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type 1 neglect and outcome

S

Shell1981

Member
Messages
5
Type of diabetes
Type 1
Hi I am a 35 year old type 1 diabetic and have been since I was 3 years old....

My reason for writing this is because I have had such severe complications from being diabetic and not looking after myself when I was a teenager...

At the age of 35 I am partially sighted, I have heart failure and I have CKD ( chronic kidney disease)

I had a 4 x heart bypass in June 2015 and have now been diagnosed with kidney failure and I have dialysis 7 days a week 6 hours a night...

I am writing this as I never took notice of doctors when I was younger and because of that I am now suffering.

Just please make sure that you look after yourselves and do things by the book.

I wouldn't want anyone to have to have gone through what I have through my neglect of diabetes 15 years ago...
 
@Shell1981 it's amazing and moving that you can be thinking of others with everything you're going through. Thanks for your wise words. Really hope things improve for you in some way, thinking of you.
 
Thanks for sharing....

Can you describe the neglect a bit more...?

How long did it carry on for?

What BG levels did you see and how long would you stay high in a 24 hour period...?
 
Shell1981 said:
Hi I am a 35 year old type 1 diabetic and have been since I was 3 years old....

My reason for writing this is because I have had such severe complications from being diabetic and not looking after myself when I was a teenager...

At the age of 35 I am partially sighted, I have heart failure and I have CKD ( chronic kidney disease)

I had a 4 x heart bypass in June 2015 and have now been diagnosed with kidney failure and I have dialysis 7 days a week 6 hours a night...

I am writing this as I never took notice of doctors when I was younger and because of that I am now suffering.

Just please make sure that you look after yourselves and do things by the book.

I wouldn't want anyone to have to have gone through what I have through my neglect of diabetes 15 years ago...
Click to expand...

Shell send you all my love and hopes of at least some recovery from your kidney troubles... and all else.. <3
 
Hi guys,

Thank you for all your kind words,

In regards to the question about neglect... at school age I ate or drank what I wanted had no care at all, missed some of my injections on various days, started to smoke.... list goes on.

BG were up and down constantly... most of the time up... went up to 30 on occasions. No matter how much my parents done I just rebelled constantly and this went on for about 3-4 years. Even my Gp and diabetic consultant warned me as a teenager... but I never took notice.

I wish so so much I would have listened and if I could speak to people and tell them what has happened and to listen to what the doctors say and it's not scaremongering it's real and affects your life and everyone around you...

It's an awful feeling knowing that what you did as a stupid teenager has ruined the rest of my life from here on out.
 
Shell1981 said:
Hi I am a 35 year old type 1 diabetic and have been since I was 3 years old....

My reason for writing this is because I have had such severe complications from being diabetic and not looking after myself when I was a teenager...

At the age of 35 I am partially sighted, I have heart failure and I have CKD ( chronic kidney disease)

I had a 4 x heart bypass in June 2015 and have now been diagnosed with kidney failure and I have dialysis 7 days a week 6 hours a night...

I am writing this as I never took notice of doctors when I was younger and because of that I am now suffering.

Just please make sure that you look after yourselves and do things by the book.

I wouldn't want anyone to have to have gone through what I have through my neglect of diabetes 15 years ago...
Click to expand...

That's very unfortunate Shell 1981, complications have been one of my fears, like yourself I didn't have tight control of my Type 1. Being diagnosed at 4 and I'm 54 now my average HA1Cs would run in the 8s or high 7s. There have only been 2 instances where I was able to get it down in the 6 range (since keeping track about 20 years ago). After living with Type 1 for 50 years - I have no complications - I just had an ophthalmologist appointment yesterday where my doctor was telling me that he's convinced that genetics play a bigger role than tight control in regard to diabetes complications.

Now having said that I've been very athletic all my life - abnormally so - perhaps there's something to be said for that, I have no idea but all I know is I have done well physically (so far). The Jocelyn Diabetes Clinic in the USA have been doing a long term study of their patients who have been either complication free or have had mild complications. These are people who have lived with type 1 for 50 years or longer. The question is why? They're trying to find out and here again researchers suspect genetics is the key.

Regardless it's good common sense to keep within an acceptable BG range the best one can, but on the other hand, just because you have tight control all your life does not mean you will not experience complications or that those who have had poor control will have complications. Like other's I suspect some individuals are predisposed to complications regardless of the control. It's too bad that not more studies have been done on this.

I just hope you're able to overcome your complications and are able to enjoy your life. All the best!
 
Hi. Thanks for your brave feedback. It will help us try to convince other, younger, T1s that are finding things difficult that it is so important to keep that control as you can't wind the clock back. I hope you do have some useful years left despite the current serious problems.
 
Hi Shell,
I have just written my first ever post on here as I've only discovered the forum today.
Sorry to hear that you've had complications, but thank you for sharing your experience.
I am at the stage where I want to change my life as I am truly worried about the way I have ignored my Diabetes for 16 years.

I'm 25 with some retinopathy problems awaiting treatment but I am so so scared that I have caused so much damage to my body.
 
Hi @daisymj14

It's good that they have picked up on your eye problems and it's amazing what they can do these days.... all I would say is if you feel you have neglected your diabetes then go to the GP or diabetic nurses/doctors... get an MOT... get your bloods done for your kidneys, cholesterol , hb1c.. blood pressure everything!! Because of things are wrong they can help and things can be treated... just don't let it get to my level... there are medications and treatments that you can have and take that will help and also possibly control your diabetes more affective. If you ever want to talk please contact me because I know how your feeling believe you me. X
 
Hi @fletchweb....

I am also althletic and of slim build and have always been healthy... this dosent mean that internally things aren't happening....

I'm letting people know my experience as it wasn't until I had a heart attack and then a further 3 and a cardiac arrest all within 2 years that i then knew how ill I was!! Sometimes you don't know what's going on inside your body until it hits you....

I am simply wanting to ensure that people look after themselves. I can't preach because I didn't when I was younger but my point of writing what I did was to warn people of what could be in the future.
 
Shell1981 said:
Hi @fletchweb....

I am also althletic and of slim build and have always been healthy... this dosent mean that internally things aren't happening....

I'm letting people know my experience as it wasn't until I had a heart attack and then a further 3 and a cardiac arrest all within 2 years that i then knew how ill I was!! Sometimes you don't know what's going on inside your body until it hits you....

I am simply wanting to ensure that people look after themselves. I can't preach because I didn't when I was younger but my point of writing what I did was to warn people of what could be in the future.
Click to expand...

I appreciate where you're coming from Shell1981. My Family Physician runs a battery of tests on me every time I see him including EKGs because some of his other Type 1 patients are not doing so well even though their control is apparently better than my own. Even though I've been complication free for the past 50 years I still worry about it and it's a great source of anxiety for me. I hope there are treatments available that will give you a break from your complications.
 
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