I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Charlie B53 on April 11, 2017, 06:19:05 AM

Title: I got a date
Post by: Charlie B53 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.
Title: Re: Re: So what would you do
Post by: cassandra 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.
Title: Re: I got a date
Post by: Charlie B53 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.
Title: Re: I got a date
Post by: Michael Murphy 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. 
Title: Re: I got a date
Post by: Charlie B53 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.
Title: Re: I got a date
Post by: iolaire on April 12, 2017, 05:43:49 AM
fistula surgery?
Title: Re: I got a date
Post by: Blake nighsonger on April 12, 2017, 06:22:27 AM
Thanks Charlie B53 that's agood one , me too.
Title: Re: I got a date
Post by: cassandra on April 12, 2017, 07:25:13 AM
fistula surgery?

Yes Iolaire a fistula surgery.
Title: Re: I got a date
Post by: Rerun on April 12, 2017, 08:49:50 AM
I will be praying for your Charlie.  You will do fine.   :cuddle;

Title: Re: I got a date
Post by: LorinnPKD 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! :)
Title: Re: I got a date
Post by: Jean 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.
Title: Re: I got a date
Post by: kristina 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;
Title: Re: I got a date
Post by: MooseMom on April 15, 2017, 04:27:34 PM
Best wishes to you!  Please do keep us updated, OK?
Title: Re: I got a date
Post by: Charlie B53 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?
Title: Re: I got a date
Post by: Charlie B53 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.
Title: Re: I got a date
Post by: kickingandscreaming 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).
Title: Re: I got a date
Post by: Simon Dog on April 29, 2017, 07:23:05 AM
Gram Neg, Gram Pos, or fungal?
Title: Re: I got a date
Post by: LorinnPKD on April 29, 2017, 10:05:07 AM
Hey, good luck on Monday.  You'll do great!

Title: Re: I got a date
Post by: cassandra 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
Title: Re: I got a date
Post by: OldKritter 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'
Title: Re: I got a date
Post by: kristina 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;
Title: Re: I got a date
Post by: kickingandscreaming on April 30, 2017, 11:35:23 AM
Keep us posted, Charlie..  And good luck.
Title: Re: I got a date
Post by: Charlie B53 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.
Title: Re: I got a date
Post by: Charlie B53 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.
Title: Re: I got a date
Post by: LorinnPKD 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!

Title: Re: I got a date
Post by: MooseMom on May 02, 2017, 11:11:44 AM
Good grief, you've had quite the day!  I'm very glad you are OK and hope your wife will be, too.  Thanks so much for the update!
Title: Re: I got a date
Post by: Charlie B53 on May 02, 2017, 12:32:10 PM

Lots of hurry up and wait in her hospital.  She just now got back to her room from the echo-cardio stress test that I told her about the other day.  Probably won't learn the results until Dr comes around tomorrow morning.

Tomorrow she is scheduled for an endoscopy hoping to learn the cause of chronic indigestion and vomiting.

Hopefully the Psych will also be in tomorrow as I Believe most of her problems are associated with the depression caused by her vision loss.

Free coffee in the floor waiting room.  I may have to go see about a cup.  I haven't had anything to drink other than that morning cup this morning.
Wondering if Elevil is still in use. Wonder if that will lift her spirits.
Title: Re: I got a date
Post by: cassandra on May 02, 2017, 01:00:25 PM
Very glad to hear all went well Charlie. I hope your wife will improve soon.

Love, luck and strength for the both of you, Cas
Title: Re: I got a date
Post by: PrimeTimer on May 02, 2017, 03:46:05 PM
Is it a full moon? Mercury retrograde?? Fistula surgery, wife in ER and our other member Cas falling ill...WTH is going on? Glad your fistula surgery went okay, please keep us posted on the wife. Sending you positive thoughts and prayers now!  :pray;
Title: Re: I got a date
Post by: Charlie B53 on May 02, 2017, 06:56:05 PM

Sorry, moon was less than half last night.

I looked.
Title: Re: I got a date
Post by: MooseMom on May 03, 2017, 07:47:31 AM
Is it a full moon? Mercury retrograde?? Fistula surgery, wife in ER and our other member Cas falling ill...WTH is going on? Glad your fistula surgery went okay, please keep us posted on the wife. Sending you positive thoughts and prayers now!  :pray;

Whatever cosmic thing is going on, I don't like it!!
Title: Re: I got a date
Post by: Charlie B53 on May 03, 2017, 09:02:46 PM

Wife came home this afternoon. No explanation for the strange EKG as the EchoCardio was actually better than her last one by a little bit.

Psych did see her and talked about her depression.  Increased her Prozac a little and added something to help her sleep.

Will have to wait and see how she does.

My arm is tender in places but no leaks.  I suspect the muscle in the forearm tenderness is swelling from internal leakage from the surgery.  I expect it to start getting better in just a few days.  Got me a squeezy 'bean' and a ball.  Now I need to get in the habit of using them to help develop my fistula quicker, better, stronger, faster, etc..

Title: Re: I got a date
Post by: LorinnPKD on May 03, 2017, 10:06:50 PM
Mercury retrograde just ended May 3, thank goodness!  Things have been bonkers since April 9, and it's too many things to be coincidence.

Charlie, are you cleared to use the squeezy?  I had to wait like a week before using so I had time to heal first.
Title: Re: I got a date
Post by: cassandra on May 04, 2017, 02:00:00 AM
Good to hear Charlie.

   :flower;


Love, luck and strength to you and you wife, Cas
Title: Re: I got a date
Post by: iolaire on May 04, 2017, 05:10:42 AM
I hope things settle down for you.  As someone with a chronic condition but a wife with no issues I fear a little bit should she start to have her own medical issues. 
Title: Re: I got a date
Post by: kickingandscreaming on May 04, 2017, 05:24:05 AM
Speedy and complete recovery for both of you.  Take good care.
Title: Re: I got a date
Post by: Charlie B53 on May 04, 2017, 07:42:19 AM
She did give in and took the new sleeping pill last night.  I see this morning that sometime during the night she again took off her CPAP, she does that a lot, claiming it 'bothers' her. And as I was getting up she was making noises, I think she is dreaming and talking to someone.  So I expect tonight she will either refuse the pill or have me cut it in half.

I need to get her to try one of the other types of CPAP 'masks' instead of the nasal pillow that she currently has.  There are a few different masks, some being far more comfortable to some people than others.  You got to find what 'fits' you best in order to sleep comfortably.  She hasn't tried anything other than the one she has.  I switch between two of them depending on how my nose feels.  Allergies sometimes crop up and make it half tender.  Never causing any runnyness.  Mine are all post-nasal drip, discharge, however you want to describe it.  I'm weird.

Lorin said something about being 'cleared' to use the squeezy.  No one has mentioned any restrictions other than lifting or strong/heavy exertion.  I won't strain very hard.  Once upon a time long ago when I played football I kept a hand spring thing with me.  That sucker was tough.  I did sets of 100, then switched hands and did it again.  I couldn't tell you how many sets I did every day.  Suffice to say though, If I so much as got my hand on a player, he was mine. I could squeeze a bathroom scale with both hands to over 400.

That was long ago.  Now I am a punk/whimp. I might be lucky to squeeze maybe 150 on a good day.  Not today.






sp mod Cas
Title: Re: I got a date
Post by: MooseMom on May 04, 2017, 08:09:30 AM
It must be a real strain for both of you to have medical issues.  I hope your wife finds a gizmo that will suit her and thus make her more amenable to using it.  When you are not sleeping well, everything looks bleak.  There is a reason that sleep deprivation is a torture tactic.
Title: Re: I got a date
Post by: LorinnPKD on May 04, 2017, 09:39:02 AM
I wasn't allowed to lift more than 10 pounds for the first week.  Ten pounds is nothing, hardly even moderate.

Charlie, please don't use the squeezy yet until you ask them to be cleared for it.  I'm worried for you.
Title: Re: I got a date
Post by: MooseMom on May 04, 2017, 12:37:51 PM
Before I had my fistula created, I already knew that I would have to squeeze a ball or something to help my fistula mature, thanks to information I found on IHD and other sites.

So, my husband kindly bought me two brightly colored squeezy balls.

After my fistula was created, I asked when I could begin the squeezing.  I was told it was unnecessary but, rather, I should just carry on as usual, short of lifting more than 20 pounds with that arm once it was sufficiently healed.

I was really surprised as this went against all I ever read.

But sure enough, my fistula matured quickly.

So, now I am a bit skeptical about the whole fistula exercising thing.  I suppose it can't hurt, but I'm not sure it is essential.  It wasn't for me, that's all I can say.
Title: Re: I got a date
Post by: cassandra on May 04, 2017, 02:31:55 PM
She did give in and took the new sleeping pill last night.  I see this morning that sometime during the night she again took off her CPAP, she does that a lot, claiming it 'bothers' her. And as I was getting up she was making noises, I think she is dreaming and talking to someone.  So I expect tonight she will either refuse the pill or have me cut it in half


I'm glad to hear she's sleeping Charlie. And you could maybe compromise on 3/4.

Love, Cas