I got my prognosis--and I'm feeling VERY depressed

[RightSide]

I started on in-center HD on October 28, after having been officially diagnosed with ESRD the month before.

I saw my neph two days ago, and I asked him flat-out about my prognosis, a subject he has been studiously avoiding.  After some hem-ing and haw-ing, he finally admitted that the usual average lifespan of 5 to 10 years for dialysis patients applies to me as well.  Unless I get a kidney transplant by then--but I have no living donors.  Otherwise, he said that I, like most other dialysis patients, could well die of a sudden massive heart attack some time in the next 10 years.  He was being brutally honest--and I appreciated his honesty.  But it's still very depressing.

I had hoped that my good state of health prior to renal failure--no high blood pressure, no diabetes, no history of heart disease, never smoked--might have enabled me to live longer than average.  But that doesn't seem to be the case, from what my neph said.  If I do live longer than 10 years, it will be due to sheer luck, not due to anything my neph could do for me.

I'm only 54 years old, and the thought of dying at age 59 leaves me in both despair and terror.  For the first time, I find myself facing death.  Actual death.

Is there anything else I could do, or ask my doctors to do, that might help prolong my life?  Angiogram to check my cardiovascular system periodically?  Anything at all? 

Those of you who have survived a long time--what do you attribute your good fortune to?

[petey]

Rightside --

My husband Marvin started on hemodialysis on March 30, 1995.  He was 39 years old.  No diabetes, no high blood pressure, nothing that indicated he would lose his kidney function so quickly and so unexpectedly (come to find out, he had IgA Nephropathy and never knew it -- no other signs until the kidneys quit, and he started dialysis four days later).  He was told at that time that he'd probably live 5-7 years on dialysis if he didn't get a transplant.  He was on dialysis for 5 1/2 years before he got a living donor (me!) transplant.  His transplant lasted a little over three years before that kidney also contracted IgA Neph.  He's been back on hemodialysis since October 21, 2003.  He's as "healthy" today as he was when he had his transplant.  He just had a checkup, and all labs were terrific!  (We're doing home hemo now -- oh, it's great!)

Marvin doesn't attribute his longevity on dialysis to luck.  He says it really involves two basic things -- (1) he's done exactly as his doctors said -- no skipped treatments, no signing off early from treatments, takes his meds as prescribed, watches his diet, watches his fluid intake like a hawk; and (2) he's maintained the BEST attitude about it -- he doesn't let it get him down, he enjoys every day of his life, he doesn't stop going, he won't give up, he won't think negatively, and he won't let ESRD and dialysis control his life -- he has embraced this disease, accepted this disease, and plans to triumph over this disease.

What do you do, you ask?  Know your body.  Manage your body accordingly and take care of it (and especially your access).  Do what the doctors tell you to do.  Research the disease and the treatments.  Ask questions.  Knowledge truly is power!  Keep your chin up.  Look around you -- for you don't have to look far to see that there are many who are "worse off" than you.

And, as my Marvin says, "ESRD doesn't have me.  I have it!"

[Tinah1968]

WELL SAID PETEY.. I TOTALLY AGREE AND LEARN EVERYTHING YOU CAN ,ASK  LOTS OF QUESTIONS...   

[okarol]

I am sorry RightSide, but it doesn't have to be so bleak. They told us that Jenna had a life expectancy of 30 years - total, if she stayed on dialysis. Her chances are much better with a transplant, so we worked hard to make it happen. Thank God a stranger stepped up to donate. But there are no guarantees, as you know. Hopefully she's got the best chance possible. Keep up with your healthy habits, stay hooked in with other patients who are supportive, and do your best to get a transplant if that's what you want. Dialysis is improving all the time, and it's an area of medicine where research is plentiful - there's no telling what they will come up with next. Hang in there my friend, we are here for you! 

[Zach]

As one who is quickly approaching his 27th year on in-center hemodialysis, you need to be in control.

The more hemodialysis the better--Time and Frequency matters.
Learn to manage the renal diet--Don't be afraid to eat, and always take your phosphate binders.
Engage in a regular exercise routine--Both aerobic and light weight resistance.
Understand your monthly chemistries.--And ask questions, always.

Information=empowerment=A healthy Life.

[monrein]

All three previous posters have covered the essentials and I would add one more thing.  Worrying about dying from ESRD is not going to do a thing except stress you out which is an extra risk factor.  Control what you can,  best quality dialysis,  diet and exercise.  The exercise helps your health but also is the best anti-depressant I've found. 

Hang in there Rightside.

[BRANDY]

Zach--- you are inspiring. Its nice to hear someone who has been there and is still in a good frame of mind about the situation. Its got to be hard , but you are still in control it sounds like

[Lucinda]

Hey Rightside.  I start dialysis in a couple of weeks and I'd like to think my attitude is a good one.  I have no intention of talking prognosis with my neph because everyone's situation is so different.  Look at the people on this site who have been on dialysis for over 20 years. I am 48 and age wise not far behind you.  I know it is a cliche to say I could go out and get hit by a bus tomorrow but I am not going to waste precious time thinking about what is going to happen tomorrow.  Frankly, if I die of sudden death it really is probably the best way to go.  Don't waste time thinking about it, just live every moment.  I think there are others on the site who would agree that having uncertainty about their future makes them enjoy every moment.  You get a lot more value out of the life you do have.  I feel disgusting at the moment so I am not doing much exercise but when I do exercise I feel much better.  It gives you a real sense of well being.  Keep coming on here, get as much knowledge as you possibly can about your situation and don't be afraid to say no if something doesn't feel right to you.  Take control of your own situation and don't believe everything your doctor tells you.  They only have statistics to go on.  The best we can do is improve those odds by taking care of ourselves.  Improvements are being made all the time.  Ten years is a long time in kidney research.  Live every day like it's your last and try not to waste too much precious time worrying about a situation that can't be changed.  Don't waste 10 years worrying about your prognosis. In 10 years they will probably throw a new statistic at you that you have another 10 years and so it goes on.  Man, if I thought I was going to be dead in five years I would be depressed as well.  But my guess is that when it does happen it will happen quick enough for me not to even give it much thought. Convince your head you are healthy and living your life and your body will follow.  And by the way, your doctor wasn't just been honest, he was being a pessimistic bastard like most of them are.  Beside that, I think he is wrong.  If you do your research I think you will find that you have a much higher prognosis at your age with no secondary problems.  He must have been looking at very old statistics.  You have a really good chance at a really good life.  xx          

[Zach]

Remember this:

The patient who lives the longest is the one who gives the ulcers, not gets the ulcers.

[jbeany]

Doctors love a one-size-fits-all approach.  Don't let some average stat turn into a self-fulfilling prophecy. 

I was diagnosed at 13 with juvenile diabetes.  The life expectancy they gave me was 50.  I'm 38 now.  Maybe I'll make it, maybe I won't, but I prefer to think of everything after 13 as a bonus.  Without modern meds, I'd have been dead before I was old enough to drive a car.  Without dialysis, I'd have been dead two years ago.

Getting involved in your own care, and being educated about the things you can do in spite of the kidney failure will help you beat the odds.

Do remember though, if all of our positive spin pep talks aren't making much of an impression right now, that you have suffered a loss and you have every right to be depressed and mad.  You need a bit of time to mourn the loss of your health and your personal freedom.  We all have days when we vent and whine about what has happened to us.  That's normal, too.  But finding the positive can actually help you live longer, so it's worth working towards.

[Rerun]

I have to say that my Faith in God and believing there is life after death keeps me at peace.  If I'm wrong.... so what, but if I'm right what a beautiful place eternity shall be and I don't want to end up in HELL! 

The fact that I know where I'm going gives me the power to not let the doctors scare me into doing anything I don't want to do...... like getting fistulas all over my body to stay alive. 

I'm here as long as God allows me to stay and has a plan for me.  Then I'm off to a better place.     

[TeenHatesDialysis]

Rightside -

I know a couple of people that have been on dialysis 20 years, don't want a kidney, and don't plan on dying. Try to stay positive. I just found this group several days ago, but they are the best. Hang out here and get additional support from friends, family or local support group.

I love Zach's advice:

The patient who lives the longest is the one who gives the ulcers, not gets the ulcers. 

[RichardMEL]

Got to say I've never discussed this with my own neph (apart from the first one I saw who told me I had 2 years flat out - that was in 1993) with my new neph (had since '93) we've just taken it as it comes. Of course I am aware of the statistics and all that but in a way I'm sort of in Lucinda's boat - if the heart attack comes and takes me suddenly well hell that sounds like a pretty "good" way to go (I know there are no 'good" ways but I'd rather it be quick and relatively painless than something prolongued and horrible). But I don't think about it. I focus on the possible future of getting a transplant (whenever that might be) and in the meantime just getting on with it. I focus on my work and other things rather than trying to focus on negative stuff about health. Sometimes it's diffiicult I'll absolutely admit that (and I'm going through a low period right now - but it's not really because of my health - it's other things). As Zach and others have said it's important to follow the diet restrictions (as sucky as they are... !!) and take meds as directed and keep everything as stable as possible. I am a hawk for my labs and demand the results as soon as they are in and keep an eye on them myself. Information helps so much to understand just how it impacts you and why it is important to keep fluids in check, or take binders, or all the rest. I also do a lot of walking as a form of exercise (it's easy to do!) and I like to think that I'm sacrificing now in terms of diet, fluids etc for a much better outcome later if/when I do get a kidney.

Zach and others are prime examples that Dialysis can keep you going for years - and moreso lead productive and good lives (again, check out the poster boy Z man!). There's a bloke in my unit who loves to yell at everyone how he's been going 19 years!! So don't think stuff like "I've only got 5 or 10 years" - in 5 years you could well have a kidney transplant anyway!! And at the very least you will have plenty more time to spend with your family and friends.

So hang in there and try to think positive. A nurse of mine once said that attitude is half the battle and a positive attitude puts your body in the right frame of mind to accept all that happens. It may be a croc but I choose to believe, at least in part, that being positive is way better than being negative. Besides sitting in the chair looking at the needles and feeling miserable ain't going to help anyone - specially not me.

The docs have to disclose the odds and all that, but you also have to remember those statistics are taken from the general population of dialysis patients, which is skewed heavily to the older end of the spectrum. And trying to be delicate about it - a lot of those 70 and 80+ year olds probably would only have those 5-10 years ANYWAY. So you can't just use that figure on yourself. Everyone is different and chances are good you'll still be rocking on with you're 74!

[Joe Paul]

Live it day to day. No sense in thinking about what may come to pass, live for the moment 

[Trikkechickk]

My doctor gave me the same prognosis based on statistics.  However, included in these statistics are those in very poor health to begin with/ so these deaths mess with the average over all.

[2_DallasCowboys]

Hi,

If I recall, there have been previous topics on this but I can't seem to find
them.  What I do know is what I have read -  these stats don't take into
consideration the fact that many, many dialysis patients are very much up
in age and also they are  unfortunately suffering from many various other
ailments.

My hubby is the D patient, and has been on D for almost 3 yrs.  I watch his
diet like a hawk and am a firm believer that this plays such an important part

Also, knowing every inch of what is being done to you at the clinic is vital.

I truly believe a positive way of thinking is the best way to be with this
condition, and having a hands on with all of your proceedures is vital.

I know many of my friends here are much more knowledged than I and I hope
they will respond to this, specially the fact that these stats DO NOT factor in
so many other things.

Anne

[twirl]

we had a man in dialysis who was on dialysis for over 27 years   
he died
but he had been on dialysis for many, many years

[Sluff]

I hate it when the Doctors try to play God. These are only statistics Rightside but some of those numbers include people who are very sick before ESRD and includes people who may have very well died wether they were on dialysis or not. Take this time to live your life to the fullest and live to live not live to die. 

[kitkatz]

Ten years doing the Dialysis thing and counting on more.

[paddbear0000]

As someone said on here one time, it's not the actual dialysis that kills you. It's all of the consequences that do. As long as you take care of yourself, you should live a long life. Watch your diet, take your meds and exercise. Just do what every person, on D or not, should do to maintain a healthy body. You said you were afraid of a massive heart attack. Have you had any testing done, like an echocardiogram or stress test to see what shape your heart is in? What was you diet like before ESRD?

[thegrammalady]

having worked in market research, i know how easy it is to skew statistics. so i just ignore them.  when i read your post my initial thought was, interesting, i already know several people who don't fin that prognosis. it's like the dietitian i heard tell a new patient's wife. "if he EVER eats any cheese, his phosphors will never come down" oh really now! watch what you eat. never put anything in your mouth, except water, without binders. go to all treatments and stay the full time. don't wait for the dietitian to give you a lab report. ask the nurse for it the session after they are drawn then ask your doctor to explain what you don't understand. you'll be surprised at the difference in what the doctor gets verses what they give the patient. and it's not difficult to learn what everything means. learn what's best for you. i'm the pushiest patient at my center and very proud of the designation.

[RightSide]

Thanks, guys and gals, you had some good ideas there.  And you're giving me encouragement, which is more than I got from my neph. 

It does seem like the more dialysis you do, the better it is health-wise.  But it would be difficult for me to fit much more HD into my lifestyle, so I'm looking at PD, which I can do at home a lot.

jbeany:  There aren't a lot of places I can vent--I'm thankful for ihatedialysis.com.  In the dialysis center, I already yelled once when a dialysis nurse tried to work on me while she was coughing with a nasty cold.  I shouted that I wasn't going to sit there and be exposed to all those viruses.  They found me another nurse, but I'll bet they wrote "emotionally unstable" in their charts of me.

One female patient and I seem to be the only two "pests" in the dialysis center--demanding to know what's going on, asking very tough questions, refusing to go along with something we don't understand, etc.  Everybody else seems to just lie back stupefied and let the nurses and techs do their thing.  That's just not me.

It's been a long time since I had my cardiovascular system checked.  I know I'm out of shape (though not overweight); the bone pains in my legs and back limit the amount of exercise I can do.  My neph said that as part of my evaluation for a kidney transplant, those tests will be done, so I can kill two birds with one stone there. 

[petey]

One female patient and I seem to be the only two "pests" in the dialysis center--demanding to know what's going on, asking very tough questions, refusing to go along with something we don't understand, etc.  Everybody else seems to just lie back stupefied and let the nurses and techs do their thing.  That's just not me.

Nothing at all wrong with this behavior, RightSide.  In fact, I think that's the way to be.  Marvin and I are both very, very involved, active, inquisitive, and knowledgeable about his disease, his care, and his treatment.  Of course, Marvin is sweet and pleasant when he has questions/concerns/complaints.  I, on the other hand, can be a royal bitch about it if I feel he's not getting the best care, immediate attention, straight answers, etc.  I'm sure his doctors and nurses say (behind my back), "Poor Marvin!  I don't know how he lives with that bitch."  But, then, he is alive, isn't he?  I like to think my aggressiveness and tenacity have something to do with that fact.  Give 'em hell!  This is your body, your life, your future -- don't settle for anything less than the max!

[RichardMEL]

I once asked one of the chief nurses if they were annoyed with me because I do ask stuff and tell them what I want and keep track of my labs, my machine etc.. and she said to me it was fine because understanding your treatment is a positive thing - and that I wasn't demanding or annoying about it. After all knowledge is power. I think if I didn't learn anything - kept asking the same things - or demanded unrealistic things the story would be different but they seem happy enough with me. Now when I ask for lab results they print them for me and don't give me the line that "we'll tell you if there's anything you need to worry about" (which would really annoy me). Luckily my primary nurse is very supportive also and she always explains things and we work through things together rather than her just telling me stuff or whatever. Sounds like I am in a good unit.

The people that just lie there and let themselves be led.. well I can understand why - for some they are too ill to deal with it. Others don't really understand very well - either because English isn't their native tongue - or they just have no wish or desire to. Still others I think have an inbuilt faith that they will be looked after and it's enough to deal with their condition rather than add to it worrying about labs or machine settings or whatever. I have no problem with faith - and the staff DO look after all of us.. but I get much more peace of mind knowing what is going on, and why, and that I can make an informed (hopefully!) decision about my own treatment. I go by the idea that if you don't care about yourself and show an active interest in your own treatment.. well who else will? At the end of the day it's just a job for the staff... for me it's my life. So I am serious about it.