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Naynay99
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« on: August 19, 2020, 04:34:55 PM »

Hey. So LabCorp now has this portal where I can see my lab results right away, before my dr office contacts me about them.  And so I just looked at recent bloods.  BAD IDEA. Results were not good.

Creatinine went from 3.9 at last appt to 5!  I feel like walking into traffic. 
Being immunocompromised and high risk already makes living in covid-USA pretty tough, feeling irrelevant and expendable.  Then my work said they canít accommodate me to work at home (even tho some kids are!) so my only option is to take a FMLA leave of absence.   And now my kidney function is rapidly declining. 

Starting to wonder if I really even belong in this post-pandemic world.  Stuck in my house alone, with almost every aspect of my prior life changed or gone.  I really donít think I can handle dealing w having to start dialysis on top of everything else right now.

Sorry if this is not an appropriate topic to discuss here.  Iím just kind of worried that I am going to go crazy and off myself one of these days... and I didnít have anyone to say it to.  I have to be careful how I word things to my therapist so I donít get kicked off the tx list for being too mentally ill. 

Iím not looking for advice, just wanted to rant a little bit.   No need to freak out or anything- Iím not actively suicidal, just struggling with ideation. Depression is no stranger to me, even when my kidney was doing well Iíve dealt with it. 

But it all just seems like too much now and part of me just feels done...
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UkrainianTracksuit
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« Reply #1 on: August 19, 2020, 05:04:11 PM »

Oh honey, you can rant as much as you like. It is totally appropriate for anyone in your shoes. Overwhelming doesn't even begin to cut it.

This is exactly what this place is for so yes, this post does belong. Most of us have had similar thoughts during this journey and I'm sure it's all amplified with a freaking pandemic. Girl, you should have seen some of my opuses teetering on jumping in front of a tank back in the day. Still, despite how you feel, there is hope in your message because you said you don't want to get kicked off the tx list, so that shows something.

Come here and rant as much as you like. If you need entertainment at any time, just drop me a line. (I know that sounds bad, like 'for a good time call', but you know what I mean, I hope).
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Michael Murphy
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« Reply #2 on: August 19, 2020, 08:42:17 PM »

How do you feel, if the answer is good than ignore the lab results.  My doctor told me for 2 years it was time to start dialysis, I felt good so why should I start what I could tell was going to be a life changing process.  I got another 2 years of normal life before it was time.  I didnít push it past the point of damaging my health but till I had my first symptom of the need to start dialysis.  My advise is ignore your labs that is your doctors job.  And as long as you honestly feel fine it should remain your doctors job. About 7 years ago I met a receptionist at a hospital I was visiting and she was told the end of her kidneys was near.  She had a fistula installed and then waited.   When I met her it was 5 years from the time her nephrologist told her it was time. Finally dialysis is not the end of your life, basically itís a 3 day a week commitment leaving 4 days free every week to have a life.
Good luck donít let this beat you down itís not the end.
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Naynay99
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« Reply #3 on: August 19, 2020, 09:58:57 PM »

@Ukrainian tracksuit- thanks for the support. I may just take u up on your offer ďfor a good time, write...Ē  haha. That made me laugh.  Anyway thanks for making me feel like my reaction to all the crap is happening around me not seem so crazy. 

@MichaelM- u r right, labs r only one factor. I feel ďmehĒ. Not that great but not terrible.either.  I know dialysis isnít actually the end of your life but it sure feels like it...
I did all of this already.  Dialysis, transplant, needles, doctors  I was just a kid and living thru it all was traumatic as hell, and totally fuucked me up.  It sucks to be back here all over again, and due to being in the middle of a pandemic I am pretty much having to cope with it all alone.

Iíve had my tx kidney for 30+ years now, and thatís a hella lot of years of a mostly normal, sometimes kickass life.
And I just realized something- if I really did want to end it all, I wouldnít actually have to DO anything.  I could just stop taking my antirejection meds and wait...  And even on days when I feel like driving off a cliff, I still religiously take all my meds every am and pm, so I guess there is still some hope for me yet. 
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iolaire
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« Reply #4 on: August 20, 2020, 04:25:57 AM »

Sorry to hear of your stresses.  The new used kidneys are nice but they don't stop of lifetime of medical stress, toss some global, national, state, local, workplace, home stress on top of that and its understandable that its building.  Lets hope that Creatinine is just doing its normal jumping around.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: August 20, 2020, 07:04:14 AM »

Rant what you want dear, just asking if you may have been drinking less lately?


Love, Cas
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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
       still on waitinglist, still ok I think
Naynay99
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« Reply #6 on: August 20, 2020, 07:46:53 AM »

Thnx lolaire and cass...

Cass- I read ur message thru a haze of sleep and at first I though u were suggesting that maybe I wasnít drinking enough alcohol!!  Hahaha. 
Like maybe that would help!  Lol
(Not to worry- I donít drink!).
Is a good qs tho-  I donít think Iíve changed my intake of fluids but will keep an eye on it.  I know that can affect creatinine.

Latest bloods show I am anemic tho, which idk if that would make a difference?  Gonna go back to my old Procrit schedule and get my hemoglobin back up.  Maybe that will help me at least feel less tired. 
Talking to my dr prob tomorrow. 


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MooseMom
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« Reply #7 on: August 20, 2020, 07:48:57 AM »

On a practical note, I also have a "portal" in which I can see my lab results before my tx coordinator notices them, and I appreciate the time it gives me to prepare myself should she want to "discuss" anything.  But I know that feeling of shock and horror when you see a number that is, well, shocking.  It's a horrible, horrible feeling.

I don't find any of your feelings/reactions in any way surprising or "inappropriate".  Anyone would feel exactly the same.  You went through the wars when you were younger, you've had years of reprieve, and yet the battle is returning just when the battlefield has become far more treacherous.  It is daunting, and it is very hard to imagine having to muster the energy and willpower to fight that fight all over again.

I don't have any advice.  I don't know of any magic trick that could turn your fears into something more positive.  It takes a certain amount of energy to shift your mindset from your kidney toward something more pleasant.  Sometimes literally thinking about something else is the only defense one has, but that is hard to do 24/7.

I do feel so badly for you.  We all recognize that unique fear you are facing now, and I wish I had it in my power to make it disappear.

Like others have said, IHD is THE place to rant.  Take advantage of it all you like!
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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."
kristina
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« Reply #8 on: August 22, 2020, 01:57:57 PM »

Hey. So LabCorp now has this portal where I can see my lab results right away, before my dr office contacts me about them.  And so I just looked at recent bloods.  BAD IDEA. Results were not good.

Creatinine went from 3.9 at last appt to 5!  I feel like walking into traffic. 
Being immunocompromised and high risk already makes living in covid-USA pretty tough, feeling irrelevant and expendable.  Then my work said they canít accommodate me to work at home (even tho some kids are!) so my only option is to take a FMLA leave of absence.   And now my kidney function is rapidly declining. 

Starting to wonder if I really even belong in this post-pandemic world.  Stuck in my house alone, with almost every aspect of my prior life changed or gone.  I really donít think I can handle dealing w having to start dialysis on top of everything else right now.

Sorry if this is not an appropriate topic to discuss here.  Iím just kind of worried that I am going to go crazy and off myself one of these days... and I didnít have anyone to say it to.  I have to be careful how I word things to my therapist so I donít get kicked off the tx list for being too mentally ill. 

Iím not looking for advice, just wanted to rant a little bit.   No need to freak out or anything- Iím not actively suicidal, just struggling with ideation. Depression is no stranger to me, even when my kidney was doing well Iíve dealt with it. 

But it all just seems like too much now and part of me just feels done...

Hello and I am very sorry about your last labs and the fact that the results were not good. How is the ďusual trendĒ of your labs? Has it already been indicating a bad ďtrendĒ and/or is it just right now like that and could perhaps straighten itself out again?
What does your nephrologist say to your last lab-results? What action have they decided to take? Could you ask for another blood-test to find out more and what needs to be done? The medics surely want to assist and help you? I wish you all the best and good luck with your next blood-test and hopefully it was just false alarm.
Take care and 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 ...
okarol
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« Reply #9 on: September 03, 2020, 10:51:52 PM »

Hey. So LabCorp now has this portal where I can see my lab results right away, before my dr office contacts me about them.  And so I just looked at recent bloods.  BAD IDEA. Results were not good.

Creatinine went from 3.9 at last appt to 5!  I feel like walking into traffic. 
Being immunocompromised and high risk already makes living in covid-USA pretty tough, feeling irrelevant and expendable.  Then my work said they canít accommodate me to work at home (even tho some kids are!) so my only option is to take a FMLA leave of absence.   And now my kidney function is rapidly declining. 

Starting to wonder if I really even belong in this post-pandemic world.  Stuck in my house alone, with almost every aspect of my prior life changed or gone.  I really donít think I can handle dealing w having to start dialysis on top of everything else right now.

Sorry if this is not an appropriate topic to discuss here.  Iím just kind of worried that I am going to go crazy and off myself one of these days... and I didnít have anyone to say it to.  I have to be careful how I word things to my therapist so I donít get kicked off the tx list for being too mentally ill. 

Iím not looking for advice, just wanted to rant a little bit.   No need to freak out or anything- Iím not actively suicidal, just struggling with ideation. Depression is no stranger to me, even when my kidney was doing well Iíve dealt with it. 

But it all just seems like too much now and part of me just feels done...

Just wanted to send you some virtual hugs.  :cuddle; :cuddle; :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
charlesc
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« Reply #10 on: September 12, 2020, 06:23:02 PM »

Nay Nay 99

Dont fret over a renal panel, I always like to get mine as soon as possible and I log the imp. ones, creatinine, gfr. POTASSIUM and such. If any of those are out of wack this is the opportunity to immediately adjust my diet to counteract. To me this is a big deal.
Also a new med could drive up several of the numbers, particularly Creatinine.

Good luck and think positive. A good side is if , say Potassium is well within range perhaps some ICE CREAM would help!!!

CCC
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