Life expectancy on dialysis.

[aharris2]

We are fully aware his life expectancy won't be as long as a friend we know that has been on dialysis 21 years and is always on the go with life.

But it could be. Don't just write it off!

Charmed, you are in the worst of positions, wanting a loved one to fight for life yet watching him self destruct. You didn't say whether or not your husband ultimately did skip the sessions he's asking to skip, did he? How's his bloodwork? If it is okay, don't worry about what he is eating.

Sleep apnea - treatable, no need to worry if treated.

Parathyroidectomy? If his hyperparathyroidism is not responding to medication, don't procrastinate. Get it done before his bones are affected. This is a significant quality of life issue.

Diabetes, smoking, and limb loss... Here it is, something your husband can influence. As you know, diabetes damages the circulatory system and smoking constricts blood vessels - a 1-2 knockout punch for the extremities. How's his blood sugar control? The body will grow "collateral" blood vessels, enhancing (not restoring to normal)blood flow to areas with damaged vessels, but in the face of smoking and diabetes it is a losing battle. Your husband is facing his first amputation (best of luck with the vascular surgeon). His own actions will influence whether or not the process continues. The greater the loss the greater the impact on his everyday activities.

Dumping that on your 13 year old son is pretty selfish - he needs to think of that 13 year old each time he lights up! If he doesn't care about himself, how about you and the kids?

Depression is a killer and is probably reflected in his self-destructive behavior. I hope finding that t-shirt to be funny marks a turning point of some sort. Best wishes to you and your family, and happy 18th anniversary this August. I wish you both many many more!

Alene

[CharmedMist]

I've told him he owes me to make it to at least our 25th anniversary. Gives him something to shoot for when he's in his "I'm so done with this" attitude.

He does skip the sessions sometimes, but I try to make sure at the very least we get in our 5 days a week.

However, he's ALWAYS had a problem with the fluid retention. He can easily be 5-7... and once even 11 kilos over his limit. With the home machine, we average taking off anywhere from 3 1/2 up to 5. When we do 5, it's a 5 hour session too.

He uses the sleep machine, so that does help.

His parathyroid - not sure exactly at what stage it is, I know even on meds for a long while it kept going up and up. They are talking surgery, but he never gets a definite answer from them of when or what he should do to schedule it.

And I agree about dumping it on the kids being selfish. We have three at home still, ages 13 (boy), 12 (girl) and 11 (boy.) I still work full time as well and we do the dialysis when I get home in the evenings. Life is never dull at our house, but it certainly is repetitive.

[RichardMEL]

5, 7 and 11 kilos over - and you do nightly (ok, 5/7 nights) dialysis??? That's mind boggling. Does he just not follow ANY restrictions on his diet/fluids? Doesn't sound like it. That's freakin' scary.

I absolutely agree it's so selfish to put it on a 13 year old - a 13 year old who clearly loves and cares about his father, and has to watch this self destruction along with you, be helpless, and then told to "step up"?! geez, what message is that giving? "When it gets all too hard, just give up?" thank you Homer Simpson.

Like Alene said - he has control over some significant aspects of his own situation/treatment - his smoking, his fluids, his diet - I think changes in those areas would significantly improve his overall condition. YES it requires will power and commitment - but it *IS* worth it to make that effort. I look at it as "no pain, no gain" - and I know for me anyway, the gain will be in the future hopefully with a long lasting transplant allowing me more freedom to eat, drink & be merry (and all that). For CM's hubby the gain could well be making it to that 25th anniversary, and beyond, and feeling overall better without the strain of the fluids on the heart, or the effect of severe diabetes and all that.

Reading of situations like this just underline for me how important it is to have that willpower and NOT do the naughty things - no matter how tempting they are.

[kevno]

PLEASE!

You must some how help your husband stop drinking so much! Over the years I have seen a lot of new renal patients.   There is no kind way to say this DIE from being overload with fluid. He must cut down on his drinking! THIS IS A MUST! I do not want to read a post from you to say your husband has died for being overloaded. He needs a wake up call. I have been on dialysis over 20 years now. Only doing 3 x 4 hours weekly. I am still doing long walks, fly fishing, bike riding. Plus much more. Being on dialysis is not the end! look at is as a new challenge! That you and your family need to take on. 

Just a few ideas how to cut down drink.

Get smaller cups
Only half a cup of a drink.
If needing a drink have a ice lolly, or ice cubes.
Take small sips of the drink so it lasts longer.

I am sure other patients on this site have more tricks they do to cut down there drinking of fluid.
Plus remember this site is always here for you and your family 

[CharmedMist]

Thank you for your support, it's nice getting to hear it from other patients and not just nurses and doctors.

I do know he needs to make these changes. I am going with him tomorrow to meet with the vascular surgeon about his toe. Good news was the first check on friday showed blood flow to the toes. But last night when I changed the bandaging, the toe is now almost entirely black, it reminds me of a "frost bite" look.

I'd like to go with him next time to the clinic meeting, but I might forego that and just call the social worker privately or nurse and see if they can get through to him again.

[Epofriend]

Charmed,

(Please don't see this as "piling on") I am diabetic too. There are many reasons for having good blood sugar control, but there's one additional one for dialysis patients: High blood sugar makes you thirsty. I used to have much more trouble with fluid overloading, but I began focusing on keeping my blood sugar down or rapidly bringing down if I found it high. I actually had to explain to the primary care physician the tie-in to fluid overloading. With that, I was prescribed the rapid acting insulin that I needed and the extra test strips to help stay on top of things.

How is your husband's blood sugar? Is it driving his thirst and, in turn, his fluid overloading?

This is for you . Like Kevno said, RENAL PATIENTS NEVER GIVE UP! There is a reward in controlling what can be controlled. I wanted to see my daughters into adulthood. They were just entering their teens when I started dialysis. That was almost eight years ago. It has been a struggle, and I didn't know how far I could go, but my little girls have graduated high school and gone on to college. One will get her degree in August and one has married and will be making me a grandfather later this year.

Good luck to you with your struggle and you husband in his. In the future I hope to read about your milestones too. These things to look forward to have kept me going.

Epofriend 

[CharmedMist]

Well.... when he bothers to check his blood sugar... they've set a goal of 130 for him. But, when I (just now) asked him what his average was (as he's sitting on his dialysis machine) he said "I haven't really monitored it enough to know." Arg... at least he responded with "I need to start doing that."

One thing I've noticed, can you all fill me in, does dialysis or maybe it's the meds that come with it, make you forgetful, confused, unable to think cognatively? Little things that used to be so easy for him are now difficult. Even things like paying bills properly.

[Zach]

He may be underdialyzed.

[RichardMEL]

One thing I've noticed, can you all fill me in, does dialysis or maybe it's the meds that come with it, make you forgetful, confused, unable to think cognatively? Little things that used to be so easy for him are now difficult. Even things like paying bills properly.

Not really dialysis per se, but the kidney disease sure can - it's the buld up of toxins that is doing it - so like Zach says, could be not enough dialysis is affecting things - you did say he skips sessions....

Sometimes I can feel a little fuzzy upstairs, but most of the time I'm still able to add 2 and 2 together and get.. what.. 5? 

[CharmedMist]

Ah, interesting. I never thought about that.

Well, I am sure that does have an effect.

The second thing I believe effected it is when he first got sick, he had pneumonia very badly. He was intubated for 9 days due to it and his oxygen level hovered in the 80's. I have honestly wondered if that in itself maybe effected brain cells.

We saw the doctor today regarding his toe. He told us it does have gangrene but as of yet is not a hopeless case. He's checking for blood clots in the leg, which can be caused by a combo of the smoking and diabetes. Not to mention, first time he had his fistula surgery he had a thrombosis and a pulmonary embolism as a result. The doctor said "once you get blood clots, you can be prone to them again."  He does take warfarin but he will have to stop taking it for 4 days before the arteriogram. At any rate, we're just "taking it a day at a time" with his foot right now and getting "more information" before they decide to keep it or remove it.

[Quickfeet]

high blood sugar can affect your memory.

[mogee]

Well.... when he bothers to check his blood sugar... they've set a goal of 130 for him. But, when I (just now) asked him what his average was (as he's sitting on his dialysis machine) he said "I haven't really monitored it enough to know." Arg... at least he responded with "I need to start doing that."

One thing I've noticed, can you all fill me in, does dialysis or maybe it's the meds that come with it, make you forgetful, confused, unable to think cognatively? Little things that used to be so easy for him are now difficult. Even things like paying bills properly.

It is absolutely essential to tell his nephrologist about this.  Since it is about cognition, YOU must pass this information along to his doctor.  There are myriad causes for memory loss and losses of mental ability.  A physician is probably the best person to sort it out.  My wife has had a similar mental deterioration along with her physically catastrophic multiple sclerosis.

[molldw]

20 years?  I'm only 32.  Apparently I'm going to be the one who breaks the rules!

[okarol]

20 years?  I'm only 32.  Apparently I'm going to be the one who breaks the rules!

There are many people who have made it past 20 years - check this out http://ihatedialysis.com/forum/index.php?topic=9672.0 

[Stoday]

If 20 years is the average, there will be even more who don't make it.

Here's a thought: only those who make it will know they've beaten the average.

Another — I'm 70, so can expect another 4 years. Should I worry too much about excess phosphate? I'm never likely to bear the consequences of hyperphosphatemia in my lifetime.

[malaka]

Averages don't mean a whole lot unless adjusted for two important factors:  age and comorbidities (other diseases).  A patient who starts dialysis at 80 has a shorter life expectancy than one starts at age 50.  Same idea if you have congestive heart failure when you start dialysis.  Your average life expectancy is shorter because of the CHF. 

I'm just short of 60, and I started in January.  I have, according to general stats, about 4.5 year life expectancy.  Nobody, however, can tell me how long I'll live.  The only truth is that I'll live until I die. 

[rfranzi]

Wow. I have been on dialysis exactly 8 weeks. About 2-3 weeks ago, my nephrologist, whom I recently went back to, visited me in the clinic during dialysis. At the time, I asked him about the mortality rate on dialysis. He looked at me with a somber, straight face and said, "the average life span on dialysis is three years." So I asked him to sign my disability forms. He said yes.

I sensed as he said it, there was almost a sadistic tone in his voice (I had criticized his practice in the past and he had told me that it affected him very much, so payback?) Nothing surprises me anymore, but I knew he was being very cruel to me. I DO have a rare, progressive form of kidney disease called fibrillary glomeronerphritis. There are so few people with it that statistics are few, but the ones that exist may support his numbers if in fact that is what he meant.

Either way, I have already wished that I would have died when I hesitated a day before going to the ER when my breathing became so shallow I almost saw mist. I went to sleep insted of calling 911 and made a deal with God that night. If I still had a purpose to fulfill, let me wake up and give me the strength. If all I had ahead of me was suffering, let me go and not drag myself and my family through this. I did manage to fall asleep for a straight 6 hours. When I woke, my breathing had improved. I was so, so pissed off.  I still went to the ER, and they told me I was ready for dialysis and that I had 2-3 weeks to live without it. We began scheduling emergency access right then and it has been two foggy, horrible months since.

Compared to how I felt that night, I feel remarkably better. People don't understand, that doesn't mean I am like them. I still have tubes sticking out of my chest that are attached to my heart (shoiuld be out in another month - can't wait to take a long, hot bath and to swim before summer is over. Ah, the little things). My activities are extremely limited. My mind, well, its all over the place. But, I also believe that, when it is my time, that will be it, whether it be three years or thirty.

Ironically, I was a financial analyst for over 20 years, so numbers are familiar to me. And in this case, they mean little. Let's just say this wouldn't be the first time I've beaten the odds. Besides, along with the grim statistic, my doctor added the truth, that he really knew nothing.

[SugarBear]

Life expectancy does vary for each individual patient depending on other diseases such as heart failure or uncontrolled numbers.

I do know the last data I was told stated at the 10 year mark approximately 70% of dialysis patients have pass.

Dialysis patients are also more likely to pass on a Monday/Tuesday due to their two days in a row without treatment.

[deniferfer]

I don't look at what any doctor says or the data. I was told by one of my doctors that I mite live 5 years on PD, if I was lucky... I was 16 at the time and it was a depressing feeling that I mite not see my 22 birthday. I decided that I was going to beat those odds and that I was not going let anyone one tell me my life expediency. I just say that your timeline for me and now let me show you mine. I have been on D now for 15 years and still going strong. I try not to look at the I can't dos in my life and look at well I can do this. Stay positive and have a good sense of humor about life. 

[MommyChick]

I don't look at what any doctor says or the data. I was told by one of my doctors that I mite live 5 years on PD, if I was lucky... I was 16 at the time and it was a depressing feeling that I mite not see my 22 birthday. I decided that I was going to beat those odds and that I was not going let anyone one tell me my life expediency. I just say that your timeline for me and now let me show you mine. I have been on D now for 15 years and still going strong. I try not to look at the I can't dos in my life and look at well I can do this. Stay positive and have a good sense of humor about life.

Your so right!!!
Keep  & stay positive, good things will come

[Flyinganchor]

It wouldnt bother me to have a longer time.  Not like the day isnt about shot anyway when going to dialysis.

You're right there. As long as I feel OK the other 4 days of the week I can cope. Yes we are dead men walking but we are walking even on dialysis days. Don't let them grind you under I say.

[amanda100wilson]

You won't know how in'line with the statistics you are until you die and then once you are dead you won't know anyway.

[kitkatz]

My internal med doctor looks at me and says I am beating the odds.  Fourteen years on dialysis.

[Lexxtech18]

A doctor once told me I would probably not live to see past 45 years old, and at 25 that is a scary thing to think about. Thinking your life is more than half over... but I will not give up. I will not put stock into something the doctors don't know for sure. I have made it this far, having kidney problems since birth. There has been many times I wanted to just give up, stop going to dialysis, stop taking my meds, but I can't. I'm not a quitter, never have been. I don't intend to start now. I am not a religious person by any means, but I have faith in myself and advancing technology. I believe something amazing will happen in my lifetime that will revolutionize the way we see ESRD and dialysis.

[jbeany]

I knew at 13 that I wasn't supposed to make it to 53 or so, according to the stats at the time for newly diagnosed juvenile diabetics.  Damn, that seemed really far away then!  Not so much now at 42. A 53 year old man then was ANCIENT.  Now I see a 53 year old guy and think, "Gee, he's cute; is he single?"

But hey, I'm supposed to have died from my transplant complications at least twice.  So I just tell everyone I think I look good for being a member of the walking dead.     I plan to keep on doing my zombie walk until someone finally chops my head off....