Due to recent happenings in the Pit, I thought an “Ask the Diabetic” thread would be a timely thing. I’m willing to answer any question I can, from what it’s like to pee on stick to the challenges of managing diabetes in a college environment. You can even ask me how it’s impacted my life beyond medical issues. Nothing is out of bounds; I revel in TMI.
Little info about me and my diabetes: I’ve been a Type I diabetic since the fall of 1988. I had just turned four. It’ll be 17 years in October-ish. There’s no history of diabetes in my family at all; I’m a freak. I’ve run the gamut from tight control to crazy, puberty-fueled blood sugar confusion, surprisingly unrelated to my enormous sweet tooth.
Go ahead. Ask any question you like. I’d prefer they were relevant to diabetes, but can ask me my shoe size or what my major is if you have the burning desire. I come bearing anecdotes, so if worst comes to worst, I’ll just start rambling.
Hopefully some other diabetics will stumble along and offer some contrasting experiences. I am, after all, only one girl and every diabetic is different.
Are they working on a doohickey that constantly tastes your blood and works with the pump to deliver on-bio-demand insulin, or is there a good reason for not pursuing that? (My sister has the pump but it either delivers according to timed program or her overrides, and she still has to stab her finger and bleed on the strip and stick it in the reader…yeah, I’m impressed at how far the technology has come, just asking).
Is diabetes correlated with the constellation of auto-immune diseases and suspected auto-immune diseases (rheumatoid arthritis, multiple sclerosis, lupus, hashimoto’s thyroid disease, scleroderma, etc.)? Do you think the folks who think all these ailments are different manifestations of the same general thing are onto something, or is that just trendy medical bullshit?
Are there (still) victim-blaming attitudes towards diabetics that you run into, e.g., that you brought it upon yourself by eating too many sweets until you wore out your pancreas, or is that pretty much ancient history?
Would a successful pancreas transplant eliminate diabetes? Has one ever been done? If not, how close are we?
I’m sorry you have to live with diabetes, but the happy thing is, you’re living with it, even though you’ve had it since childhood. I hope your doctors are excellent, because they don’t always find the reason for things, because they can’t be arsed to look.
If anyone reading this has adult-onset diabetes: Have you ever asked your doctor to look carefully to find any trace of cancer in your pancreas? The reason why I ask is because at 55, my mother became diabetic. Her doctor did no further investigation than to treat her as a diabetic. If he’d looked further, he would have found a tumor on her pancreas. By the time it was discovered, it had spread to her liver, and inside of a year she was dead, but not without a lot of horrendous illness first. If diabetes happens to you, please get screened for cancer. You might have a better chance of living longer if they find out why you are all-of-a-sudden diabetic.
I have to confess to being largely ignorant of recent trends in diabetes research. After being told for years that “a cure is just a year away! Rah, team, rah!” we sort of gave up hope and just dealt with what was available to us. Right now I have sort of a “maybe in my (as yet nonexistent) children’s generation there will be a real cure and nobody will have to go through what I have” sort of attitude. Immensely frustrating – I empathise with the folks looking for a cure for any other serious illness. Perhaps a DoperDoc will come along and be informative for us.
That said, while I don’t have a pump, I’d love to have one. Right now I’m taking Humalog (insulin aspart) and Lantus (insulin glargine). I take one big shot at bedtime of insulin glargine; it’s slow-acting and helps regulate blood sugars through the day. The amount depends on how active I’ll be the next day, how much stress I’m under, and what my sugars have been like. At meals, I take smaller doses of Humalog depending on how many carbs I’ve eaten; this begins acting within fifteen minutes and prevents enormous spikes in blood sugar after eating. (I’m simplifying this a lot. It’s a lot more complicated than this and there are much bigger words to describe it.)
This theory has been floating around for a while, hasn’t it? I seem to remember something similar to it in my “It’s Time to Learn about Diabetes!” comic book circa 1989. I’m inclined to believe it, since diabetes isn’t genetic in all circumstances. There’s no history of it in my family at all and all of my siblings are horse-healthy. Then there’re the families where all the children are diabetics and the parents are too. (Interesting history tidbit: There are some who believe Henry Tudor and his siblings suffered from untreated diabetes and that’s why most of them died young or crazy.) The causes of diabetes are still largely a mystery, as far as I know.
Heck yes. It never ceases to piss me off when somebody asks baldly, “So, are you diabetic because you’re fat?” While I’ll admit to being overweight, my weight is nowhere near the level needed to prompt type II diabetes. Taking after my father and being fairly barrel shaped for a girl doesn’t help either. When you add that to the fact that until I hit puberty, I was as skinny as stick and then Ma Nature decided I needed to go all Venus of Willendorf, I have a hard time biting my tongue. I would say that the increase in the number of people who are type II diabetics/insulin resilient because of their weight and eating habits has actually increased this attitude. There’re a lot of people out there who still deal in 1950s knowledge about diabetes. Heck, even 1750s attitudes when you look at doom and gloom religious types. (“Your SIN is your ILLNESS! Repent and be CURED!”)
I know that there were recent experiments with transplanting Islets of Langerhans (the cells that produce insulin in the pancreas) and they met with some success, though I’m unclear on whether or not it was lasting success. This was within the past ten years. Like most experimental technology, it feels so close you can taste it, but this doesn’t necessarily mean a cure is imminent.
Sorry to the folks who hate quoting a post like this – I’ve no idea what’s going to happen between the time I start and the time I finish.
Thanks, fishbicycle. It’s been a wild ride so far. The only thing I’m prevented from doing is joining the military and that’s fine by me.
The doctors I had growing up were excellent – UW-Madison Children’s Hospital completely rock when it comes to endocrinology. I’ve since switched to an adult doctor since I’m no longer a child and that’s working out pretty well.
I am not a diabetic, but the research group where I work has actually done a project concerning this topic, so I’ll fill you in on what I know, in summary.
Whole pancreas transplants HAVE been done, and when succesful they do cure diabetes. However, like all organ transplants they carry risks - surgical risks, long term risks from immune suppression, and so on. Also, the supply is limited. Most typically, a pancreas transplant, when done, is done along with a kidney transplants (although it’s not a requirement).
Then someone got the idea of transplanting just the islet cells. There were two appealing ideas here. One, you didn’t have to open up the patient - you can transfuse isolated islet cells into the body much like blood or bone marrow. This is done into a major blood vessel of the liver, and the cells are supposed to take up residence in the liver and start doing their thing. Two - there was hope that one pancreas might have enough cells for more than one person, thereby increasing the number of people that could be helped.
Until a few years ago, the success was minimal. Partly, this is because islet cells are fragile, so the act of isolating them frequently destroyed them. It’s also partly because many of the immune-suppressing drugs are toxic to islet cells and gradually destroy them. Then a Dr. Shapiro of Edmonton developed what is now the “Edmonton protocol”, a means of isolating the islet cells without damaging them much, and a regimine of anti-rejection drugs that weren’t excessivly toxic to islet cells. He (and his patients) has been enjoying significant success but the technique is only 2-3 years old so long-term results (5 and 10 year) aren’t yet in. Though it looks promising.
Assuming this is as good as it looks, we still have two problems: One, the need to train other teams to perform this technique. Dr. Shapiro is already working on this. Two, there is still not enough available donated organs to help every diabetic who could benefit, even if a pancreas can supply cells for more than one person and even if organ donation was increased. So the suggestion is to help those who are worst off first.
I don’t use a pump. I do use injected insulin. I’m hoping that we’ll get an inhaled insulin delivery system, or an insulin skin patch. I HATE injecting myself.
A few years ago, I read about a thingamabob that could be worn like a wrist watch, that could constantly monitor blood sugar. I have no idea as to whether it could be hooked up to a pump, though. I DO remember that the price was over $3K, US, and that I could have bought a couple of fairly decent desktop computers for that price. So probably the technology is present, but the price is out of range for most of us.
I’ve encountered people who blame me for my disease, but thankfully few people will do it to my face. Most of my friends just accept my diabetes as part of me, and are willing to look away when I say that I need to inject myself. I don’t do testing in public, even though my doctor wishes that I would test more often.
I don’t pee on a stick. I only test my blood. I have been told that if I’m spilling sugar into my urine, my blood sugar is way too high anyway, and I need to see a doctor, NOW.
I’ve had a few instances of really low blood sugar, to the point where I’ve almost fainted. This is why I do NOT inject myself unless I have my food right in front of me…I’ve had instances where my food was delayed, and I was going into insulin shock. Not fun, not fun at all.
I’m currently a non-insulin dependent diabetic, and I manage via a combination of control of what I eat and when, and oral hypoglycemic agents. I was diagnosed about 10 years ago now, and it looks like they caught it as my pancreas started packing up (we have a history of both type I and type II in my family), as the insulin levels my body produces naturally have been dropping for some time now.
I still get really low blood sugars every now and then, mainly when I work for long periods of time without a proper break; I’m not sure quite why this happens to be honest, my doctor’s explanation is that my glucose regulating system is completely messed up.
When I was first diagnosed, my parents put the blame squarely on my shoulders – that it was because I was fat (untrue, I’m slightly overweight but not by any means obese), and inactive, again untrue, and decided to try “folk” remedies to “cure” me, needless to say, they didn’t work. However, now, my A1Cs are borderline-normal, so i can probably stave off my pancreas totally dying for a few more years.
My wife has been a type 1 diabetic for 25 years. We are constantly amazed by how ignorant most people are about the number 3 disease in the country.
We always hear the typical remarks:
“Oh you’re diabetic? You don’t look fat!”
and of course,
“Did you eat a lot of sugar as a kid?”
She’s always tempted to say “Yes, one day when I was 11 I ate 100 Snickers in one sitting, and my body is still processing the sugar, 25 years later.”
I actually make a living doing Islet Cell Transplants. I could go into great detail on how the transplants are done, but basically I can offer up these points:
Islet cell transplants are not cures, they are treatments. So far the results have been mixed. The long term studies (five year) have shown only 14% insulin independence. However, the transplants do seem to lessen in impact of the diabetes, by decreasing the incidence of hypoglycemic unawareness, allowing better insulin control.
Whole organ pancreas transplants have been done for decades. Usually the whole organ transplants are done in conjunction with kidney transplants. The problem with whole organ is the lifetime need for immunosupression, which is why most doctors recommend them alone.
Speaking of immunosupression; this is the biggest problem with Islet Cell Transplants. The St Louis group is having a terrible time non-compliance. Patients are complaining that the cure (with the immunosupression) is as bad as the disease, and they rather have the devil they know.
As of now there are two promising developments: Stem cell, and bioreactor. If the cells can be grown in culture, the extreme shortage we are faced with now can be alleviated, as well as the need for immunosupression. Cross your fingers!
If anyone ever wants to read the back of the box on this movie, they’ll notice that whoever the brilliant person in charge of research was dropped the ball on this one. They say that the daughter needs to get her insulin as soon as possible to to treat her low blood sugar. WTF?!? Maybe if you want the little girl to die. Oh, idiots. That provoked a good hour of family conversation. At least things were a little more accurate in the movie itself.
My_Dog_Klaus, your wife should so do that. And then she should ask them if they’d like to go out for ice cream, her treat. Then they could be diabetic too! <Freaks>One of us, one of us!</Freaks>
Our cells come from cadaveric donors. However, Japan just did its first familial living donor (mother to daughter) and UAB just did its first autograft (self-transplant) from a patient with a calcified pancreas, who was not a diabetic, but had terrible pain from pancreatitis.
The problem with living donors is that humans only have one pancreas. Thus you can’t donate your entire pancreas, or you will become Type 1 yourself selves. Moreover, since most Type 1 diabetics don’t have enough islets in their pancreas there would be no point of an autograft . So in a living donor, only part of the pancreas is taken.
The problem with living donors is that you are trading a permanent problem for a temporary solution. Due to this, most facilities are not considering living donors except in the case of pancreatitis.
Ooh! Thanks for starting this thread! I’m a type-1 diabetic too. Diagnosed in 1996. I was 16 around the time. I’m still adjusting.
(A few years later, my younger sister was diagnosed with type-1 diabetes, and a year or so after that my mother was diagnosed with type-2 diabetes. This leaves my father and my brother as the only non-diabetics: I bet they feel left out.)
It’s kind of freaky here in Pakistan. Any time I mention I’m diabetic, half the people in the room confess to having diabetes. (Then we have diabetes-related discussions, which is fun because the non-diabetics feel left out. Hahahahahaha!) And that’s not all: inevitably, once I mention I’m diabetic, people start rattling off lists of friends and relatves who are also diabetic.
Oh, and everyone has tips for how I should handle my diabetes. Everything from sane medical advice to herbals to reading certain verses of the Qur’an and blowing it on water and drinking the water.
I also use Humalog and Lantus. Excellent regimen. I don’t test as often as I should. I go through phases of taking very good care to ignoring testing to somewhere in between. Right now I’m somewhere in between.
One thing, possibly TMI, I would like to share: the two most wonderful feelings in the whole entire world are so, for me, because of my diabetes and specifically because of hyperglycemia (high blood sugar levels). The feeling is a hundred times better than anything in the world. It can’t compare to a good meal, a good book, or even sex. These are the feelings of utter and unparalleled relief, satisfaction, release, comfort, joy, and exhiliration when:
a. I drink nice, cool water after being thirsty for some time because of hyperglycemia, and
b. when I urinate after holding in the accumulating urine because of hyperglycemia.
WRS - off to drink water! Woohoo! (Hmmmm. Maybe I should test my BS level too.)
Though 17 is quite young to have given much thought to the prospect of having children, what are your opinions on this (rather blunt & pessimistic) OP on another board:
I’m actually 20; I was four when I was diagnosed. Children (should I be fortunate enough to have them) aren’t too far into my future, I hope. I don’t want my children to be graduating from high school when I’m in my 60s. But first things first: a husband must be found. I’ll worry about babies more when I have one of those.
Anyway, I’ve thought about this and I decided that I still want to have children. There’s no history of Type I diabetes in my family, at all. Okay, some folks who are related by marriage, but that doesn’t count at all. The biggest risk in having children will be to my own health and then the health of my child as I’m carrying it. Not something to be undertaken lightly. An unplanned pregnancy would be more serious for me than for a non-diabetic girl, really.
As for people who decide not to have children because of the risk of passing on type I diabetes, I’m cool with that. I mean, it’s their body to do with as they like and they can always adopt if they want kids. Plenty of kids looking for a home out there, y’know?
