I started dialysis too early and I shortened my life.

[Des]

I have been thinking about this a VERY long time. I am convinced that because I was a member of IHD I had my left kidney removed and started dialysis. I got the impression from almost all on IHD that it is no biggy and that you get use to it quickly.

Well it is a BIGGY and I will never get used to it.

I should have lived with the kidney (no matter the pain) as without it, my funtion dropped so badly that I needed dialysis. The way most of the people on here "describe" dialysis it actually makes most people look forward to it as it will make you feel better. That might be true but in reallity it is not what it is made out to be. IT SUCKS!   
Too much info made me choose the wrong option. 

So this is just a post for the pre-dialysis newbies. Prolong your time OFF dialysis as long as possible. IT SUCKS and don't let anyone tell you otherwise.
 

[del]

Des, hubby put off dialysis as long as he could. He had a creatinine of 1700 when he started so of course he felt better with dialysis.  When he started PD  the neph told him he would feel like a new man.  When he went back to see the neph 6 months later he asked when he was supposed to feel like this new man!!  He never did feel well on PD.  On hemo he feels good and can do all the things we ever did but it is still hard.  There are times we would like to go places with friends but if we go we can only go for one night. he could plan treatments at centers but he hates going in center for treatments now after being away from it for so long.  I don't think hubby has ever gotten "used" to it.  I don't know if anybody really does.  He has just learned to live with it.  It does suck though. It is a whole lot better doing dialysis at home though and being in control of your own treatments.

[Riki]

Des, you never get used to dialysis, and I think everyone here will agree that dialysis sucks.  Personally, I prefer it to the alternative.  I'm wondering if you are suffering from depression.  You may want to speak to doctors about that.  It is a common problem among us.  You will not feel the same on dialysis as you would if you had a functioning kidney, but you feel better than you would if you had waited until you were close to death to start dialysis.  I know that one from experience.  You don't get used to dialysis, as Del said, you live with it.  I know for myself, sometimes it's day to day.  I have days when I wonder what the hell the point is, but I still go.  I've been at it 7 years now, but I know that there are others here who've been at it longer.  I have a friend who's been at it for 30 years, since he was a baby

[Tracy]

I totally agree....it very much sucks.  And I have to take it day by day.  I CHOOSE to try and make the best of that day though.  I smile a lot, laugh a lot and yes I AM on antidepressants.  It is one way I get through each day.  I do feel better, but not great some days.  I just say, well tomorrow is another day!!

Good Luck!

Tracy 

[Rodneyss1]

I agree too.  I don't feel better after dialysis...as a matter of fact, I feel horrible.  Not a good quality of life being hooked up to a machine for 5 hours, 3 times a week. 

[MooseMom]

Des, I know how much you utterly despise dialysis.  And I can only imagine how soul-destroying it must be to have been so close to a transplant only to have it snatched away.  I know I would be completely devastated, and I admire you for still even being alive and somewhat sane.

But you have touched on a topic that is important to discuss.  I have discussions with a fair number of people in the "renal community", many of them advocates who do not have kidney disease.  They do a lot of good work in trying to educate patients on their disease and their options.  They write books and prepare educational material which can include websites to visit for support and information.  I always suggest that they include this site, but I hear a lot of resistance along the lines of "Well, the very name of the site makes patients think it is so negative!"  But there is a reason this site is called "I Hate Dialysis", and no one has to explain to you what that reason is.

There is a fine line between "being supportive" and "being realistic" and "telling it like it is."  Everyone finds dialysis to be a difficult proposition.  No one likes it.  But the fact is that some people just cope with it better than other people and just get on with life.  I don't think you are one of those people, and frankly, I don't think I will be one of them, either.

People come here when they are frightened; they want to know that they will be OK.  They want to see for themselves that patients on dialysis can survive and can find bits of life to enjoy.  And those types of patients do exist; many of them post here.  But this is the reason I, personally, post about my own fears and resentments; these feelings are just as much a part of the "dialysis experience" as the practical considerations.  Our psychological health is all too often ignored by our medical staff.  What good is going through dialysis to stay alive if being alive because of dialysis is so profoundly painful?

Your own profile signature says it all...advice you see here is not to be taken as sacrosanct.  There have been medical studies/articles here posted by Okarol that have looked at the disadvantages of starting dialysis too early.  Many IHDers started dialysis when they were on death's door, so of course they are going to say that they felt so much better after starting dialysis because, for them, it's true.

I hope that on top of everything else, you won't add regret to your burden.  When you say that you started D too early, do you think your docs would agree?  Did any of them tell you that you should wait, that you didn't yet need it?  How much longer do you suppose you could have waited?

Are you still on the waiting list?  Do you have anyone else who might consider donation?  How long is the wait in SA?

[gothiclovemonkey]

ya know...
some people DO feel better on D, others feel ok, some feel great... then some.. like myself, feel worse..
Although I AM slowly feeling better than i have, so thats a plus... still not great, still not as good as i had expected BUT better than i was a year ago! ive been on since 07 and it is still rough, hard, and undesirable.

[iketchum]

I do not feel better either. I also feel like my life has been put on a back shelf somewhere. I do as much as I can, but it is a hard struggle sometimes just to get out of the house. Once I stop feeling sorry for myself, I think of all the people worse off than me, the ones with terminal cancer, or Parkinson's disease. We have a chance to stay living, even if our time has been shortened. IHD may be a curse, but it also is an answer to help with your suffering. Misery loves company.

[Brightsky69]

I never liked dialysis, first time or the second time. It does suck with a capital S!
But you gotta do what you gotta do to survive. I waited so long to start dialysis the 2nd time I was as sick as a dog and truthfully and honestly thought I was going to die. I was pukin 24/7     It was not fun.
No matter when you start dialysis it just sucks all the way around.

[sullidog]

It varies from person to person, I felt much better from dialysis and I was near coma tost

[willowtreewren]

 

I'm so very sorry, dear Des. 

It is very different for each person. I'm sorry, too, that the nephrectomy did not help.    For some, it alleviates the pain from the cysts. And for others with bleeding cysts, it helps combat the anemia.

I wish it had turned out better for you.

Aleta

[Jean]

So sorry Des, I know you are miserable and do really hate dialysis. I am not on yet, so cant really know what you are feeling. I have no magic answers, sure do wish I did. But, know that we all care about you and love you and as I always told my kids, cheer up, things will get better, and I surely hope that happens to you.

[pureserenity]

I have just started dialysis. I have had 2 sessions vis a neckine. 1st one i got a really bad headache and felt so drained and 'funny', second one wouldnt have been so bad but they tried to take 2.5lts of fluid off me and i had unbelieveable craps  , it was horrendus, i would have rather have been in labour at least that pain came in waves.
They say it will become easier as my body gets used to it. I truely hope so.
 
x

[monrein]

I'm so very sad and sorry that you are feeling as awful as you are Des.   

[Desert Dancer]

Des, I really wish there were something I could say to ease your suffering. You've really been through hell these last two years and I wish your experience could have been different. I don't think there's anything easy about this disease even under optimal conditions, which you certainly haven't encountered. 

[Rerun]

Des, why do you think this site has it's name?  Yes, we all hate it you are not alone.  But, living with pain is not the answer.  I think you did the right thing.  You can always quit anytime you want.  That is what keeps me going.  I do have a choice.  Hang in there girl.

   

[Des]

Thanks my friends!

But if I knew then what I know now I WOULD HAVE NEVER HAD THE KIDNEY REMOVED.
I would had at least had a few "free" years extra.

I did this to myself and my family and I am to blame. I should have gone for pain management or something but I really thought that if all of you's can handle dialysis : why not me? That was the biggest mistake of my life and I will die regretting it.

Little did I know you's HAVE to handle it not because you are strong but because you have no choice (we all just act strong) (well maybe there is a strong one or two amongst us  )

Just know that I did not make these statements because I am depressed or something. I just had to face the facts and share with every newby out there with the same choice. Think VERY VERY carefully. IT IS NOT A WALK IN THE PARK- It is a crawl in the hospital. 

[Des]

I have just started dialysis. I have had 2 sessions vis a neckine. 1st one i got a really bad headache and felt so drained and 'funny', second one wouldnt have been so bad but they tried to take 2.5lts of fluid off me and i had unbelieveable craps  , it was horrendus, i would have rather have been in labour at least that pain came in waves.
They say it will become easier as my body gets used to it. I truely hope so.
 
x

Thanks for posting.... some days will be better - that's a promise but them some days will be worse _ that is a promise too. Just know that we are here and we know exactly what you are going through. luv

[cariad]

Des, I am so sorry that you feel so awful on dialysis. I think when things are so difficult for you, it is easy to fool yourself into thinking that the other path was the right one. I do remember that you were in a great deal of pain, and the choice you had to make was really trying to go for the lesser of two evils. However, your warning to others is an important perspective. There is just no guarantee that one person will react like another, and not all of us can be the lucky ones who have access to great clinics, any choice of modality, and suffer no debilitating side effects from the machine.

I really hope your luck turns around soon, my friend. It is not fair what you have been through and I wish there were more and better options. Could you contact NxStage and ask when/if they will bring their product to South Africa? Maybe you could tell them that you would be willing to be the first to use it, and to show the benefits of their wonderful (compliments never hurt) product to your country. What happens when someone travels to South Africa with a NxStage machine? Are they allowed to use it? Has anyone done this, or is it really not suitable for air travel?

All I can offer right now are hugs and my deepest sympathy. 

OH, and I just read your latest reply, and yes, a possible "crawl to the hospital" is a great image for others to keep in mind when weighing options. Well said.

[Rerun]

Des, you can say the F** word if you want to.

                   

[MooseMom]

Des, you can say the F** word if you want to.

                   

Yes, farting is OK.

Des, are the only options open to you either PD or inclinic hemo?

[rsudock]

Des dialysis is bullsh** I dreaded everyday being hooked up to that machine.....cuss, cry, and vent it is understandable!

so sorry Des...I don't know what else to say...you made what you thought was the right choice at the time, hindsight is 20/20....

xo,
R

[RichardMEL]

(NOT posted as a moderator of IHD)

I think there are some really good responses here - specially those from dear Cariad and MM. Some very valid points are raised by a number of posters so I shall try to not rehash those too much.

Des, I simply can't imagine where you're at now both emotionally and physically with all you've been through with the denied transplant, the pain, the choices etc. Please know that when I try to put myself in your shoes (please I hope they're not heels!) and how I might feel or react I actually come up empty because I honestly don't know.

Hindsight is a wonderful thing. I can look back at many situations in my life where I'd made a certain decision and later on realised what a POSSIBLY poor decision it was. I want to hilight that word POSSIBLY. To my way of thinking each and every moment of our lives we make choices based on where we're at in our lives, our situations etc. Now it could be a small one that you don't even think about like - what sort of coffee do I order? Or will I take out the trash now, or do it later, and so on. Then there are the much bigger ones, that really impact our lives in any number of ways. Whnever I look back and think "I should have...." I quickly try to remind myself that AT THE TIME I made the best choice for me then - knowing what  I knew, where I was at, how I felt etc.

Turning that into an example, and this is onee thing that Cariad I think brought up, is that at the time you decided to get the kidney removed and go onto D, you were in great pain, and you had that choice. You had to endure something horrible and make a choice to relieve that. I would also hasten to add that I'm sure you had medical advice and support on what was best to do, not just folks on the internet (eg: IHD) giving advice (which can be taken with a grain of salt). A choice was made. Now, you look back with things not going so well, and you think maybe it would have been better to have held off. Unfortunately you can't know that for certain. You can't be sure just what would have happened had you kept that kidney in and waited.

It's like betting on .. well anything.. but lets' take horses, because I'm certain my donor was a bit of a punter, and I've found myself drawn into it a bit. So, I look at a race, and pick out the best horse I think has a shot: I look at the form, I look at the track conditions, I look at the horses recent history, how it's done at that particular venue, or with the jockey, how it handles the ground conditions eg if it's better on soft or heavy tracks, or so on, and I look at what the experts are tipping, and make a judgement call - hopefully reasonably well informed. I then decide how much I will back the horse for. Do I go straight for the win? or do i backan each/way or just for a place. Again, hopefully well informed.

The race runs. Anything could happen. Horse could win, or it could just be overtaken by a better horse. The jockey could fall off, or the horse could have a fit and not even start (all of these things I've seen happen in the last week alone!). Some things you can't predict. You can figure a likely outcome - hence a "favourite" but it's by no means certain.

So let's say the horse wins big. I can think "If only I'd put $50 on instead of $5!! I'd be 10 times richer!!!" but, if I'd put that $50 on, and the Jockey falls off the horse 200m in, I've  lost my dosh. So I have to live with the judgement call I make before the race. Now me I'm conservative by nature, and I only EVER bet what I decide I can live with never seeing again (so I go in thinking I won't win, and if I do - sweet). Some folks, some who have a problem with gambling probably, are the ones who DO put the $50 on, even if they can't afford it, or even still will put that $50 on a rank outsider hoping the 20-1 chance will come home - while it does happen from time to time, it's not the norm.

So anyway to bring this all back to the kidney issue/dialysis choice it's the same thing. If it was me in that pain facting the choices and being told - by the experts mind you - that the best option (or, the favourite if you will) is to get that bugger removed and get on D, then I'm sure I would have put an each way bet on it,a nd taken a chance. With kidney disease, unfortunately, it's not a race you can decide to not bet on at all (which is often one luxary I take up when I figure the variables and chances are too great and it's not worth it to stake money and just sit back and observe what happens). You can't do that with kidney disease, you have to take a punt.

Right now, it seems like you picked on the horse that came 4th, but for mine,t he race has just started, and while your runner might be in the middle of the pack, there's a long way to go, and you can still come out a winner!!

This rather rambling and poor example filled point leads me to something else I wanted to commen on. No, not more horses I promise !!!  As a few posters wrote, D is tollerated better by some than others - for any number of reasons - general health, other conditions, stress, age, treatment quality, diet, meds, compliance, fluids, skill of treating physicians, and many other things all can have an affect. I'm really sorry that, for now, Des is having a tougher time than most with dialysis. I think ALL of us who have been on that machine have been there (yes, even me who is very positive about D in the main). I've had days from hell and times where I just could barely function very well. Luckily those times have been few, but I've had them. I think most folks reading this who have been on dialysis for any length of time could relate to that. Having said that, it IS generally true, I feel, for most people to stabalise and be able to have some quality of life whilst on dialysis. Again, everyone is different, and it's perhaps not wise to generalise, but D is what keeps us alive. As Riki wrote - it's better than the alternative!

This brings me to another point - and that's about IHD giving the impression that dialysis was "great" - I don't think anyone here has ever writen or implied that (no wait, I can think of someone actually!  ). I think most of us (again, not trying to generalise or write for anyone else) see dialysis as one of those nessescary evils that we have to endure as part of treatment of this terrible disease we have to live with (and yes, I'm sure you're thinking 'yeah but you have a transplant you have it good' - and I can understand that potential point of view, but just to be clear I know tx is but another form of treatment, and my kidney could fail any day and I could be back on D - and just the other night I was lying in bed contemplating THAT prospect, and it wasn't fun because while I generally tollerated D pretty well on my first time around - there's NO guarantees that things would be the same whenever I next have to go back to that machine). For mine, I was happy that in general dialysis allowed me to work and live a fairly full life within the restrictions. Sure, I wasn't climbing mountains or zooming around like Bill Peckham, or being a guru of the film industry and general all around legend like Zack, or countless other long term dialysis patients on this very forum, but I was pretty happy with the way things went. That doesn't mean I ever thought dialysis was "great" - maybe "great for me" would eveb be a stretch to say, but probably more accurate in that it gave me what I needed - life.

Des, I'm sorry you have felt that in some way IHD and the general view on here somehow contributed to your own experiences and/or decisions. As you wrote you're the one responsible for your choices. It may yet turn out that things improve and it won't seem like such a bad choice after all - I know all of us here hope that very much! I do feel that the majority of folks on here post from their genuine experiences and "say it like it is" - both the good and the bad.

What I'm waiting for very much is things turn around for YOU, and YOU can start posting about how well things are going for you, and that hopefully you can get positive progress happening on that transplant front.

by the way, I don't think ANY of us would have ever signed up to this site if we truly felt dialysis was "great" - I mean while the sitename of "I *HATE* Dialysis" is contraversial to some, I think it instills a core agreement by everyone that joins up. At the core - we don't like it. We need it to keep going, but it isn't great. It's a horrid and crude process(but the tech is improving every year, which is encourging) and we do it because there are some things more important - life itself.

Like I said while hooked up. I don't live for dialysis. I do dialysis to live.

hang in there. If you can't, I'll write another bloody long post and this time write about Greyjounds!!! You have been warned!!!! 

[*kana*]

For me it was the fear of going on Dialysis that made me put it off so long.  I felt so much better after I finally started that I don't regret starting when I did. 

You really don't know that you shortened your life by going on dialysis because NOT being on it when you need it shortens your life as well.   I hope things get better for you.

[AlasdairUK]

Hi All, yes, some very valid points have been made. If I could leave the emotional element out of dialysis and try offer my views on feeling physically better with being a dialysis patient. I've had both poor - excellent dialysis.

For me the change from feeling poorly to feeling not just well, but healthy on dialysis came down to effective dialysis, balanced diet and very importantly, fluid control (which I know is very tough), this also means your dry weight needs to be accurate.

As you have a fistula, hopefully it is strong enough to dialysis with a high blood flow rate; this will definitely make you feel better as your clearance is that much greater. The length of time is important and running slightly longer helps with blood clearance, but also with fluid being reduced at a rate that is a little gentler to the body (I understand the desire to get off the machine as you may be feeling unwell).

Diet with both food and fluid is important and over time you get to know what works for you and this helps with your sessions, but please speak with your doctors to discuss options on how to improve your dialysis so you feel better off the machine.

Please feel free to rant to us as we are all sympathetic.

Alasdair