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Author Topic: I got a date  (Read 8356 times)
Charlie B53
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« on: April 11, 2017, 06:19:05 AM »

I got a Surgery date. Monday May 1st. The Scheduling Clerk and I have been playing phone tag for almost two weeks.  I have been procrastinating calling him back, Partly (?) mostly, from the fears (?) or not really wanting to do this.  But I know it is inevitable, and must be done.

I've never been kidney 'sick'. I started PD very early because of the emmense leg swelling, leaking, and those terrible infections.  My only other symptoms other than labs being off, are the terrible tiredness.  So it is difficult to admit to myself that I really must have this access done and keep going to Dialysis.

Since I have managed to get the Clinic to raise my dry weight high enough I still P regularly.  Not a great amount, but yet enough it still helps my labs, I'm sure.  I once was told my function was down to 4% and remained there for ovoer a year.  Last week I asked the Nurse why we haven't done a urine collection and labs, she said it isn't necessary.  They can calculate kidney function from other labs.  Oh Really?  She tells me mine is around 14%   WTF?   How can that be?  Kidneys do NOT come back!   Whatever, it isn't enough to stop Dialysis.
« Last Edit: April 11, 2017, 03:21:57 PM by cassandra » Logged
cassandra
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« Reply #1 on: April 11, 2017, 03:18:46 PM »

Hi Charlie I'm glad you've got your date. I copied this for your eGfr for you (kidney function)

eGFR is a test of kidney function. It uses the result of your Creatinine test with your age and sex to estimate an approximate percentage kidney function. eGFR is only an approximate number, but gives a better idea of kidney function than Creatinine alone. If you are of black African origin, you should add 20% to the figure (this correction is unlikely to have been made in the lab). Normal is over 90 ml/min/1.73m2. 'Normal' eGFR is the same for all ages and for men and women. Calculating eGFR doesn't make sense in patients on dialysis. If you are on dialysis and an eGFR is shown, ignore it.

Mine was 11 last July and I have no kidneys what so ever since '03 (I was 5 yrs on PD and my dad's kidney still produced urine than. The kidney was removed during the sepsis and ruptured peritonitis episode) So it means nothing. I have no clue how or why they calculate it.
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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
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #2 on: April 11, 2017, 07:07:13 PM »


Surgery details have changed again already.  Scheduling called me again this afternoon to tell me Dialysis will be done AFTER my surgery.  So I will not have to be admitted the day prior.

I suspect Dialysis staff is only 'on call' over the weekend and does not appreciate any surgeon wanting them to actually come in if it isn't an immediate necessity.

Oh well, this will save my family from having to make a second trip as I am supposed to have a designated driver.  The VA does NOT allow anyone to be release and drive themselves home after receiving 'medication'. I usually have my Son go with me but since he has custody of his Son, and it is a school day, Wife will go with me.  I generally ALWAYS drive anyway, this time won't be any different.

I am wonder what will change before May 1.  There is lots that can happen by them.  Murphy's Law has struck me several times already.  I don't see this time to be any different.
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Michael Murphy
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« Reply #3 on: April 11, 2017, 10:06:14 PM »

Good luck Charlie I know every says it's minor surgery but when it's you it don't seem minor.  In the long run this will make hemo much safer don't be surprised that they give it some time to mature. 
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Charlie B53
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« Reply #4 on: April 12, 2017, 02:37:38 AM »


So far I'm told at the very least 6 weeks and more likely two months before use.  Will just have to wait and see.

I have the Belief that all things happen for a reason.  Most of the time I am just to stupid to understand 'Why'.   For reasons I may never know while in this life, God, in his infinite wisdom has decided that I need to do this in order to learn, something.  I know not what.  But the experience is sure to teach me something, if only the fact that I can live through the event.

I over-think everything.
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iolaire
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« Reply #5 on: April 12, 2017, 05:43:49 AM »

fistula surgery?
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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.
Blake nighsonger
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« Reply #6 on: April 12, 2017, 06:22:27 AM »

Thanks Charlie B53 that's agood one , me too.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: April 12, 2017, 07:25:13 AM »

fistula surgery?

Yes Iolaire a fistula surgery.
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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
2020 start Gambro AK96

       still on waitinglist, still ok I think
Rerun
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« Reply #8 on: April 12, 2017, 08:49:50 AM »

I will be praying for your Charlie.  You will do fine.   :cuddle;

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LorinnPKD
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« Reply #9 on: April 12, 2017, 10:13:49 PM »

Sending you all good wishes, Charlie!  You've got this. :)

But please have a designated driver and be safe! :)
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Jean
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« Reply #10 on: April 12, 2017, 11:13:38 PM »

 Best wishes for you Charlie, it will be fine in the end. Every time I go to the Dr. I think " this is it". Someday my time will come too, just like you and the rest of us. I dont know your age, but did you decide to have Hemo on your own, or under Drs. advice? Due to my age, I decided to do in center Hemo.
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One day at a time, thats all I can do.
kristina
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« Reply #11 on: April 13, 2017, 05:59:11 AM »

Good luck to you Charlie !  I send you my best wishes and keep my fingers crossed for you !
All the best 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 ...
MooseMom
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« Reply #12 on: April 15, 2017, 04:27:34 PM »

Best wishes to you!  Please do keep us updated, OK?
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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."
Charlie B53
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« Reply #13 on: April 16, 2017, 05:44:30 AM »


I started on PD as I saw how well it was working for my Mom.  She was on PD a bit over 2 years but refused to see a Cardiologist.  Her attitude was she was old enough, had done enough, and wasn't going to have any surgeries or do much of anything other than take her pills and do PD.  A heart attack killed her.

I did PD a little more than 3 1/2 years and all went very well.  Good labs, I could eat and drink freely with NO restrictions.

I rushed a little too fast setting up one night.  I had to have 'touched' a fitting and the resulting infection from Hell just would NOT clear with extended antibiotics.  My cath had to come out.

After a rough couple of months because the clinic wanted my dry far too low, I am doing far better.  I find I enjoy all the free time I have in the evenings again and compared to the dietary restrictions I much prefer to be free to be out and about rather than inside tied to a machine.

I may change my opinion when Winter rolls around and it's dark all the time, and the cold forces me to stay inside.

But isn't most of Life about making Choices like this?
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Charlie B53
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« Reply #14 on: April 29, 2017, 04:05:58 AM »


VA Scheduling called.  I got a short 'stay of execution'.  One hour.  I am now second on Monday's schedule.

Oh Boy!  I can stay up eat and drink until 1 a.m. instead of Midnight.
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kickingandscreaming
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« Reply #15 on: April 29, 2017, 04:25:28 AM »

I'm sure that extra hour of "debauchery" will make ALL the difference.  :sarcasm;

I wish you well on Monday (and thereafter).
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #16 on: April 29, 2017, 07:23:05 AM »

Gram Neg, Gram Pos, or fungal?
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LorinnPKD
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« Reply #17 on: April 29, 2017, 10:05:07 AM »

Hey, good luck on Monday.  You'll do great!

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cassandra
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When all else fails run in circles, shout loudly

« Reply #18 on: April 29, 2017, 10:12:55 AM »


Yup you'll do great Charlie!    :thumbup;

Will be over before you know it


Love, luck and strength, 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
OldKritter
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« Reply #19 on: April 29, 2017, 12:55:53 PM »

Good luck and best wishes.

Don't think you will need the 'luck' because everything will be OK, but you still get the 'best wishes'
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kristina
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« Reply #20 on: April 30, 2017, 10:09:58 AM »

Thinking of you and wishing you good luck for tomorrow (and thereafter)...
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 ...
kickingandscreaming
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« Reply #21 on: April 30, 2017, 11:35:23 AM »

Keep us posted, Charlie..  And good luck.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #22 on: April 30, 2017, 04:53:22 PM »


Those left-over pork chops from last night aren't likely to make it through the night!

I may splurge and stick a sweet potato in the microwave.

And in the morning I am allowed a small drink to take my morning pills, maybe I'll use water, after it drips out of the coffee maker.

I'm usually up by 4, so I'll just take my pills two hours earlier than my usual pill time at 6.  It will be long gone by the time they knock me out as that won't be until at least ten.

I'll be fine.  Other than the wound the Dr will create.  But I usually heal well.  Surprises the Dr's how well.  They claim diabetics don't heal well at all.  This would be a great spot for a sarcastic  Pffffffft!

I an NOT Normal.

Never have been.

Never will.
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Charlie B53
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« Reply #23 on: May 02, 2017, 05:24:58 AM »


After getting pushed further and further back on the schedule, priorities, Dr left gone across the street to Uni Hosp for emergency over there.  He finally came back and the knocked me out about 11:30 and got me done.

Neat lazy backwards S right at the inside of my elbow.  I was surprised there is no dressing over it.  Seems he/They stiched the insides then glued all the outside surface together.  Doesn't leak even a drop.

Nurse marked an X just above where I can check my 'thrill'.  This is definately a strange sensation.  One I've never experienced before.

It was a fistula.  I am told it could easily be at least two months before it matures well enough for use.  Just have to wait and see.

They didn't even give me a squeezy thing.  My Clinic told me they would.

Dialysis afterwards there at the VA, soo it was almost 7 in the evening before we got out of there and headed home.

Dau called.  My Wife wsn't feeling 'Right' so Dau took her to her Dr.  They ran and EKG and told her to f=go to the ER.  So Son and I went straight from the VA Hosp to St Lukes Hosp to find out what was going on.  Lots more "hurry up and wait' there.  They are not sure what is going on and will be doing testing this a.m. to try to find answers.  I personally believe a large part of her problem is that qwap the FDA allows people to consume as 'sweeteners'.  She guzzles Diet Coke or tea with Splenda all day.  Very rarely EVER takes a drink of water.  She has spent most of the last 5 MONTHS sitting either on the couch or chair since losing most the sight in her right eye.  I don't doubt for a minute that depression contributes much to her problems.  She won't admit much of anything.  Hard headed Missouri Woman.

I am letting Dau sleep in a bit before we head back to the Hosp to be with her.
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LorinnPKD
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« Reply #24 on: May 02, 2017, 10:29:37 AM »

You might get the squeezy thing at the checkup -- you gotta heal up a little bit first before you can squeeze! :)

Do you have a checkup scheduled in the next week or two?  My neph gave me the squeezy thing, but you can also pick up a soft squeezy ball or some putty to play with.

I hope your wife is doing OK!

My thrill actually vibrates.  Sometimes it's so strong and feels really weird when I rest my arm on a table and it's all BZZZZZZZ!

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