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Difficult times with type 1 diabetes

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
D

Dunny

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi all,
I'M new to DIABETES UK and would like so share my story hopfuly to help others dealing with type 1 diabetes.
My daughter developed type 1 diabetes at the age of twelve, she is now twenty four.
Struggling to deal with type 1 in her teens she wasn't very well controlled, this has had serious consequences.
I don't want to scare anyone reading this, we have been told by various professionals throughout the country that she is very unlucky.
However these conditions can happen to anyone with type 1.
For three years now we have been fighting with various conditions my daughter has developed.
She has had three lots of laser treatment to stop bleeding behind the eyes.
She has gastrophreses which has taken a long time to get diagnosed, and spent months in hospital, she now has a gastro pacemaker which we had to fight for and get funding. Unfortunately the pacemaker keeps dropping voltage with no explanation why so does not work as well as we had hoped.
She has a feeding tube as nothing she eats or drinks when things are bad stay's down.
She also has last stage kidney failure and has to have dialises three times a week.
She is waiting for a kidney, pancreas transplant.
She has just been given the Flash glucose monitoring (FreeStyle Libre) to trial untill it becomes available on the NHS, This is a revalousion that all diabetics should be able to have it is amazing.
Sorry if my story offends anyone in any way.
 
Hello Dunny and welcome to the forum.
I'm so sorry to hear about the problems your daughter is having it must be very stressful for both of you.
Please, please don't ever think your story would or will offend anyone. Feel free to ask any questions you want or need to ask, there are so many knowledgeable people on the forum someone would without doubt be able to help.
Sending you and your daughter my best wishes.
 
Hello @Dunny , welcome to our friendly forum.
I am sorry to hear about all the complications your Daughter now has, you must be beside yourself with worry. I really hope your daughter doesn't have to wait too much longer for a transplant .
I agree with Pumper Sue , please don't feel your story will offend anyone, in fact it is far more likely to help others and hopefully help you a little too !!
 
Hello Dunny and welcome to the forum. Very sorry to hear of your problems, I wasn't offended in any way, this excellent forum is for sharing.
 
Hello and welcome @Dunny 🙂

I am so sorry to hear about the tough challenges your daughter is facing with complications and the worry you must be facing.

I hope the wait for a transplant does not go on too long and with that will come some better health and stability of her complications. She has a lot to cope with. Thank goodness she is able to use the Libre to help monitor her glucose and that it is helping her.

I was diagnosed aged 12 in 1978 and due to poor control through illness, a genetic risk for chronic complications and a sprinkling of bad luck I have been through the mill with serious complications at a young age. It can and does happen and we all need to be very aware of what can go wrong.This forum is for help and support and your story is all part of that. 🙂.

I wish you and your daughter well for the challenges ahead and hope she can look forward to a healthier future with more stable diabetes. Please do let us know how things are going.Good luck.🙂
 
Welcome to the forum, Dunny. So sorry to hear about your daughter's problems.
A timely reminder to everyone to carry an organ donor card AND discuss wishes to donate organs with family members, so that they won't over-ride potential donor's wishes.
 
Big thank you to everyone for replying to my story.
It's nice to know that there are people out there with life experience willing to help each other.🙂

It still amazes me that my daughter is under three different hospital's and the lack of knowledge about diabetes from the nurses right through to the consultants who don't deal with diabetes on a day to day bases It's shocking 😡
 
I agree with you, some don't even have a basic understanding.
 
Dunny said:
It still amazes me that my daughter is under three different hospital's and the lack of knowledge about diabetes from the nurses right through to the consultants who don't deal with diabetes on a day to day bases It's shocking 😡
Click to expand...
Yep I've come across it quite a bit over the years, so all I do now is say perhaps it would be a good idea to copy in my diabetes consultant and ask his advice :D It works wonders most of the time.
 
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