Every year I have metabolic testing done to see how my islet cells are functioning. This week I had 2 of 4 tests and both had excellent results. May will be 6 years since I had my transplant and it still freekin amazes me!
It changed my life in such a basic fundamental way that it's difficult to explain just how amazing it really is. When a disease is all encompassing like diabetes is, it becomes woven into your life. It has to or you can't survive. It effects everything from what you eat to how you make your living to the people you're friends with and every, single, choice you make, is made in the light of, "How will my health be effected by this, and how will this choice be effected by my health?". It's no wonder there are so many people burned out by Diabetes. (Doctors, there's a lesson for you here about your lazy non-compliant diabetic patient that just won't listen to reason).
Diabetes wears you down, it can be oppressive, daunting and down right scary. To have that constant burden lifted after 26 years of it is nothing short of a miracle.
I wake up every day and I say a silent thank you to my donor and their family, to Dr. Jose Oberholzer, the University of Illinois Hospital, Chicago Diabetes Project, and especially, especially Cellmates On The Run, the charitable organization that helps fund the CDP through raising money by running in races and marathons throughout the year. If you have diabetes, or know someone that has diabetes please consider donating or even better running with them. There are still charity entries for the Chicago Marathon open. You can find their website here.
thank you
oh and
Yayislets!
Showing posts with label Diabetes Research. Show all posts
Showing posts with label Diabetes Research. Show all posts
Wednesday, February 15, 2012
Saturday, October 2, 2010
Long Time No See
I can't believe it's been over two months since I've posted. Yikes! Time flies when you're uber busy with, um, stuff.
In August my A1c was back down to 6.0, exercising has paid off. Big surprise eh? Yeah, the hard part was finding a form of exercise I really enjoyed cause I've always been the "running is for when scary people chase you" kind of gal.
That being said, I discovered skating and I've become a tad obsessed. Now when I say skating I don't mean the Dorothy Hamil kind or even the skateboarding kind, which I do enjoy, I mean the put on some quad skates, a short skirt, a bad attitude, and knock your fellow roller girl over kind of skating. Yep, I joined my local roller derby and I think I'm in love. ;)
Skating on an almost daily basis however has done some weird things to my blood sugars. I've started having random lows in the range of 50-70 about once a week and I have to stop to eat after skating an hour or so to refuel or I definitely feel low. Power bars and Taco Bell have become my best friends.
My shoulder is still screwed up, it's not as painful but I still don't have full range of motion. I have an appointment with an orthopedic doc in a couple of weeks. Hopefully he'll have something new to suggest. If not I guess I'll have to try PT for the third time. Or I could just ignore it and hope it goes away. I'm sure the latter would not be approved by Dr. Transplant and the folks at UIC. ;)
and speaking of approval, I haven't mentioned the whole Roller Derby thing to them so, yeah, shhh! cause exercise, good, track rash from not so sanitary track floor, not so good.
In other news
October 11, I'll be in Chicago for "dinner and dialogue" with the folks at the Chicago Diabetes Project. I'm looking forward to it. In addition to being able to meet my fellow islet transplant recipients, and learning something new about the whole process, I'll also be able to talk to the research scientists that make it all possible. That, to me, is the best part cause how do you say thank you for something like that? For the most part they're behind the scenes and don't get to see the results of their efforts. Hopefully being there to say thank you in person will make things more tangible.
what I'd like to do is line them all up and hug the shit out of 'em.
woot!
yay scientists!
and I'm off
cause I'm late and there's a pair of skates and wood floor nearby that have my name on them....
In August my A1c was back down to 6.0, exercising has paid off. Big surprise eh? Yeah, the hard part was finding a form of exercise I really enjoyed cause I've always been the "running is for when scary people chase you" kind of gal.
That being said, I discovered skating and I've become a tad obsessed. Now when I say skating I don't mean the Dorothy Hamil kind or even the skateboarding kind, which I do enjoy, I mean the put on some quad skates, a short skirt, a bad attitude, and knock your fellow roller girl over kind of skating. Yep, I joined my local roller derby and I think I'm in love. ;)
Skating on an almost daily basis however has done some weird things to my blood sugars. I've started having random lows in the range of 50-70 about once a week and I have to stop to eat after skating an hour or so to refuel or I definitely feel low. Power bars and Taco Bell have become my best friends.
My shoulder is still screwed up, it's not as painful but I still don't have full range of motion. I have an appointment with an orthopedic doc in a couple of weeks. Hopefully he'll have something new to suggest. If not I guess I'll have to try PT for the third time. Or I could just ignore it and hope it goes away. I'm sure the latter would not be approved by Dr. Transplant and the folks at UIC. ;)
and speaking of approval, I haven't mentioned the whole Roller Derby thing to them so, yeah, shhh! cause exercise, good, track rash from not so sanitary track floor, not so good.
In other news
October 11, I'll be in Chicago for "dinner and dialogue" with the folks at the Chicago Diabetes Project. I'm looking forward to it. In addition to being able to meet my fellow islet transplant recipients, and learning something new about the whole process, I'll also be able to talk to the research scientists that make it all possible. That, to me, is the best part cause how do you say thank you for something like that? For the most part they're behind the scenes and don't get to see the results of their efforts. Hopefully being there to say thank you in person will make things more tangible.
what I'd like to do is line them all up and hug the shit out of 'em.
woot!
yay scientists!
and I'm off
cause I'm late and there's a pair of skates and wood floor nearby that have my name on them....
Monday, November 10, 2008
Ponderings on Family, Diabetes and of course, Research.
Ever feel like you're stuck in your head and you can't get out?
I've been thinking a lot about diabetes, the quest for holy grail, erm, diabetes research, and my family.
Family first right?
My parents both died six years ago. My mother was type 1 and died of complications of diabetes. Specifically, hypoglycemia in combination with cardio-vascular disease. My father, who was type 2, died of lung cancer, just 10 weeks after my mother and 8 weeks after his cancer diagnosis.
My oldest sister, Lisa, died this spring waiting for a liver transplant. She had diabetes also. Hers was a complication of cirrhosis. And now, my other sister is pregnant and has gestational diabetes. She's active, she's not overweight, she eats a healthy diet and yet still she got hit with it. Chances are it will go away when the baby is born, but the thing is, you never know. My sisters were adopted, so why did they end up in a family of diabetics? Who knows. The only person left is my brother and sometimes I wonder when he's going to call me and say "hey guess what? me too!" I hope it never happens, but still. I wonder.
It's as if we're cursed. Six people, five with four kinds of diabetes (three if you count cirrhosis induced diabetes as type 2). If you go back before my parents, there is no history of diabetes at all, on either side of the family. I know there are a number of factors influencing the increase in diabetes diagnoses in the past 100 years, including better diagnostic measures, increased average life span and the fact that people live longer with diabetes and are therefor breeding more of us into the gene pool. The media seems to forget these points when they talk about how fat and lazy our society has gotten. I'm not dismissing lifestyle, but lets not dismiss genetics and better living through medicine either.
So what to do? Not breed? Of course that's no answer. After all, it might prevent my children from getting diabetes but it doesn't help those of us already diagnosed. Live a better lifestyle? Good advice for everyone, it's easier said then done and, again, not much use in preventing diabetes if you've already been diagnosed, not to mention, it also doesn't prevent autoimmune diabetes. So we look to researchers for a cure, which sadly (and frustrating to everyone involved I'm sure) is not an easy endeavor. The body is a weird weird complicated thing to say the very least and one thing I've learned through out the whole transplant experience is that islets don't like to be messed with.
For each islet transplant there is usually more then one isolation done before an adequate supply of well functioning islets are obtained and able to be infused. Also, many patients need more then one infusion to be insulin free. UIC's program has managed to narrow that a bit and I was fortunate. I've only needed one infusion of islets to get off and stay off of insulin for two and a half years so far. I say so far because there are no guarantees. I understood that when I signed on, I still understand and accept it now. But what does the whole thing mean?
It means, at this point, if islet cell transplants were pushed forward into standard diabetes care and out of clinical trials that a large number of people would be put on a waiting list for one (or however many it takes before they get enough qood quality cells isolated that they can transplant) of very few available pancreases. And then, if the patient is able to get off of insulin with hopefully, one infusion, will their immune system still destroy those cells even with anti-rejection meds? Will the immuno-suppression meds be toxic to the cells because islets are that fragile? Will the immuno-suppression meds make the patient sick enough that quality of life isn't any better then before transplant? And then, will the patient be compliant and do their part in safeguarding themselves and their newly procured cells? Is a big undertaking by all involved.
So you see, there's a lot to work around when it comes to curing diabetes, be it through islet transplantation or other methods. No medication is with out side effects and no matter how you look at it messing with the immune system is going to have its pitfalls. If it were easy, it would have been done years ago, like back in the 80's when my doctors kept saying "there's going to be a cure in the next 5 to 10 years", and then said it again 5 years later. A lot of us with diabetes gave up holding our breath the second or third time we were told that. Funny though, I haven't heard it in a long time. well, not until I got my islets. Oddly enough, even though I think i understand the difficulty of it all. I think I believe once again in a cure.
For type 1's. But what are we doing about type 2? or LADA or any of the MODY's out there? We need more funding for research, durn it!
*sigh* see what I mean? These are the things that get stuck in my head and I'm in no way qualified to find answers. So they rumble around, I don't sleep, and I think.
Once again, I just need to get out of my head...
I've been thinking a lot about diabetes, the quest for holy grail, erm, diabetes research, and my family.
Family first right?
My parents both died six years ago. My mother was type 1 and died of complications of diabetes. Specifically, hypoglycemia in combination with cardio-vascular disease. My father, who was type 2, died of lung cancer, just 10 weeks after my mother and 8 weeks after his cancer diagnosis.
My oldest sister, Lisa, died this spring waiting for a liver transplant. She had diabetes also. Hers was a complication of cirrhosis. And now, my other sister is pregnant and has gestational diabetes. She's active, she's not overweight, she eats a healthy diet and yet still she got hit with it. Chances are it will go away when the baby is born, but the thing is, you never know. My sisters were adopted, so why did they end up in a family of diabetics? Who knows. The only person left is my brother and sometimes I wonder when he's going to call me and say "hey guess what? me too!" I hope it never happens, but still. I wonder.
It's as if we're cursed. Six people, five with four kinds of diabetes (three if you count cirrhosis induced diabetes as type 2). If you go back before my parents, there is no history of diabetes at all, on either side of the family. I know there are a number of factors influencing the increase in diabetes diagnoses in the past 100 years, including better diagnostic measures, increased average life span and the fact that people live longer with diabetes and are therefor breeding more of us into the gene pool. The media seems to forget these points when they talk about how fat and lazy our society has gotten. I'm not dismissing lifestyle, but lets not dismiss genetics and better living through medicine either.
So what to do? Not breed? Of course that's no answer. After all, it might prevent my children from getting diabetes but it doesn't help those of us already diagnosed. Live a better lifestyle? Good advice for everyone, it's easier said then done and, again, not much use in preventing diabetes if you've already been diagnosed, not to mention, it also doesn't prevent autoimmune diabetes. So we look to researchers for a cure, which sadly (and frustrating to everyone involved I'm sure) is not an easy endeavor. The body is a weird weird complicated thing to say the very least and one thing I've learned through out the whole transplant experience is that islets don't like to be messed with.
For each islet transplant there is usually more then one isolation done before an adequate supply of well functioning islets are obtained and able to be infused. Also, many patients need more then one infusion to be insulin free. UIC's program has managed to narrow that a bit and I was fortunate. I've only needed one infusion of islets to get off and stay off of insulin for two and a half years so far. I say so far because there are no guarantees. I understood that when I signed on, I still understand and accept it now. But what does the whole thing mean?
It means, at this point, if islet cell transplants were pushed forward into standard diabetes care and out of clinical trials that a large number of people would be put on a waiting list for one (or however many it takes before they get enough qood quality cells isolated that they can transplant) of very few available pancreases. And then, if the patient is able to get off of insulin with hopefully, one infusion, will their immune system still destroy those cells even with anti-rejection meds? Will the immuno-suppression meds be toxic to the cells because islets are that fragile? Will the immuno-suppression meds make the patient sick enough that quality of life isn't any better then before transplant? And then, will the patient be compliant and do their part in safeguarding themselves and their newly procured cells? Is a big undertaking by all involved.
So you see, there's a lot to work around when it comes to curing diabetes, be it through islet transplantation or other methods. No medication is with out side effects and no matter how you look at it messing with the immune system is going to have its pitfalls. If it were easy, it would have been done years ago, like back in the 80's when my doctors kept saying "there's going to be a cure in the next 5 to 10 years", and then said it again 5 years later. A lot of us with diabetes gave up holding our breath the second or third time we were told that. Funny though, I haven't heard it in a long time. well, not until I got my islets. Oddly enough, even though I think i understand the difficulty of it all. I think I believe once again in a cure.
For type 1's. But what are we doing about type 2? or LADA or any of the MODY's out there? We need more funding for research, durn it!
*sigh* see what I mean? These are the things that get stuck in my head and I'm in no way qualified to find answers. So they rumble around, I don't sleep, and I think.
Once again, I just need to get out of my head...
Thursday, September 4, 2008
Dr. Denise Faustman Interview
If you frequent some of the larger diabetes boards you've probably come across this already. If not, its interesting. watch.
Interview: Type 1 Diabetes Cure Trial from David Edelman on Vimeo.
Interview: Type 1 Diabetes Cure Trial from David Edelman on Vimeo.
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