I think this is evidence that being an educated patient pays big dividends. I was able to talk to them about IC with confidence, knowledge and expertise. At no time was I unable to answer a question about IC and it's treatments, research and why or why not I was not being treated a certain way. They took me seriously because it was clear I was a knowledgeable patient.
So if ever there was a case to be made for getting educated, my situation should be it. I have seen more doctors than I have been able to keep count of - something like 20 at this point. Each was impressed with my knowledge of my IC and my medical condition, my history, medications I was taking, allergies to medications, ability to talk about my reactions to medications and more.
We can help doctors understand IC if we ourselves are educated. Be your own best advocate and keep good records on your medical history, medications, surgeries etc. Be able to talk about IC with confidence, knowledge and facts.
Here's a link to the ICA's Healthcare Provider Toolkit. This is a great tool you can give to your doctor to help with IC Education. Some of the tools even offer the