I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: G-Ma on July 08, 2008, 06:54:06 PM
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I started out on Dialysis in a Hospital owned center in ND and always went home with cramps and major migrane headaches and had to sleep them off the next day so I never felt well, then came to NC to try Dialysis as my kids live here and they wanted to see if I would feel better. Well, night and day is how much better I feel. I am at a Davita center. The nephrologist here said the machines in ND were Acetone I think is what he said and that is why all the side effects while the machines at Davita use Buffers. Do any of you or have you been on the acetone machines and have you had any of the side effects and how do you deal with them? I'm asking as I would like to go back to ND for awhile but don't want to go back to feeling so bad. At this point Home Hemo is not an option for me yet as I am on a tight budget, you know what that's like and am waiting for answers on how much I have to throw in the pot for Home Hemo including change in elec and water bill, also don't have a partner to train with. Also, my neph had a fit Monday cuz my PTH is 900...was 1100 in April, 500 in May and now 900 in June??? any ideas?? He just handed me a prescription for Sensipar and it was faxed to pharmacy and THEN I came home and read the site about Sensipar...Don't know that I want to take it...any other options that you know of?
Thanks all in advance for any input.
Ann
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should you try the sensipar
some memebers have no problems with it
please try to stay where you feel better and you are doing better
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sorry Ann that we had no answers for you I am not familiar with your questions, somebody's got to know though...Boxman
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G-Ma,
I don't know anything about the acetone stuff.
I do know that home hemo has saved me a ton of money. I'm on NXStage. If you are worried about the water bills, see about doing it all with pre-bagged solution. (I've got a well, so the water billing wasn't an issue here.) My electric company has different rates for people with life support machines in the house, so my electric bill is actually cheaper now. Plus, the biggest savings has been in gasoline. I make trips to the center on average about once a month now, instead of 3 times a week. The supplies are delivered to me at the house, and there is no charge for any of it. NxStage doesn't need a lot of fancy wiring or plumbing changes, and most of what you need to make the few plumbing changes is provided by the company. It's possible to do NxStage without a partner - it just takes more effort.
When the Sensipar didn't work for me, they put me on IV Hectorol. There's also an oral version.
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i don't know about the machines but it has been my experience that cramping and headaches come from pulling too much fluid.
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I think the correct word here is acetate rather than acetone
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I "second" jbeany's description of the added costs to do home hemo.
G-Ma,
I don't know anything about the acetone stuff.
I do know that home hemo has saved me a ton of money. I'm on NXStage. If you are worried about the water bills, see about doing it all with pre-bagged solution. (I've got a well, so the water billing wasn't an issue here.) My electric company has different rates for people with life support machines in the house, so my electric bill is actually cheaper now. Plus, the biggest savings has been in gasoline. I make trips to the center on average about once a month now, instead of 3 times a week. The supplies are delivered to me at the house, and there is no charge for any of it. NxStage doesn't need a lot of fancy wiring or plumbing changes, and most of what you need to make the few plumbing changes is provided by the company. It's possible to do NxStage without a partner - it just takes more effort.
When the Sensipar didn't work for me, they put me on IV Hectorol. There's also an oral version.
We have seen no noticeable difference in our water (city system) or electrical bills.
Marvin does take Sensipar.
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Really, the Nxstage doesn't use that much water. It's the equivalent of taking one extra bath a week, if you fill a 60 L pureflow pack twice a week.
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Really, the Nxstage doesn't use that much water. It's the equivalent of taking one extra bath a week, if you fill a 60 L pureflow pack twice a week.
wow wish we would get nxstage my fresenius 4008b uses two and a half litres per minute and i do 8 hours every second day and we are in drought !!
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Sensipar works great at lowering PTH. Never had too many side effects from it. Though some people I know have had problems with it but it was at the 180 mg dosage range.
Cramps and headaches can be caused by trying to take off fluid faster than the body can shift it or too much fluid all together.
Is there a difference in the amount of fluid you have to take off between the two places?
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Thank you all for your info.
Yes, could be acetate..Dr. seems to feel they are some of the older machines, acid and pull too fast. Yummy huh?
BigSky...thanks, there is no difference in the amount of fluid I have to take off between the two centers, generally 2-3 k's.
I am going to check out NxStage. Luckily for me the county I live in has Medical Van Service that I qualify for so my gasoline cost is a very small percentage of what it used to be, just the minor inconvenience of being picked up and dropped off on their timeline and not mine.
My new fistula is almost ready to try so I am going to """"try"""" to stick myself...this is chicken big talking, how do you get past this??? :banghead;
Hope you had a great weekend all. Because I was feeling out of the vacation loop, my best friend from ND came here for a few weeks and took me to Cherokee, NC and Chimney Rock, NC after Fri dialysis....we loved Chimney Rock and plan to do a whole weekend there next time. I can't believe all the places to see in the beautiful NC mountains. We just got home and I am tired but still feeling great.
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G-Ma, ask the nurse for a couple of needles like they use on you. Take them home, get an orange or an apple, and cannulate them for a bit. Get used to the feel of the needle in your hand. The first time seems horribly scary - but it's more mental than physical. When you actually do it, you are so busy concentrating on doing it right that you don't really notice any discomfort from the stick.
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One thing I've noticed is that the ease of sticking is the proximity of your fistula to the surface. Mine is really shallow and easy to stick. Some others are much tougher.
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Thanks jbeany about the practice using an orange, and yes flip the vascular surgeon created the fistula very close to the surface, I can feel it really well so just need to get past the nerves...hey do u'all use the lidocaine to numb the area or does that hinder knowing where to insert the needles?
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I use the lidocaine. It doesn't help with the nerves but you will eventually learn where they are and avoid them.
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??? Nerves...forgot about those...""running through the house screaming at the top of my lungs""... :thx;
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I have a nerve that runs across my fistula. It ain't fun when the needle hits it.
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Oh, I am so sorry, that has got to be a major pain in the you know what in addition to the fistula.
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Oh Lordy! Gwen, our beloved tech got the nerve in my arm last night. Holy God! Did that ache the entire treatment and then some!
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sorry kitkatz. but the tech is lucky, if it had been me the tech would be dead. (no one ever said i was a nice lady)
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And she made me come back today to take off extra fluid. Whaaaa!
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that's something else i NEVER do. the tech doesn't tell me how much to take off. i determine that. besides i always go in less than my dry weight. boy does that confuse them. doctor isn't going to change it either.