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Hi everybody. I would really like to leearn about the experiences on dialisis of any T1D particularly anyone that has been dialising for more thsn 5yrs. At My 1st Neph appntmnt last month i was told ave LE on dialisis was 5 years as an average there must be plenty of posrt 5 years patients. Please share your story with me i am looking for hope
So many heartfelt thanks
Terry in the Uk
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marj01201 terry06351
Posted
Terry,
I notice that no one has responded to your post yet. I have type 2 diabetes and expect that I'll be on dialysis at some point in the not too distant future, although, there has been improvement in my creatinine data over the past 7 months, so I may a few more years before dialysis now.
I know the the average length of life on dialysis is five years. But there is also a fairly big range in lifespan on dialysis. So when my time comes I'll first focus on learning how to administer PD dialysis to myself. I'll then focus on making dialysis a regular part of my daily routine and doing exactly what I'm told, to the best of my ability.
I'm not planning to mark days off on the calendar or doing anything else to remind myself that I'm only supposed to live 5 years in dialysis🐶 Instead, I'm going to get on with my life working and doing other things that I enjoy. After all, I may well be one of those lucky people who live 10 years or more on dialysis.
When I was first diagnosed with CKD I nearly drove myself nuts trying to figure out my life expectancy. What I learned was that a woman my age with Stage IIIB CKD lived on average 9 years. That was 7 years ago. I'm not yet on dialysis, so I expect I'll outlive the 9 year life expectancy by at least 5 years.
My point is that each case is individual. Our data does fall within the distribution of data for people with CKD. But we don't specifically know where our data falls. So why not choose to plan for the worst (have our affairs in order) but then live and hope for the best, thereby expecting to outdo the data.
One final note:
My father had hypertension-related CKD. I never knew him when he didn't have that diagnosis. He did what his doctors told him to do. He and my mother put their children through college, attended their childrens' weddings and welcomed 4 grandchildren into this world before he started in-home hemodialysis.
He passed away at 62 years of age. Of course we would have loved for him to live longer. But I wouldn't have traded him for a father without CKD. He was a major positive influence in my life that continues to this day. Among other things, I learned from him how to live well with a serious chronic condition. And, most definitely, I learned that it's not how long we live; rather, it's how well we live.
The mental battle of CKD may well be the worst part of this condition. It took me a couple of years to really come to terms with all of this. I'm hoping you'll be able to reach a place of peace much more quickly than I did.
Marj