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Author Topic: Are you about to start dialysis? Ask any questions come here and get the truth.  (Read 81942 times)
hwalker15
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« Reply #175 on: March 18, 2014, 07:13:37 AM »

I AM NEW HERE I HOPE I AM DOING THIS RIGHT......BUT ANYWAY I WILL BE GOING TO VEIN MAPPING THIS WEEK AND THEN FOLLOW UP WITH THE VASCULAR SURGEON ....I WANTED TO KNOW BUT FORGET TO ASK HIM AM I AT END STAGE OR STILL AT STAGE 4 ? CAN ANYONE ANSWER THIS FOR ME ? :oops; 
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obsidianom
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« Reply #176 on: March 18, 2014, 07:41:19 AM »

It all comes down to your lab numbers such as GFR and creatinine and BUN.etc.   It really doesnt matter much as you are probably headed that way anyway as you are at the vein mapping stage now.  That usually indicates your nephrologist sees dialysis comin fairly soon which is ESRD.  So whether you are at 4 or 5 stage matters very litttle.   I wish you well on your upcoming fistula surgery when it occurs as that will be your lifeline /.
If there is anything else we can do , just ask.

Just as a general referance, Stage 4 is above GFR 15 and stage 5 is below GFR 15. That is the cutout off. 
« Last Edit: March 18, 2014, 07:45:54 AM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Ritamghosh
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share the pain gain strength

« Reply #177 on: October 19, 2014, 06:10:58 AM »

ok, my aunt has creatinine 7 ..and urea 87 ..so is that a perfect time to start dialysis ?? advise me please

also  Dr told her to don't drink much water... and she has hypertension and HBP

and i would like to know one thing more.... after dialysis will be the  creatinine level stable ?? will she can able to spend rest of her life like normal people ???
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God give us strength to fight the battle and save the "son of God"
okarol
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« Reply #178 on: October 21, 2014, 01:12:17 AM »

The decision to start dialysis is different depending on symptoms, such as severe fatigue, swelling, nausea, etc, but not everyone has the same symptoms.
Labs give only part of the story, it really depends on how she's feeling. If she's feeling bad, she will feel better on dialysis.
My daughter started dialysis with a creatinine level of 4.3. She does peritoneal dialysis and still has a tiny bit of kidney function.
Once she starts dialysis she will need to continue, unless the reason for her kidney failure is acute rather than chronic. Do you know what caused it?
Dialysis helps do what the kidneys no longer can do, it's called replacement therapy. A kidney transplant works better for many people, but she should discuss that with her doctors.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Simon Dog
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« Reply #179 on: October 21, 2014, 01:12:57 PM »

after dialysis will be the  creatinine level stable ?? will she can able to spend rest of her life like normal people ???
Possibly, but at a much higher level.  Dialysis is not intended to bring creatinine down to normal, nor is creatinine level used as the primary measurement of effectiveness.

Like normal people?  Not a chance.  She'll always be tied to the clinic schedule, or the different set of issues that come with home dialysis (my preference).  That being said, it is quite possible to have a great life while on dialysis.   In my case, it's something I do, but I still work 30 hours/week; my dog still sleeps next to me; and I do pretty much everything I used to do - just have a bit less time to squeeze it all in.

The more active role you take in your treatment, the better you are likely to do.
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kristina
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« Reply #180 on: October 22, 2014, 01:56:57 AM »

I AM NEW HERE I HOPE I AM DOING THIS RIGHT......BUT ANYWAY I WILL BE GOING TO VEIN MAPPING THIS WEEK AND THEN FOLLOW UP WITH THE VASCULAR SURGEON ....I WANTED TO KNOW BUT FORGET TO ASK HIM AM I AT END STAGE OR STILL AT STAGE 4 ? CAN ANYONE ANSWER THIS FOR ME ? :oops;

Hello hwalker and hello ritamghosh,
... There are no precise rules when it is best to start dialysis, because it relies mainly on the symptoms of the patient
and how the patient is doing despite their ESRF... and how the rest of their body and other organs deal with the situation...
For example, I am now in my 9th year of being told that I am in end stage kidney failure with 6 months to go until dialysis...
... but I still remain being pre-dialysis and luckily I don't have any serious symptoms ... yet...
Mind you, I do a lot to keep myself pre-dialysis for as long as possible : I go for regular walks (I do believe that is very important)
and I only eat a very healthy vegetarian diet and only drink water or (kidney friendly) teas...
I am doing as much as I can to avoid dialysis for as long as possible and fortunately it worked well so far in my case
of chron. proliferative glomerulonephritis with end stage kidney failure...
... I don't know though, how this would work for anyome else with any other kidney complaint... because,
perhaps I was only just lucky and I am very hopeful that my transplant "comes along" whilst I am still pre-dialysis...
I have no idea how my kidneys, my body or how I am doing tomorrow, but for today I am still ok.
Best wishes and good luck from Kristina.
« Last Edit: October 22, 2014, 02:29:16 AM by kristina » Logged

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 ...
MuddyGurl
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« Reply #181 on: October 29, 2015, 01:39:02 PM »

Kristina..after 9 years of your vegetarian diet, and being successful in keeping your health what WOULD you  go by to accept it is time to begin dialysis?

I am trying to figure out if not just low numbers, but if you must have 5 of 7 indicators. to go by....as in  fatigue, AND throwing up, and swelling?

My numbers are  good for now, I am controlling what I can with a low protein vegetarian diet, and amino acids, and feel great.

But I wonder if some people have severe fatigue..but no throwing up?

if ONE or  2 things alone are what makes the decision. I know we all want to resist as long as possible.
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kristina
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« Reply #182 on: October 29, 2015, 03:53:26 PM »

Hello MuddyGurl,
To be honest, I am quite sure you will know when the time has come to start with your dialysis-treatment ...
... There came a point when I realized that "my two little fighters" were not continuing with their compromised function much longer
and I also began to become a little too slim because my food was no longer tasty ...
These were "my" signs to realize, that I had a "good run" over the years despite my kidney disease (chronic proliferative glomerulonephritis)
and a resulting compromised kidney-function for over 43 years and, in order to avoid any harm to my other organs,
I had to start dialysis-treatment as soon as possible ... Of course it was a very sad day when I recognized my situation,
but I am pleased to say that my first treatment was not as bad as I had imagined
and hopefully my treatments continue without any medical troubles...
Good luck wishes from Kristina. :grouphug;

« Last Edit: October 29, 2015, 03:57:28 PM by kristina » Logged

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 ...
Sibella
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« Reply #183 on: January 25, 2016, 12:31:12 PM »

It looks like my luck has run out. Most of last year I plateaued at GFR 26 but in December I abruptly dropped to GFR 15. I've been re-educated on my options and had another session with the dietitian. I was paying attention to my diet (with a lapse around Thanksgiving) but I am now being much more strict. When I see my labs tomorrow I'll know if that helps any. In the meantime I see the neph on Wednesday. I feel fine. Sometimes tired but being retired I can handle that. A little itching once in a while on my legs. A random muscle spasm.

I'm guessing it's time for a fistula to be placed. Not excited about that. Anyway thanks for letting me share. I guess I need to be spending more time here reading on this site.
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November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11 :(
April 7, 2016 Fistula created in dominate arm :(
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
cassandra
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« Reply #184 on: January 25, 2016, 01:26:41 PM »

Good luck for Wednesday, and really start thinking about your choices. And read as much as you can on the site so you can ask the 'right' questions.

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
Sibella
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« Reply #185 on: January 25, 2016, 01:49:52 PM »

Good luck for Wednesday, and really start thinking about your choices. And read as much as you can on the site so you can ask the 'right' questions.

Love and luck, Cas

Thanks. We've decided on in-house hemadialysis three days a week. My husband and I went to an education session together. I had gone to one by myself last year. In the meantime I am sitting here writing down questions for the neph visit on Wednesday. There's so much helpful advice on this site. Thanks! :cheer: :cheer:
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November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11 :(
April 7, 2016 Fistula created in dominate arm :(
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
Vt Big Rig
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« Reply #186 on: January 25, 2016, 03:38:50 PM »

Making the decision is the hard part. I think you will be happy with your choice.

Best of luck.
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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
Simon Dog
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« Reply #187 on: January 25, 2016, 06:48:46 PM »

Thanks. We've decided on in-house hemadialysis three days a week. My husband and I went to an education session together. I had gone to one by myself last year. In the meantime I am sitting here writing down questions for the neph visit on Wednesday. There's so much helpful advice on this site. Thanks! :cheer: :cheer:
By "in-house" I assume you mean home.

If they are offering a 3x weekly protcol, am I correct in assuming (yes, I know ass-U-me) you will be using the 2008k/Baby K?    If so, I suggest you talk to your MD about the possible benefits of a QOD (every other day) schedule, which avoids the problematic "long gap" once a week.

When I started D, I would do anything to minimize the number of days with needle sticks.   Now, that doesn't really bother me.  (I an on 5x/week)
« Last Edit: January 25, 2016, 06:50:04 PM by Simon Dog » Logged
Sibella
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« Reply #188 on: January 27, 2016, 10:18:17 AM »

Thanks. We've decided on in-house hemadialysis three days a week. My husband and I went to an education session together. I had gone to one by myself last year. In the meantime I am sitting here writing down questions for the neph visit on Wednesday. There's so much helpful advice on this site. Thanks! :cheer: :cheer:
By "in-house" I assume you mean home.

If they are offering a 3x weekly protcol, am I correct in assuming (yes, I know ass-U-me) you will be using the 2008k/Baby K?    If so, I suggest you talk to your MD about the possible benefits of a QOD (every other day) schedule, which avoids the problematic "long gap" once a week.

When I started D, I would do anything to minimize the number of days with needle sticks.   Now, that doesn't really bother me.  (I an on 5x/week)



I misspoke. I meant in-center. Sorry. I'm still pretty new to this.
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November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11 :(
April 7, 2016 Fistula created in dominate arm :(
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
Sibella
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« Reply #189 on: January 27, 2016, 02:04:41 PM »

We're heading to Gulf Shores, Alabama on Sunday and my neph thinks I should look into getting my fistula placed while I am there. (Even with my careful dieting I have dropped to GFR 13 in just a couple of weeks.) Does anyone know a great vascular surgeon in the area (Pensacola's not far from where we'll be.)
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November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11 :(
April 7, 2016 Fistula created in dominate arm :(
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
myporkchop
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« Reply #190 on: June 21, 2016, 02:36:36 AM »

Hi all,
My Mum found out 5 weeks a go that she has stage 5 renal failure. The doctor's said she may only have 6 months to a year to live. Another doctor said 3 months to a year max. Her kidney function has declined rapidly since 2015, it was only operating at 11% 5 weeks ago, but after a blood test yesterday this has now dropped to 9%. She has other serious health conditions such as COPD, type 2 diabetes (insulin dependent), hypertension, high cholesterol, CHF and two years ago she suffered from deep vein thrombosis and almost lost her life. She is a fighter that is for sure, but this latest news has come as a complete shock for her and for my family. From meeting with the doctors the feel seems to be for her to consider conservative treatment. She is only 64 years, and has fought so long, and wants to see her grand children grow up...they have told us the many complications that she may go through with dialysis and said it is dangerous if she has the operation for the cathether (peritoneal dialysis), and dangerous if she doesn't...

I asked at the dialysis education session if there were any support groups or people we could talk to that have been in a similar situation and are either on dialysis or on the conservative treatment. They gave me a card with a facebook group. My Mum is not on facebook and neither am I. She wouldn't know how to use facebook...we have seen the surgeon and he said they can operate, although we are due to see the anethetist on thursday, so it is all up to him whether he is willing to risk putting her under general anaesthetic. We just don't know what to do. I don't want her to suffer, especially with her COPD, she already has difficulty breathing as it is. But we don't want her to give up either. At the end of the day it is her decision as she is the one who is going through this, although knowing my family we want her to LIVE.
Any advice would be greatly appreciated..she has had an iron infusion which helped a bit, but now has a chest infection that has lasted for 2 weeks, which the doctors say may have caused her kidney function to decline even further.

We just don't know what to do :(
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
okarol
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« Reply #191 on: June 26, 2016, 12:32:06 AM »

She's got lots of health issues but not sure why they gave you a time limit. Are they suggesting hospice?
You could visit a local dialysis until and see what the PD training is like, and ask questions.
It's up to her, but it seems like it might be worth trying, for her, to see how it goes.
 :cuddle; :cuddle; :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
myporkchop
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« Reply #192 on: July 02, 2016, 05:24:23 AM »

Thanku okaro
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
beckums70
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« Reply #193 on: July 02, 2016, 06:57:54 PM »

I take it that most people say the fistala is the way to go.  That is what my doctor is planning for me.  Realistically how much does it limit your activities -- after it heals and you start to use it I mean.  I'm talking lifting, bathing, fist fights.  My most important hobby is the piano.  Will I have to stop?  Will  vanity insist you wear a long sleeve shirt all the time? 

I don't expect all of these answer but I just want to know generally what the limitations will be.

Also I'd like to know about people experience driving after the sessions.  Are you too week (large city with lots of traffic).  I've call all kinds of services for transportion and they are quite expensive.

Finally, I wish someone would simply say "I would" or "I would not" do dialysis if I lived alone and I am  only a year or so shy of 70?  I know the phrase that "no one can tell you what to do".  I wish someone would try and put themselves in this position and not tell me what to do but surmise what they might do.

I'm not sure why more people don't opt for PD as it is much easier on your body and you generally have a faster "rebound" time once you start.  Also it's easier on your heart and you have fewer dietary restrictions and much more freedom to do the things you want to continue doing.

That said, I have recently read an article (I'll have to search the link again) on a study done on people over 70 who start dialysis and later regret it.  It seems that for many elders, dialysis is so hard on the body that they feel much worse after starting it than they did when they were experiencing the fatigue and other symptoms of uremia before dialysis.  Many people in that age group discontinue dialysis after a short period of time so they can regain their quality of life and enjoy their last few weeks, months or years without feeling terrible because of dialysis.  I have worked with many seniors on hemodialysis and can say with absolute clarity that it is very tough on the aging body.  They tend to lose a lot of weight, suffer from appetite loss due to fluid and dietary restrictions, and are absolutely exhausted especially on dialysis days, then spend non-dialysis days trying to recover.  Hemo is hard on a young body, but it can be devastating on an elder, especially one who is already frail and has other health issues. 

I'm not trying to scare you, but you expressed a desire for someone to be completely honest with you, and these are my real-life observations from working in nursing homes and retirement communities with seniors over 70 on hemodialysis.  I've never met a senior who opted for PD, but I suspect they would fare much better than those on HD.  I'll look for that article again and try to link it here for you later.

Best of luck with your decision.  Remember, no decision is the wrong one as long as you are at peace with it.

ETA:  Here's the link I was looking for:

http://www.protectpatientsblog.com/2015/05/dialysis_maybe_not_the_best_ch.html
« Last Edit: July 02, 2016, 07:21:34 PM by beckums70 » Logged
Mr Ken
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« Reply #194 on: November 03, 2018, 06:58:36 PM »

Could not have said it better than beckums70. PD does have its draw backs but it is easier on the body because you do not have a pump sucking out the body fluids filtering out the garbage then pumping the fluid back in......  It sounds like people are being auto steered towards in treatment hemo than looking at the options available....... Now hemo could even be done at hone....... Hate to see what the electric bill is for running that equipment though...... The water purification system is a good size.....

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cassandra
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« Reply #195 on: November 04, 2018, 10:08:41 AM »

I can only enlighten you on the costs of Nxstage. 2 days on, 1 day off (mostly) Pureflow 60 liter Saks every 3 days costs 40,- in electrics a month
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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
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