Sunday, November 15, 2009


Ady wrote:

I know you asked a while ago about dialysis, how you know when it's time. Basically he sleeps a lot, watches TV and falls asleep. He would says he is not feeling well. He could not explain it. It's the kidney that is not able to eliminate the fluids and the toxins. I am fortunate that the nephrologist is talking to me and I asked what if he refuses to go on dialysis; she said he will die. I asked what type of death is that; she said he will go to sleep and never wake up, no pain. He also had few episodes of diabetic coma, and they were there because the kidney will not eliminate the insulin. At least I could see them coming and gave him glucose and OJ. Those episodes scared him a lot. He did not have any after he started dialysis, but there are other issues: eating, sleeping (they can't sleep through the night), restricted drinking and all the other extra pills (vitamins that the machine depletes the body off, anemia - iron that they give him via the dialysis, potassium that gets high). He drives himself, which is good. However, his driving is as bad as you all have shared with us. When I told him is the diabetes, he laughed at me. Lately I refuse to go if I do not drive. Your blog has helped me a lot, understand some consequences of the disease (driving, anger, incontinence). Thank you all and you specially DW (as I read all your blog),

Ady, thanks for your insight. I'm sure my hubby is just a step away from needing dialysis. In fact, he might be in need of it - who knows since he hasn't been to see his doctor in forever.

He sleeps all the time.
He comes downstairs, sits down on the sofa, turns the TV on, and falls asleep.
At 10 am in the morning! At 6 pm at night....ok, at any time of the day.
He usually goes to sleep about 10 pm and sleeps til 8 or 9 am.
He gets absolutely no exercise other than going up and down the stairs twice a day. Sometimes only once. And if we go out to eat, then he has to walk. The rest of the day he is either in bed, in his office in the chair, or on the sofa.

I know that the last time he went to the doc, his kidney function was at 22%.

He has probably put on 20 pounds in the last year. I know it's because the waste is going inward, no exercise, and he does eat all the time.

Personally, I imagine he will have a heart attack first.

He has been getting optical migrains where he sees nothing but bright white. So far, his vision returns. I just wonder how long before it doesn't return.

If I'm in the car, I drive.

And, as an example, today he has had:

a can of clam chowder
turkey sandwich and fries from Chilis
ham, egg and cheese bagel
chocolate dove candy
ham egg and cheese sandwich
potato chips

Not an ounce of nutrition in there, huh?

On and upbeat note. I spent today and yesterday teaching art techniques to a wonderful gal who flew here to attend my class. It is a great confidence booster to know that I'm ok. Ok enough that someone else would fly in to learn from me. So it does help to have something else in your life that is "greater" than the diabetes, something else to focus on, worry about, stress over. I think it's the best thing I ever did. So, for the past 48 hours, I've escaped once again into my "other" world. It's something everyone should do.

the therapist I spoke with said this....

you need to find a goal in your life. That can be to get a job, to get a career, to volunteer, to have a hobby, to work for a cause. The goal is to get you something else to focus on. Something that you can devote your attention to. That way the diabetes isn't the only thing in your life.

Really good advice, huh?

But know that it took me 5 whole, long, endless years to agree with her and get myself to where I am today.

And it doesn't mean that I don't check every morning to see if he is still breathing. Or that when he falls asleep on the sofa - I don't worry about if he will be able to wake up....or is he in a coma?

It just puts something else in my life for me to think about as well. And that helps!



ady said...

I do not want to scare you, but even the path to dialysis is not easy. He needs a fistula (connecting a vein with an artery; it starts low near the hand of the left arm, to be moved up higher if this one is dead, and upper again, and then the right arm and then the leg and...). I had no idea that I will have to see this Dr (specialist in blood vessel surgery) many times. It's an outpatient surgery, but it's a surgery with full anesthesia. The problem is that it takes 3 to 4 months for the fistula to "mature" for them to be able to use it. Which means, they may have to put a caterer in the hart artery, (another surgery), if his kidney is bad. If the kidney is bad, the potassium gets very high and puts the heart at risk. The hart caterer is very prone to infections, no shower allowed, so you will have to wash his hair in the kitchen sink, as I did, or send him to the barber shop. No fun at all. The way he sleeps is the toxins buildup. He should do less insulin too. I know it's nothing you can do or control, I am just talking aloud, because I know you like to know what to expect. I am there with you and hope he will go to see a kidney specialist soon. A GP is not enough.

Neil Curtis said...

This is not a diet I would eat as a type 1 diabetic

a can of clam chowder
turkey sandwich and fries from Chilis
ham, egg and cheese bagel
chocolate dove candy
ham egg and cheese sandwich
potato chips
I would get rid of the ham, the bagel the fries and the clam chowder. Never touch the stuff and never will. I have been type one for forty years and pretty much figured out what to avoid.