Kidney Issues

Ok, I have had T1 for 40 years -- and for the most part very few complications or ones that I could manage.  It seems that ALL OF A SUDDEN, my 24 hour urine sample showed moderate protein.  I quickly went to a Nephrologist who said that my kidney function was in decline, but not much more.  My GFR is still over 60, but all of a sudden my potassium levels went high and I was told to go to the emergency room - now I take Kayexalate® to keep my potassium lower ... then the put me on a diuretic which dropped my phosphorus level.  

I am terrified of dialysis -- just something I never wanted.  I have been getting my blood drawn every week and it is getting very upsetting.  

For those of you who have or are going on dialysis ... from where I am now .. what happens?

Keeping good thoughts for you Scott

Try this link for more useful information.

This is probably a dumb question, but do you take an ACE inhibitor, like Lisinopril?  It can stop kidney problems and sometimes even improve.

Hope Cora will post.  She had kidney diasease and eventually had a kidney and pancreas transplant.  She has said in past messages that kidney disease progresses very slowly.  

Are you on a low salt. low meat diet to help your kidney function?  

I'll pray for you Scott.  Hate that you are going through this.

Hang in there Scott,

  I'm hoping nothing but the best for you.


If you take care of yourself, from this point you will quite possible have decades and decades before you need dialysis. I agree that you should probably be on an ACE or an ARB as they are shown to help stop the progression of kidney disease. Have you cut sodium from your diet? I am also curious if they have sent you to a renal dietitian. This will make handling your potassium easier. You can't take the potassium meds indefinitely and will need to cut back.

When I intially had problems I told myself that I would never do dialysis. Transplant or bust. Once I got there I did discover that while it's not a barrel of laughs, it's certainly doable. I travelled to Disneyworld and had a marvelous time while on hemo. You can still live your life. But as I said, it may take you decades to get to that point. It took me from about 1977 to 2001 and that was in the days before any knowledge of ACE inhibitors or proper diet. Hang in there and feel free to ask me lots of questions.


I have been taking and ACE inhibitor for 20 years.  My potassium is high which can cause a sudden heart attack (abnormal EKG), so my diet has changed a LOT (limited veges, etc.).  This really came out of left field, but now it's a reality.  I am checking into a kidney transplant, but w/diabetes they want me to look at a pancreas/kidney transplant --- I need on goo live kidney and on live pancreas .... they would not replace mine, they just stuff you with the other two!


Thanks Cora!  I am taking a medication called Kayexalate (powder) 3 times a week.  my potassium levels have been okay ... my kidney doctor says I could stay in this for years -- I was worried as i read it could cause and could have some bad side effects.  He suggested I consider that ALL drugs have side effects.

Cora,  I have not looked into all the type of dialysis there are, but it just is the ONE thing I never wanted to face.  I'd be more comfortable with  cancer ....


Thanks Tina.

Thanks Jeff.

Scott, I know it's hard, but try to relax a bit. Nothing is ever as bad as you think it's going to be. I've been through some ugly stuff, but you know what? It sucked but I could do it again if/when I had to. If you don't mind my asking, what is your creatinine level? It's not the completely definitive test, but I found it to be a good guide as to where you are. Mine was at about 11 (or about 900 in Canadian/European numbers), so I suspect that you have a long way to go.


I know I am over reacting Cora, it's something I never wanted to face.  My creatinine level is 1.1  -- far from despair, but I know what the end result will be and it scares me very much. My most recent GFR war 78 ... but it changes very often .. not less than 60 however.

Thanks for your input and support.