When to start

[tyefly]

I have been reading all I can and tying to learn as much as I can.... I an very concern about some of the posting which say that they started dialysis when there GFR was 5 or 6 or some really low number... while others have been alittle higher...  I know that the medical community would like to start you no earlier that GFR 10.. And most of the postings are saying that they were sick to with all problems that we get as the disease progresses. (vomiting, iching,headaches....etc)  And alot of the postings say that you will feel better after dialysis but it might take several weeks....  Why do we wait so long and try to live so sickly to try to avoid dialysis.  Why does the medical community want us to wait.... My doctor has told me that people with kidney failure dont have any symptons and are not sick unitll they are down to GFR 5 or 6.... Is this just a cost saving measure... to make us believe that its ok to just be sick and when your almost dead then we will start you on dialysis..... What about all your other organs.... certainly the toxins and chemistry unbalancing must start or stress your other organs out... like your heart....  I can understand why I would want to run the risk of damaging my heart or liver or what ever just to save a buck for the insurance company to not start dialysis...  I am anemic and my doctore told me that it is very costly to treat and they only want to treat when it get really bad.....  but every thing that I have read says when your anemic you run the risk of damaging your heart because it has to work over time and you can get a enlarged heart...   All I need is to have heart damage becuase they didnt want to treat me for something else..... I am very leary about the medical system... and feel that you need to really watch out for your self  cause if you dont and if you dont make them treat you they will not to save money.....Everything is about the allmighty buck

[Hanify]

Yes, it does seem that the decisions are made based on money.  It's not the case here (NZ) cos it's all funded anyway, so I'm not sure what the experiences of other NZer's is.  I don't know what all my levels were - I went on dialysis suddenly so didn't have a chance to have to think about it.  Lucky I think.  It must be so frustrating for you, feeling sick all the time.  Maybe someone in the US might have some ideas about how you can speed things up.  Good luck.  Thinking of you.

[tyefly]

Thx for the reply... its not that I want to speed things up or really be on dialysis... I am sure no one wants to...but  If I am going to be  I certainly dont want to be sick for a long time when something can be done to help me..... If I am going to have to do dialysis   lets get it done......  I guess I am just scared of  waiting to long and doing damage to my heart or having a heart attack because of all the toxins.....  I had my gall  bladder out after 10years of the doctors telling me that I just was dehydrated and to drink mineral oil..... The pains were so very bad at time.... even though I drank mineral oil and that is all that came out.....  Now I know that all those years I was having gall bladder attacks.... Sadly   I am very nervous about treatments and the lack of treatments at times......I know when my body is not right.... 

[Hanify]

Yes, and dialysis is way easier if you're feeling OK to start with.  If they leave it too late, it'll take you longer to come right.  It seems very confusing that different centres seem to have such different rules for when you start.  I really feel for you. 

[Pam]

Hi tyefly....I'm new at this too. At a GFR of 10 I felt like crap. At 8 Dr. called and said it was time to start now! I am in my third week now and feel like a new person. I'm not near so tired and food actually tastes good again. They started me on small needles and a slow pump speed but on wed they are increasing them both.
Pam

[tyefly]

I was wondering about that too.... what speed in your body normally doing...... Does the speed of dialysis affect the blood vessels..... like strain...or any other tissue or organ....   I am worried about muscle cramps as I have heard about getting them when taking off too much fluid.... I get them now when I take my lasix......   well  not as bad as I use to as the lasix is not working very much anymore....I am not sure why..... I do need to get some of this water off......

[monrein]

I didn't wait as I was having symptoms.  It was my second time around and my eGFR was about 16-18 as I recall.  My neph felt that I shouldn't wait and get sicker and sicker but like New Zealand we have a different system in Canada. 

[staceyand joe92]

My GFR went from 15% to 7% in 2 weeks. Needless to say I didn't have much time to adjust to dialysis. I was having symptoms and was very anemic. My doc put me in the hospital because I was fighting a kidney infection and within a few days I was having a catheter put in to begin dialysis ASAP.  The last few days before dialysis I was in bed asleep or throwing up. I don't suggest waiting until the last moment for dialysis even though I now know how hard it is on your body and it comes with a whole new set of problems. At least they are manageable and I did begin to feel MUCH better once I was on dialysis after about a month or so.   

[mcmkids]

My husband fell into dialysis quite rapidly because his was the product of his kidneys acutely shutting down due to dehydration. They kept hoping that function would return, but when his creatinine soared to almost 9, they gave up and placed him on PD. His creatinine is now running in the 7's (not great but overall an improvement) with a GFR of 8. When his creatinine was almost 9 (8.98 to be exact) he was very sleepy and sick as a dog to his stomach with vomiting and not able to hold anything down. This was the week before Christmas and his PD catheter was placed on 12/22/09. He started the actual dialysis in mid-January and we hit lots of rough spots at first because he couldn't drain properly. After the surgeon went in and fixed the catheter, it has been good ever since. (Provided he isn't constipated!) It does take getting used to, but overall he feels so much better. 

[dwcrawford]

My creatine was only 5.9 when they started me on dialysis.  My Neph says because they didn't wait is the reason I am doing so well.  If you are not already sick or have complications, he says it is much easier on you in the long run.  He mades big bucks so I guess he knows what he's talking about.

[RichardMEL]

Comment: I started with a GFR of 6 so I think you may be referring to me.

Some background(which I have posted before).. back in 2004 I was invited to partake in a world wide trial (co-ordinated in New Zealand of all places) of the effects of starting dialysis earlier or later on lifestyle and medical outcomes. When I say earlier I think they meant earlier than say GFR 10 or when the docs might normally recommend it. Luckily(for me) I was selected into the later group (I was so not wanting earlier thank you very much ) and kept going. We agreed that I would keep off D until either my labs reached a level where it was clearly time to start because to not would be worse for me, or I really became ill (throwing up, nausea etc) and thus it was impacting my life in a severe way.

I never threw up or felt awful but after 2 years and at GFR 6 they declared I had to start and it was so noted in the trial and all that.

From all the discussions I've had with the nephs and dialysis co-ordinator about such things you simply can't rely on JUST the GFR or other numbers to determine when to start. As stated elsewhere these can fluctuate a bit each time and they are only a guideline. The best way to tell is your body. If you are suffering symptoms and it is affecting your lifestyle (and I know from the other thread that it is) then it is more likely than not time to start because Dialysis will impact in a positive way on your overall quality of living (or should do, anyway!).

It's not cut and dried to start at GFR 10, or 15, or 6.... it's different for everyone because everyone's specific situation is different and they react differently to toxins in their body etc. Just because I lasted to GFR 6 does NOT mean someone else will too - sad to say.

[tyefly]

Well I got my blood work back and now I am down to GFR 15..... I was at 21 only a month ago ... I was not expecting this big of a change.....  My doctor also is giving me b12 shots...That I have to give my self once a week..... I need to learn to do that shot stuff.... She also said that she was going to refer me to a transplant class.... I have Kaiser ....does any one know what a transplant class is...... 

[kitkatz]

Transplant class- They sit you down and discuss what a transplant is, go over med related issues, and basically sign you up for a few months of hellish tests and waiting, then they send you to approval of the Kaiser team. Then send you where ever for more stuff to do for transplant.  Been there at Kaiser done that!

[tyefly]

Is Kaiser bad at treating kidney disease.....  are they bad at the transplant stuff... my husbund was going to see if he could give me one of his kidneys.....    I am not sure what to do with kaiser......I hear so many stories...

[tyefly]

should I wait to see about a transplant or should I have a fistula put in  now.....  what do all of you think....  I am not sure what Kaiser does....with kidney stuff

[RightSide]

I started when my GFR went down to 13.  I was already itching terribly, dizzy, a bit nauseous, and a bit short of breath.  As well as being terribly anemic (hemoglobin 7.4).

[kitkatz]

I have not had any real problems with Kaiser here in SO CA.  You have to stick to your guns with them and sometimes demand appointments.  The docs are pretty much good ones. Make sure you get a good doc.  And be prepared to run the show yourself.

[Brianna!]

I don't remember what my GFR was when I started dialysis. My mom doesn't know either. But my creatine was 6.4 when I started. I was very angry, because my creatine was high one day, and the nurse said "if it doesn't come down, you're going to need to start dialysis." so over the weekend, I drank lots of fluids, and stuff, to try to get it down. My creatine went down, but they still started me on dialysis. My creatine was once at 11, and they didn't do anything. Anyway...I wasn't feeling sick when I started dialysis...I felt completly fine. I feel no different now that before I started dialysis.