Hello, introduction

[dialysisuser82]

Hi everyone. I just found this website and thought it is interesting. 
I have been on dialysis continuously for 32 years.  I do not hate dialysis since it is my life line. Yes it is hard not be able to eat or drink freely but my thinking is  that I must face whatever situation head on, I will not back off.  I like to trouble shoot complex problems and resolve them with minimum medication.
Don't like to be on drug- my body is uber-sensitive.

I would like to connect with other patient - or to help each other.
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In-center hemodialysis since 1982--32 YEARS on April, 2014
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No interest in transplant.

3 hours   3x/wk
800 dialysate flow (Qd)    400 blood pump (Qb)
Gambro- Polyflux Revaclear (1.4m2)
Arteriovenous Fistula  32 years
Parathyroidectomy 2002
Diagnosis: Glomerulnephristis- High Blood Pressure 1982
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[Bambino_Bear]

 

[Darthvadar]

Hello, and  to IHD....

Nice to have you... Hope you'll visit frequently, and post lots....

Darth, Moderator...

[Poppylicious]

Hello dialysisuser82, and  ...

I can imagine you'll be a valuable asset to the forums with all those years of experience behind you!  Post often!

 

Poppylicious, Moderator

[Ninanna]

Welcome to the site!  It's always great to have people with a wealth of knowledge such as yourself.

[Zach]

It's great to have you here!!
Looks like you and I have hemodialysis longevity in common.
 

[kristina]

Hello dialysisuser82 and welcome to IHD.

It is interesting that you suffer from glomerulonephritis and hypertension and that you are ueber-sensitive to medication.
I also suffer from glomerulonephritis, hypertension, allergies and ueber-sensitivity to all sorts of medicines...
Like yourself, I try very hard to trouble shoot and try to get by with an absolute minimum of medication...
Mind you, that is sometimes very difficult ...
Did your doctors connect the ueber-sensitivity to your glomerulonephritis or do they think it is connected to dialysis?

I am very impressed that you are doing so well on dialysis for over 32 years! That gives me (still pre-dialysis, but only just...) lots of hope.

Best wishes and good luck from Kristina.

[dialysisuser82]

Hello Kristina,

In my case, long term dialysis do not respond to standard medications.
Now I have extremely low BP.  Nine years ago my BP flipped to extreme low, I mean during dialysis It would be 65/35. I can read my body well and know how to handle the situation.
I learn by trials and errors how to fix my problems. I do collect my lab. works in a database and study them.
This is my life and I take it seriously, it is my problem and no one else. I learn to discipline with food and drink.

-------------
“There are no rules here -- we're trying to accomplish something.”
― Thomas Edison-

“Just because something doesn't do what you planned it to do doesn't mean it's useless.”
― Thomas Edison

[Jean]

 

[kristina]

Hello Kristina,

In my case, long term dialysis do not respond to standard medications.
Now I have extremely low BP.  Nine years ago my BP flipped to extreme low, I mean during dialysis It would be 65/35. I can read my body well and know how to handle the situation.
I learn by trials and errors how to fix my problems. I do collect my lab. works in a database and study them.
This is my life and I take it seriously, it is my problem and no one else. I learn to discipline with food and drink.

-------------
“There are no rules here -- we're trying to accomplish something.”
― Thomas Edison-

“Just because something doesn't do what you planned it to do doesn't mean it's useless.”
― Thomas Edison

Thank you dialysisuser.
I also learn by trials and errors to fix my medical problems as well as possible...
I like your Thomas Edison quote saying that "there are no rules- we are trying to accomplish something".
How very true. ..Perhaps our instinct plays also a great part in our survival and accomplishments...
Best wishes from Kristina.

[dialysisuser82]

I would like to share my personal view regarding being on dialysis for 32 years:  it is a lifeline.  It takes some self control but hey I am still here and doing fine.  I have few issues due to long term kidney failure which are well expected, but only minimal.

I think positive attitude is a great help and in my case faith plays a major role.

keep looking up

[cassandra]

Hi dialysisuser I'm 'only' on D since '83, and had a break for 12 yrs with dad's kidney, so I'm very impressed with anyone doing 'well' on D longer than me


       


I think luck, keeping your braincells in gear by taking care of your own care if poss, and more luck, and my hubby, and this site are keeping me at the right site of this planet. And however grateful I am of the existence of D, yes it keeps me alive etc. I hate it, a lot.

Take care, Cas

[dialysisuser82]

Hi dialysisuser I'm 'only' on D since '83, and had a break for 12 yrs with dad's kidney, so I'm very impressed with anyone doing 'well' on D longer than me


       


I think luck, keeping your braincells in gear by taking care of your own care if poss, and more luck, and my hubby, and this site are keeping me at the right site of this planet. And however grateful I am of the existence of D, yes it keeps me alive etc. I hate it, a lot.

Take care, Cas

Hey Cas,

Wow, you've been through so much!  My heart goes out to you.

My sister said "if it does not kill you it only makes you stronger".

Being on straight dialysis for over 32 yrs. is simply unbelievable.  And time flew by, events captured here and there as if the flash of moment in time... Funny how I would not know living any other way

but being on dialysis.

Thank you for sharing your thought,


         " If you had to choose three words to distill the essence of Britain, America and Canada, the words would be island, frontier, and survival."    ~ Margaret Atwood

[iolaire]

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In-center hemodialysis since 1982--32 YEARS on April, 2014
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Arteriovenous Fistula  32 years

Welcome, did your fistula last 32 years or if not how many new fistulas have you had?  Since you are in center does that mean the tech's cannulate you?

[PrimeTimer]

For lack of better words, you long-termers give me hope and some inner-strength. My husband and I are only in our first year of grieving the lifestyle we once had before he needed dialysis. Nearly every aspect of our life has been affected but we're starting to accept that we still have a life to live, just a little differently from the one we had. It helps to read that there are long-termers who have not only weathered the seas but actually enjoying fairly normal lives. I'm still working on the here and now, hoping to work up to being brave enough to think and dream about the future again. Reading your stories and commentary to each other is kind of like getting a glimpse of the future (hopefully near future) of what I might be able to do and how I'll be coping at some point. Thanks for sharing and being so positive.

[dialysisuser82]

Hey iolaire,

My fistula is intact, meaning the original since 1982, no modification.

I have been doing cannulation for the past 17 years.  I cultivate my arm up down evenly so there are options in case of infiltration.

One important thing is that I use the Heparin on the Arterial line and Saline on the Venous line, which is in contrary to what the staffs are taught.  They are quite perplex at my method.

Hope this help,

           -“Clouds may come, but clouds must go, and they all have a silver lining.
                    For behind each cloud you know, the sun, or moon, is shining.”

[Joe]

Hi there Dialysisuser, and welcome!

[Jean]

 You have given me hope.

[chook]

It has been great to read about your long term dialysis history. Wow! Well done. I still cringe at my very short stint of HD, all of eight weeks, and you do give everyone hope that HD is do-able and sustainable, even for chickens (chooks! ha,ha!) like me.