Is it time to Start Dialysis? How do you know?

[Black]

It's getting close to decision time so I'd like to get some input from those of you who have had to make this decision. Actually, I think of all of you as being the experts, and I trust your opinions more than most of the medical professionals I've encountered.  So, please give me your opinion, and pass along any of your experiences you think will help us decide if it's time now, or what you think we should look for to help make the decision.  I'm fairly certain that his Neph will go along w/ whatever we decide to do.

Mike's last blood draw was 5/3.  He'll probably have one more blood draw around June 9 - 12, so results will be back before his next appointment w/ his Neph on June 21. 

His creatinine has been stable between 4.1 and 4.3 since last October -- on 5/3 it was 4.8.  (I'm concerned about a .5 drop after being stable for 6 months.)  His BUN on 5/3 was 56 (range is 7-18).  Phosphorus 4.9 (range 2.3-3.7) but everything else was well within  normal range - including PTH, sodium, potassium, chloride, CO2, calcium, ferritin, hematocrit, and hemoglobin.

I'm not that surprised the creatinine and BUN are where they are, as he has been complaining off and on for the past three weeks about feeling like he has the flu.  Even had a bout of nausea for a few hours a couple of weeks ago and one night after he blew his diet -- too much ice cream -- he had diarrhea, and a few days this week he really felt awful -- again blew his diet w/ too much fried seafood.  He is horribly fatigued most of the time because he is not sleeping well -- rarely more than one hour at a time.  His skin color when he feels bad is pale and sort of yellow to gray instead of his normal tan/pink.  His hands/fingers and legs/feet cramp if he uses them much at all, and RLS comes and goes frequently, and very slight tingling or numb sensation in his extremeties is almost always present.

Today was a better day.  His color better, and he even went shopping for a new electric razor, but still spent most of the day in bed.  He does most of his own cooking but other than that, and his personal hygiene, he does very little.  His exercise is getting out of bed every hour to go to the bathroom (partly thanks to the lasix), and getting out of bed to take the dog out, and to hit the refrigerator for Cranberry juice and ice water.   I'm worried about muscle atrophy from the lack of exercise but when he tries to do simple things, like wash the car, he gets very tired.  He even paid someone to cut the grass last week because he didn't feel like riding the lawn mower.

In the meantime, I found the following on the kidney.org site:

"...Appropriate Timing for Initiation of Hemodialysis

Delaying the initiation of dialysis until frank uremia develops is clearly deleterious to the patient’s physical and psychological well-being.108 For patients with less severe degrees of advanced kidney failure (glomerular filtration rate [GFR], 10 to 20 mL/min), the benefit of relatively early dialysis is less clear, however. The HD Adequacy Work Group recognizes that patients who are initiated on hemodialysis relatively early will have greater residual kidney function that will enhance small and large solute clearance over that provided by dialysis alone. ...  "

http://www.kidney.org/professionals/kdoqi/guidelines/doqiuphd_intro.html


Based on the above I'm somewhat concerned about him having already spent many months in a toxic state.  His attitude at the moment is wait until dialysis is a life or death decision, but I have not yet discussed the above w/ him.  How I approach this discussion w/ him is going to be partly based on what I hear from all of you.  The final decision will be his, but he depends on me to do the research, provide the necessary information, and play the devil's advocate before we approach the Neph.

Does the risk to his body, especially his heart and the little kidney function he still has, out weigh the luxury of postponing dialysis?  His fistula was done 1/26.  He exercises it every day and it is humming nicely, so it should be useable.

Anyway, what do you think of the blood values, the above info, and what do you think I should tell him? (other than stay on his diet! )

Lorelle

[Bear]

I'm sure the neph. will start him when the time comes. I didn't see a Neph. for years, what with not realising IgaN was
degenerative to the point of ESRF and my own doc. apparently not being informed I had it!!
So...I got to the stage of being so full of toxins & so run down, I could barrely get to the clinic door from the car (about 6 metres!);
couldn't think properly - my wife did almost all the talking/thinking that day; felt horribly sick all the time. So sick, that on the Thursday,
I did all the education (in a mental fog) about ESRF/kidney disease in general and on the Friday had the Tenkhoff cath. put in, operation
@ 09:00. and it was in use within 4 weeks. I went to the clinic for 4 full days (they close Fridays) for nearly 3months, doing automated bag exchanges & sleeping most of the time in the recliner, until I was well enough to go do it @ home.
If you are already in the care of the Neph., they are not going to let it get that far.
All my best wishes with it!

[Sara]

I wish I could help you with that, Lorelle.  Just wanted to say good luck to both of you.

[Epoman]

For what it's worth when I finally went to the doctor, they were amazed that I walked in. They re-drew my blood a few times to make sure the results really were that high. They had told me I should have went into a coma a long time ago, it's just that my body slowly adapted to my kidneys failing. The doctors told me I must have had kidney failure for many, many years. They also told me if they put my blood into a healthy person, that person would drop DEAD on the spot. I would say as long as you are under a physicians (nephs) care, you will be fine. The neph knows how much your life is going to change so obviously he wants to delay the inevitable as long as possible. But hell if Mike is ready and so are you then start, it's really a decision you need to make based upon how Mike feels.

Now bare in mind that once Mike starts Dialysis, his kidneys will start to realize they don't need to work as hard and will go into total failure faster. To be honest I can't understand why Mike is so weak, if his HCT, is fine as you say. by the way, what was his HCT (crit)? Yes toxins will run you down, but his BUN is not that high.

Also you quoted a safe Phosphorus range of (2.3-3.7) Well ranges vary, but most doctors adopt a range all the way up to 5.0 to 5.5 as still within safe guidelines for the heart.

You also said: His attitude at the moment is wait until dialysis is a life or death decision yeah I would agree, to be honest. He is going to go through an emotional and physical roller coaster starting dialysis. I would delay it as much as possible. With the lab results you mentioned, I see no reason to start dialysis yet. But again that is just MY opinion.

You said: The final decision will be his, but he depends on me to do the research, provide the necessary information, and play the devil's advocate before we approach the Neph. Mike is very lucky to have someone like you in his corner fighting for him and caring so much for him.

Also I would like to add, since his fistula is maturing I would make sure it is nice and big before they try to stick it. However since it was done 4 months ago it should be ready by now, but personally I would give a few more months to mature. The longer you wait the bigger it will get and the less complications Mike will have to endure.

- Epoman

[Black]

... To be honest I can't understand why Mike is so weak, if his HCT, is fine as you say. by the way, what was his HCT (crit)? Yes toxins will run you down, but his BUN is not that high. ...
- Epoman

HCT 46.7

Thanks so much for the thoughtful reply.  If you believe fatigue is extraordinary for his numbers, then it may be the PKD causing it.

Thanks to Bear and Sara also.  I'll answer all three of you further tomorrow when I have more time -- have to walk dogs and get ready for bed.

Lorelle

[Epoman]

... To be honest I can't understand why Mike is so weak, if his HCT, is fine as you say. by the way, what was his HCT (crit)? Yes toxins will run you down, but his BUN is not that high. ...
- Epoman

HCT 46.7

Thanks so much for the thoughtful reply.  If you believe fatigue is extraordinary for his numbers, then it may be the PKD causing it.

Thanks to Bear and Sara also.  I'll answer all three of you further tomorrow when I have more time -- have to walk dogs and get ready for bed.

Lorelle

46.7  Good GOD! It must be the PKD because when my HCT hits 40+ I have a lot of energy. But you know what they say everybodys body is different.

[Panda_9]

Its really up to you to decide when to start Dx, but of course it does also depend on your bloods. It is great that he has some kidney function left, as any little amount is better than none. Is he on phosphate binders? If not then he probly needs to be, as high phosphate can cause calcium deposits throughout the body. And trust me you dont want that, it is extremely painful if you get it in the joints. Creatinine isnt too bad....do you know what his hemaglobin is? Is he on any meds or injections at all?? Sticking to the diet will certainly help with phosphate levels. And be careful of icecream, it is also high in potassium in large amounts. If you are at all worried, get some more bloods taken, and base your decision on that. I think if he is feeling unwell, then I would talk to your doctor about starting. The thing is, the sooner you start dialysis, the quicker your kidney function drops off. So factor that in too. If he sticks to the diet, he might feel a bit better.

I started dialysis early (peritoneal), as I was just feeling so run down and unwell. I still had a little kidney function left, but it didnt take long for it to go completely, after I started Dx. There is actually a study going on at the hospital, where they see if its better to start early or late. I didnt take part in it as I wanted to start asap. But....it made next to no difference to the way I felt. I wont go into it here, as I have already told my story elsewhere.

Im sure whatever decision you make will be the right one for you.
Take care and good luck!

[Epoman]

Its really up to you to decide when to start Dx, but of course it does also depend on your bloods. It is great that he has some kidney function left, as any little amount is better than none. Is he on phosphate binders? If not then he probly needs to be, as high phosphate can cause calcium deposits throughout the body. And trust me you dont want that, it is extremely painful if you get it in the joints. Creatinine isnt too bad....do you know what his hemaglobin is? Is he on any meds or injections at all?? Sticking to the diet will certainly help with phosphate levels. And be careful of icecream, it is also high in potassium in large amounts. If you are at all worried, get some more bloods taken, and base your decision on that. I think if he is feeling unwell, then I would talk to your doctor about starting. The thing is, the sooner you start dialysis, the quicker your kidney function drops off. So factor that in too. If he sticks to the diet, he might feel a bit better.

I started dialysis early (peritoneal), as I was just feeling so run down and unwell. I still had a little kidney function left, but it didnt take long for it to go completely, after I started Dx. There is actually a study going on at the hospital, where they see if its better to start early or late. I didnt take part in it as I wanted to start asap. But....it made next to no difference to the way I felt. I wont go into it here, as I have already told my story elsewhere.

Im sure whatever decision you make will be the right one for you.
Take care and good luck!

Here on this site?

[anja]

Lorelle,
  I started PD nearly a year ago when the Dr. left it up to me as to when to start.  From all I have read, damage is being done to your organs and vessels with the build up of toxins.  The symptoms that your husband is exhibiting seem to point to the need for dialysis now.  Sounds like he is worn out from only sleeping an hour at a time- my Neph. put me on Paxil for that symptom and now I sleep much, much better!  My thought processes seemed to become less focused and my memory waned before I began dialysis.  Also once your husband  is on dialysis he will get extra fluid removed.  Feeling flu-like much of the time can't be a picnic either!  He will also have Epo and Calciject given to him regularly to help with the tiredness and cramping.  My father has been on hemodialysis for 6 years and still urinates- always drank much water and cranberry juice most of his life.  As you can see, each of us reacts somewhat differently.  Go with your gut instincts. Your hubby is a lucky man to have you beside him.  Sounds like he is going through tough times mentally , as we all do when we realize our life is about to change forever...  But, once he gets through to the acceptance stage he will do much better!    Best of luck, Dee

[Panda_9]

Yes here on this site, plus others.

[Rerun]

They call it "The Dirty Fish Tank Syndrome".  If a fish starts out in clean water and it slowly, slowly gets dirty, he adapts.  When the water gets filthy he is still swimming around.  If you take him out and drop him in "clean" water he dies!  So, my opinion is to start early so there is not such a shock to his system.  It is an easier transition to start before you will die or else.   

[massimo]

I think U should start working on the access because it takes a long time to be ready to work,even if the kidney still
working after one or two treatment U might save your kidney.....believe me it happened to some people in my unit
After more than one year on dialysis,this person's kidney started to work again and was stopped from having dialysis
it's a miracle and if it happened to one person ,it could happen to another....Good luck.

                            massimo

[kevno]

Massimo,

What you are talking about is called an sleeping Kidney. I have known A few patients this has happened to, it is more common than you think. But NEVER in ESRF your Kidneys are, to put it one way dying. It sometimes happens after a Transplant. I have known one patient it took nine months before the kidney started to work. Also can happen if yo have been in a accident, overdosed on drugs there are many reason a sleeper can happen.

Kevno

[Gil]

Hi Lorelle,

PKD here too.
PKD is different from other kidney failure, here goes:
The kidneys, and sometimes the liver, grow big. It shows and it's sometimes painful.
This should be checked before you think about PD.

Going every hour – PKD symptom. The kidneys fail to remove toxins but do remove water. This may last a good few years after starting dialysis.
The kidneys may shut down much sooner because of dehydration and the die (contrast) in cat/scan.

PKD is a slow pace disease. My creatinine was about 4 some 5 years before dialysis.
My creatinine was 6 one year before dialysis and we had a baby boy.
During the last year I became very tired because my Hgb went down to about 8 (Hct=24), and back then there was no Epo (but after starting dialysis my Hgb went up to 13.5).

At the end my creatinine jumped to 13, but my bun was about 40, because I had been a vegetarian for 3 years prior to D-day (very low protein diet). This spared me the "dragon breath" that is associated with high bun.
However, I developed poly-neuropathy and was told that starting too late was the reason.

You can find more info in my website, but don't take any medical advice from anyone, including me.
If you don't trust your neph ask for a second opinion or find another.

Gil

[Panda_9]

My transplant didnt work straight away either. Apparently they had to "pump it" during surgery, and eventually it got going. Certain illnesses can cause acute renal failure, in which you may require dialysis until the kidneys recover.

[Epoman]

My transplant didnt work straight away either. Apparently they had to "pump it" during surgery, and eventually it got going. Certain illnesses can cause acute renal failure, in which you may require dialysis until the kidneys recover.

aMbEr_79 please quote a person when you are referencing another post, I had no idea what you were talking about since it was not related to the original posts topic. If you don't quote then people will have to scroll back up to find out what you're talking about. Remember this only applies if you are replying to a reply post, not the original post. It just makes things easier for members to know whats going on.

Example:

---------------------------

Massimo,

What you are talking about is called an sleeping Kidney. I have known A few patients this has happened to, it is more common than you think. But NEVER in ESRF your Kidneys are, to put it one way dying. It sometimes happens after a Transplant. I have known one patient it took nine months before the kidney started to work. Also can happen if yo have been in a accident, overdosed on drugs there are many reason a sleeper can happen.

Kevno

My transplant didnt work straight away either. Apparently they had to "pump it" during surgery, and eventually it got going. Certain illnesses can cause acute renal failure, in which you may require dialysis until the kidneys recover.

----------------------

Thanks 

- Epoman