July 30, 2013:
Through sharing my blog I have been contacted by several CIDP patients who are either former transplant recipients sharing their stories with me or they are interested in more information about the stem cell transplant process. Today, I came across a CIDP patient who has been discussing the stem cell process with their neurologists. From what I can gather this patient has a neurologist in one city that coordinates with a local neurologist in their home town. While presenting their case to the coordinating neurologist the patient was met with resistance. Apparently this neurologist felt that the stem cell procedure was "too aggressive of a treatment." When I read those words I almost fell on the floor. WHAT? I have had CIDP for 20 years and I have been through all of the standard "passive" treatment plans. For most of us, these treatments do not work. In my case, I had tried virtually every treatment option out there and it was time to get aggressive.
Now, let me be clear: STEM CELL TRANSPLANT IS NOT FOR EVERYONE. If your symptoms are under control and you are happy with your quality of life then you are where you need to be. I discovered the stem cell transplant program at Northwestern because I had become dissatisfied with my treatment options and my quality of life. My life revolved around being hooked up to an IV pole while IVIG was pumped through my veins. And for what? My quality of life was deteriorating. I had gone from walking with no aids to being virtually wheelchair bound. This is what the standard treatments had done for me. I was not going to just sit there wasting away. That is what drove me to Dr. Burt.
Another argument I hear is that it is unknown what the true long term effects of the stem cell process will have on a patient. Well, from a doctor's standpoint I will give them a pass on this one. Doctor's have to tread lightly on this issue because it is a research study and we are a sue first nation. However, I know what the long term side effects of prednisone are. I am 33 years old and I have osteoporosis. I also know the long term financial cost of IVIG. So, for me when I was deciding on whether or not to pursue Dr. Burt's study, I did not ask permission from my neurologist. I did my homework and presented it to my neurologist in a way that said, "I am doing this and it would be great if you could support me. If not, I understand and you need to understand why I need to do this."
It is the discussions like the one I had today that reenforces my drive to start educating neurologists. I have seen the benefits of the stem cell transplant, and I would
recommend anyone who is thinking about it to come to Chicago and meet
Dr. Burt. I understand that these neurologists make a living on repeat business. Therefore, if we all get healthy, we will have no need for them. The truth is we have to decide for ourselves what we want our treatment plan to be and fight for it.
Here are some articles and information that you can take with you to show your neurologist.
I am sure there are other articles. For those who follow this blog if there is other information, please let us know in the comments. The more articles to support this HSCT the better.