"To be or not to be on dialysis, that is the question." (Not Hamlet, its Hakki)

[BrightKismet]

There are a lot issues and opinions that I am dying to soak up from your experience and wisdom. But since I am seeing my kidney specialist on Tuesday, I thought I will ask my most relevant question first.

They have been wanting for me to start dialysis for about a year now. In that time I have been hovering between 13-15% kidney function.

One of the problems is that I see a different specialist every time, even though years ago I ask just to see one, so I can build up a report. (I just deleted the rant about this, save it for another time). The best up front talk I have had is actually been with my surgeon (he will be doing my catheter [and transplant when/if my name comes up]). And one of the things he said is the time to start dialysis is the balance between how well you feel and your blood results.

Well, are the following symptoms signs for the need to start dialysis (i.e. I have some food allergies/sometimes itching/out of breath/a bit tired/insomnia). I get light headed when I stand up sometimes, but I think that’s the blood pressure tablets I am on. (Enanipril). I know this sounds like a joke, but apart from that I feel really good (Anyone remember the film “Life of Brian” and “Apart from that, what have the Romans done for us”).

At the moment I don’t “feel” ill. Am I wrong to not want to start dialysis until I feel, “Hey, I don’t feel too good, I think it’s time”. I think some people like the docs think that I am in denial. And sure we all go through that phase. But my dilemma is not an acceptance issue, even though there are issues that one has to accept and come to terms with. My point is, the issue of what is the best choice. What is best for me? I feel that if I could be confident that I made the best value judgment, then I can feel comfortable living with the consequences of that for the rest of my life. Does this make sense to anyone?

My current choice of modality at the moment is PD. But I am hoping to get more advice from you guys. My question is, is it better to;

a) Once you start dialysis life will never be the same again, so you might as well enjoy as much “normal” a life as you can, while you can. And maybe that great diet/herbs/treatment/idea you found on the internet/or read/or Charlie gave you/or your prayers will buy you a few more months/years.

b) Even though I feel good, starting with 13-15% function stands you in good stead for the road ahead (i.e. better/quality dialysis results), than waiting until you feel sick and struggling dialysis with a kidney at 6-9%.

c) Wait until you start to feel the symptoms that you are in fact sick or/and your kidney function is below 12%, so when you do start dialysis, you can appreciate the purpose of what its there for, and feel the benefits of being dialyzed. And eradicate the “if only’s”.

d) other

My battle is trying to iron out between a),b) and c). But if you think its d), then please share with us what you think d) is. I am looking forward to sharing your thoughts.

Peace be with you,
Hakki

[petey]

I can't give advice on much of what you ask, as my husband Marvin found out he had ESRD one day, and four days later he started dialysis.  It was never a choice for him as to when to start.  (He had been very sick for about two months before, but we ignorantly chalked it up to a horrendous case of the flu that we thought he just couldn't shake.  The symptoms were there, but we never thought it was kidney disease.)  Therefore, I will leave that discussion to those with experience in that area.

I would like to address your topic (a) -- enjoying as much of a "normal" life as possible before starting dialysis.  I think I understand what you're saying -- that a life without dialysis is more "normal" than a life with it.  And, you are probably right there.  However, except for the three hours (5 days a week) that Marvin's actually attached to his home hemo machine, I think he lives a fairly "normal" life.  He's a volunteer youth coach (baseball), he cuts the grass, he drives, he eats mostly what he wants (with some limitations and with LOTS of binders), he drinks an "average" amount of fluid (more than he was allowed on in-center dialysis), and he does most (most, not all) of the other things that a "normal" 53-year-old man does.

In fact, since Marvin started on home hemo (2 years ago), he has become even more "normal."  Before ESRD and dialysis, Marvin was an avid golfer.  He has built up his stamina in the last two years that he can enjoy 9 holes now; his goal is to work back up to 18 holes. 

He doesn't do a lot of lifting (to protect his fistula arm), but he gets around pretty good (no jogging -- but he didn't do that before dialysis).

I guess I'm saying that with good treatments, your lifestyle can be somewhat "normal."  Of course, Marvin is the only person in our county who does home hemo treatments, so he is unusual.  And, our lifestyle is "normal" to us -- though it might not be to others.

And, the things that you mentioned that could "buy you another few months or years," well, we think dialysis has "bought" Marvin the last 14 years of his life.  So, it's been a good trade-off to us.

[Hanify]

Like Petey's husband I also had to start dialysis suddenly so had no choice.  I think it's actually easier that way.  I totally understand where you are coming from Hakki - who would want to start dialysis?  But I can tell you from listening to others on ihd that it sneaks up on you, and while you might think you feel ok, you probably don't realise how sick you are.  I think we forget what normal is after a while.  All I can say is that I do PD and it's really manageable.  Especially with a cycler at night.  Other than 9 hours at night I don't have to do anything during the day at all.  I go to work and do everything else I need to.  I have issues with tiredness, but that's not because of the renal failure.  There are lots of people who work full time.  Listen to your doctors.  They don't start people on dialysis for the hell of it.  Loved the Like of Brian quote.  I know it well!  Keep whistling 'always Look on the Bright Side of Life" too!

[jbeany]

Mine came on gradually, and I had to make the same choice - when to start, even when you feel good.  Now that I've been on it, I do wish I had started sooner.  The point is, even though I felt fine, now I feel better.  I have a lot more energy.  I also think that starting at a bit higher percent of function gives you more time to adapt to the fluid and diet restrictions that come with dialysis.  Because you still have 13% function, when you start, you will still be processing urine and better able to deal with phos and potassium.  That makes your fluid and diet restrictions much less at the beginning, and much easier to deal with. 

If you push it to 6 or 7 % function, you may end up hospitalized, and start dialysis with weeks or month of time wasted sitting in a hospital bed.  Better to learn pd while you still have some mental clarity to understand it!

[dwcrawford]

The answer is without question B.  However you will find that my feelings usually aren't in agreement with any one else in here.  I personally felt badly only one or two days (and then just tired).  Never a sick day from the disease itself.

Re your comment in A, Life will never be the same.  It won't necessarially be worse however.  I think it will depend on you as an individual and how you approach life.  Life is what you make it, healthy or otherwise.

Modality: totally based on your personality.  I do hemo in center because eventually I don't want weird tubes hanging out my body.  I'd much rather live with a goofy looking arm.  I do in center because I like seeing the doctor, dietician, nurses and caregivers several times a week and they come to me.  Also because I simply like them, though not an initial consideration.  Probably I'm in the minority here too as other methods are reportedly more complete and less intrusive. 

[Hanify]

No Dan, I often think about whether to change to haemo cos you are freer to do thing like swimming.  I can completely understand you not wanting a tube hanging out of you!  That's the really good thing about this site.  You can read all sorts of different opinions here.

[george40]

Hi there, one thing for sure is that you do not want to wait until you are very sick to get started on dialysis. Starting now could help preserve the function you have left and most likely will yield good results. Life is what you make it whether on dialysis or not. Life will be different, but that does not mean it will be bad. I have traveled quite a bit this summer, been very active. My buddy who does pd recently returned from an alaskan cruise. So, you can enjoy life, work, travel and still do the things you enjoy doing. I waited and before I knew it I lost over 30 lbs in 1 month throwing up everything I ate and then I had no appetite. I was weak and it took a while to start feeling better. I went from 13% to 8% in a few months and I thought I was going crazy; my memory was horrible. The itching and tiredness your experiencing sounds like a sign of kidney failure (Uremic). You will be amazed to find all that the kidneys regulate in your body, like those red blood cells that give you energy, strength, etc.  Whatever you decide, try not to wait until you are very sick to get started. Best wishes to you.

[BrightKismet]

If you read my introduction, initially, I chose HD for the very reason that I didn’t like the idea of a foreign body sticking out of me. But digesting some of the benefits of PD as helped me to accept the idea. Well, if we throw vanity into the argument, then what is worst, a tube sticking out your tummy or as dwcrawford said, a goofy looking arm? At least you hide the tube in clothes, where as you cant with HD wearing simple day-to-day cloths like t-shirts. I used to be very active in sports/martial arts, I just can’t get the picture out of my mind that the PD tube is going to catch somewhere, or it will get injured while I am wearing my batman costume in the middle of the night saving an old lady being robbed by a gang of villains. (ok, bad joke – I mean if one had to defend oneself in a scuffle). But when you put vanity aside, then it reminds me of what my renal registrar said, “I don’t see an ugly arm, I see a life-line”.

The other problem with HD with me is ever since a little kid, I just drink gallons of water. I feel so parched. I would sometimes wake a couple of time in the night. I drink all the time. So I don’t think I could live without my water doing HD. That is another strong PD argument for me.

Petey: thanks for your comments. Totally understand your “normal” points.
Hanify: You right, sometimes its easier to deal with someone that’s foisted onto you. My point is I suppose is the difference between, accepting a judgment call, and making a judgment call. It’s easier to embrace or fight that is in your hand. But its harder to make a decision on something you can't “see” and need gather first to get a glimpse.

jbeany: Thank you. Can I ask what % you were on when you started dialysis.
dwcrawford: thank you as well, we chatted the other day. You gave a cracking advice, “don’t listen to everyone who gives advice”. I think its important to listen, but ultimately one has to make his own mind up and be responsible for ourselves.

george40: God bless you, I really appreciated you sharing your story. I am taking heed to what your saying. This is why I am trying so hard to stay objective and trying to what is right.

I was debating myself about having lots of good intentions of doing good and taking stock of myself about what good I have really done, and I came up with this thought, “One physical step is worth more than a thousand dreamed”.

Hakki
 

[paul.karen]

I just started Dialysis on 8/7/09.
I had all he same questions that you have.  And like you i was lucky IMO to have found this site before i started dialysis.  My neph who i like actually never told me about PD.  I learned of it here along with just about everything else i know about dialysis.

I had to make all the same decisions as you.  As time went on i did start to feel the effects.  This site made me ready and made me come to terms.

I decided to do PD for a variety of reasons.  Over time you will come to a decision that you feel good with.  It has only been a few days for me but i am already second quessing my decision.  But i think this is part of the mental game we likely all go through.  I feel deep down i made the right decision but in the back of my head is the (what if) i hear now and again.

My advice read up ask questions like you are and you will find what is best for you.
I agree with Dan.  I would and did pick (B) although i was at 10%.
And i work Full time.
P&K

[Des]

This is the stuff that is happening in your body when your kidneys fails. If you decide to do nothing this is what will happen inside your body...., since your kidneys cannot filter out the potassium you consumes fast enough, it will cause your heart to beat irregularly. If you have lost the ability to produce urine, your vascular system will become flooded with fluid and your heart won't be able to keep up with the increased volume. That increased volume will also collect in your lungs making it difficult to breath, depriving your heart and brain of oxygen. Your kidneys cannot filter out the urea your body produces, which will result in toxemia, rapidly damaging your heart, brain, and other vital organs. If you live long enough, the phosphorus that your kidneys can't filter out, will absorb into your aorta, and causing it to calcify and harden, making it harder for the heart to supply itself with oxygen.
Dialysis prevents all the above life threatening effects by removing the harmfull toxins in your body. If you do not qualify for a transplant or choose not to have one DIALYSIS is the only option you have if you want to stay alive.

I know people might differ from what I am about to say but the sooner I can assist my body and get rid of the toxins the better.
I cannot wait to start dialysis!
 
Choosing the right type of dialysis depends on what is medicallly viable and what fits into your lifestyle.
Sometimes we want PD but the results is not good enough and you might be forced to do HD.
Getting as much information on all the types of dialysis is the key. So if the one doesn't work you can always have the other. But do not put your heart on one type only..... stuff happens.

Good luck and happy hunting.... (for info) 

[RichardMEL]

Well Dan the Man I agree with you and say option b).

Hakki you've already mentioned some classic symtpoms of renal failure and the longer they go on without doing anything the more adverse the affects on your body. Specially the itching(could be high phos) and the shortness of breath(fluid) are the ones I'd worry about the most. You don't want these things to build up more and cause problems for you.

As someone else said stated you don't want to wait too long till you're really sick - that will make it much more difficult to deal with.

While I am all for doing as much as you can while you can and enjoying life to the fullest I do think there is a point at which you need to accept it's time to start. They've been recommending to start for a year already and your GFR is just above the recommended level so I can understand why. I guess in the end it is a value call but I would definitely consider starting soon - it will be easier to manage rather than waiting till you're throwing up and sick with nausea(etc) every day.

[sico]

I say option b) too! Probably better off.
When i found out my kidneys were failing my bp was 215/125, was short of breath, had blurred vision from a build up of toxins and was on dialysis in the wee hours of the next morning after having a catheter placed in my groin/upper thigh. Hospitalized for 2 weeks initially.

[BrightKismet]

Thanks everybody for your input, opinions and ideas. A lot for me to think about. Most people went for b). What I found interesting is (if you read my post about Kidney Transplant in "Transplant Stories") that people would rather push the boat out and risk their health to have a kidney transplant in order to have more "normal" life-style, but yet here they would not risk delaying starting dialysis for the sake of holding on to a "normal" life-style.

Is the risk of moving from one treatment to another worth more (and less vulnerable) to having no treatment at all? Or is the life-style change far greater from one who is sick and tired of dialysis wanting a touch of "normality" in a transplant, than a "normal" person getting sick who has to touch base with starting dialysis, that makes it worth the risk?

I suppose the reason is if we look at it the other way round, it is far far more detrimental not starting dialysis than from going from dialysis to having a transplant.

[RichardMEL]

Thanks everybody for your input, opinions and ideas. A lot for me to think about. Most people went for b). What I found interesting is (if you read my post about Kidney Transplant in "Transplant Stories") that people would rather push the boat out and risk their health to have a kidney transplant in order to have more "normal" life-style, but yet here they would not risk delaying starting dialysis for the sake of holding on to a "normal" life-style.

I think the issue there is that you're talking about slightly different things. In terms of not defering dialysis it's that if you do defer it, it's likely you will become more physically ill, and let's face it you're heading down a slope that leads to one place (death). So starting dialysis would be all about staying alive, and more to the point starting before you get to a point where you are too sick to handle starting it very well. I know I wouldn't want to have to deal with the constant nausea, throwing up and all the rest of it on top of starting D.

This is in contrast to the transplant question where the option of a transplant as a treatment option means going from a stable, but restricted lifestyle to one with more freedom, energy and health with a successful transplant - in that case the risk is worth it (to most people, anyway).

in Essence in the first case you're risking worse physical symtpoms-leading to death - by putting off dialysis, in the second you're "risking" a better quality of life and health.

When you look at it that way they're almost opposite!

[monrein]

Excellent framing of the issue there RM.

[Rerun]

You have already gotten really good advice here.  There is no way I would start dialysis before I needed to.  There are people who only do dialysis twice a week because they aren't that bad.  HELL NO!  If I didn't "really" need dialysis I would be out playing, or reading, or home doing stuff. 

I went by my lab numbers.  I already felt bad because my transplant was failing.  I couldn't tell if I felt bad because of depression or really was not doing well.  So, when I hit a GFR of 9 I started dialysis.  Did they push and scare me into it?  Yes.  But, I guess I had to start sometime.

I've done them all and PD is the best.  You can always do HD if PD doesn't work.     

[sico]

I had no choice on when to start dialysis, which i think made it a lot easier.
ESRF does creep up on you gradually, i just thought i was a bit unfit. But no.
I was told PD would help to retain what little function my kidneys had left, still pass some urine. A good thing.

[BrightKismet]

I feel that I am unfit too. But I had 3 months continuous arthritis attack on my ankles every other week at the beginning of the year. I had to use crutches a lot and sometimes when its severe I am bed ridden. So I am building up my activities again, buts it's sometimes catch 22 as doing sports can set an attack on. So I am swimming more now to build my fitness again.

But is it that I feel unfit, or is this a common kidney failure symptom. I wonder if others felt this before starting dialysis. I mentioned before, I drink water like a fish, and I pass urine regularly (and quantity) fine, and I don't have any swelling due to kidney (only when I get a arthritis at affected joints). Is having a good urine function a good sign and a good indicator. I.e. does being out of breath have to be in conjunction with weak urine function to be a strong sign to start dialysis?   

[sico]

I feel that I am unfit too. But I had 3 months continuous arthritis attack on my ankles every other week at the beginning of the year. I had to use crutches a lot and sometimes when its severe I am bed ridden. So I am building up my activities again, buts it's sometimes catch 22 as doing sports can set an attack on. So I am swimming more now to build my fitness again.

But is it that I feel unfit, or is this a common kidney failure symptom. I wonder if others felt this before starting dialysis. I mentioned before, I drink water like a fish, and I pass urine regularly (and quantity) fine, and I don't have any swelling due to kidney (only when I get a arthritis at affected joints). Is having a good urine function a good sign and a good indicator. I.e. does being out of breath have to be in conjunction with weak urine function to be a strong sign to start dialysis?   

Thinking you're just a bit unfit is a common symptom in younger people approaching ESRF. Your body is better at hiding the excess fluid when you're young. I still passed urine like normal when i ended up in hospital, i think that was because i was that overloaded! Seriously i don't think decreasing output has to be in conjunction with shortness of breath. If your health care team want you to start dialysis, it's probably good advice. When your eyesight starts to get blurry like mine did you'll know you've waited too long, that freaked me out. I'm lucky it's 95% better now.

[twirl]

that is not the question when death is the answer

[MandaMe1986]

I don't think I would start dialysis until I needed to either.  But I have read, known a few people who said they didn't feel that bad before they started.  But once they were on it for a while and got past the worst that comes at first. Said they didn't realize how bad they felt, cause they had just gotten used to feel like crap and thought it was normal.  So you might feel worse then you think, and then the question is would it be worth it to feel a little better?

This is something that only you can know what is best.   I do wish the best of luck to you.   

[del]

The type of dialysis you do is a personal choice. My husband has done PD, in center hemo and nocturnal home hemo.  The nocturnal is his choice  of treatment. He hooks up to the machine 7 hours a night 5 nights a week. All his days are his to do what he wants. As for a normal life style hubby's is as normal now as it has ever been!!!  He does the things he has always done!! It has been his choice not to even go on the transplant list!!  he is doing so well he doesn't want to risk having a lot of side effects from the transplant drugs.   It sounds as if you have a lot of the symptoms of kidney failure now - itching, trouble breathing.  Please don't wait until you are really sick to start dialysis.  Hubby started early (before he got sick).  He went through the very sick part when PD stopped working for him and he had to start hemo.  It was not nice!!

[koutsounel]

As most of us are not doctors, but patients or carers, we tend to see things from a different prespective and try to understand what is best for our individual circumstances.
In my son's case we didn't have much of a choice, as the reason for him commencing dialysis was that he had both kidneys removed. However, what the doctors explained to us many times was that dialysis doesn't do him any good, it just keeps him alive. Dialysis gives you 20% renal function, and this is just above the limit for someone not to need dialysis. Bloods are far from good, and with a pd catheter you are prone to infection. Also the blood pressure needs constant monitoring, especially with a person my son's size it could be quite dangerous. This is also why children are given priority to transplant.
PD as an option only lasts a maximum of 5 years, and this is without significant infections - the peritoneum looses its ability to dialyse with time. There isn't a time limit for hemo(as far as I am aware), but children do run out of vessels very quickly - and they need at least one vessel to connect to the new kidney. With adults hemo is more straightforward, and they can do it for many years.

[Rann]

My dad knew that dialysis was down the road and after researching decided on pd. 2 days before the catheter procedure he was admitted to the hospital for congestive heart failure.....cause by renal failure. So they put in an emergency perm-cath and he woke up in hemo-dialysis. Stayed on that for a few horrible months and then got the pd catheter inserted. Had to wait for that to heal, then had to be trained for pd at home...all the time still going to the dialysis center 3 times a week.

bottom line, if he had gotten the pd catheter sooner we would of by passed all of the above.

If we hadn't of had such a horrible experience in hemo, then we probably would of given up on PD (and all the little problems that go with the first few weeks) having not really given it a chance  And then he would of beat himself up cause he was hating hemo.

make a choice, but be open to having to change dialysis methods due to different circumstances.

If you are fairly young, healthy, can lift 20 pounds of fluid to flush away every morning, have good eye sight, don't get up 4-5 times during the night to pee.... the the nite cycler would really be the least invasive for you.

I wish you the best of luck.

[Hanify]

PD as an option only lasts a maximum of 5 years, and this is without significant infections - the peritoneum looses its ability to dialyse with time.

I haven't been told 5 years.  Actually I haven't been told any years.  Is that really true?  Anyone else out there been doing PD for long?  Kickstart how long did you do it?