how do you cope

[Helen17]

I have a 27 year old daughter who has been an insulin dependant diabetic since the age of five but since march this year our world has been turned upside down with all the diabetic related illnesses she has Retnaopathy,Renial Failure,dumping,something to do with the nerve endings that I can remember the medical term for she has had to have two blood transfusions with in three months they say this is due to the renial failure causing the heamaglobin count going two low they have told us that she will be going on dialysis with in 18 months but it could be sooner and she will need a transplant have been bombarded with all this in three months has been quite tough for all of us now they tell us that none of her siblings or us as her parents will be able to be tested as a match for transplant because she will have to have a double transplant I dont know what else to do now as the doctors keep avoiding all the questions we are asking saying we will deal with that nearer the time please can someone advise me where to go next  

[louise65]

hi helen, im in scotland too, have just got back from a long time overseas, my daughter barely gets a week at home before shes in with dka and those blood sugars sound very familiar to me unfortunatly. my d had a spell of about 6 months on the pump but as she is also brittle it helped but not as much as we had hoped, she came off, couldnt cope with being attached to the pump 24hrs a day. she is thin, but on very big doses of insulin, has been up to 3 units per kg at times. it is so soul destroying when nothing seems to work, some people with type 1 just seem to have far more complex things going on with thier bods and immune systems than others. it seems both of our daughters have been unlucky in this respect. im glad you have a new doctor whom you have more faith in, that will help.take care, stay in touch, louise

[Helen17]

Hi Lulu

They have never ben able to control her sugar levels here in scotland they call it being very brittle I dont know how you work it out in America but here normal is between 4 & 7 but she has always been between 28 and 36 and thats way too high but they could get it down even with ajusting her insulin after years of begging them for the insulin pump they are now saying that she would be better with it she has a new doctor who is disgusted at the way her treatment has been handled over the years

[louise65]

hi helen, i just wanted to say how sorry i am that your daughter is facing all these medical issues. i fear my daughter will be the same, she manipulates her insulin to lose weight and she is already underweight, her last hba1c was 14.4, so i can imagine we will be facing the same problems sooner rather than later, she is 16 at the moment. you must be scared for her future, i know i am scared for my daughters future, she is having problems with her eyesight already. i cant think of any advice i can give you but i really empathise with you.type 1 is a horrible illness, my daughter was diagnosed at 9 and i dont think ive ever come to terms with it properly. if you need some support from someone who to some extent understands what your going through please feel free to pm me, i know for me just talking about things can help you to cope, take care, louise

[Lulu383]

Hi there,

I'm so sorry to hear about all of your daughter's medical problems. It must be overwhelming. Unfortunately I can't advise anything because my son is a new diabetic - less than 2 years (he's 15). But I am surprised to see so many complications in a woman so young. May I ask how her blood sugar #'s have been over the years? I must admit that it scares me that only 22 years can bring along all those complications. I think the nerve problems are called neuropathy....But I suppose as for coping, the best way is to handle it day by day. And if that's too hard, hour by hour. Try to only deal with what each day brings. Nothing more. You all are in for a tough time, my prayers go out to you all.