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Author Topic: An Introduction from NZ  (Read 3969 times)
QCK5LVR
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What doesn't kill us, makes us stronger?
« on: February 18, 2011, 10:24:56 PM »
Hello everyone,

New to this Forum and came across it one night after searching the internet on information about Dialysis and a list of the many complications that can result from it.

Just a little bit of background history ... I was on Holiday for Christmas in 2009 and while on holiday I did the usual things a person does, ate ... relaxed, spent time with family, and drank copious amounts of alcohol (good times) ... I thought perhaps I had consumed a little too much soon after Christmas though because I didn't feel well, I brushed it off but thought to myself that three days was a rather HUGE hang over - I left it for a month but still felt very sluggish and not myself, I went to lay down and didn't wake up for two days. When I finally got to my feet I thought it was time to swallow my pride and visit a Dr. so I did. I sat in the hospital room and when I finally saw the Dr. the usual stats. were taken and the Doc was very surprised at my BP. infact three people had to take it with machines and manually ... my blood pressure was over 300 systolic and 200 diastolic my blood pressure was too high for manual machines. Feeling fine other than a little sluggish the entire medical team surrounded me with huge panic.

I was given a lot of blood pressure medication and they must have taken a good lot of bloods to test too ... needless to say though I felt fine, I was not.

The next day a central line was inserted and I commenced dialysis ... I think that I was in shock because I was signing papers left, right and centre ... I was introduced within half an hour to a dietitian, a psychologist, a health worker my primary nurse and a renal specialist ... when I got a moment to myself i looked around ... took it all in - saw there were so many old people around me and nobody my age ... it got me all worried. The first night after having dialysis I was taking a shower and just looked down at the line in my chest, looked at myself in the mirror and just cried ...

I had a fistula created in my lower arm near my wrist in October of 2010 and the first time it was used it was perfect I've only had one serious thing go wrong through fault of my nurse so I have decided to learn how to needle myself ... I have no problems with my arterial entry site but my Venus line is a little hard to place. Other than one scar on my wrist I have no visible signs that I am on dialysis and hope it stays that way. I'm on a kidney transplant list and although that frightens me I am also a little excited by it too ... gives a little bit of hope. Unfortunately in terms of having a transplant I have to wait for a deceased donor kidney as my entire family are female and the transplant team will not consider any of my sisters until they have finished all planned pregnancies.

I had what I thought was a perfect life ... good job, great home ... great friends in a city I liked. One blood test changed all that and there is still no answer as to what happened with my kidneys ... I must have seen every specialist in NZ and nobody can tell me why I now live dialysis day to dialysis day ... I look forward to my weekends because Sunday is a day I actually have enough energy to enjoy doing something ... My life is so restricted now, I have moved back with family (something I had never wanted to do since leaving home at 17) I can't work anymore because I don't' have the energy and I worked so hard to get where I was. I even have a cleaner because I sometimes can't clean the wing of the house that I live in now.

I never look forward to dialysis. I worry constantly something will go wrong. I suffer from major anxiety when dialysis is mentioned. I've never been in so much pain. I feel frustrated that my life seems to be at a stand still right now but a better description would be that well ... I just HATE DIALYSIS so I think I might be in the right place.

I'm looking forward to reading other people's experiences and hopefully having a few things in common with other people in my situation too.

Thanks.

 :stressed;
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Jean
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« Reply #1 on: February 19, 2011, 12:12:29 AM »
Wow, now that is an intro, very well written. We all feel your pain and the confusion and of course, the anger. You are not alone. Come here often, read, learn and make new friends. Oh, and BTW   :welcomesign;  to IHD.
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One day at a time, thats all I can do.
RichardMEL
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« Reply #2 on: February 19, 2011, 03:11:32 AM »
Welcome Kiwi Neighbour!

Well written introduction, though I really didn't like the story!

Sounds like maybe you had chronic failure happening for quite some time, and it got to the point where it was too much at the end of 2009. That's the horrid thing about kidney failure - it can sit there working away for years and you feel fine until you get low enough where it starts to affect you. My own condition was probably happening since I was a baby, but I wasn't diagnosed till I was 22.

I'm sorry you're in pain and D has caused you to have to quit work and move back with your family. I am somewhat surprised - being young and relatively healthy in a way you should have been OK to do other stuff I would have thought. I guess this underlines just how kidney failure can affect people differently.

Anyway welcome to IHD. I am sure you will fit in well - we look forward to your contributions!

RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
galvo
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« Reply #3 on: February 19, 2011, 03:54:04 AM »
G'day, mate, and :welcomesign;.
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Galvo
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« Reply #4 on: February 19, 2011, 05:19:23 AM »
 :welcomesign; to IHD.
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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
carol1987
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« Reply #5 on: February 19, 2011, 05:58:58 AM »
 :welcomesign;Welcome... this is a fantastic place for support and information!!
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
cattlekid
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« Reply #6 on: February 19, 2011, 06:06:10 AM »
Welcome!

I am new here myself and can relate to your situation.  I knew that I had IGA Neprophathy for 10 years.  However, I had no major symptoms - my blood work was always coming back just slightly elevated (creatanine 1.2ish) every six months.  I had no idea that my kidneys were failing until I went to a new doctor for migraines who suggested additional testing.  So somewhere between September and December of last year, my kidneys went kaput.  My neph is totally upset with himself - I told him not to worry, what was he going to do, put me on bloodwork once a week?? 

Like you, it was a whirlwind.  I just happened to call my neph on Monday, January 24 saying that I didn't feel so good, short of breath, have to sleep upright.  He told me - you need to meet me at the hospital first thing tomorrow morning, you'll start dialysis immediately.  So like you, I signed papers left and right and now here I am with a catheter and dialysis three days a week.  Transplant clinic intake meeting on 2/28. 

So welcome, hope we can be of help here.

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DrMoskowitz
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« Reply #7 on: February 19, 2011, 08:03:00 AM »
Welcome. I don't mean to belabor the point (please see my post to Rosa from Jakarta, Indonesia), but do you know any reporters in NZ? I've tried for years to go through official government public health and nephrology channels, like the Ministry of Health, the Australian and NZ Society of Nephrology, the NHS of both countries, that sort of thing. But nobody answers.

If my 2002 paper were generallly known, you'd have no waiting time for a kidney, and you'd be off dialysis by now. It's in patients' interests to make a fuss about http://tinyurl.com/healthcrime. If they don't, clearly nobody else will, and more patients will suffer.

Dave Moskowitz MD
CEO, GenoMed (www.genomed.com)
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David W. Moskowitz, MD, MA(Oxon.), FACP
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GenoMed, Inc.
"The public health company(TM)"
 
9666 Olive Blvd., Suite 310
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website: www.genomed.com

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peleroja
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« Reply #8 on: February 19, 2011, 08:49:09 AM »
Welcome to the group.  It seems to me if your BP was that high, no wonder your kidneys failed.  Mine failed from high BP also, but I never had readings like yours.  Yikes.  Glad you found us!
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QCK5LVR
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What doesn't kill us, makes us stronger?
« Reply #9 on: February 19, 2011, 10:26:12 AM »
Thank you everyone.
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looneytunes
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« Reply #10 on: February 19, 2011, 02:09:36 PM »
Hello QS and welcome to the group though sorry you have a reason to be part of us.   :welcomesign;  Great intro and I'm looking forward to seeing your posts.
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"The key to being patient is having something to do in the meantime" AU
Ang
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« Reply #11 on: February 19, 2011, 07:20:45 PM »
 :welcomesign; Aboard
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live  life  to  the  full  and you won't  die  wondering
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« Reply #12 on: February 20, 2011, 01:50:22 PM »
Welcome to An Australian as our sixth state. Only Kidding. I hope you get as much pleasure from IHD as I do, BTW, has anyone in NZ forgiven us yet for the underarm incident?
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Started Hemodialysis Anzac Day 2005
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Started PD New Year 2010
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willowtreewren
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« Reply #13 on: February 20, 2011, 02:29:25 PM »
Welcome, Quick!

This is a good place for answers and companionship!

 :waving;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
RichardMEL
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« Reply #14 on: February 20, 2011, 07:16:46 PM »
Of course NZ is our sixth state - that's why my kidney is named for Daniel Vettori and why we claim Russell Crowe when everuone loves him (and he's a kiwi when they don't!) and so on.... :rofl; :rofl; :rofl; :rofl; :rofl;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
QCK5LVR
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What doesn't kill us, makes us stronger?
« Reply #15 on: February 21, 2011, 01:57:36 AM »
Hey thanks everyone for your welcome messages ... I don't feel comfortable talking about dialysis around friends and or family as I feel like they pity and feel sorry for me so being here even just for a few days has already made me feel better about things ... so much so that I plan on becoming a premium member in the very near future.

On the cricket front ... I wasn't born when it happened so I hold no resentment against ya! My dad however ... well, that might be another story all together but then ... well he blames everything on your country so ... meh. I think our generation builds bridges ...

Just while I am at it ... I needled both my arterial and Venus today with 15Gs AND have a biomedical team arriving tomorrow to install my machine for home HD ... YES!
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RichardMEL
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« Reply #16 on: February 21, 2011, 03:13:23 AM »
That's very positive news - and of course I am very glad you will support our site by becoming a Premium Member!! Thank you !!! :2thumbsup; :yahoo;

RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #17 on: February 21, 2011, 09:43:39 AM »
:welcomesign; QCK5LVR! 

Boo! for dialysis but Yay! for home-haemo.  I hope it works out for you.

Quote from: QCK5LVR on February 18, 2011, 10:24:56 PM
Unfortunately in terms of having a transplant I have to wait for a deceased donor kidney as my entire family are female and the transplant team will not consider any of my sisters until they have finished all planned pregnancies.
Really?  I'm curious ... is this usual in NZ?  (I only ask because I'm currently going through the motions of being a live donor for my Blokey; we don't yet have children, but do want them and have no plans on getting pregnant till after the transplant [if it's given the go-ahead.]  My transplant team - and others associated with them - are happy for this, as long as we're aware of the risks.)
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
QCK5LVR
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What doesn't kill us, makes us stronger?
« Reply #18 on: February 21, 2011, 01:35:33 PM »
I would say it is the usual but I'm uncertain of other cases. According to my transplant team through my renal specialist as their proxy ... they will not consider females until after all planned pregnancies. I can understand this though as my sisters are all far too selfless and think of the wellbeing of other people before their own.

I hope all goes well for you and your partner ... and that the transplant work is succesful.
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RichardMEL
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« Reply #19 on: February 21, 2011, 07:47:05 PM »
Poppy I think that is a bit of a standard here in oz too - they spent a lot of time questioning my sister (she was like 38 when she first put up to donate) - they wanted to know if she wanted to get pregnant, if she thought she would soon, etc (remember at 38 the clock was well and truly ticking if she wanted to). Now she doesn't or didn't, but I think they were ready to discount her just because she still technically *could* become pregnant.

QCKSLVR - I hope you have not been affected by the latest earthquake to hit Christchurch!!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
karrye
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« Reply #20 on: February 23, 2011, 08:51:19 AM »
Welcome to IHD!! Glad to met you!  Just hang in there and over time I am sure you will get back your strenght and be able to do more as time goes by.  My husband is getting stronger everyday and he only started dialysis in December of 2010.  (You can read my posts under Caretaker and hating it).

Good luck and hopefully you get a kidney soon!
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Caregiver to husband:
Had surgery April 25, 2011 to bring fistula nearer to top of the skin.
Had staples removed from surgery on fistula May 3, 2011
Who started dialysis 1st week of December 2010.
Complete kidney failure November 30, 2010.
Surgery for 95% blockages in his right carotid and jugular February 22, 2011
Heart attack -- January 24, 2011
Chemotherapy -- September 2009 to April 2010
Colon Cancer -- April 2009
Colon removed --August 2009
Diagnosed with diabetes, Summer of 1996.
carol1987
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« Reply #21 on: February 23, 2011, 12:42:56 PM »
Hope you and your loved ones are OK!!  Been thinking of you since the quake hit... :cuddle;
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
willowtreewren
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My two beautifull granddaughters

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« Reply #22 on: February 23, 2011, 01:32:39 PM »
QCK5LVR

Everything all right where you are????

Been wondering.

 :pray;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
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