Dialysis question?

[Wildrose]

Heres my question I asked my Dr today, why is it that someone who is still urinating, ends up losing the ability to urinate after being on dialysis and she replied with "because kidney function continues to decrease while on dialysis". Whoah... really? So what is the point? I don't get it. What is the point of going through the hell of dialysis, running the risks of heart attack, stroke, blood clots, blown veins and who knows what else (i'm sure complications due from not enough fluids).... when your kidney function will stil decrease? If dialysis does not stabilize your condition, why do it at all? Has anyone asked a Dr and actually gotten a logical response to this question? I would LOVE to the know the answer!

PS.. I'm not on dialysis yet because so far I'm refusing. GFR of 9, but I'm feeling 'ok.

[KarenInWA]

Wildrose, the whole point of dialysis is to keep you ALIVE, not preserve kidney function.  Another term for dialysis is Renal Replacement Therapy - which is also what transplant is.  Both of these methods keep you alive, and replace the function that your kidneys will no longer or no longer have. In some rare cases, some people will get their kidney function back and be able to get off of dialysis - even if it's only temporary.  Also, PD has been known to preserve kidney function longer than HD does. But, both therapies are REPLACING the function of your native kidneys, as does transplant.

Also, bear in mind that even though you may still pee, it is not "productive" pee. As your kidney function declines, the toxins build up in your system. You may still feel fine because if your decline is slow, your body adjusts to this new reality. That's what happened to me. However, once I got into Stage 5, it was a quick decline. One week I was feeling fine, the next week - not so much. And yes, I was still peeing. I peed the whole time I was on dialysis - but just barely at the end.  I was on it for 7 months. I had my transplant 2 months ago.

Dialysis is scary, I won't lie. But I will be honest and tell you that once I  started and got my anemia under control, I felt a whole lot better. I continued to work FT, still went out with my friends, went to musicals and concerts, did day trips, basically, still LIVED. That is why dialysis is worth it!

KarenInWA

[RichardMEL]

WR I think that doctor misspoke a little with that explanation and the conclusions you reached was reasonable, but also not that accurate in my view (so it's just an opinion).

I think what the doc should have said is that "Kidney function and production of urine may lessen after starting dialysis due to the machine taking over some of those functions as the kidney function lessens." or even one explanation I heard in clinic once: "The kidneys get lazy when the machine is doing the job." - it's as good as what she said.

While I was on D, my GFR dropped to around 3. Without D doing its thing it's certain I would be much much worse off, perhaps fataly so. D doesn't modifiy your kidneys in any way - it takes over the function for the short(relative to 24/7) period of time you're on it. In this respect the doc was right in saying that the kidney function continues to decrease. Without intevention it may well get to zero depending on the nature of the underlying condition. I think we all know what happens when we get down to those levels.

As Karen wrote really D does keep you at a low, but stable(in theory, anyway) level. It is in no way a replacement for functioning kidneys(of course), but the process can keep you going even with zero kidney function. Also remember that even if one urinates while on D (I did, but not a lot) again as Karen noted, the output will be mostly useless in terms of toxin removal.

I think people focus too much on the urinating aspect around D - if you do or don't. While urine, obviously, contains water and if you ARE outputting water this is a great thing for those on D, all you need do is look at it (yeah I know, not fun subject) to see it would prob be mostly clear because of the lack of toxins. Those toxins stay in the blood and affect you - if you do or don't urinate. D isn't just about removing water - indeed it's more about removing those toxins.

You ask if D "even help?" - there are literally thousands of members of IHD who can have no other answer than "YES" - because all of us are alive because of it. One can argue quality of life in some cases and I'll accept that, but I know without D I would not be here writing about this both without the D process, and then of course my amazing and wonderful transplant.

Dialysis is not fun. We won't kid you. Some people do better than others on it. Inthe vast majority of cases though it DOES help - and getting onit, while scary, doesn't have to mean "the end" or something. Many of us have done D and worked, loved, LIVED, experienced etc and for those of us lucky enough to be able to receive a gift of a tx,obviously have a much more normal life.

Honestly I think you're reaching the wrong conclusion that D doesn't stabalise your condition or that it doesn't help. It does, and it can. It's far from perfect, and a horrid process, and not a cure, but it certainly is a very viable treatment option for many of us.

I'm very glad you're not feeling any ill effects at GFR 9. I got to 6 and mostly just felt tired. You can be assured though, unfortunately, that baring a miracle recovery, you WILL feel it sometime, and with function that low, it may well hit very quickly and strongly - and it may be severe enough to see you wind up in hospital feeling so horrible that you'll wish you started when you felt better - because frankly I think it is better to start when you feel more or less normal rather than rushed into ER like crap and having it all happen around you without any planning or anything.

I'm not advocating starting D too early or when it is not neccessary - but how long is a piece of string? It is one of those unknown variables how each body will react and when it will all get too much.

The stark reality you face is that without treatment, sooner or later you will not survive. transplant is the treatment option of choice, but for those that can't get that, or are waiting, you have dialysis.

You ask for a "logical explanation" - I'm not sure how much logical you can get than the basic truth that "Without intevention one's kidney function will decline till the body shuts down from toxin & fluid overload. Dialysis is the most major treatment (ie: intevention) available short of a transplant, or of course spontaneous recovery of renal function-which is obviously very very rare. Dialysis does not stop the decline in kidney function, but allows the body to continue by doing the job of failing kidneys" - this is why it helps. It makes sense to me. Spock isn't here so I can't ask him, but I'm sure he'd agree.

I think you should try and prepare to start it.. and you should also prepare to realise that it may not be as bad as you expect - sometimes the fear of the unknown is even worse than the thing itself.

[amanda100wilson]

You will get to the point where preserving kidney function is not the aim since preserving life will be.  I will draw an analogy with a sieve.  Imagine you are straining a liquid containing somethin thicker.  Initially the liquid will go through very easily as will some of the thicker stuff ( the toxin molecules) , but as the thicker stuff stars to clog up the mesh of the sieve (the damaged kidneys),  less and less of the thicker stuff, and the water (low quality pee because that is all it is, since the toxins can't gat carried out with it ) will get throgh.  Eventually once the sieve is completely clogged even the water won't get through, or very little of it (end stage renal disease). 

Now at this time you have two choices, dialysis or you die.  Stark choices, but that is the reality of it.  To do well on dialysis, you need to be your own advocate which entails being well-informed.  Your lack of knowlege when you GFR is this low is surprising to me, but then I 'devour' as much information as I can, or it could be that you have been in the denial phase of grieving for the life that you have lost, which is perfectly natural. 

Nonetheless, I strongly urge you to look at the dialysis options available.  I have done PD for a good number of years and am now doing home HD which has improved my wellbeing greatly, as PD was no longer working for me.  Are you a candidate for a transplant.  If you are, then you need to find out if you can get listed,  since the process of evaluation to get on the list can take some time, but the sooner you get on it, the sooner you will be accruing time.  You should also start consiidering if there are any potential live donors at you can ask.  I wish you all the best, because I know that the pre-dialysis phase can be very scary.

[Riverwhispering]

You said "Why do it at all?"    Dang it.. you are young and you have three kids.... duh

[Wildrose]

I really do appreciate the responses and the points of view, but it looks like I touched a few nerves, and I apologize for that. I guess my logic isn't that logical as it doesn't seem to make sense to anyone else. I'm not sure I can even explain it. What I'm looking at and questioning are two factors. Number one: If you don't go on dialysis you will eventually die. Number two: If you go on dialysis you will eventually die. I could go on dialysis and die of a heart attack within a year. Or I could take my chances and not go on dialysis and die within a year.
Don't take my comments at face value. I'm not really as illogical as I sound right now. I'm just fighting it because I'm not on it yet and I'm not looking forward to it.
A large part of the problem is I can't prepare for a fistula because I have no health insurance. They won't do a fistula without insurance because its not considered a emergency procedure. So when I am ready to go on Dialysis they will have to do an IJ catheter as that is considered an emergency procedure. I don't want an IJ catheter due to the inconvenience and risk of infection... I keep hoping the longer I wait I will hear back about insurance I've applied for and then I can do a fistula. So the comment that was made about stop fighting it and just prepare... I can't prepare. I'm stuck in limbo.
Also, I said I felt ok. I did not say I felt good or had no side affects (matter of fact I have ALL the side affects of renal failure except for loss of apetite. go figure). I sleep ALL the time. I've been in bed most of today because I've been tired and felt nauseous off and on. I get sick to my stomache although usually it doesn't last for more than an hour at a time but returns throughout the day and I've never vomited (so far) from it so I consider that to be feeling "ok". If I was vomiting all the time that'd be a different story.

[Wildrose]

Now at this time you have two choices, dialysis or you die.  Stark choices, but that is the reality of it.  To do well on dialysis, you need to be your own advocate which entails being well-informed.  Your lack of knowlege when you GFR is this low is surprising to me, but then I 'devour' as much information as I can, or it could be that you have been in the denial phase of grieving for the life that you have lost, which is perfectly natural. 

Nonetheless, I strongly urge you to look at the dialysis options available.  I have done PD for a good number of years and am now doing home HD which has improved my wellbeing greatly, as PD was no longer working for me.  Are you a candidate for a transplant.  If you are, then you need to find out if you can get listed,  since the process of evaluation to get on the list can take some time, but the sooner you get on it, the sooner you will be accruing time.  You should also start consiidering if there are any potential live donors at you can ask.  I wish you all the best, because I know that the pre-dialysis phase can be very scary.

Amanda, I appreciate the time you took to respond. However I disagree with your analysis. I may not be 100% knowledgeable about how every part of the body works, mainly because I have short term memory and I quickly forget things I learn. However, I have done a lot of research regarding dialysis, kidney disease, and especially the options available. I've taken all the classes offered by the Kidney Center on nutrition and dialysis choices. Due to all this I already know that the only option available to me once I have health insurance is hemodialysis. For personal reasons, PD is not a good choice for me even though I would prefer it to hemo as I am scared spitless of needles, especially a 15 gauge dialysis needle! And home hemo is not an option at this time due to personal reasons. Also as I can not start out with a fistula due to not having insurance, so I will have to have the IJ catheter and that is another big reason why I'm putting off starting.

[lmunchkin]

Wildrose, I understand your hesitances, but if you are feeling alot of these symptoms now, wouldnt if be better to go ahead an have the cath put in and start D.  Get yourself to feeling better now! 

My husband was sick (almost to death) when he went to ER.  We had no idea it was that serious.  I noticed prior to going into hospital, that there was something wrong with him, and even commented as such to friends and acquaintances, but I did not realize it was to this point.  We knew nothing about ESRD.  Talk about Blind and denial, we were IT.  We learned very quickly about ESRD. 

He should have gone to a doctor alot sooner, but typical man, he didnt think it was necessary.  Well it rapidly became necessary. 

The point I guess Im trying to make is, please don't let fistula or no fistula stop you from getting Dialysis and feeling alot better.  No it's not perfect, but you will see that you will begin to have energy and strength that you have admittedly been lacking!  But really, you will know when the time comes, but please, do not wait too long!

All the best to you dear! I know this has got to be awful for ALL of you!
God Bless,
lmunchkin
 

[KarenInWA]

Wildrose,

Please do not go into dialysis with the belief that you will be dead within a year. There are MANY members on this very website who have been on diaysis for years - even decades! The most important thing is trying to maintain a positive attitude when going through this. That is the only thing that will keep you sane. I too, started dialysis with an IJ cathether. I waited too long to get the fistula put in, and ended up getting the cath put in 2 days after my fistula surgery. I started dialysis a couple of days later. The good thing about the catheter is - no needles - and, when it comes time to disconnect you, you do not have to wait around to clot. Yes, the catheter is annoying, makes showering near impossible (I took sponge baths - but a good thing came out of that for me. I like long showers, but not long sponge baths, so I ended up saving time in the mornings!). Another good thing about the cath is you have both of your hands free during treatment, so if you want to read a book or magazine, it is easier to do so. I missed that about the cath once it was gone. But no, I do not miss the cath!

I remember after being on dialysis for 2-3 months, a co-worker asked me how I was feeling. I told him I felt great! And I realized that wow, I actually DO feel great! Later on that day, at dialysis, I got my lab results. Found out my hgb was at 13. No wonder I felt so good! Yes, dialysis is scary, and it is serious. But, it CAN make you feel better, especially if you're in good communication with the staff and your doctor. Speak up if something is troubling you or is not right. I think I was lucky in that my neph was conservative with dry weight and all of that, so I never crashed or had any serious problems. I drove myself to and from every session except for the first one. I did it in the evenings normally, but when I did morning sessions, I was able to get along with my day afterwards.  No one in my life really noticed that I was on it when they were with me. They knew I was on it, of course, but it wasn't apparent.

I hope all of our insights and reading the other threads help you. I *know* it is scary, because I sure was afraid of it a year ago when I was in your shoes. I did not want to start it, but I knew it was coming.  But, once it did, I went forward with it, and did not let it win. That was my biggest thing. I could not (and cannot) let ESRD win.

KarenInWA

[Whamo]

If you want to feel good on dialysis you are going to have to follow the renal diet, including fluid restriction, very closely.   

[Wildrose]

Thanks everyone   I feel a little better now. I know some people live for 30+ years on dialysis. There is just no way to know. As for the renal diet I have every intention to continue to follow it closely and hopefully will not have too many problems with the fluid restrictions once dialysis starts.
Also, my Dr is supportive in my waiting. My creatnine is 5.55 now, it was 5.63 two weeks ago. They consider that 'stable' as it hasn't changed too drastically since I found out in November I was in ESRD.

[Wildrose]

The good thing about the catheter is - no needles - and, when it comes time to disconnect you, you do not have to wait around to clot. Yes, the catheter is annoying, makes showering near impossible (I took sponge baths - but a good thing came out of that for me. I like long showers, but not long sponge baths, so I ended up saving time in the mornings!). Another good thing about the cath is you have both of your hands free during treatment, so if you want to read a book or magazine, it is easier to do so. I missed that about the cath once it was gone. But no, I do not miss the cath!

I remember after being on dialysis for 2-3 months, a co-worker asked me how I was feeling. I told him I felt great! And I realized that wow, I actually DO feel great! Later on that day, at dialysis, I got my lab results. Found out my hgb was at 13. No wonder I felt so good! Yes, dialysis is scary, and it is serious. But, it CAN make you feel better, especially if you're in good communication with the staff and your doctor. Speak up if something is troubling you or is not right.
KarenInWA

Oh Karen, I forgot to say that the info about the IJ catheter was helpful as I didn't stop to think that it is hands free and no needles. I was just more concerned about the risk of infection. Do you know if there are limitations as to where you can go and things you can do while having the IJ catheter in? I mean are you at more of a risk of infection by being near a lot of people?

[jbeany]

No, the cath isn't an infection risk being near people.  It makes a pain to shower, if you can even talk the doc into letting you do it all, and eliminates swimming.

Heres my question I asked my Dr today, why is it that someone who is still urinating, ends up losing the ability to urinate after being on dialysis and she replied with "because kidney function continues to decrease while on dialysis". Whoah... really? So what is the point?

I honestly think you are looking at this upside down.  The function decreases with or without D.  Starting may, possibly, make a kidney lazy - they all say that - but really, it's not like they've ever tested or studied it.  How would they prove it?  Everyone's function gets worse at a different pace.  If you do regular D, with the weekend gap, you will quickly notice that you pee more on the weekend.  When I was doing every other day, I never got that.  There simply wasn't the fluid available to pee out - it left on the machine before it got to what was left of my kidneys.  I don't think the kidneys quit clearing fluid as much as they simply don't have as much to work on in the first place. 
For that matter, some people never stop peeing.  It's more common to slow down gradually, but it's not true for everyone.

[amanda100wilson]

Will you be eligible for Medicare once you start dialysis?  If you are, why will a catheter be the only option?  Will it not be a short-term option only?  I'm not needle phobic but I know that a lot of people are and get over the fear of needles.  In fact, if you can learn to put them in yourself, it hurts less.

Have you spoken to a social worker about your situation?  Maybe if you haven't, you need to, so that you can discuss your options.

I am sorry, I did not mean to sound as if I was doubting your intelligence by what I said, and I really hope that you manage to sort evertyhing out.  Life is definately worth living,  even with dialysis.

[sullidog]

I being one of those typical men waited too long, I was on my death bed, I just totally ignored it til it got too much, If I had to do it all over again I would of gotten screaned sooner. Luckily my kidneys can still clear the fluids, but that's all they are able to do so I just get my blood cleaned, in fact they actually have to give me fluids, and when I get home it all goes into the toilet so yes I am lucky there after 2 years.
Good luck to you.

[natnnnat]

Gregory did like Sullidawg did, until one day he didn't go to work as a concreter's laborer, instead crawled into a gp who recognized the situation and got him to hospital.  Next thing he woke up on dialysis.  He says his first dialysis session was the best feeling he's ever had.  So much for our sexlife, harumph!

[Willis]

A large part of the problem is I can't prepare for a fistula because I have no health insurance. They won't do a fistula without insurance because its not considered a emergency procedure. So when I am ready to go on Dialysis they will have to do an IJ catheter as that is considered an emergency procedure. I don't want an IJ catheter due to the inconvenience and risk of infection... I keep hoping the longer I wait I will hear back about insurance I've applied for and then I can do a fistula. So the comment that was made about stop fighting it and just prepare... I can't prepare. I'm stuck in limbo.

I was in a similar situation. I will assume that you will be eligible for Medicare if you start dialysis. Medicare will cover you from the first of the month in which you start home-based dialysis. So do what I did...I got a fistula the first week of the month, and then a PD catheter the 3rd week, and started PD before the month was over. This was all carefully planned and Medicare covered everything.

I'm no expert on the subject so check with Medicare for yourself to make sure you will be eligible.

 

[gkcoley]

Heres my question I asked my Dr today, why is it that someone who is still urinating, ends up losing the ability to urinate after being on dialysis and she replied with "because kidney function continues to decrease while on dialysis". Whoah... really? So what is the point? I don't get it. What is the point of going through the hell of dialysis, running the risks of heart attack, stroke, blood clots, blown veins and who knows what else (i'm sure complications due from not enough fluids).... when your kidney function will stil decrease? If dialysis does not stabilize your condition, why do it at all? Has anyone asked a Dr and actually gotten a logical response to this question? I would LOVE to the know the answer!

PS.. I'm not on dialysis yet because so far I'm refusing. GFR of 9, but I'm feeling 'ok.

Basic terms...you 'pee' but its jsut water, your kidneys dont filter the toxins from your blood...so those toxins build up and kill you...the point of dialysis isnt as much to remove fluid(even though that is secondary) it filters the toxins from your blood to keep you alive, sicne your kidneys cant...the needles really arent so bad after a few treatments...im 24 and been on dialysis sicne i was 8, hemo sicne i was 12

[Wildrose]

Will you be eligible for Medicare once you start dialysis?  If you are, why will a catheter be the only option?  Will it not be a short-term option only?  I'm not needle phobic but I know that a lot of people are and get over the fear of needles.  In fact, if you can learn to put them in yourself, it hurts less.

Have you spoken to a social worker about your situation?  Maybe if you haven't, you need to, so that you can discuss your options.

So far I am getting mixed information about when medicare starts. I've been told that medicare starts after the first full month of dialysis and I've been told it starts after the first 3 months of dialysis, all this from medical 'professionals'. I HAVE talked to my case worker from the dialysis unit several times and there is nothing to be done at the moment regarding insurance prior to medicare starting. My Dr is the one that told me that the IJ catheter is my only option for *starting* dialysis, once dialysis is started and my medicare kicks in then they can fit me for the fistula which takes 2 months to mature. Therefore I will probably have the IJ catheter for 2-3 months when I was told in class at the dialysis center that it is really not a good idea to have an IJ catheterfor longer than one month if it can be helped (although my Dr told me she has patients that have had IJ catheters throughout their dialysis as there were no other options for them).
I was also told that if I do PD dialysis that medicare will kick in immediately. But PD and home hemo are not options for me due to my living situation.

[KarenInWA]

Wildrose,

Here is a link to a Medicare booklet specifically for ESRD patients http://www.medicare.gov/publications/pubs/pdf/10128.pdf

Page 11 goes over when Medicare begins payment begins, which is the first day of the 4th month of your dialysis treatment (and from what I understand, the first day of the first month if you do home dialysis.) Pages 44-46 have additional options if you do not have health insurance.

(scrolling down to those pages...)

Dang, there's not much there. Something about Medigap policies, which I believe ESRD patients can't purchase in WA state, Medicaid, which means you have to have a seriously low monthly income and little to no savings, or things like Veteran's care. The last thing is contacting your local kidney foundation. I also know that the major non-profit kidney centers tend to have charities attached to them specifically to help out the patients. If you're in the Seattle area, those are NWKC (Northwest Kidney Centers) and PSKC (Puget Sound Kidney Center).

This is one thing I really hate about living in this country - our lack of health care coverage for our citizens. If you were just a few miles to the north, you'd be  covered. Maybe Canada should take over our state...

KarenInWA

[Wildrose]

Karen - Do you know if most ESRD patients on Medicare receive part A and part B? From what I understand part A is free but part B costs around $115 or so a month, plus we have to pay the left over 20% that medicare does not pay on all charges? Is that right?
Does anyone know what the average monthly cost is for a dialysis patient with medicare after medicare pays the 80%?

[KarenInWA]

Karen - Do you know if most ESRD patients on Medicare receive part A and part B? From what I understand part A is free but part B costs around $115 or so a month, plus we have to pay the left over 20% that medicare does not pay on all charges? Is that right?
Does anyone know what the average monthly cost is for a dialysis patient with medicare after medicare pays the 80%?

Yes, that is correct, you receive both part A and part B, and that premium is correct, also. As for the 20%, from what I understand, you can work with the social worker at your clinic and they can come up with the secondary coverage for you. Not sure how the premiums work on that, but those foundations I mentioned may be able to help with that.

I don't have personal experience with that because I have good insurance through my job. It paid 100% from the beginning. I didn't sign up for Medicare until shortly before my transplant, and then I was hit with a big premium bill as they billed me from my Medicare start date of July 1, 2011. Yikes! But, so far, I have not received any bills for my transplant, and it was 2 months ago. I hope that remains the case!

If you already know which center you will be going to, I suggest you contact the social worker and proceed from there. I just wish we didn't live in a country that doesn't care for its own citizens.

KarenInWA

[Subeat]

Karen - Do you know if most ESRD patients on Medicare receive part A and part B? From what I understand part A is free but part B costs around $115 or so a month, plus we have to pay the left over 20% that medicare does not pay on all charges? Is that right?
Does anyone know what the average monthly cost is for a dialysis patient with medicare after medicare pays the 80%?

Yes, you do have to pay for part B.  As for the left over 20%, depending on what state you live in, you can look into purchasing a medigap policy to cover that.  Do speak with the social worker at the center you will be using, there are programs out there to help you with cost.  The American Kidney Fund covers my premiums for both Medicare and my supplemental policy.  All I pay for is Part D...and you will want that coverage when you need to start taking the binders.

[sullidog]

just wondering why your doctor wants you to start out with a catheter? why not get a fistula now while you are feeling ok.

[janetetal]

When the time comes, check with your state and county people. In Oregon if you are below a certain income level they will pay for part B Medicare. Part A is free. There is also a pharmacy program in Oregon. I don't know right now who administers it, but it really covers some of those expensive drugs. Hope they have the same in WA. I'll find out who handles it in OR so you can check with them in WA. Take care. (WR)

Deb