Sunday Morning

[Dragonfly]

Good Morning Everyone

I got up this morning feeling better, able to do some things. Getting tired already, probably take a nap soon, maybe today after my nap I will be able to do the dishes. Not looking forward to tomorrow, after treatment I will be sick again. Sometimes I could just cry, knowing how much better I feel and then treatment and sick again. I hope the Dr's can figure it out.

[PKDSTGV]

Have you looked into doing Home Hemo with NxStage? I felt so bad after every treatment in center. I seriously didn't know if I could keep doing it if things didn't change. Luckily, they offered NxStage with the promise that I would feel so much better on it and they didn't disappoint!  The center's tend to run people too fast and for too short a time which doesn't happen with NxStage because you can control the speed and time that you're on. I had to do a lot of research in the beginning because I knew that there had to be a reason I felt so bad and what I found is really all about human physiology. The way dialysis works, especially the ultrafiltration process, is to pull out extra fluids and waste from your blood. In order to do this your capillaries have to "transport" those things into the blood system, but the capillaries can only empty and fill back up again at a pretty set pace. When dialysis is performed with a pump speed of greater than 350, the capillaries don't have time to refill making dialysis less effective and washing patients out. It causes blood pressure drops, nausea and other symptoms that make us feel worse afterwards. With NxStage you can run at 300-350 over three hours or so, taking off 0.5ml's and still feel good afterwards. I get a little tired sometimes but for the most part, I'm good to go. The centers don't have time to run people that slow, they need the chair for the next patient. If you can't do home hemp, I suggest asking them to slow your pump speed and not take off as much each treatment. If that doesn't work, you may need to change the size of the dialyzer. I was first on a 180 but I made them change me to a 160 and that helped some. Nothing helped me though as much as going on NxStage did.

[Dragonfly]

I thought about doing home dialysis but I can't put those needles into my arm myself.

[skg]

I thought about doing home dialysis but I can't put those needles into my arm myself.

I'm pre-dialysis, and have been trying to settle on what to do. Right now, I couldn't put needles in my arm -- but home hemo seems the most attractive to me, and I figure I can learn to do it.

I'm a type 2 diabetic and I was *really* reluctant to go to insulin -- but it wasn't until I started using insulin, testing and injecting several times a day, that I got my blood sugar under control (well, the insulin plus a low-carb diet). Now I wish I'd gone to insulin sooner. I didn't think I could do it at first, but now that I've been doing it, it's gotten easy. I do use the shortest, thinnest needles I can possibly get -- and the target is pretty large (hit my abdomen and avoid my belly button!).

The self-cannulation scares me -- but I figure I'll work my way up to it. Whether I do home or in-center, I figure self-cannulation is best, if at all possible.

My steps so far -- I managed to watch the whole time last time I had a blood draw, when normally I'd look away. But I wasn't up to watching yet when they put an IV in on Friday. (But it did reinforce my goal of sticking myself. IVs seem to follow a standard pattern for me -- they tell me how good my veins are, then have problems sticking me. For a kidney biopsy a couple months ago, two different people tried four times, and they finally gave up and did the biopsy without starting an IV. For a colonoscopy on Friday, they got it on the second try after switching to a smaller needle.)

I've found training materials about self-cannulation online and I can read through those (they have illustrations rather than pictures), but I haven't been able to watch videos of it yet. But I'll get there eventually.

And I'm pretty sure I could stick an orange -- if I remember right, that's what my mom first practiced on when she went in to nursing decades ago.

cheers,
skg

[Dragonfly]

Last year I was doing PD and had to stick myself in the thigh with my epo, after a few months I couldn't do it anymore. I just can't jab myself with a needle. I wish I could. You mentioned you had a kidney biopsy, did it hurt? I was suppose to have one, but because my platelet count was way too low they didn't do it and then they changed their minds and decided not to. I am thinking about having it done because I am urinating more and my urine is yellow, I want to know what's going on with me, I am a bit worried.

[Angiepkd]

Please don't let the fear of sticking yourself stop you from considering home hemo with NxStage!  I did not think I could do it when I started, either.  If I can do it, anyone can do it!  The best part of learning to do my own needles?  It doesn't hurt AT ALL!  I can't begin to describe how much better it is!  I made my own button holes, starting with sharps and progressing to blunts.  I know it sounds crazy, but please don't let the needles keep you from feeling better and getting your life back.  My training nurse walked me through every step.  You can do it and you will feel like a new person! 

[skg]

Last year I was doing PD and had to stick myself in the thigh with my epo, after a few months I couldn't do it anymore. I just can't jab myself with a needle. I wish I could. You mentioned you had a kidney biopsy, did it hurt? I was suppose to have one, but because my platelet count was way too low they didn't do it and then they changed their minds and decided not to. I am thinking about having it done because I am urinating more and my urine is yellow, I want to know what's going on with me, I am a bit worried.

I don't mind the insulin shots anymore, but they are short, thin needles. I also adopted a method for giving the injection based on Dr. Richard Berntstein's comments -- sort of holding it like a dart, and use a quick motion almost like throwing a dart. That turned out to hurt a lot less than what I had been doing which was pressing the needle in more slowly. He also recommended not taking more than 7 units of insulin in a single injection -- so, since I use 14 units of basal insulin in the morning and in the evening, that's four injections a day for the basal insulin, not counting what I have with food. But I am *much* happier doing four injections for that, than I had been when I was doing a single shot of 28 units.

I did have a kidney biopsy. That didn't really hurt at all -- a little pressure and a "click" sound. It was scary -- the needle seemed gigantic, but the local worked great and my nephrologist had shown me the needle and how the release to take the sample worked and made the click sound. So, I knew what to expect. They ended up taking three samples. It was uncomfortable, but not painful. I took it easy for the next couple days -- they had given me a script for some pain medication, which I filled but even after the local wore off, it never hurt enough to bother taking any.

The part I didn't like was the four failures trying to get the IV started.   Apparently my veins have "valves" in them which makes them hard to stick? I haven't researched that yet to see what it's about. On my list of things to learn.

cheers,
skg

[Riki]

Yeah, you don't NEED the IV with biopsy.  It's basically just to give you a bit of sedation to calm you.  My hospital doesn't give anything as a rule.  My last few biopsies were of the transplanted kidneys, so they were on the front, and I got to watch everything that was being done, not that I thought that was a good thing. *L*

skg, you'll find that once you have a fistula placed and it matures, the veins around it get much bigger, which makes them easier to stick with the big needles used in dialysis.  I'd learn to stick myself so I could do home hemo, if it's ever offered here, but my eyesight just isn't good enough.

[lmunchkin]

I cannulate my husband, because #1 his eyesite is not the best & #2 his fistula is in his dominant arm. He is right handed, so that would not work anyway.  I am not afraid of needles, so that was a plus, but there are many others who just did not think they could do it.  Angie is right, the trainers are there for that purpose too.  And as she said, it is much easier to cannulate yourself, because you feel it on entry.  You will KNOW if you go too far.

Look, if I can learn it, I know You can. Im not an educated person, but Ive got guts.  I wanted this for my husband.  When he was in-center he was washed out all the time.  He constantly had low BP, because, quite frankly, they were rushing blood through that machine too fast.

When we trained for PD, I thought I knew alot about Dialysis.  But I really did'nt.  Only when I started Home Hemo w/Nxstage did I truly find out about Dialysis and how it works.  It was very overwhelming a first to learn, no doubt!  But the nurses will not let you do it on your own until THEY feel you can.

I am so Happy with this choice.  I wish they had offered it when he was first diag. in 2004.  Granted, he still has to dialysis and sit for 3-3.5 hrs, but if We have something planned or an engagement we want to attend, well, we do it!  Because of the more frequent dialysis, you can work it however you want.

We started out 5-6 days a week, but now, are doing 3 on/ 2 off.  If he over does it with his intakes, then Ive been known to D him on his day off.  But seriously, NxStage is wonderful.  This machine is very mobile.  We have taken a couple trips with it.  Plan to go to TX in the late summer/early fall, if Good Lord willing!

Well, getting carried away here, but NxStage is to blame.  It's the best we have found as far as D goes!  Seriously, look into it!  There are alot of people on this site doing it, and doing extremely well.

God Bless,
lmunchkin

P.S.  I started sticking Strawberry's to practice with.  You'll be an expert in no time.  Try it!

[BobN]

Agree with everyone who recommends home memo.  I feel much better since I started at home.

I was never bothered by needles and found sticking myself pretty easy, but we trained with another person who thought they could never do it.

We saw them at the monthly clinic and she is now sticking herself routinely.  You may find that what seems impossible now will be easy after doing it 5x per week.

I think it would make you feel better.  Best wishes.

[Dragonfly]

Agree with everyone who recommends home memo.  I feel much better since I started at home.

I was never bothered by needles and found sticking myself pretty easy, but we trained with another person who thought they could never do it.

We saw them at the monthly clinic and she is now sticking herself routinely.  You may find that what seems impossible now will be easy after doing it 5x per week.

I think it would make you feel better.  Best wishes.

Thanks I am thinking about it, but I have to find out more about it and all the details.