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mjk1104
Member
Username: Mjk1104

Post Number: 1
Registered: 06-2014
Posted on Wednesday, June 11, 2014 - 08:10 am:   Edit Post Delete Post Print Post

Hi I am a new user, I have been type 1 diabetic for 32 odd years and am now later stage renal failure. Not yet on dialysis but don't expect it will be long! I have been active on the waiting list now for 6 months. I am really keen to hear from other users who have had this and would be willing to share their experience with me? many thanks
Cora
Member
Username: Cora

Post Number: 552
Registered: 06-2007
Posted on Wednesday, June 11, 2014 - 03:03 pm:   Edit Post Delete Post Print Post

Hi there. I am what is termed a PAK - pancreas after kidney. I got my living donor kidney from my cousin and then a few years later I decided to go for it and got the pancreas. Part of my initial hesitation was that my kidney was done witgh steroid avoidance and I delayed getting the pancreas until they started doing them also without the prednisone. My last a1c was 5.2%!!!!!!! The amount of spare time I have is amazing! no carb counting, minimal testing (just once in a while for fun), no daily obsessions.....

Will you be going for the SKPT? Simultaneous Kidney Pancreas TX? That can be great. Best of luck.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
mjk1104
Member
Username: Mjk1104

Post Number: 2
Registered: 06-2014
Posted on Friday, June 13, 2014 - 06:54 am:   Edit Post Delete Post Print Post

Hi Cora

Yes will be going for SKPT. Just feel very nervous about the whole thing, I have 2 young kids so I guess I owe it to them. I am in the UK and I am told the list only has 300 people on it and they carry out between 150 - 200 procedures on SKPT a year so law of averages says I shouldn't have long to wait! How do you feel within yourself and did it take long for you to recover?
Cora
Member
Username: Cora

Post Number: 553
Registered: 06-2007
Posted on Friday, June 13, 2014 - 12:25 pm:   Edit Post Delete Post Print Post

Hi Mj. I wish I could give you a solid answer on how things will go for you. I had a rough ride after my kidney transplant and spent 3 weeks in hospital barfing. Although things did eventually look up. 6 years later, after the pancreas transplant, I was eating hte next day and was out of hospital in less than a week. So every person is different. The big thing to keep in mind is to take it easy (no lifting for 6 weeks) and only push gently. It may take some time to fully recover (especially getting used to the drugs) but in the longer term, things will be good for you. I'm sure of it.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Kidneyboy
Member
Username: Kidneyboy

Post Number: 69
Registered: 01-2012
Posted on Monday, June 30, 2014 - 11:04 am:   Edit Post Delete Post Print Post

Hi MJK,
Hopefully you can receive a kidney before starting dialysis. Though I did not develop diabetes until after my Tx (20% of patients taking Prograf become Type II) roughly 80% of patient in my dialysis center were Type I. Perhaps a kidney/pancrease Tx will be available eliminating the problem.

I would also suggest, if dialysis is unavoidable, that you research Nocturnal dialysis treatments. Though longer(8 hours rather than 4) these treatments are less harsh and have lower side effects than the 4 hour hemo type. I hope you receive your gift of life soon.
Stay well
Kidneyboy
Member
Username: Kidneyboy

Post Number: 70
Registered: 01-2012
Posted on Monday, June 30, 2014 - 11:04 am:   Edit Post Delete Post Print Post

Hi MJK,
Hopefully you can receive a kidney before starting dialysis. Though I did not develop diabetes until after my Tx (20% of patients taking Prograf become Type II) roughly 80% of patient in my dialysis center were Type I. Perhaps a kidney/pancrease Tx will be available eliminating the problem.

I would also suggest, if dialysis is unavoidable, that you research Nocturnal dialysis treatments. Though longer(8 hours rather than 4) these treatments are less harsh and have lower side effects than the 4 hour hemo type. I hope you receive your gift of life soon.
Stay well
ErikB
Member
Username: Erikb

Post Number: 5
Registered: 06-2014
Posted on Tuesday, July 01, 2014 - 12:45 pm:   Edit Post Delete Post Print Post

I had a kidney/pancreas transplant all in one. The kidney went well and after 17 years, still working. The pancreas transplant lasted about 3 years and then failed. They say that my body just wants to be diabetic. The pancreas didn't fail but my body attacked and killed just the islet cells that produce the insulin. Been diabetic for 30 years now. Really strange not to have to take insulin even if it was only for 3 years.

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