Secrets Of Your LONG TERM Success - Dialysis

[ToddB0130]

For those of you who would like to share your 'secrets' (or for caregivers,  the 'secrets' of the person you support) --- Please 'fill in the blanks'

FYI -- I'm going to do this same type of post for transplants.

LONG TERM (for this post) = three years or more of dialysis

1)  How long have you been/were you on dialysis ?

2)  How old were you when you started dialysis ?

3)  Which modes of dialysis have you used ?

4)  How much time did you dialysis in center ?

5)  Are you diabetic ? *
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)

6)  List (up to) five of the most important things you credit for your long term dialysis success





7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)





List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)





Well --- firstly .... THANKS TO ALL WHO PARTICIPATE IN THIS POST.  I hope to see a whole lot of responses.

Secondly --- If anyone would like me to edit this first message with any additional "survey" questions ...... Just IM me and I'll be happy to add to the first post so others have a chance to respond to more questions if they're out there.

Now -- Off to create a similar post for LONG TERM transplants !

THANKS AGAIN.

[jeannea]

Interesting questions. But I won't be at 3 years until May. Maybe you'll get some good advice.

[del]

Hubby has been on dialysis since Aug. 1997 so that's 15 years this August!! 

1)  How long have you been/were you on dialysis ?  15 years

2)  How old were you when you started dialysis ?    38

3)  Which modes of dialysis have you used ?   PD, incenter  and nocturnal home hemo using a regular dialysis machine - not nxstage

4)  How much time did you dialysis in center ?    6 years

5)  Are you diabetic ? *        No
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)

6)  List (up to) five of the most important things you credit for your long term dialysis success

following diet
staying active
a supportive spouse (me!!)
listing to advice of professionals
being a part of the process - questioning, educating ourselves about kidney failure and dialysis





7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)

Be proactive
educate yourself about dialysis and kidney failure. 
follow your diet - the professionals know what they are talking about (for the most part!!)
Find out all the forms of dialysis treatments that are available





List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)

websites  - one being nocturnal dialysis.org
literature on kidney failure and dialysis

[Traveller1947]

1.  I've been on hemodialysis almost 7 years.
2.  I was 57.
3.  I've had in-center dialysis only.
4.  Almost 7 years.
5. I'm not diabetic.
6. Following the renal diet as much as possible.
     Learning as much as possible about kidney  disease, the dialysis process and the renal diet.
     Being very careful about taking my medicine: phosphate binders, heart and blood pressure medicines, dialysis
     vitamins, etc.
     Forming a solid relationship with my nephrologist and dietitian.
    Being buoyant and flexible, because no matter how well we try to take cake care of ourselves, 'stuff happens'.
7. Stop worrying.  If the day comes when you need to go on dialysis, there isn't much to do but accept it.
     Learn what your options are, before you begin dialysis if possible.
     Go into this portion of your journey with a positive attitude: after all, you have nothing to lose.
      Really get to know the staff at your center and the other patients too.  It will soon become clear which of the staff
       are doing their best for you: request that only they be allowed to work on you.  Take the risk of getting to know
        your fellow patients: you may be surprised at who you're dialyzing with!
      Get to know the clinical manager at your center, so that if you have any complaints, they'll be heard.
8.  Resources:
      My nephrologist
      My dietitian
      The Internet
       I also listen carefully to the experiences of the patients and staff at my center.  Valuable information there some-
       times.       

[sullidog]

1)  How long have you been/were you on dialysis ? 2 years

2)  How old were you when you started dialysis ? 26

3)  Which modes of dialysis have you used ? in center hemo

4)  How much time did you dialysis in center ? 2 years, 3 days a week, 3 and a half hours

5)  Are you diabetic ? no

6)  List (up to) five of the most important things you credit for your long term dialysis success
support from friends and family
following my diet
knowing what's bad and good for me
following doctors orders
being compliant to a t


7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)
speak up for yourself, be your own advicate
pay attention to changes to your own body because no one knows your body better than you do
do your research, but do not subsitute it for your own doctors advice
if your bp starts to drop lying flat will help

 List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)
kidney school
I HD
kidney korner
american kidney fund
national kidney foundation
my own nephs advice

[kitkatz]

1)  How long have you been/were you on dialysis ? 13 years hemodialyis

2)  How old were you when you started dialysis ? 36 years old

3)  Which modes of dialysis have you used ? hemodialysis three days 4 hours a week, nocturnal incenter dialysis 8 hours.

4)  How much time did you dialysis in center ? All 13 years

5)  Are you diabetic ? * No
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)

6)  List (up to) five of the most important things you credit for your long term dialysis success
Too stupid to know any better 
Watch my diet
Try to watch my fluid intake
Exercise
Joyful life living
Finding information as fast as possible when I was diagnosed.




7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)
Find out all you can about your diagnosis.
Find out about the dialysis diet immediately.
Take your doctors advice, but make your own decisions.
Live a happy life.
Put your head down and keep going!





 List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)

[Rain]

1)  How long have you been/were you on dialysis ?  4 years 6 months

2)  How old were you when you started dialysis ?  23 years old

3)  Which modes of dialysis have you used ?  In -Center

4)  How much time did you dialysis in center ?  3 days a week, 4 hours a treatment.

5)  Are you diabetic ? *  No

6)  List (up to) five of the most important things you credit for your long term dialysis success
- Exercise.   It keeps my bloodpressure stable and makes me feel great between treatments
- Stick to the renal diet
-supporting boyfriend and family
-supporting nursing staff and doctors




7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)

-Ask question if you dont understand, do your research
-be proactive in your treatment. Don't be afraid of telling the dialysis staff what you want.
- exercise there is a lot of muscle wasting and this will make you feel better
- Go to your treatments as scheduled even if you dont want to go.
- Start a hobby while on dialysis it makes the time go quicker


List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)
-   Kidney Foundation of Canada  - for recipes
-

[RenalSurvivorDotCA]

1)  How long have you been/were you on dialysis ? 10 years

2)  How old were you when you started dialysis ?  42 y/o

3)  Which modes of dialysis have you used ? InCenter Hemo - 10 yrs /  Home Hemo -  2 months

4)  How much time did you dialysis in center ?   5 hrs x 3days

5)  Are you diabetic ?   No

6)  List (up to) five of the most important things you credit for your long term dialysis success

    fluid management
        follow the renal diet
        active participation in my own treatment
        exercise
        positive mindset/attitude



7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)

    Learn about your treatment. Ask questions.
        You are the only one who truly cares about your outcomes.
        Keep positive and upbeat; there will be down times.
        Double check your nurse's/tech's figures (dry wt, goals) and machine settings.
        Treat techs/ nurses with respect.



List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)

Dietitian, internet

[beachbum]

I just started in November so I don't qualify but you guys give me hope! I was 37 (almost 38 when I started)

[lmunchkin]

1- over 7 years
2- 56
3- PD, In-center & home hemo
4- less than a year
5- yes
6- Christ Jesus
    More frequent D. Removing not only fluid, but toxins also.
    Eating properly
    Calming down & not being so stressed out
    Taking one day at a time

7-  Same as 6


lmunchkin
 

[Whamo]

Fluid management is numero uno for me. 

[Riki]

1)  How long have you been/were you on dialysis ? This time, 7 years and 8 months

2)  How old were you when you started dialysis ?  25. I was 3 days shy of my 26th birthday

3)  Which modes of dialysis have you used ?  PD- 4 years, 7 months, HD- 3 years, 1 month (as of yesterday, actually)

4)  How much time did you dialysis in center ? 4 hours, 3 times a week

5)  Are you diabetic ? No


6)  List (up to) five of the most important things you credit for your long term dialysis success

-An optimistic outlook on life
-supportive friends and family
-having a life outside of dialysis
-having a mother who terrifies me *L*


7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)

-learn everything that you can about the different types of dialysis, as there is no cookie cutter, one-size-fits-all version, no matter what the doctors say.
-listen to your own body, and follow your instincts.  You, better than anyone else, knows when something is wrong.
-Don't be afraid to speak up if you think someone has made a mistake.  It is your health, or even life, that is jeopardized, not theirs.
-don't lose your life.  Go out with friends, travel, keep up your hobbies, or start new ones.  Dialysis is just another aspect of life, not the end of it.



List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)

-Doctors, nurses, and other medical staff
-the internet
-fellow patients

[Bill Peckham]

1)  How long have you been/were you on dialysis ?  21 years

2)  How old were you when you started dialysis ? 27

3)  Which modes of dialysis have you used ? Incenter, 3x/week hemodialysis; home more frequent hemodialysis

4)  How much time did you dialysis in center ? 11 years - run length 4 hours 45 minutes

5)  Are you diabetic ? No

6)  List (up to) five of the most important things you credit for your long term dialysis success
Putting in my own needles
Setting my own fluid removal target
Travel
Advocacy
Dog ownership

7) List (up to) five pieces of advice for someone who has not yet started dialysis (or is new to dialysis)
Work to manage your own treatments
Do for yourself all you can
Be in the moment/mindful
Get a dog

  List the resources you've found most helpful in your journey through dialysis (besides IHD -- HA !)

Home Dialysis Central www.homedialysis.org



Well --- firstly .... THANKS TO ALL WHO PARTICIPATE IN THIS POST.  I hope to see a whole lot of responses.

Secondly --- If anyone would like me to edit this first message with any additional "survey" questions ...... Just IM me and I'll be happy to add to the first post so others have a chance to respond to more questions if they're out there.

Now -- Off to create a similar post for LONG TERM transplants !

THANKS AGAIN.

[texasstyle]

Just wanted to say hi Todd! been kinda busy but this is a topic oddly enough I've been thinking about lately. Funny I saw it here as well. Have a great tomorrow.