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okarol
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« Reply #25 on: December 11, 2007, 10:50:02 AM » |
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 She's a great kid. I hope labs are good!
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lola
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« Reply #26 on: December 13, 2007, 08:25:19 AM » |
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Dani's hemoglobin is 11.7 same as Otto's kinda funny. Talked to the Anemia clinic about Otto and then told her about Dani's issues with the Iron pill and she gave me the name of another pill to ask about because she's not sure if they use it on kids. Will wait till Tuesday to get all other results when we see the Neph. Also when do they list kids? do they wait till they are at stage 4 or do they list them sooner since there kids? I'm planning on asking when we go in next week but it seems like you guys know so much thought I'd ask.
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lola
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« Reply #27 on: December 18, 2007, 10:42:16 AM » |
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Well we just got home from the Dr and Dani is on the couch sleeping. She gets to stop the Iron pills and we will do counts in 2 months or sooner if need be and decide what is the best treatment then. Dani goes back in June and then he said as much as I'm against it she will need to start BP meds again, we have done this 2x's befor to try to lower protein in urine and she did not do well but he said her BP is slowly creeping up and we need to keep from any other problems  |
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goofynina
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« Reply #28 on: December 18, 2007, 10:57:51 AM » |
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I am so sorry to hear that you didnt get good news at the damn docs office. Hang in there girlfriend, remember, we are here for you always. One day at a time my friend. Love to you all...  |
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Sluff
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« Reply #29 on: December 18, 2007, 02:17:57 PM » |
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I don't know much about labs but I do know the importance of keeping the blood pressure under control. I hope it helps and maybe she can get off them someday. You have my Prayers for your entire family,Lola.
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angela515
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« Reply #30 on: December 18, 2007, 02:43:58 PM » |
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She is in my prayers and I hope the blood pressure meds work and high blood pressure is a bad bad thing. |
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
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okarol
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« Reply #32 on: March 28, 2008, 10:50:31 PM » |
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 It's hard to tell when kids are just being kids or if it's something else.
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paris
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« Reply #34 on: April 02, 2008, 03:38:36 PM » |
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Sweet Dani. I wish I could take her pain away. Hopefully the test will tell how her body is handling iron. I can't complain when I think about the kids dealing with health issues.
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 It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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Sluff
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« Reply #35 on: April 02, 2008, 07:25:59 PM » |
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oh..boy... you have your hands full don't you Lola. Please know my thoughts are with you and your family constantly. Don't forget to take care of you. |
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lola
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« Reply #36 on: April 03, 2008, 06:43:23 PM » |
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Well the test are in and Dani is back on Iron pills. The Dr said it's not her diet it's due to her kidney's not working properly.( NO S@#$ SHERLOCK) I've only said this for a year now!!!!! Hopefully this time around her stomach does better.
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Romona
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« Reply #37 on: April 04, 2008, 09:20:40 PM » |
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I feel sorry for kids when they have to take meds. |
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annabanana
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« Reply #38 on: April 05, 2008, 05:53:11 PM » |
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But thank God for the meds.
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
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okarol
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« Reply #39 on: April 05, 2008, 06:27:10 PM » |
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I don't understand getting iron pills if the kidneys aren't working properly?? I guess it seems like you'd need epo and iron to help anemia? But maybe that's only with severe kidney failure. (I never could get it straight.) Anyway here's more info http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/They say: Many people with kidney disease need both EPO and iron supplements to raise their Hct to a satisfactory level. If your iron levels are too low, EPO won't help and you'll continue to experience the effects of anemia. You may be able to take an iron pill, but many studies show that iron pills don't work as well in people with kidney failure as iron given intravenously. |
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angela515
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« Reply #40 on: April 09, 2008, 09:46:42 PM » |
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While on dailysis, I was on Epo, but still sometimes had to get Iron infusions because I was still too anemic.
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
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lola
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« Reply #41 on: June 17, 2008, 12:14:31 PM » |
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Well Dani just had her appt and her Hemo 11.5  she's staying on Iron since she needs it, they also ran some other test and will call in a few days. Her Neph is going to treat her aggressively as a boy with Alports so he's going to decide in a few days what med he'll start her on to try to save her kidney function for as long as possible. He calls Dani his little fluke since she shouldn't have anemia yet since she still has good kidney function and she shouldn't be suffering from Alports, but like he also said she's a Machado and they all like to be a little diffrent. |
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okarol
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« Reply #42 on: June 17, 2008, 01:08:00 PM » |
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Good news! Sounds like your doctor is on top of everything too - that's great!
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monrein
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« Reply #43 on: June 17, 2008, 02:04:26 PM » |
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That's great news Lola. I too hope that Dani's kidney function will hang in there for a very long time. |
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
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lola
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« Reply #44 on: June 19, 2008, 12:06:57 PM » |
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We just heard from the Dr and one of the #'s they look at besides protein to creatine ratio but it has to do with protein in the urine, they want the # to be under 20 and Dani's is 109 so he's starting her on BP meds and we'll see if Demon child comes back. We need to get that # way down since it will just speed up her kidney failure and they say BP meds can help lower protein levels in urine  |
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Sluff
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« Reply #45 on: June 19, 2008, 12:23:37 PM » |
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Bummer... BP is pretty important though. |
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lola
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« Reply #46 on: September 16, 2008, 10:27:30 AM » |
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Well we just heard about Dani's labs from Thursday, Hemoglobin is 12.2  But he is upping her BP meds because her protein level is still WAY to high in her urine and that's what is speeding up damage to her kidneys so hopefully this will help. I'm just freaked because this med makes the  come out of her. |
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annabanana
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« Reply #47 on: September 20, 2008, 11:24:27 AM » |
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How's Dani?
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
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lola
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« Reply #48 on: September 20, 2008, 02:09:20 PM » |
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She's good Thanks, she has joined hopekids and has found there ARE other kids who have to take meds and have labs just like her. She has only been on the new dose for 3 days so if the is to come back I'm thinking we will see her in the next week or two. |
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okarol
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« Reply #49 on: September 22, 2008, 01:06:01 PM » |
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Kids adapt to things in an amazing way. But it helps to have a mom like you lola! |
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I Hate Dialysis Message Board
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