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New MemberMy name is Matt Kemmerer. I am 24 yrs old and live in Fairfax, IA. I was diagnosed with X linked at 6 months old. I have recieved all of my treatment at the University of Iowa . It's been great there. I have gone through quite a bit over the years so if anyone has questions about procedures or infections I've prolly had it done so ask me anything. I have had 3 lung surgeries including a resection of my upper and middle lobes of my right lung.I have had your typical CGD infections through the years (pnuemonia's, aspergilious,solmenella) but have also had Nocardia twice. This was nasty and it resulted in surgery both times including my resection. Also a big important thing I do recieve Social Security Disability. It took me years and years of fighting through paperwork and legal junk but I went to court in June 06 and won. It's nice because I cant work full time because I would be way to tired and it helps pay bills but the big plus is medical coverage. We all know how expensive drugs are and this helps a ton. Thanks for reading and feel free to ask anything.
Submitted by mattjkemm on Mon, 2007-09-03 16:10. mattjkemm's blog | login or register to post comments
 Good Luck with the Disability. It took me a long time to get it ( I went to court). The extra money helps but the big thing is the coverage. Have you applied before for it?  My son Kevin is also 24. When he was in 4th grade he did his forensics speech about CGD. The research forced us to put the disease into terms an (outside the medical loop) 4th grader could understand. It also helped Kevin understand better what was going on with him. I do think in hindsight that the students that remembered that speech into middle and high school didn't remember so much the content, just that he had a disease. Kevin was treated in Iowa in the summer of 93 by Dr. Perlman. Do you know him? I often wonder how much having CGD (and to a lesser amount, his classmates knowing) affected Kevin's life. Not that he has turned out bad, quite the opposite. He is a wonderful, caring, hardworking young man. We have always heard from freinds and strangers alike how amazing he is. Sometimes I wonder how CGD has affected our family's life. Over all I think we are much closer as a family. I certainly wouldn't recomend going through CGD though. Where am I going with all this? I don't know. I just checked out the site for the first time in a long time and was glad to see that someone our son's age is active on the site. We live in southern Wisconsin and I guess it always helps to know that we are not alone in what we deal with CGD. Live every moment, Love every day, Wendy Yes I do know Dr. Pearlman. I am now primarely seen by Dr. William Nauseef. He is the Head of Infectious Disease at the University of Iowa. Goin to school was hard at times because kids don't always understand what I had. I think the best thing was that I never once was teased or made fun of because of it and that helped greatly with me. I felt I fit in more. I always like to hear of older patients too. Any time you have a question or anything feel free to ask. Thanks.  Hey, My name is Juanita and my boyfriend found this site for me. After reading your experiance he told me to check it out and talk to you. I just turned 21 and no longer have coverage through my parents, so im looking for ways to pay for the treatment I desperately need. You mentioned that you went through Social Security Disability, could you tell me a bit more of how you went about it?? I have a bad absess at the moment and have to get it checked and treated, but without a way to pay for the tests and procedures I cant make even make a doctor's appointment. Any information would be great, the more the better. Thanx! :) Janie Rey Well for a while I was on a state program for medical help until I recieved Disability. I just went to my local Social Security office and asked for the paperwork to file for disability. It is a unbelievably long process so it's not goin to come right away. It took me like 4 yrs to get it. I ended up goin to court over it. In the mean time look if your state has a program for medical assistance. Any other questions let me know. Thanks  Hi Matt. Thanks for the post. My son is 5 now and was diagnosed at just over a year old. Since his initial infections that were in his leg and neck, he has only been hospitalized once for another infection in his neck. We just let him start kindergarten and we're pretty sure this is gonna be rough for him... all those bugs children pass around at that age scare me. Did you go to public school? Just wondering. And if so, would you do it all over again? Thanks! Connie One day at a time.... and smile. :)  Hi. My name is Shannen and I'm a 15 year old teenage girl. I have been a member of this sight for a while and I was just reading your comments about ur son. I have the autosomal reccessive form of CGD.I was diagnosed when I was 5 after many years of confusing doctors because they didnt know what was wrong with me, and have been in and out of hospital all my life. I saw that you have just started ur son in kindy, I think thats great, I started going to childcare when I was 4 months old and kept going to afterschool care even when I was in primary school. I had the ordinary bugs but never got overly sick. I also went to a public primary school and apart from my anual hospital trips which happen because the weather gets hot and humid, I have only ever had minor infection issues which have been easily treated at home. I pay attention to the surrounding environment and sometimes I have to make some allowances but generally speaking theres not much I cant do! I hope this helps you!! From Shannen Thanks for writing. Yes I did go to public school my whole life. I didn't go to preschool though because of possibility of infection. School was rough at the beginning because I had a central line for 5 yrs. I had to explain to the class why they couldnt play rough with me at recess and stuff so that was hard but as I got older kids really were very understanding. I had a incredible amount of friends and support in high school so that made it seem like I was normal like everyone else. My biggest thing that always happened to me was I would get sick in the school year and when I came back to school everyone heard their version of why I was sick. I always felt if anyone wants to know just ask me. My mom always told me dont be afraid of telling someone what you have. Thats tough for small kids because they all think they're gonna get it from you. I think it was important I went to public school because otherwise I would of felt like even more of an outcast. Good luck with the school year and always stay positive ! |
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Matt - great to meet you :) My son Nathan is 21, (or soon will be) and it's great to read about you...we've kind of lost touch with the community after Nathan was around 12 or so. At any rate, it's really good to hear about your experiences, what you're looking forward to in life & how you're getting there. SS Disability is our next step, Nate's battling some 'bugs' now it seems, my fingers are crossed they aren't too bad... Take care!
Beverly Robinson, Nathan's Mom