Thursday, October 25, 2007

Screening



The kids are finally in bed.

I sit down heavily on the couch, pick up the remote, and hit "rewind."

And then listen to the videotape spin loudly back to the beginning.

Joseph can just watch the tape tomorrow.

It's probably fine.


But I can't get that description out of my head-- the one I read earlier on the PBS website that started out sounding good:

This Teen Connection will include teens and expert guests who will discuss juvenile diabetes, its treatment and work that is being done to find a cure for the disease, and develop new therapies for people suffering from it.

But then, in the second paragraph:

Life expectancy for patients with the disease is often 15 years shorter than others. For patients, complications including blindness, heart disease, strokes and kidney failure are ever-present possibilities.

That was enough.

Now, don't misunderstand-- Joseph is well aware of the complications of this disease.

But still, he just turned twelve this month.

And recently, before going to bed he told me through tears that he's afraid of dying:

"I just want to be happy, and not think about it-- but sometimes when I go to bed at night, I'm scared."

Ryan joins me on the couch as I hit "play" on the remote.

A pretty young woman with dark hair welcomes us to the program-- and then tells us that:

"Every three minutes someone in the United States dies because of complications caused by diabetes."

Man.

"Tonight we're going to be talking with three teens who are living with Type 1 diabetes, and a doctor who specializes in treating the disease-- and we'll be taking calls from viewers."

She introduces her guests, and begins discussing their diagnoses, the symptoms of Type 1, and the differences between Type 1 and
Type 2. Then, a prerecorded video walks us through a detailed description of Type 1 diabetes.

And then the calls start coming in:

"I had a reading of 550," says an elderly male voice, "and I wasn't admitted to the hospital . . . should I have been admitted?"

"I have a son," says the voice of a worried mother, "and we have a lot of health issues in our family-- a lot of Type 2. [Should] parents be concerned?"

"I am in my mid-40's," another female caller says, "and I find myself every now and then craving something sweet . . . but as soon as I have it, I have an overwhelming need to lay down and take a nap and go to sleep-- is that a sign of possible diabetes?"

(Despite some of these questions, I start to wonder if I made the right decision-- if I should have just let Joseph watch this in real time so he could have participated in the dialogue.)

"Caller, go ahead with your question," says the perky, dark-haired host.

"I just wanted to say I have a comment," responds a young woman's voice. "I've been a diabetic for 21 years. I was diagnosed at the age of seven and I... um... had complications with my eyes... and now I'm completely blind at the age of 28."

I swallow hard, and stare at the screen-- at the three young people shifting uncomfortably on their stools.

In each of their frozen expressions, I see my son.

"I just recently got married," the caller continues, "and I had a baby. Blood sugars are in great control now . . . but from seven on up through 17, I was not in the best control."

Like me, Ryan sits there watching-- not saying anything for a few moments.

Just listening to this woman's story.

Willing it not to be our son's.

"Now I... um... you know -- without my vision -- can't see my baby's face, can't see my husband."

In response, the panel discusses how important it is to stay in good control-- and the wonderful statistics for those who do.

Even so, I keep hearing that voice-- long after we turn off the TV.


16 comments:

Tom said...

Hey Sandra. While I have no idea what it is like to have a son with T1, I do know that you shouldn't worry about it too much. From what I've read, he knows what he's doing. You and your husband seem to have a good grip on what is going on, and it seems as though everything is in good control.

The girl that went blind admitted that she had 10 years of out-of-control sugars. Joseph's sugars were tackled in far less than 10 years. While complications are a possibility, Joseph shouldn't have much to worry about just yet.

I hope this helped ease your tensions a little bit. I hope you have a good day. :-)

Sandra Miller said...

Thanks, Tom.

You're right.

Though the scary thing is that some people will develop these complications even with excellent control.

Needless to say, you can drive yourself crazy thinking about that possibility.

In the meantime, I guess needed to write about this program not only because it left me feeling uneasy, but because I sometimes worry that I'm trying to shield Joseph a little too much from some of this stuff.

I wonder if I'm doing the right thing.

Kerri. said...

I've had diabetes for over 21 years. I'm 28 years old. I had A1C's as high as 11.4% when I was in college. I've made a complete mess of my diabetes management at times, but I've also had moments of steady control.

I'll be married next May, and hopefully someone's mother within the next few years.

I am fine. I have no idea what the future will bring - none of us do - but right now I am fine. And I'm happy.

Please let that sentence resonate for you just as loudly as the ones that scare you.

Always thinking of you guys.

Penny said...

Oh, Sandra, I don't know how you sat through the whole thing.

Some of the callers didn't seem to have the best questions, but it sounded like a good enough program.

I'm all for educating people about the difference between Type 1 and Type 2 and the struggles that those living with diabetes go through every day.

Even though it's difficult for us to watch maybe it will be something that will wake the public to how serious this disease really is.

And,that comment that Joseph made caused a big lump in my throat. No kid his age should be able to make such a statement.

Did he watch the program yet? I'd like to hear what he has to say when he does.

Joseph is a very smart kid, Sandra. You've done a wonderful job teaching him about this disease. I'm sure he'll draw from the program, not the doom and gloom, but instead the reality that if he really takes care of himself, he's going to be OK.

Nicole P said...

Sandra -

Man, is so hard for you. And I know there is nothing that I can say that eases the kind of sadness and unease this kind of stuff creates...

But I think Kerri is right - even with lapses in control, there is a distinct possiblity that Joseph will be as healthy as his non-diabetic counterparts. I hope that you can look at both of us for inspiration and reassurance - that you can find hope in the many other healthy, strong adults in this community who have lived with this thing for decades - with periods of lapsed management - and who are still healthy - even with some of its complications.

I do think Joseph knows what the risks are and how important is to watch everything closely - even with the many shields you've built to protect him. I also think that he will appreciate your efforts to shield him as he grows older - AND your efforts to give him the information he needs when he needs it. You let him be a kid - you take on much of the worry - and I guarantee that he'll appreciate that.

Sending you my thoughts across the ether miles...

N

Gianna said...

I know how Joseph feels on this one...I remembering being diagnosed at the age of 16 and staying up all night reading horror stories from people with all kinds of complications, and basically crying for days. I was terrified. I was also sure that no one would ever want to marry me and that I would never be able to have kids.

Sadly, that didn't stop me from pretty much ignoring my diabetes control throughout most of college. Happily though, I'm in excellent control now - and married, incidentally. I still get scared about it sometimes - my husband would be the first to attest to that, because he gets scared too. But I really feel that doing the best you can - and KNOWING that you're doing the best you can - takes a huge burden off, because at least you know you're doing the best you can with what you've got. And so far, I'm fine.

I remember, visiting colleges with my mother when I was 17, and getting really upset because we saw a blind man walking down the street, and I said something really stupid to my mother, like "what's the point of me even applying to college? I'm just going to end up like him in 20 years anyway!" She was understandably angry and frustrated by my comments...and I think the lesson I took away from that is that you can't live your life thinking that you're never going to be able to do X or Y - you just have to try to do it anyway (for the most part). Joseph sounds like a smart kid - a really smart kid. As he gets older, I can assure you that it won't always be smooth sailing, and that he'll be frustrated and scared. But I also don't think it's likely to keep him from realizing the things he wants to do...

Kelsey said...

I had to echo Kerri and Nicole's sentiment. I had terrible A1c results during my teens... I seem to remember even being around 12% a few times. Truly, my control was fairly poor for many years.

Today, after 14 years of diabetes, I'm completely complication free and pregnant with a healthy baby. Those years of poor control are a distant memory.

You are taking really great care of your son, so he's got a wonderful chance at not getting complications for many decades.

I'd tell you not to worry, but, as a soon to be mom, I'm starting to understand that worrying comes with the territory :)

Bernard said...

Diabetes is such a game of odds. And you can improve those by staying on top of it and being determined to control it so it doesn't control you (in later life).

Sandra I think you're doing a great job. After that what happens is in God's hands. I think that Joseph will do just fine.

Chrissie in Belgium said...

Sandra diabetes does not have to destroy us! They should ssay for god/s sake that some of of us do just fine! I have had diabetes for 45 years - I am doing just fine! Look, all we can do is get ourselves educated, keep our selves educated and try our best! And let me tell you Sandra I have had terrible HbA1c in the past. Before I had my pump, I tried and tried and tried and failed. IF I had totally given up, yes perhaps I would have been in worse shape. And sometimes I did just that, throw in the towel completely! Our bodies are amazingly resilient! Don't think I am doing fine b/c I was perfect all my life. Forget it, I haven't been! Cheer up sweetie. ISO understand it is hard. I think it is MUCH harder for you than for Joseph! Get him educated. Make sure he knows how to fight for himself. Then you know you have done all that you can. If you do that, you have started him off on the right road. Doing this isn't easy. Give yourself credit for doing a magnificent job.

Kendra said...

Oh man. Those callers sound like the worst horror stories that could possibly be - the ones that people without diabetes always bring up when they hear that I have it.

The truth is though, those stories are so far my experience with this disease that I can't even connect to them. I can't even get scared! I have had this disease since '02, and my A1Cs have ranged from 11.8 (diagnosis) to 6.1 (a little while back). I know the only way I can escape complications from diabetes is by not having diabetes, but I really do not live my day to day life in fear of my future.

I think my future is going to be great, D or no D. I'm happily married, starting a family, and certainly not spending much time wringing my hands over all of the bad things that could happen to me. It'd be easy to do, don't get me wrong! It's important to be aware the scarier possibilities of this disease, but I also don't feel that you or Joseph should focus on them as an inevitability.

Education, perseverance, and resiliency are what diabetes is all about. We can't take a break from it, but we don't have to live in fear. Eat, drink, and be merry. [And take your insulin and test your blood sugar. ;)]

Scott K. Johnson said...

I too echo what the others have said. We can do our best, and after that it is in God's hands.

The support structure that you and your family have built for Joseph will serve him for the rest of his life.

When he goes through a rebellion (we all did, and he will too), do not freak out about it. Because of the support, education, and just pure LOVE you have shown for him, it will not be as bad or as long as many of us out there.

You have done a GREAT job so far, and I have nothing but confidence in you as you transition the management from your hands to his.

Have faith in Joseph that he will make good decisions. I do.

As mushy as it might sound, I love you guys like family, even though we've not met (yet!). We're all here for you. :-)

Jeff said...

Hi Sandra.

Many of these types of programs have to frighten viewers in order to succeed. They rely on putting all of the dour prospects right in our faces, right away, to yank at viewers' emotions.

If they started out by saying, for instance, that in 2007, insulin users have cutting edge technology to administer a wide range of insulins, hi-tech methods of measuring their blood sugar, and a boatload of options for a proper, healthy diet, and that diabetics who avail themselves of these tools generally live long, productive lives, fewer people would stay tuned.

Viewers who are not D-savy might think, "So what's the problem?" and surf over to Emeril.

I've been T1 for 25+ years, with no complications. I eat well, exercise, test up to ten times daily, tweak my basals from time to time, and stay up to date on diabetes related issues.

Most importantly, I consciously choose to expend more positive energy enjoying life, rather than use up valuable time fretting over the alternative.

Have a great weekend. :^)

Major Bedhead said...

Here's my view on it, as the mother of someone with diabetes. I do the best I can with O and her diabetes. I stay on top of her numbers, I log, I keep up with the latest treatment protocols. I make sure she tests at least 8 times a day. I am doing everything possible, short of a pancreatic transplant, to make sure she stays healthy.

I know that complications could arise anyway, in spite of all our work. But I look at it this way: I can train my children to look left and right before crossing the road. I can instill in them the "Don't run into the street" mantra. And yet, they could be standing there, doing what they're supposed to do, and still get hit by a car.

I can't prevent everything. All I can do is give them every possible tool and every ounce of support to make sure they get thru life unscathed. Once I've done that, it's out of my hands. There are things in life that just happen, in spite of all we do to prevent them. I can't let myself worry about those things or I will go crazy.

Anonymous said...

Hi, Sandra: Maybe this will cheer you up. It did me! I don't believe that Joseph will be using insulin as a therapy in five year's time. Here is only one reason why.

Further Positive Preliminary Data on DiabeCell®

Monday, 22 October 2007, 3:16 pm
Press Release: Living Cell Technologies

Further Positive Preliminary Data on DiabeCell® Phase I/IIa Trial

22 October 2007, Auckland, New Zealand and Melbourne, Australia: Living Cell Technologies Ltd (ASX:LCT, OTC: LVCLY) is releasing this update on the excellent initial responses observed in its DiabeCell® trial in Russia to ensure that the information is available to all shareholders, following the preliminary announcement on October 9th.

Medical Director of LCT, Professor Bob Elliott, advises that two patients have been implanted with their first dose of DiabeCell® and are due for a second dose 6 months later. DiabeCell® is administered to patients without the need for immunosuppressant drugs.

The first patient was injected with his first dose in June 2007 without adverse effects. Control of blood glucose levels has been maintained while his daily insulin requirement was gradually reduced by about 40% over the past 4 months.

The second recipient was implanted with her first dose of DiabeCell® in September 2007 without adverse effects and control of blood glucose has been maintained with progressive reduction of daily insulin requirements. At one month following the implant, the patient has been weaned off insulin altogether.

"These early stage results have exceeded our expectations, with one patient no longer dependant on insulin therapy following the smallest dose of DiabeCell®," said Professor Bob Elliot, Medical Director of LCT.

LCT CEO, Dr Paul Tan says, "This outstanding result increases the prospects of DiabeCell® as an effective commercial product for diabetes."

The object of the phase I/IIa trial in Russia is to determine whether a small dose of live micro-encapsulated pig islets injected into the abdominal cavity of type I diabetic patients is safe and can produce enough insulin to have a measurable effect on improving the control of blood glucose levels.

In the trial at the Sklifasovsky Institute in Moscow, each of 6 patients is to receive two transplants of the smallest dose (5,000 islet equivalents (IEQ's) which is equivalent to one third of the maximum dose (15,000 IEQ's) planned for testing in the proposed New Zealand study.

However, this is very preliminary data and LCT management looks forward to assessing these results in the context of full clinical trial data.

About Living Cell Technologies: www.lctglobal.com

Living Cell is developing live cell therapy products to treat life threatening human diseases. The company owns a biocertified pig herd that it uses as a source of cells for treating diabetes and neurological disorders. For patients with type 1 diabetes, the company transplants microencapsulated islet cells so that near-normal blood glucose levels may be achieved without the need for administration of insulin or at significantly reduced levels. The company entered clinical trials for its diabetes product in 2007.

Further background information on the trial is available at http://www.lctglobal.com/news/167.php

http://www.lctglobal.com/news/149.php

Keep on hanging on!!!!

Anonymous said...

Hi, again: Re my post above, I would like to modify my projections to eight to ten years, LOL. But there have been many breakthroughs on different fronts. Very hopeful for the future. As for now, perhaps we must focus on getting insurance companies to pay for continuous monitors for children and pressure the pump companies to make those monitors more comfortable to wear.

Sandra Miller said...

Kerri-

Resonates loud and clear.

Thanks. :-)

Penny-

Honestly, the program was not all that good-- and because it wasn't, Ryan and I decided not to show it to Joseph.

You see, although it was geared toward teens, not a single teen called in-- just adults with Type 2 (or those with fears/questions about Type 2) and a couple of parents of kids with Type 1.

Given that -- we decided the benefits of watching didn't outweigh the potential fear the program's opening and callers might instill.

Nicole-

If I didn't have you all to look to for inspiration, I'd be in pretty rough shape by now.

As always, thanks for the words of encouragement.

Gianna-

Thanks for sharing your experience. Being diagnosed as an older teen -- knowing you'd soon be going away to college, on your own -- must have made it all the more frightening for you.

And yet you worked through that fear.

Makes me feel all the more hopeful about my son's ability to do the same.

Kelsey-

Thanks for adding your voice.

I'm looking forward to reading about your own adventures in motherhood. :-)

Bernard-

From your keyboard to God's ears...

Chrissie & Kendra-

You ladies rock.

Thanks. :-)

Okay, Scott-

Your comment actually brought tears.

Not mushy at all-- just very, very sweet.

Jeff-

Thanks for chiming in.

And after reading all of these comments, I did indeed have a great weekend. :-)

Julia-

I'm with you on this-- we can only do our best.

And hope that it's enough.

Though every once in a while (as it did the other night) my ability to maintain this stance gets rocked.

Anon-

Thanks-- I'll check out that website.