Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
6.6 – if you read my previous post, you’ll know that my creatinine has risen yet again. I’ve alerted my employers: I’m going back to dialysis. My family is, please pardon the reference, waiting to exhale … we’re all just waiting for the other shoe to drop (pardon again).
In my past two introductions to dialysis I was so sick that dialysis started as a side-effect to a hospital trip. This time is different. I’m feeling pretty healthy. Tired, but healthy. I go to work everyday, meet deadlines and all that. I go home and take care of a sleep-deprived wife and a couple of girls on very different developmental planes. I even still go to the pool on the weekends and play in the water with Wallace, my eight-year-old. So it’s a weird thing to be waiting for dialysis to begin.
Because there’s no inpatient situation this time, I am basically in charge of getting my treatments started. What’s amazing is how hard it is to actually do this. My primary transplant doctor is on vacation. The surgeon who will insert a catheter into my artery to provide an access for dialysis – on vacation. My personal counselor for my insurance company – phone number is not working. I commented on a New York Times blog today that having to look for my own transplant seems indicative of the state of the healthcare world. The idea that I would have to chase pe0ple down to make sure I can get on dialysis seems to cement my theory: only you can make you healthy, nobody is going to do it for you.
The other paradox this week is one I’ve noted before. There is so much news lately about transplants and kidney disease that I must wonder: Is there suddenly more attention being given to our cause? -OR- Has there always been this much attention and I’m only noticing it now because of my increased efforts? I don’t suppose the answer really matters – it’s great that kidney disease news is on the rise. The squeaky wheel gets the grease.
With that, here are some of the stories that have come across my browser, or have been sent in by friends…
A doctor gives advice on staying healthy, for the sake of your kidneys http://consults.blogs.nytimes.com/2009/09/14/expert-advice-on-kidney-disease/#comment-13675
Medicare creates more expense by trying to save money on anti-rejection drugs: http://www.nytimes.com/2009/09/14/health/policy/14kidney.html?_r=2&hpw
Related article (and for those of you who have seen my business cards, you’ll note that we’re using the same kidney image): http://www.nytimes.com/2009/09/15/health/15brod.html?_r=1
Although kidney disease has been in the news slightly more so than it has in the past, the national awareness level is no where near where it should be. It’s staggering, and extremely upsetting to see how many people, like you, are affected by this horrible disease; nearly one in nine adults in the US suffer from kidney disease.
I’m a representative of Nephrologica, Inc., the World’s Leading Kidney Network. Our primary goal is to help as many patients as we can get off of dialysis, by providing them with a live kidney donor. We work on both a national and international, and in extreme cases have been able to coordinate a transplant for patients in as little as two weeks.
Please visit http://www.worldkidneynetwork.com for more information.
if I had a voting Representative or Senator, I would call them and ask them to vote for healthcare reform. I hope private insurance is better about covering post-transplant medication than Medicare is!