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daddyrat50
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Taking one day at a time

« on: May 21, 2016, 08:53:50 PM »

Hello, My name is Mike and my nickname daddyrat that was my cb handle i used while i was trucking till this dreadful disease ended my 22 yr career. I am 50 yrs old and now in stage 5, with egfr of 10. I dont know my family history of biological family cause i was an adopted child. I was diagnosed in 2011 by accident for being in ER with Gastro intestinal problems. I have generally been healthy as a horse all my life hardly ever sick. When i was diagnosed i was advised to have my son checked and he also has PKD. Only real problems was high BP that i thought was caused by the stress of my job. I have been on BP meds for many years and kept it in check. Only real problems i am having now is some itching and occasional nausea and sleepy and tired all time. I have no swelling and still urinate good. My labs is actually pretty good considering my kidney function.I just started taking renvela binders last month cause my phosphate went to 5.9. but this months lab was back to 4.3. My doctor said if i wanted i could start dialysis now or wait. I get labs every month. I think i am gonna hold off for a bit. I have been on this site looking around and find it to be very informative. More than the question session and tour of dialysis center.
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8-2011-Diagnosed PKD 2.01 creatine egfr 36
7-2015 AV Fistula upper created, 4.3 creatine egfr 15
11-2015 AV Fistula Transposition upper arm
12-2015 hospitalization-Bleeding Kidney cyst
5-2016 pre dialyisis creatine 5.83 egfr 10
9-2016 started Hemo Dialysis creatine 7 egfr 8
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: May 21, 2016, 11:08:02 PM »

Welcome to the site daddyrat50

   :welcomesign;



Have you made a choice yet which kind of D you want to do, and do you have an access?

Take care, 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
Charlie B53
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« Reply #2 on: May 22, 2016, 06:01:20 AM »


Welcome to IHD!

When I saw the handle I had two immediate thoughts.   Ed Roth and BBC's.  Love them both.

Cass has a good question.  Has your Dr given you a choice of type of Diaysis treatment, Hemo or PD, or has he made this decision and 'told' you what you must do?

I myself am on PD.  I had my training in clinic then began doing my treatments at home.  I go to my Clinic for my monthly Dr appt follow-ups.   Dialysis in this manner doesn't seem to be any big deal, for me.   But I'm not 'normal'.   As long as I am always vigilant with mycath site for prevent infection there, as well as be very careful to prevent any contamination every time my cath is opened for connections,  I don't see any reason why I cannot continue doing this for many years.

I'll be three years near the end of this month.

You will find there are a great number of people same as you that are, and have been doing this for a long time.   Sort of like finding out you are part of a very large extended Family.

Welcome to the Family.

Take Care,

Charlie B53
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daddyrat50
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« Reply #3 on: May 23, 2016, 12:29:12 PM »

Thank Yall so much for the warm welcome to yalls family. I am gonna to hemo at center for a while till i learn my body and effects it has no me. Once i get settled in and comfortable if they is such a thing. I am gonna try to do home Dialysis maybe on down the line. I already have a fully mature upper arm fistula that purrs like a 550 HP caterpillar diesel engine. My worst fears right now is fluid restrictions and trying to quit smoking so i can get on transplant list. I have a couple of live donors thats willing to donate if they could be a match.
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8-2011-Diagnosed PKD 2.01 creatine egfr 36
7-2015 AV Fistula upper created, 4.3 creatine egfr 15
11-2015 AV Fistula Transposition upper arm
12-2015 hospitalization-Bleeding Kidney cyst
5-2016 pre dialyisis creatine 5.83 egfr 10
9-2016 started Hemo Dialysis creatine 7 egfr 8
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: May 23, 2016, 12:49:40 PM »

Good to hear you have a plan. Have you tried electric cigarettes? Helped me an awful lot.

Love, and luck, 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
daddyrat50
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Taking one day at a time

« Reply #5 on: May 23, 2016, 01:29:56 PM »

Cassandra i have tryed them electronic cigs, patches, have a script for chantex but scared to use that. I have never liked to take medicine plus the side affects they say that causes Its a wonder that cancer or COPD hasnt got me i have been a chain smoker since i was 15 and weird thing doctors tell me that i have the breathing and lung function of a non smoker. i am a double jeapordy guy i guess. The cigs i smoke is roll my own thats pipe tobacco and also dip snuff. i can quit the snuff pretty easy almost quit that but them darn cancer sticks is just sOOOOOOO hard expecially with wife smoking too.
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8-2011-Diagnosed PKD 2.01 creatine egfr 36
7-2015 AV Fistula upper created, 4.3 creatine egfr 15
11-2015 AV Fistula Transposition upper arm
12-2015 hospitalization-Bleeding Kidney cyst
5-2016 pre dialyisis creatine 5.83 egfr 10
9-2016 started Hemo Dialysis creatine 7 egfr 8
Michael Murphy
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« Reply #6 on: May 23, 2016, 04:05:12 PM »

Welcome to the site.  Glad to hear you still eliminate fluids that will make dialysis easier when you do have to start. You taken the tour, you seem to be starting off on the right foot.  The only thing I will add is that the treatments are not as bad as you fear. Pain in the butt but not as bad as I thought they would be.  Holding off starting is smart,  I wanted 2 years after my doctor told me it was time.  I made him nuts, I kept telling him I was waiting for a sign from God. He never asked but I define a sign from God as a symptom.  Any good luck and welcome to the community.
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Vt Big Rig
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« Reply #7 on: May 23, 2016, 06:14:14 PM »

Welcome to the site daddyrat ......but sorry you had to be here.

As you apparently have already discovered there is lots of info here. Keep working on that fistula. That is the only problems I have had.

Your body will tell you when it is time to start. Take some trips now while you can. Travelling can be done, (see Iolaire and Bill Peckam) but it can be a hassle.

Best of luck and welcome to the journey.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Erika1212
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« Reply #8 on: May 25, 2016, 12:38:46 AM »

Welcome :)
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Charlie B53
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« Reply #9 on: May 25, 2016, 05:08:57 AM »


As a 45+ year smoker I know how difficult it is to quit smoking.    I WANT to, but it is just so hard, and it is so much a PART of me.  It is far more than just the drug fix we get from the nicotine. Quitting has to overcome all these 'other' things.   I have tried all the gum, lozenges, ,patches, nothing had much success at all.

Sister was given Welbutrin for anxiety or something, and a side effect, she quit smoking!   Dr won't let me have that.  Says it is not allowed for renal patients.

Chantix DID make a substantial difference.  I did quit for a whole year.   I can't explain it, but I started again.   I don't know if it is the boredom, having something in my hands, the oral gratification of holding it with my lips and drawing through it.  There are all the situational times I smoke, all of these times and issues HAVE TO change in order to stop smoking.

My allergies.  Not so bad while I smoke.  As a kid before I started smoking I had so many problems, I was sick all the time.  I am actually afraid to stop smoking.  The year I did my nose never stopped running, sinus's constantly clogging then draining only to clog up again.  Most all of the OTC allergy meds were worthless unless taken at least double dose, and that isn't recommended and some do have the effect of adding to grogginess.   NOT good around machinery and equipment.

I too also had surprisingly good lung capacity, but I have noticed in the last few years that it is declining.  This chronic cough is a bitch, I want it GONE.

I've told my Dr a number of times I need some sort of aversion therapy.  For her to follow me around with a sharp stick or a club.  Every time I reach for a cigarette, or take a puff, to poke me, or smack me up side the head.   To bad she doesn't have enough time.

Oh, she will prescribe the Chantix for me again.  Only now that I am a 'Renal' patient the manufacture says it should only be used at one-half the 'normal' dose as they claim the diminished kidney capacity does not clear the med and the concentration remains higher.

Sorry, we tried that already two years ago at that amount.  For me, it had NO effect.  Unlike that previous time a few years before.  Granted I was not on Dialysis then, but my kidney function wasn't that much better then either.

Oh well, you are often wasting your time trying to reason with a Dr.
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kickingandscreaming
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« Reply #10 on: May 25, 2016, 06:13:11 AM »

Back when I was in my late 20's (I'm now 74) I used to smoke cigarettes.  I started doing yoga--not for any reason having to do with smoking--and found that I was smoking less and less.  Then one day I just quit.  I attribute it to the better breathing that yoga had me doing.  Haven't touched a cig since then and am quite an anti-smoke militant now.  Isn't that often the way it goes?  It's a terrible, terrible habit. I no longer do yoga either.
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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
daddyrat50
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Taking one day at a time

« Reply #11 on: May 25, 2016, 07:19:26 PM »

Charlie i have tried the welbutrin, patches and it just dont't seem to work. Its probably not smart of me to say this but only time i can remotely even cut back or actually not smoke is all is when i have a bad chest cold and that dont happen very often at least till this point. I will say the next chest cold i get, if and when that is when i am gonna try my hardest to put them down. The longest i ever went without smoke was four days and when i got to feeling better i was climbing the walls to get me one. I have always heard that smoking habiit was as hard to kick as a herion user. i really think thats true. I guess bottom line whenever a person is ready that they will just give them up. Back in my younger days i used to smoke them left handed cigarettes if you know what i mean lol. Everyone always called me iron lungs when i was doing that i smoked that weed just like cigarettes back in the day. One day i decided i wanted to drive a truck for a living and put that away without no ill side effects or cravings. If only cigarettes was that simple. Kicking and screaming your suggestion of yoga sounds easy enough maybe i will try that out it cant hurt.
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8-2011-Diagnosed PKD 2.01 creatine egfr 36
7-2015 AV Fistula upper created, 4.3 creatine egfr 15
11-2015 AV Fistula Transposition upper arm
12-2015 hospitalization-Bleeding Kidney cyst
5-2016 pre dialyisis creatine 5.83 egfr 10
9-2016 started Hemo Dialysis creatine 7 egfr 8
Charlie B53
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« Reply #12 on: May 26, 2016, 07:51:05 AM »


Left-handed cigarettes. LOL   Can't say I knew of the term.

I know what you mean about smoking a LOT.   I used to buy Zig Zag Orange paks by the BOX.  I was pretty near a whole pak a day PLUS my Camels.   I was growing some of what many of us thought was one of the finest.   

All that ended in Sep 81.   The Feds started seizing all toys, claiming personal property was from 'Ill-gotten Gains'. Some one I thought was a friend kept trying to get me to do a sizeable deal, but I didn't know him all that well yet.   He kept after me to do this every time saw him. I was suspicious and just had a 'feeling, so I kept making excuses not to.  One day he came over and told me he knew a 'Guy' that had a quantity for sale, and another 'Guy' that was looking to buy.   I told him to go do it himself, I couldn't afford it.  When he said he would loan me the money I was pretty sure he was an undercover Fed trying to set me up.  I told him don't ever come around me again, and moved.

I still miss the life.
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daddyrat50
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Taking one day at a time

« Reply #13 on: September 24, 2016, 05:42:42 PM »

Wanted to let everyone know i started dialysis Sept 5th, no ill effects yet. Worse thats happened so far in 3 weeks is when pulling bandaids off ripped skin off.
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8-2011-Diagnosed PKD 2.01 creatine egfr 36
7-2015 AV Fistula upper created, 4.3 creatine egfr 15
11-2015 AV Fistula Transposition upper arm
12-2015 hospitalization-Bleeding Kidney cyst
5-2016 pre dialyisis creatine 5.83 egfr 10
9-2016 started Hemo Dialysis creatine 7 egfr 8
cassandra
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When all else fails run in circles, shout loudly

« Reply #14 on: September 24, 2016, 11:15:35 PM »

Good to hear you're doing 'okay'. Are you using paper tape now? Or some spray I've read people on the site using?

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
       still on waitinglist, still ok I think
Michael Murphy
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« Reply #15 on: September 25, 2016, 05:08:02 AM »

Sounds like you knew it was time.  At this point I should tell you the good and bad news from my experience the first six months are the worst part of dialysis.
During my first six months I was infiltrated once or twice a month, mostly my fault for moving my arm too much.  After six month and for the next several years never been infiltrated.  So given time it gets a little easier.  Still a pain in the butt but a slightly lesser pain in the butt. 





sp mod Cas
« Last Edit: September 25, 2016, 11:04:53 AM by cassandra » Logged
SooMK
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« Reply #16 on: September 25, 2016, 06:08:45 AM »

Welcome Daddyrat!
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SooMK
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Transplant April 2014
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« Reply #17 on: September 25, 2016, 01:03:50 PM »

Welcome Daddyrat. You sound like a colorful character, just like Charlie. Welcome to the site and we are all glad you decided to join us.    :welcomesign;
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One day at a time, thats all I can do.
daddyrat50
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« Reply #18 on: September 26, 2016, 01:39:34 PM »

I am in my fourth week. No issues except pulled skinoff when removing bandaids. I will not let them use them no more. They use white tape to hold my lines down. Already feel better and my appetite is back with a vengeance. Worst part for me is setting 3.5 hrs. Now that I can eat I guess I will get fat lol!
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8-2011-Diagnosed PKD 2.01 creatine egfr 36
7-2015 AV Fistula upper created, 4.3 creatine egfr 15
11-2015 AV Fistula Transposition upper arm
12-2015 hospitalization-Bleeding Kidney cyst
5-2016 pre dialyisis creatine 5.83 egfr 10
9-2016 started Hemo Dialysis creatine 7 egfr 8
Simon Dog
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« Reply #19 on: September 26, 2016, 03:22:16 PM »

There are at least three kinds of white tape:

- Silk.   Rips the first layer of my skin clean off

- 3M Micropore  - paper tape

- 3M Micropore+ - paper tape, just a bit stickier than the regular micropore.

I use the Micropore+ with no skin issues.  My RN had to have it added to the formulary for the pharmacy FMS uses for home patients (they were sending the regular micropore).   It works great, and doesn't irritate my skin.

Every once in a while I visit a clinic that either uses the silk tape or uses it for the butterfly in the tapeup.   I always ask for paper tape instead.
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kickingandscreaming
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« Reply #20 on: September 26, 2016, 03:48:09 PM »

Quote
There are at least three kinds of white tape:

I'll add a fourth which I have had good luck with (and I have very sensitive skin).  In Baxter's formulary it is called "soft cloth tape. It's technically 3M Medipore.  It comes in 2" width and in tearable sections of 2" each.  It's very sticky, but peals off without a hitch.  I use it to make my own island dressings for my PD catheter and so far, so good.
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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 #21 on: September 26, 2016, 08:39:48 PM »


The 3m Medipore may be what my Nurse recently gave me only inch inch wide.  Nice stuff.

I had always been using the CoverRoll stretch tape that I had to cut to length and peel the paper off the back.

Many tapes take off skin from the inside of my forearms and most anywhere on my legs.    The VA Hospital used to tape gauze over needle sticks and always caused a problem with me.  Not too long ago they switched to that stretchy stuff Vets use on animals.  I absolutely LOVE that stuff.  It will only stick to itself.   I have a band of it around my arm and my leg where the skin Dr's cut off another couple of skin cancers.   What can I say, I grew up in the desert sun, now I have these spots show up and get them cut off.  It could be a whole lot worse.
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Simon Dog
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« Reply #22 on: September 26, 2016, 09:31:57 PM »

Quote
Not too long ago they switched to that stretchy stuff Vets use on animals.  I absolutely LOVE that stuff.  It will only stick to itself
Sold as "Coflex" in the people market, "Vetwrap" in the vet business.  Not sure if there is any difference.   I wouldn't trust it to hold my needles in, but its good for holding on bandages and comes in all sorts of fashionable colors.
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jmintuck
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« Reply #23 on: September 29, 2016, 08:51:55 PM »

Seems to me that they discovered my failing kidneys by accident when I went into emerg for a terrific (in worst way EVAR) flu bug. Ma said it was actually a LUCKY break that H1N1 happened, else I might have died unknowingly one day otherwise.
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kristina
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« Reply #24 on: October 24, 2016, 02:32:07 PM »

Hello Mike (daddyrat) (if you don't mind my asking, please tell me, what is the history of your name "daddyrat" ?)
... like yourself, I was taken-on as a baby (in my case it was not an adoption) and I have no idea about my genetic family whatsoever. I found it out by sheer chance that I was taken-on, when I was diagnosed with a genetically inherited chronic disease... Of course, I was always the odd-one-out in this family with my strange desires to study at University, speak languages, study philosophy and literature etc. and even though I remained to be the odd-one-out it never occurred to me that I was-taken on as a baby after my genetic mother had died shortly after my birth.
... It feels strange to have been taken-on as a baby and to grow up without having any knowledge about our genetic background, because it makes our life so unpredictable in medical terms.
I send you my best wishes and good luck from Kristina. :grouphug;
« Last Edit: October 24, 2016, 02:33:11 PM by kristina » Logged

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  He was completion and fulfillment in itself, like a meteor which follows its own path.
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