Hey everyone. I am a semi-recent type 1 diabetic. I was dx on May 17, 2010 at the age of 26. I am a senior Ph.D. student in biomedical science. I have been blogging about my experience as a participant in the DEFEND-2 clinical trial. There are a bunch of other posts about the DEFEND-2 clinical trial intermixed with complaining about my job, personal struggles with the disease, fighting insurance companies and how it has affected my family.
Check it out!
SuFu
PS The blog is anonymous so, regretfully, it’s going to have to carry through onto there.
Hi,
Nice blog – and a great way to get things OUT of your system. My 14-yr-old daughter was diagnosed Nov 29 & we’re thinking about participating in Defend 2 in Indianapolis. I know it may make her feel sick, but the long-term benefits may outweigh that pain. Be careful with the “numb” feeling, because it is part of depression. I know you are dealing with tons of stress & sometimes you have to go on autopilot to operate through everyday life, but tread carefully. 2010 was horrendous for us also. I have a belief that everyone has sh*t going on that we can’t see; or maybe that just makes me feel better about all the crap I’m dealing with. In a nutshell, I lost my job, my husband lost his job, my sister lost her baby after a horrifying pre-term delivery, my husband had to take a job in Chicago and leave me with our 2 girls, then right when we thought we could tell 2010 to kiss off, Samantha was diagnosed with Type 1 after being admitted to the ICU. Good news: my husband came back to live with us just in time for the diagnosis. This is turning into my own blog: just to let you know that someone else is dealing with multiple issues & understands.
Hey samsmom,
I’m glad to hear things are turning around for you and your family. 2010 was a rough year for a lot of people. My in-laws are going through neither having jobs and the hardships it produces.
I agree with the numb feeling thing. It was being able to blog and post that which really helped me out. Since then everything has been a whole lot better. My family life has vastly improved, my son is behaving better and my job is more enjoyable than ever.
I wouldn’t want to push you either way on the DEFEND-2 trial. There are risks with it and it is horribly time consuming. On the plus side there is a chance to benefit, your daughter is the age they are looking for and with the money she will make on the trial she could have a heckuva college savings built up. Also receiving all testing supplies for free will make things easier on the insurance side.
Best of luck and keep in touch!
SuFu
Sam already told me that any money they give us is hers! There is also a discussion or blog on here about being guinea pigs?? and that is about Defend 2 also. I have been searching the internet for people who are talking about their experience with it. We’re going to Indy Jan 17 for the screening. It’s a little over an hour drive for us, so I know all the visits will cut into our schedule. And school.
Keep writing – I’m a writer, but I haven’t been engaging in it much lately. I will say that feeling down often gives me something to write about, then it’s kind of like therapy to put it all in words and get it recorded. I feel some writing coming on now – 
She will be a “rich” teenager! I would be careful about whom you talk to about being on a clinical trial. There are big differences between sites and especially with this being a type 1 trial it will not be the run of the mill guinea pig thing. That happens more in oncology trials. I have had a great experience with it. I ended up changing my endocrinology care to the study site PI because I really like the way he treats the disease. The other thing you have to think about is the possibility that she will not get the drug, I know that’s not always the best thought but it’s part of being on a randomized trial (I am 90% sure that I did not get the drug). The major benefit, irrespective of getting or not getting the drug, is the care she will receive. She will be meet with an endrocrinologist about 20 times over the span of the first year compared to the standard 4-5 visits you would receive outside of the CT. This has helped me more than anything else. I have the opportunity to bounce ideas and ask questions on a monthly basis rather than trying to reinvent the wheel by myself. I drive 6 hours one way to the study site, so I know about the time and missing school/work thing.
The biggest thing for me during the infusion was horrible fatigue. I had the infusion in the morning and as soon as I got back to anywhere with a couch/bed/chair/floor where I could sleep I did, for about 3-4 hours every single day after dosing. That and the constant migraine I had/have again were/are the worst.
Best of luck! Sorry if this is really discombobulated but I had a really long day and just ate something with potatoes in it so my BG is going high… which is never good for the thought processing!