FUDiabetes

Over half his life

#1

So I was reflecting on the “contribution” years post and saw when we posted that we could only contribute 1-year last year and thinking about another year already being behind us and moving onto year 3 and the thought entered my mind that just made me feel…bad (or sad, or a combination of the two) for Liam.

He’s been living with diabetes now for over half his life. He was diagnosed Feb 29, 2016 at just over 2 years of age. Here we are going into May 2018 and he’s going on 5 years old already.

It’s just crazy how time flies.

BTW, after all this time, he STILL screams bloody murder for any shots he has to get. Not sure if you other parents with T1 kids are still experiencing that joy (sarcasm) or not but the days of him screaming so much will certainly not be missed. But…I get it. It doesn’t upset me…it just saddens me. It always breaks my heart. Every 3 days when I have to change the POD and every 14 days when I have to change the CGM.

Just crazy to think he’s had this now for “over half his life”…and he’s only 4. My goal for him is to grow into a strong @Richard157 and become a recipient of the 75-year Lilly Diabetes Journey Award. That would be a lifetime achievement in and of itself.

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#2

@ClaudnDaye, I hope Liam will learn to accept the needles more readily, and that he will get that 75 year medal.
I learned today that my friend in Canada is celebrating her 10’th year of no insulin after a pancreas and kidney transplant. She was type 1 for many years before the transplants. I think that is as close to a cure as we will see for a very long time. My friend had major problems, and a transplant was desperately needed.
We can have wonderful lives without transplants. If Liam takes good care of himself in the future, he can get that medal!!

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#3

Is she on life-time regimen of immune suppression drugs? I know for most people who have transplants, they’re on drugs to stop the bodies rejection of the new organ. is this the case? Did she have to take drugs and does she still, to stop the immune system from attacking the kidney/pancreas? Or is there a time where those are no longer needed and the body just stops attacking those organs?

This is the second story I’ve read here lately that just blows my mind about these transplants “curing” diabetes. I know it’s not an optimal solution of course…no one wants to have to undergo these very intense and potentially life threatening surgeries unless they absolutely have too, but to read stories of the immune system no longer “attacking” the new pancreas just amazes me.

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#4

@Richard157
I do absolutely consider a pancreas transplant to be a cure for T1 just as a bone marrow transplant is a cure for Leukemia.

Unfortunately transplants come with a whole host of issues which (more often than not) puts something like T1 in a whole new light. That is assuming the patient even makes the five year survival rate which realistically is not great. A transplant trades one set of issues for a different set of issues. As a cure by itself - well - if you personally know people who have gone through a transplant then it is simply nothing you would ever consider as a realistic option.

However as @Richard157 points out, when this is done for other major problems (where there really is no alternative) and you will be dealing with the transplant issues anyway then picking up the cure on the T1 is more like a side benefit.

@Richard157 - Hoping the best for your friend. Each transplant is individual. Best of wishes and thoughts!!!

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#5

This is something I’ve been pondering lately too – Samson too has now spent more than half his life with this disease, and will likely not remember the carefree time before his diagnosis at all.

He hates finger sticks now more than before, but he’s so brave about site and sensor changes. HE’s such a great little boy.

And like you, my goal is for him to win the 75 (or 100!) year diabetes journey award.

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#6

I don’t know if she is taking those drugs now, but she did take them after surgery.

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#7

Does the 100 year award even EXIST? I don’t see an image of it on the Lilly award site at all. If it doesn’t, it should! After @Richard157 gets his 75 year (2 more years??) award, just a short 25 years later, he’ll be looking for that 100 year award!

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#8

Also, @TiaG, we’ll definitely be seeing each other at these award ceremonies in the future since our sons were diagnosed during the same year! Just think…before they’re even teenagers, they’ll be receiving their 10 year awards! Can’t wait to see you and Samson there!

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#9

what an amazing thought! That never occurred to me.

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#10

There is no 100 year medal, but I’m sure that there would be one if any T1D did live 100 years after diagnosis.
I would be 106 if I received a 100 year medal. That is not likely, but I do daydream about it. :smiley:

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#11

We are counting on you, @Richard157, to pave the way for us. Make the 100-year medal a reality for our sons! :smiley:

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#12

The ultimate challenge!!! :crazy_face:

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#13

I too remember the care free times before diagnosis 47 years ago. It is like two totally different lives. I’m just sorry that Samson couldn’t have experienced more of the non-diabetic life.

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#14

At my upcoming diaversary later this year (27 years with diabetes) I’ll have lived 3/4 of my life with diabetes and only 1/4 without. That really is a sobering thought.

This is also my goal for myself. And 100 years, if I live to be 109 or 110 (you never know, 50-75 years from now that may be the average life span!). :slight_smile:

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#15

@ClaudnDaye, I was 8 yrs old when I was diagnosed and my parents had to sit on me and hold me down every time I had to get a shot (which was every day at that time). But I eventually got over it and Liam will too. I am sorry that you have to go through that, but I am so grateful to my parents that they did what they had to do to keep me healthy.

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#16

You can tell Liam that he is much smarter than me. I didn’t get to the halfway point until I was 10 years old. :grinning:

I think there are a lot of advantages to getting it young. I can do a lot more now because I learned how to deal with it. I didn’t have to break any bad habits. I never “want” for dessert or birthday cakes or treats that come up in a social setting. Sometimes I can have it, but many times I pass it up because the timing isn’t right. It’s just very easy because I grew up with that perspective - just wait for the right time. That sort of stuff seems to be an advantage.

Just like great piano players don’t wait until they are older, they start very young, I know Liam will be the greatest at it one day.

And the measure of greatness for him will be when he thinks it is no big deal. It will always be a big deal to his parents (it still is to my mom), but to him it will be nothing.

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#17

Well, he ALWAYS “WANTS” for these things. :stuck_out_tongue: And guess what…we don’t deprive him of it. Your next part is the key for us…

He always has it…it just maybe won’t be “right now”…we’ll wait for BG’s to be right, but then he’ll partake. That goes for everything, Halloween candies, birthday cakes, pizza, just whatever…there is no such thing as an off-limits food for Liam. Our job is to figure out the “right insulin mix” to make everything possible for him.

Then, when he’s older…hand him over those formulas that we figured out for him to save him some time and trouble.

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#18

I never felt deprived of it either. It was just a matter of learning patience. Because of that I can pass it up without a problem and wait. I think that’s a useful thing. It’s liberating to feel like food has no power over you.

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#19

I feel the same way, and was also at the “half” of my life part at age 10. Now it’s over 90%.

I ate the same as my whole family, we rarely had treats except holidays and special occasions. Mom cooked old fashioned homemade meals, and I took one injection of lente every morning. (Days of Father knows Best, and Leave it to Beaver). So many things have changed and I can see how it is much more challenging today.

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#20

Do you think it is more challenging for you personally? Or for people in general?

I think it is much easier now. The combination of things learned back then combined with new tools and newer insulins.

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