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Author Topic: Dazed and confused  (Read 37253 times)
MooseMom
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« Reply #50 on: November 20, 2016, 02:08:02 PM »
Thanks, Kristina and k&s.  I'll see what my coordinator has to say.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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« Reply #51 on: November 20, 2016, 02:15:31 PM »
Great news MM, pleased to read that. You must be so relieved.

When I had dad's kidney I'm pretty sure I took 1 dose of Amlodipine in the morning and 1 dose of Irbesartan before bed. I also had Lisinopril at some point.
So basically what Christine does. BP 2x a day after I'd had time to sit for a few minutes.

I was always taught that BP is best to be stable through the Day, so I'd think after taking your BP 4 times for a few days, you'll know what time of day your BP is raised, so maybe you could than work out the best times for you to take the BP meds.

Love, luck and strength, Cas
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #52 on: November 20, 2016, 06:14:43 PM »

I have learned I have to take my lisinopril in the evenings.  If I take it in the mornings then the med combined with the heat of the day during warmer weather I get those dizziness spells rising after bending over to pick up sticks in the yard.   Taking the med evenings that doesn't happen.

I have to think the major amount wears off before the heat of the day rises too much.   Whatever.  Nurse made the suggestion to shift what time I tooki it and it is working, so I will keep on that schedule until I'm told different.
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lainiepop
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« Reply #53 on: November 21, 2016, 06:34:00 AM »
Hi MooseMom so pleased to see your news! Well when i got back from work today there was a message from tx nurse saying all is fine. Tac level 6.2 and creatinine 84. So all stable. They were never worried but u know i do. Just thankful it did not rise again i was so anxious and sure it would last night! So maybe i need to stop worrying. Can look forward to christmas now no clinic til january although guess will get a call if my bp test showed high readings. But not bothered about that too much! Xxx






sp mod Cas
« Last Edit: November 21, 2016, 06:41:34 PM by cassandra » Logged
1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
MooseMom
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« Reply #54 on: November 21, 2016, 07:30:35 AM »
Quote from: lainiepop on November 21, 2016, 06:34:00 AM
Hi Moose mom so pleased to see your news! Well when i got back from work today there was a message crom tx nurse saying all is cine tac level 6.2 and creatinine 84. So all stable. They were never worried but u know i do. Just thankful it did not rise again i was so anxious and sure it would last night! So maybe i need to stop worrying. Can look forward to christmas now no clinic til january although guess will get a call if my bp test showed high readings. But not bothered about that too much! Xxx

This Thursday is Thanksgiving Day here in the US.  Maybe you and I can take a moment to think of each other and to be grateful that both of us are stable for the moment.  And maybe we can both try to find a way to better cope with our fears that are always there, just under the surface.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
lainiepop
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« Reply #55 on: November 21, 2016, 08:26:16 AM »
Will do. Keep us all updated with everything. Do u use facebook? Xx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
MooseMom
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« Reply #56 on: November 24, 2016, 04:23:12 PM »
(Lainiepop, I do use FB but not often.)

I have one last question.  I'm going to see my PCP on Tuesday, but in the meantime, I'm wondering if any of you might have some thoughts about this one issue...

I take my bp now several times a day, and it is fine.

However, I am feeling several kinds of discomfort in my now ligated fistula.  It feels like some of the blood vessels in my upper arm got all bruised or tight or injured when my bp went so high (which I'm now suspecting was due to extreme anxiety).  It feels like it did before it was ligated 2 years ago, all sore and "pinched" in places.  My arm feels OK when I wake up, but as the day goes on, it gets sore.

Is it possible for blood vessels to be injured during a "hypertension episode" (I don't know what else to call it.)?  Do you think this will go away on its own, or do you think a vascular surgeon might need to see it?  Any thoughts?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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« Reply #57 on: November 25, 2016, 04:53:26 AM »
To be honest, I would have it looked at, at least have an Ultra sound scan if poss.

Love, Cas
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #58 on: November 25, 2016, 08:30:33 AM »
Cas, I'm pretty sure that's what my PCP will say.  But does this make sense?  Can an episode of high bp (as opposed to chronic hypertension) damage the blood vessels in a ligated A/V fistula?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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When all else fails run in circles, shout loudly
« Reply #59 on: November 25, 2016, 03:12:22 PM »
MM, I actually think it could, it sounds logical that extra pressure (the hypertension) on a weak spot in veins which are compromised in some way like a fistula or a ligated fistula, would cause at least some bruising (little burst vessels) If the Hypertension period would last a longer time I could imagine 'growing' collateral veins too.

Just my thoughts though. So wouldn't it be interesting to find out if that really is the case? So if you happen to be bored out of your brain, and fancy a visit to hosp, and waiting around for probably hours, we would all find out  ;D

But to be serious, if the pain is not subsiding tomorrow, I would have it checked out. If the pain is subsiding I would ask on Tuesday.

Any change yet?

Love, Cas
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #60 on: November 25, 2016, 07:18:33 PM »

I'd be curious to see if there is any measurable swelling, a difference between say morning and night, or 'no pain' and again once in pain.  se a string or measuring tape in a couple of areas.  I would have to write down the measurements as I can't remember spit.

If nothing else it may provide more information for the Dr's.
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willowtreewren
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« Reply #61 on: November 26, 2016, 08:32:51 AM »
MM, Carl had his fistula tied off because it was so huge, it posed a health risk. Then he got an aneurysm above the old fistula. He had to have the whole vein in his upper arm replaced.

I hope yours will be an easier fix, but DO get it looked into.  :cuddle; :cuddle;

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. :)
MooseMom
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« Reply #62 on: November 26, 2016, 01:57:42 PM »
Charlie, I am keeping notes on when the discomfort is at its worst. I'll consider measuring although frankly I cannot see any enlargement.  Believe me, I've been looking!!

WTW, how did Carl know he had an aneurysm?  Did he feel something?  Did he see something?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Wat76
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« Reply #63 on: December 02, 2016, 04:20:08 PM »
Hi Moosemom, Sorry to hear that. All will work out for you,
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MooseMom
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« Reply #64 on: December 03, 2016, 08:13:10 AM »
Wat76!!!!  It's really good to "see" you again!!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Wat76
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« Reply #65 on: December 03, 2016, 01:50:19 PM »
Hi Just a quick update, I am doing well and still doing PD.  I had gotten totally overwhelmed and had to withdraw from the forum.  Then I forgot my password to log into the web  site. So far I am hanging in there and I have been traveling a lot.  I retired from the government last December and hubby and I are just enjoying life.  I truly missed this forum and I am so glad to catch up.  Will give a general Intro again since I have been off for so long.  I continued to keep everyone in my prayers even though I was not logged in.  Well hope you are enjoying the holidays.
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PKD: PD started in February 2011.
Live, Laugh and Love daily.
MooseMom
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« Reply #66 on: January 31, 2017, 01:49:07 PM »
I had my latest lab results today, and my creatinine has remained at 1.35.  No worse but no better.

My bp is now and has been practically perfect in every way since I last posted.

The bottom line seems to be that after being stable at 1.1 to 1.2 for some time, I now seem to be stable at a new normal, that being between 1.3 and 1.4.  Does this sort of story sound familiar to any of you?  Does any one have any ideas on why there would be a sudden uptick in creatinine, an "uptick" that becomes a "new normal". 

My coordinator isn't bothered; she still describes my numbers as "excellent" and reminded me of how many patients she has that would love to have a creatinine of 1.35.  I guess it is good to have some perspective.

Still, I'm curious.  Thanks for any thoughts/theories.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
willowtreewren
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« Reply #67 on: January 31, 2017, 06:23:38 PM »
Sorry for the late reply MM. Carl knew he had an aneurysm because he is very thin and he could see the blood vessel bulging under his skin around the elbow area just above where his fistula had been tied off.

He is 6 years post TX, now. All is going fairly well for him.

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. :)
MooseMom
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« Reply #68 on: January 31, 2017, 07:21:02 PM »
Thanks for that, wtw!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Simon Dog
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« Reply #69 on: February 01, 2017, 11:58:08 AM »
The thing to watch is the trend.

In my pre-D days I heard the same thing "Tiny uptick from last visit, not significant, nothing to worry about at this time."   But, when plotted as a graph the trend was undeniable, so I biopsy and started making longer term plans.
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MooseMom
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« Reply #70 on: February 01, 2017, 04:31:49 PM »
Thanks for that, Simon Dog.  Yes, I remember those pre-d days and having to watch for trends which were inevitably downward!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
lainiepop
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« Reply #71 on: February 14, 2017, 02:57:04 PM »
Hi Moose m0m how r things now? I realised i commented on this thread before when i was having issues and am having some again! My tac level has been low again so they upped it at clinic (creatinine 87) after upping 2 weeks later tac level still too low creatinine 90 and so upped again had another blood test a few days ago now need to call tomorrow for results am dreading something being wrong u know how i worry. Xxx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
MooseMom
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« Reply #72 on: February 14, 2017, 03:29:57 PM »
Quote from: lainiepop on February 14, 2017, 02:57:04 PM
Hi Moose m0m how r things now? I realised i commented on this thread before when i was having issues and am having some again! My tac level has been low again so they upped it at clinic (creatinine 87) after upping 2 weeks later tac level still too low creatinine 90 and so upped again had another blood test a few days ago now need to call tomorrow for results am dreading something being wrong u know how i worry. Xxx

Well, that's really odd (or, maybe it isn't).  I don't know why your tac level would suddenly be too low; you'd think it would be pretty stable this far out from tx.  I mean, it's been since 2012, right?  But then again, I guess this is why they check it so often!  Does your tx team have any explanations?  Interesting how our tx teams don't seem concerned whereas you and I are always worried!  I guess maybe they have a wider perspective than we do.

I'd love to just tell you, "Oh, don't worry", but that would make me a hypocrite because I know I'd be worried just as much as you are!  I'll be thinking of you tomorrow, so please let me know your results, OK?  (But only if you feel like it and have the chance to post).  Oh, I can feel the dread crossing the Atlantic.  Urp.  Gives me a jippy tummy just thinking about it, ya know? 
« Last Edit: February 14, 2017, 03:35:13 PM by MooseMom » Logged
"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
lainiepop
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« Reply #73 on: February 14, 2017, 03:38:06 PM »
Thanks moosemom. Reading my last post on this thread when they upped it before christmas it was 6.2. At clinic a few wjs ago it was 3.9! So upped by 0.5mg and bloods showed gone to 4.5 but they want it above 5 so another .5 was added. Havebeen taking 3mg twice a day now. They don't kniw wht it changes. I remember them once saying it depends how well your liver works so the better it wirks the faster it metabolizes the drugs? Guess my liver is working really well, at least ine part if me does 😂😂. We didn't end up going to Berlin in theend at christmas (thankfully seeing as they had the terror attack at a market we planned to go to!) flight cancelled due to severe fig, managed to get all our money back so stayed in london with steve's parents instead and went to see Frozen on ice and charlie and the chocolate factory. Hope u had anice christmas xx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
MooseMom
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« Reply #74 on: February 17, 2017, 10:55:55 AM »
I hope your latest labs were OK, lainiepop.  :pray;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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