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Author Topic: hard holidays  (Read 1853 times)
jennyc
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First day of school 08'

« on: January 08, 2010, 05:10:46 AM »

Hi guys, haven't been around much lately. Things went pretty much from bad to worse over the holidays and i need to rant a bit. Man i can't wait to get onto hemo now.

Well basically i've been getting overloaded without knowing it becuase my weight has been staying the same (well, as far as i knew). For some reason things all went wrong at once.

My GP tested me for fluid retention in the legs etc cause i was having trouble breathing (xmas eve) and there was NO sign of retention/edema. Xray showed it was all sitting in my lungs. For over a month my heart rate had been really high (over 100 b/min resting). On Xmas day i ended up in hospital with potassium of 6.4 (never had a problem before in 7 years, they think it was becuase i was on ace inhibitors for the week prior), lungs full and heart rate up to 142 beats per min (resting).

Basically my kidneys (what was left) have pretty much packed it in. In one week i went from passing almost 2lt a day to 150mls (it stopped pretty much on cmas day) but the kicker is, i apparently have an over active thyriod, so whilst my scales were reading 68kgs the whole time i was loosing weight and gaining fluid (none of which went to my legs, but straight to my lungs).

I managed to take off almost 3kgs in fluid and now i'm literally watching myself loose weight (yeh i know what a shame, but i'm thinking the stupid thyriod issue is what killed my residual function) i'm really careful with my fluid, i can take off upto 1.2lt a day but i'm only drinking about 900mls-1.1lt so i have to really watch what i'm taking off. Thanks to the xmas hols my fistula still isn't fixed, the surgeon gets back on monday so i'm ringing at 8.30am when the secretary get in.

So i'm on Inderol (?) and lasix and they've upped my pd perscription. but the thyroid is only a guess at this stage, at least the tablets are keeping my heart rate below 100 (93-99 b/min) and with them i can't take any BP meds cause i drop way too low.

anyway needed to let off a bit of steam, apart from that had a good holidays, hope your xmas and new year was good!
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2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
willowtreewren
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My two beautifull granddaughters

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« Reply #1 on: January 08, 2010, 05:30:50 AM »

So let's start this year off getting better, huh?

The fluid issue is serious. Have you had your PTH levels checked recently? My husband has had a time getting his down. It took a year of tweaking his meds, but his PTH levels are finally within acceptable range.

Sorry you had to go through this.  :cuddle;
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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. :)
jennyc
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First day of school 08'

« Reply #2 on: January 08, 2010, 05:39:51 AM »

thanks Willow,

Yeh my pth is slowly going down, Dr check PTH religiously, it is one of his pet peeves (he's a really good neph, i'm kinda blessed. acutally haven't come across a bad one in my whole area) .i'm responding well to the sensipar but my calcium is apparently really low so i've self upped my caltrate hoping the high heart rate is from that and not a thyroid problem.
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2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
monrein
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Might as well smile

« Reply #3 on: January 08, 2010, 10:45:12 AM »

Hoping that things get back under control and that 2010 will have you feeling better.   :grouphug;
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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
cdwbrooklyn
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« Reply #4 on: January 08, 2010, 01:13:58 PM »

Sorry to hear your holidays were not what you wanted.  Going forward your situation will get better for 2010 because you are on top of what's happening.   

I have experienced that difference types of meds can make your Potassium high.   So meds are known to have  small amount of potassium in it.   You can increase your calcuim 1000mg a day to accommodate the high potassium.   When you start dialysis, your potassium level will drop some because your blood is being clean as well as some fluid being taken off.   Also, check out the side effects from each meds to see if it's causing you to have shortness of breath.  Some meds are known to do that as well.   Most of the time your problems are coming from the meds' side effects.   

Hope this helps a little; however, 2010 will be much better for you.  :2thumbsup;

CDW 8)
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
kristina
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« Reply #5 on: January 08, 2010, 01:16:28 PM »

I do hope things get better for you soon
and I am sorry that you had such a bad time.
Good luck for 2010 with best wishes from Kristina.  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #6 on: January 08, 2010, 01:18:25 PM »

I know how you feel cos my fluid always went straight to my lungs too - never in my legs.  Watch out for that.  Hope thinks improve soon.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
jennyc
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First day of school 08'

« Reply #7 on: January 09, 2010, 12:40:32 AM »

Sorry to hear your holidays were not what you wanted.  Going forward your situation will get better for 2010 because you are on top of what's happening.   

I have experienced that difference types of meds can make your Potassium high.   So meds are known to have  small amount of potassium in it.   You can increase your calcuim 1000mg a day to accommodate the high potassium.   When you start dialysis, your potassium level will drop some because your blood is being clean as well as some fluid being taken off.   Also, check out the side effects from each meds to see if it's causing you to have shortness of breath.  Some meds are known to do that as well.   Most of the time your problems are coming from the meds' side effects.   

Hope this helps a little; however, 2010 will be much better for you.  :2thumbsup;

CDW 8)


Your not going to believe this, i am on dialysis..... I'm on PD but it's failing so its a whole other kettle of fish. I'm waiting for the surgeon to get back from holidays cause my fistula has a narrowing. Pd is almost totally useless now. My creatinine hinges around 1100 (when i haven't eaten.... hate to see it after food.) my urea is around 30 ish but only cause i do 5 bags.

Anyway.... enough whinging. I'm here that's what counts. I really can't wait to start hemo, i want to be able to head straight to home training rather than clinic. Just hoping i can
Logged

2003 January - acute renal failure
        March/April - Started PD
2009 October - PD failing, First fistula put in.

Cadaveric Transplant 27/1/2010
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