I haven't been writing a lot lately, but when I have it's often been about my battle for a Lung Transplant and not a lot about my IC. This Blog was started as you all know because after being diagnosed with IC I became a passionate patient advocate, ICA volunteer, Fundraiser and because I wanted to help raise awareness about IC.
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
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
CME/CEU/CE credit for physicians, physicians’ assistants, nurses, pharmacists, and other providers.
There ARE doctors out there that take IC seriously! Let's help more do the same!
I'm so thankful your doctors are so good! That perspective is good to hear. I get frustrated at the Urologists and Obgyn that should know about IC and pelvic floor dysfunction. My pain doctor specializes in "pelvic pain" but doesn't know anything about the current treatments. We all need to educate our doctors but with grace. You are a precious example...keep it up. Praying those new lungs come soon!
ReplyDeleteThanks for your prayers!
DeleteI just read a story from another IC patient who had a urologist that was really mean. He told her that IC was not true, and that he didn't believe in it. No matter how much grace she tried, he was an arrogant SOB.
ReplyDeleteI'm really glad you found some compassionate doctors. How many times between intervals are you having to cath?
Catherine,
ReplyDeleteI found a similar situation with my last few trips to the hospital. I had no problem with the doctors knowing (or, at least, having heard of IC. I had a problem explaining to every nurse, CNA, etc. every time the shift changes. So, I had mom bring me some notecards, a skein of teal yarn, colored pencils, and a hole punch. I took the cards, and wrote something along the lines of "Interstitial Cystitis (IC): What is it, and why I have such a high pain tolerance." Inside, I gave a brief description of IC, a drawing of a sad bladder, and the ICA website. I punched 2 holes in the front, and made a bow of the teal yarn. I made about 10 of them and left them on my tray table, while I had my headphones on and tried to doze. By the end of my week, I had only 1 left.
Next time, I'll just print them up.