Looks like I'm staring death in the eye. Just learned that my "clearance' came in at 1.3 with now no residual function. It means that I have only one chance to avert the need to switch to HD and that is by increasing my fill volume. AND increasing to 8 exchanges/day including 7 on the cycler. So effectively, my life will be taken over totally by D-- assuming even that this does the trick and raises my clearance. Enough.I really, really don't want to spend the rest of my weary life on an HD machine with holes punctured into my arm,sitting in a chair. Already, even before this shift (if it works) my life feels taken over by PD. It's getting harder and harder to find justification for staying alive. I'm not productive anymore as it is. My dog is the only thing that keeps me going. And she's 15+. When she's gone, I can't imagine what would make my life feel meaningful. I will not take on another dog--even tho i feel as is I can't live without one in my life. I just don't have the energy to properly exercise a dog and I'm too old to make a long-term commitment to another animal. So this feels like the beginning of the end.
Hey K&S, just wanted to send some love and support. I always enjoy reading your contributions here and I love your perspective, humor, devotion to your dog (like me!), and intelligence.When I was diagnosed, I decided not to do HD for the very reasons you said. I'd watched my dad go through it, and while he faced it with a lot of good humor and patience, I never thought I could do it the same way. I didn't want them to cut my arm to make a fistula. I didn't want to sit for hours with needles. I didn't want any of it. (And with PKD, PD wasn't really an option. Also I love baths. )But then I got really sick (this was me at age 40 and I could barely think or walk!), and I opted to stick around and try HD. I live alone and I have a little dog who loves me and needs me, and I'd made a commitment to taking care of her. And HD is... well, it's OK. I felt so much better than I had before that it changed everything for me and changed my outlook. It's been almost a year now.Some things that help me the most:- I asked for the shift that has mostly patients who are still working, which is third shift at my center. These patients are more active/stable and have the energy to be more friendly, and so they may have more in common with you, because you sound like a bit of a firecracker. - I bring an almost hilariously enormous bag of pillows and blankets and build a nest in my dialysis chair, which makes it super comfortable. Seriously, it's a pillow to sit on, a pillow for my back, a small pillow to rest my hand on, a small folded blanket to rest my arm on, and a blanket to cover me! Other patients have said they look at me with envy. It's a bit much, but it makes the chair bearable and almost nice!- I enter through the side door, which lets me avoid the clog of medical transports at the main entrance, and it feels more like a regular doctor's appointment.- I bring snacks and a small drink from home. Snacking helps bide the time. I also keep a small bag with lip balm, moisturizer, hard candy. Like what you'd bring on a long car trip.- I also bring my own entertainment (iPad) and connect to their wifi. No one else seems to do this but it's ideal. They have TVs there, but I felt like a zombie just sitting and watching TV, so bringing my own feels more like sitting on an airplane or being at home than being plugged in getting treatment.- The needles are OK. They don't hurt, and I just look away when they are going in or out. When it's all taped up, I just depend on a well-honed cognitive dissonance.Above all, the thing I like most about HD is that it lets me partition my illness. When I am at the clinic, I am sick. When I am home, I am healthy. So it makes me feel like I'm almost normal when I'm at home. And that's really valuable to me dealing with a long-term illness.Anyway, I hope you try it again and have better luck. Taking a shift with more active people did wonders for my morale and made it a lot less scary.Sending you hugs and hope.
I see this in my Wife. Her diabetic vision problems create depression that she fails to admit to. I have managed to convince her to take her Prosac and Xanex, but she still won't take them as often as they are prescribed. Claiming she doesn't need them. Yea, Right. I know better. Sleeping in daily, won't get up and around, won't go outside even on nicer days. Lack of interest. She was NOT like this before. I can see it so clearly but she cannot.It's difficult when a Patient cannot see their problem so clearly. Very hard to explain in terms they will understand.
Tio-One of the problems is that I am no longer peeing very much. Since my recent hospitatlization for flu/asthma, etc. the shock of it essentially dried me up. So now I don't have that to help with clearance. My first adequacy test (over a year ago) was 2.7 and now it's only 1.3. My blood work is OK, but not my clearance. I will do another test this week just to make sure. I currently do one manual exchange a day and 6 cycler exchanges nightly. I'm a high average transporter so I can't do long dwells (over 1 3/4 hours) or I start taking on fluid.I also shared the information about the questions about KT/V in relation to PD. It went nowhere.
K&S, I'm so sorry if I'm being daft here, but are you on a phosphorus binder?
I Hate Dialysis Message Board
I Hate Dialysis Message Board
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