mark m
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« on: April 13, 2008, 08:01:16 PM » |
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Hi, Just thought that I should introduce myself- This is the short version. My name is Mark and I was diagnosed with kidney failure in 97. I was on PD for 31/2 years I loved it but got peritonitis so I ended up on hemo which I did for 6 months. Then I got a call and went in for my first transplant in 02. Then my IgaN came back and I lost the kidney after about 1 year of my numbers slowly going down. Back to hemo, then in 04 I got a perfect match... It was great while it lasted. Then back to in center hemo. After the last transplant failed they told me I would not be on the list for a perfect match again. I would have to wait for 7-8 years for a non perfect match kidney. This is the time that I got on the waiting list for Nxstage home hemo. A year went by before they called me in. I started Nxstage on Dec. 26th the day after Christmas. You have to put the needles in yourself on the first day of training. I somehow did it. I did about 6 weeks of training and have been at home for about 2 months. It has been going pretty good. I do 6 treatments a week for about 3:20 @ 450. My diet is now unrestricted and my numbers are good. They never were in the clinic. It is great to read everyones stories and see all of the pics. This site has helped me to cope with doing dialysis at home and realizing that others are going through the same thing. So Hello! -Mark.
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Life is good.
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rose1999
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« Reply #1 on: April 13, 2008, 11:34:26 PM » |
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Hi Mark, this is a great board with some lovely, friendly and knowledgeable people.
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flip
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« Reply #2 on: April 14, 2008, 12:02:34 AM » |
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Welcome, Mark and thanks for your input. Your story helps support my decision not to seek a transplant. I might consider the home hemo if I had a caregiver although I would probably do it less frequently at a higher flow rate.
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That which does not kill me only makes me stronger - Neitzsche
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boxman55
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« Reply #3 on: April 14, 2008, 12:25:14 AM » |
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Welcome to IHD, Mark Look forward to your input here. Your experience will help people greatly
Boxman, Moderator
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"Be the change you wished to be" Started Hemodialysis 8/14/06 Lost lower right leg 5/16/08 due to Diabetes Sister was denied donation to me for medical reasons 1/2008
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bolta72
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my best friend
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« Reply #4 on: April 14, 2008, 04:38:56 AM » |
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gotta do what I gotta do.. 2 yrs in ctr hemo
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willieandwinnie
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« Reply #5 on: April 14, 2008, 04:51:24 AM » |
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Mark. Glad you found us.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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annabanana
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« Reply #6 on: April 14, 2008, 05:46:08 AM » |
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caregiver to Randy: HepC and stage 4 ckd 1 kidney removed (cancer)Aug07
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Sluff
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« Reply #7 on: April 14, 2008, 03:21:21 PM » |
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Welcome to ihatedialysis.com Mark,
Glad you took the time to introduce yourself, it's always easier talking to someone when you know a little about them. I hope you learn a lot from us and feel free to ask questions when you need to and feel free to post often.
Sluff/Admin
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twirl
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« Reply #8 on: April 14, 2008, 03:48:33 PM » |
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welcome and you stick yourself OMG (gosh)
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monrein
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« Reply #9 on: April 14, 2008, 04:29:45 PM » |
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look forward to hearing more from you Mark
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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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mark m
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« Reply #10 on: April 14, 2008, 04:51:13 PM » |
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\\Thanks for the warm welcome. Flip -- I would have another transplant in an instant. Both of the times I had them they were miracles. I am sad that they did not work out but I would do it again. A higher flow rate does not give better dialysis, I will soon be going on nocturnal and doing a slow and low treatment. Kind of like good BBQ. Twirl -- It's not as bad as it sounds. I have less stress than having a rookie do it. No infiltrations yet. The blunt needles are safer for my fistula. Button holes are the way to go. Too bad they don't let you do this in center. I would recommend it for everyone. -Mark.
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« Last Edit: April 15, 2008, 05:02:09 PM by mark m »
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Life is good.
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flip
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« Reply #11 on: April 14, 2008, 05:10:25 PM » |
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Mark....why is your diet unrestricted? Is it because you do 6 treatments per week? Is that also why you run a lower rate?
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That which does not kill me only makes me stronger - Neitzsche
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mark m
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« Reply #12 on: April 14, 2008, 05:26:24 PM » |
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Mark....why is your diet unrestricted? Is it because you do 6 treatments per week? Is that also why you run a lower rate?
My diet is unrestricted by my dietician because my numbers are good. Doing dialysis 6 times a week pulls off more potassium and phosphorus. I still have to eat within reason, like no avocado and banana sandwiches, but I do get to eat a few things that were banned before, like a couple of slices of pizza. I watch what I eat more on my day off as more of the bad minerals will build up without dialysis. It is still a delicate balance but my numbers were never that good in center with high phos and pot. close to 6, now they are both closer to 4. I am sure that is it different for everyone, some people on nocturnal are encouraged to drink OJ and stop taking binders. I personally would love to drink a coke...
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« Last Edit: April 15, 2008, 07:23:48 AM by mark m »
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Life is good.
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flip
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« Reply #13 on: April 14, 2008, 06:00:39 PM » |
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I've found that if I follow the diet too closely, my phosphorus and potassium get too low. Now, I still partake of some of the "forbidden fruits" with no problems. I run at the max my center allows (500) with no problems. I've heard of some on home hemo who run 600.
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That which does not kill me only makes me stronger - Neitzsche
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mikey07840
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« Reply #14 on: April 14, 2008, 06:23:09 PM » |
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Hey Mark, Just wanted to say welcome! Mikey
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06/85 Diagnosed with type 1 Diabetes 10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma) 02/08 Started Hemodialysis 04/08 Started Peritoneal Dialysis (CAPD) 05/08 Started CCPD (my cycler: The little box of alarms) 07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed 08/09 AV Fistula redone higher up on arm, first one did not work 07/11 Mass found on remaining kidney 08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma 12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma
• Don't Knock on Death's door; Ring the bell and run away. Death hates that.
• I'm not a complete Idiot -- some parts are missing.
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Romona
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« Reply #15 on: April 15, 2008, 01:44:04 PM » |
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kellyt
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« Reply #17 on: April 15, 2008, 02:56:41 PM » |
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1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT!
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angellady07
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« Reply #18 on: April 15, 2008, 04:04:04 PM » |
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Welcome Mark. IHD is a wonderful place for information and support.
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Ang
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« Reply #19 on: April 15, 2008, 06:06:05 PM » |
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live life to the full and you won't die wondering
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kidney4traci
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« Reply #20 on: April 15, 2008, 06:35:13 PM » |
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Welcome! Ex Californian myself - from Mountain View and Sacto. I am a Nxstager too, 5 x/wk at 2:15. It sounds like I am a little smaller than you, ha ha. Anyway, welcome...
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Married - three children. Alports female, diagnosed ESRD 10/04 11/04 Hemo in clinic 6/07 hemo at HOME! 2/3/09 - Transplant from an angel of a friend!!!
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