I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: amanda100wilson on October 02, 2012, 05:43:13 PM
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I switched dialysis units the other day, after being told by my previous money-grabbing doc. that he wouldn't support me doing extended on the NxStage machine, and made a flippant comment that at least D. gives me a few extra years. my new doctor is so agreeable to me trying extended, and is much more caring. he has agreed that I shouldn't be on the mega doses of sensipar that I am on to control my PTH and that I should have my glands removed.
My new nurse is great too. very supportive of a patient being self-managing and able to make changes without constant consult with her. also believes that patients should be as independent of a care partner as much as possible. so much my type of nurse.
I am just learning how to use Pureflow, as my last clinic never trained me on it. looking forward to using it. less boxes to clog up my home. are planning to ship some to the UK so we can go and visit our families next year.
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This is Fantastic News Amanda. I know you have struggled with the previous Doc. What a Jerk! I also believe you can overdo the Sensipar. John is prescribed to take it everyday, and I don't give it to him everyday. Over time his PTH has dropped from 1700 to l98 last tested. This has been over the last 5 months though. He does take some Calcitrol and OTC Vitamin D. His labs last month were Perfect. Im so proud of him!
I never make a move without my Neph knowing what & why Iam doing a change. She has been his neph since the start '2004 and we have a deep respect and understanding between us. She gave me her cell number years ago and if I need anything, I text her and she reply's. I have always thought and felt, that she is the main reason that I feel comfortable with my decision makeing in regards to John. Anyone that knows me, knows I wouldnt hurt him for the world!
Im so glad to hear this. You are one strong lady, and I have always respected your tinasity (?). Stick with it AW.
God Bless,
lmunchkin :kickstart;
P.S. You are going to LOVE PureFlow. The boxes will decrease immensly!!!!!
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Guess I'm luckier than I thought,my Neph/Nurse/Tech are all the best.Can you be a lucky dialysis patient?Mabye not but it seems you can be less unlucky!
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..Im so happy for you Amanda... It's the best ever when that stuff works for us. We love our neph, and 'may' love our center nurses, if only we could understand their language :( That clarity barrier is tough and makes communication real hard sometimes... well, and the fact that they are still fussen about getting us those 3/5 in needles.. :(
haha,, funny chinks... I always feel weard when i say lucky about things like that, but yea, your lucky...
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Guess I'm luckier than I thought,my Neph/Nurse/Tech are all the best.Can you be a lucky dialysis patient?Mabye not but it seems you can be less unlucky!
My doctors, nurses, PD clinic and renal ward are all bl...dy fantastic, too. I feel so sad and cross when I hear about people who are missing out on decent support.
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haha,, funny chinks...
I'm a bit offended by this ?!
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If it's the "chinks" that offends I suppose I should explain it was my father's nick name and the name of our buisness I have no idea where it came from and I mean no disrespect to asians.
haha,, funny chinks...
I'm a bit offended by this ?!
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oh i get it now.. sorry. I didn't read completely.
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That’s great news! :clap; Let me know how it goes as I was strongly thinking about extended as well. The only thing with that is that I do it Saturday mornings and don’t want to spend a half of day on Saturday on the machine. However, if it works well, I probably can make a change to my schedule. Also, with the glands removal, is it possible to do some researches before you decide to remove them? I’ve read that when removing your glands, you will be on medicine to keep your numbers from dropping too low. Is it possible to check to be sure this is not the case?
Best of luck!!!!