Life expectancy on dialysis.

[Zach]

Zach is my "stat" and hero!

 

[Bajanne]

I agree.  Zach gives me lots of hope.  Statistics are just numbers.  As I told you guys already, my brother was very ill, blind from diabetes, and for the first few years he was not getting adequate dialysis (twice weekly).  Yet he lived for 10 years.
There is no 'list' here and the only choice we have is in-center dialysis.

[Zach]

Thank you everyone.  We're all in it together ... well almost all.

 

[G-Ma]

 anyone could get hit by a truck tomorrow...or a baseball bat... ..my landlords mother had a relative that was on home hemo for 30 years, years ago and my dau in laws great uncle was also on home hemo 30 years up until 8 years ago........I feel I will go on until my time is up.

[thegrammalady]

having worked for a time in market research i'm very well aware of how statistics can be maneuvered. i just don't pay much attention to them.

[paris]

The author of 100 Things to do Before You Die, just died at age 44 after a fall in his house.  It was reported that he got half way thru his list.   So, healthy or ill, we need to just live as well as we can.  I am trying!

[Deanne]

I was diagnosed with kidney disease at age 9. I grew up thinking I would have a very short life. I never expected to see 30, but here I am at almost 47 years old and not on dialysis yet. While I was expecting to die at any moment, I've out-lived several supposedly healthy high-school classmates. Some died from accidents, others from medical problems that cropped up in their adult years. Ya just never know...

I walk through a cemetary every week. It just happens to be on a walk route I take to get to Starbucks -- I don't go looking for cemetaries to walk through on a regular basis (although I do love cemetaries!). Looking around at the headstones, it occurred to me that no one has the right to reach old age. Those who do are just very fortunate.

[The Noob]

ah, but does anyone know the stats on life expectancy for the full time caregiver?

 

[aharris2]

Don't know Noob, but I am hoping for at least one day more than the person I care for so that I will have always been there for him.
 

[okarol]

Don't know Noob, but I am hoping for at least one day more than the person I care for so that I will have always been there for him.
 

  That's my girl!

[Genlando]

You've also got to remember that there's a large number of dialysis patients that simply don't take care of themselves.  This group greatly skews the life expectancy curve.  A lot of these people are self-destructive, and unfortunately, they're counted in OUR statistics. I've only been around the dialysis scene for a couple of months now, but it's shocking to me how careless some of these people are with their health.  A lot of them don't adhere to any sort of restraint in their food and fluid intake.  And those are the good ones.

There's one guy at my center that comes in late for treatments, and always opts to leave early.  By not getting a full cleaning, he's drastically shortening his life.  There's a woman (who I suspect is a crackhead), who won't stay for treatment if she isn't seated within 15 minutes of getting to the center.  And don't forget the guy gets low BP during dialysis because he pops Oxycontin like candy while he's on the machine.  He regularly comes to the center higher than a Georgia pine, with dilated pupils and slurred speech.  Looks like I did in the 70s.  But I digress.

 I say, SCREW statistics!  Back in 1982, as I was about to get married, a friend of mine told me that I should stay single, because statistically, I had a better than 50% chance of my marriage failing.  That didn't stop me from getting married (BTW, my wife and I just celebrated our 28th anniversary).  Statistics don't take into account our attitudes, or our desire to live.  We all have the right to choose, and I choose to live!

[CharmedMist]

I appreciate this conversation. It's very easy to try to rationalize or get to a "this is how long I'll live" mentality, but in truth, the better mentality is simply... "Live every day to the fullest."

There are a lot of things that will make a difference on any one's personal life expectancy while on dialysis. But I think a lot of it is very personal.

My husband has been on dialysis for 3 1/2 years now, when he began, he was the "picture" of health... to the unobservant eye. He was tall, strong, working anywhere from 8-14 hour days, on his feet all day. But behind the scenes, he's smoked since he was 14 years old, he had high blood pressure and was slightly over weight.

However, I have to honestly say, in the last 3 1/2 years, I have seen such a rapid and noticeable decline in his health that it's literally frightening. He now appears to be a 48 year old man in the body of a 70 year old.

Yes, dialysis takes it's toll on his body, but also on the mind and emotions. We do the at home dialysis. We are supposed to do it 6 days a week, but I can't tell you how many times he asks 'can we just skip tonight?" ... well.. frankly, no, we can't.

That being said, his health has become a domino effect and not in the right order.

He was not diabetic previously, he is now... and is now insulin dependant.
As a result, he has severe neuropathy in both feet to the point they've got him on multiple medications for it. He's not allowed to cut his own toenails or do anything that might damage his feet.

He still smokes, though he knows it's killing him. He knows even faster being diabetic with kidney failure. They've warned him how it will close his veins, make them tight, possibly lead to amputation of his legs.

He has been hospitalized 7 times in the last 3 1/2 years from anything from an infection that went septic to a pulmonary embolism and thrombosis. He has supraventricular tachycardia and been hospitalized for that as well.

Sleep apnea, parathyroid issues *may require surgery soon to remove*, thyroid issues, chronic lung issues like bronchitis, pneumonia, etc, etc.

So, all that being said, yeah.. he does often feel like a "dead man walking" but at the same time, we don't give up. 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, we still do a lot together, even if we do it "slower". We camp, go fishing, enjoy nights out with the kids, run to the coast for a night, etc.  Make the memories while you can and do not dwell on the "what if's" or "how long's".

My husband and I will celebrate our 18th wedding anniversary this August, we view every day as a gift and never take it for granted.

Take life, live it and love it. And may you always have enough.

[RichardMEL]

CM - that's tough to read and I'm sorry you're both in this situation... but.... and I don't want to seem rude or insensitive here, but from what you have written at least some portion of your husband's medical issues and rundown are due to his own decisions - such as smoking for so long and continuing to smoke despite the known and defined risks (yes, I know how hard it is to quit) and skipping D sessions - we'd ALL love to take them off (I even had a weird dream last night where I showed up 2 hours late and had a nurse abusing me because I couldn't get my full dialysis in and why did I show up late and I cracked it and walked out?!?!! and I've NEVER been late for a D session!?!? weird)... but you know we need this stuff to keep us at the best level we can be. Essentially hubby is chosing "quality" of life (in his terms, that means smoking, and freedom from the machine) over quantity - and that's absolutely his right, but I'm sure if he magically stopped smoking, did his 6 sessions a week and started exercising things would improve over time.

Again I read this and it sounds so rude and condescending - and I honestly don't mean it that way - I just think in the context of this topic that while a lot of our life expentancy is based on things we can't control much, there's definitely some of it that is.

I suppose when it comes down to it it's all about what your own personal priorities are. Nobody else (certainly not me, despite the tone of this post) can tell you what they should be or how you should live your life - we're all responsible for our own decisions.

I hope things improve for your hubby.

[Quickfeet]

A lot of these people are self-destructive, and unfortunately, they're counted in OUR statistics.

My PD nurse told me about some of the crazy things she has seen on her home visits. The worst; picture an episode of hoarders, then imagine that person doing dialysis in the middle of that mess. A different lady had her cat bite threw her pd catheter and didn't bother to call any one until she became septic.

Unfortunately Richard, I think she is very aware of the effect his life style is having on his health. I hope your husband finds away to change the things he needs to change, and I hope he discovers how to enjoy the changes. People are afraid to change because they are afraid of what they will lose. But it's not about what you will lose, it's about all the things you will gain.

I feel for you charmedmist. I made my ex girlfriend go through something similar. I would sneak salt and potassium. Sometimes when she caught me, she would cry and tell me i was killing myself.

[CharmedMist]

I don't want to seem rude or insensitive here, but from what you have written at least some portion of your husband's medical issues and rundown are due to his own decisions

Oh, trust me, not rude or insensitive at all. I completely and whole heartedly agree. And, I think he knows that, he realizes to some extent.
I have said to him that it feels like a slow suicide when he chooses to not follow the recommendations of the doctors.

At the same time, I can't harp or push or plead or nag. Ultimately, it is his life and his choice. Though it effects us all. (We have three kids at home still.) Yet, whatever happens, this is his body and I can't force him to do the right thing. It is hard watching.

We got some bad news just today.

He had a large blister on his foot pop, we've been treating it as his doctor suggested, but it was turning purple/black on his big toe. I insisted he not wait the "come back in two weeks to see me" the doctor had said and go in again.

He did... the first words out of the doctor's mouth were "You need to see a vascular surgeon." 

So, tomorrow, he goes for lab work, on Monday he sees the surgeon. But from what from what the podiatrist said today, it seems highly likely he'll lose at the very least his big toe.

I take no offense, because I agree.

When I see him drinking diet soda's... all I can think of is "What about the sodium? Potassium? Fluids?" I'll mention it to him, but he'll just shrug it off like it's no big deal.

At this rate, I can mention things and pray he hears, but he has to care about himself to take care of himself.

[RichardMEL]

CM I send you lots of *hugs* because I can't imagine how difficult it is for you, and your kids, and everyone else who cares and loves him to watch your husband treat himself this way. Like you say you can only do so much and pushing and begging will probably just have the opposite effect. I'm no saint when it comes to kidney failure - I allowed myself a small vodka and coke with lunch(plus extra binder!! ) so I'm not trying to be on a soapbox, but I can't imagine how hard it is to watch someone make choices that seem so wrong to us.

My best wishes to you and your family - and for the big toe!

[natnnnat]

There was a woman at G's dialysis unit who used to add salt to her meals.  Her hubby would bring them into the unit so she could have dinner on D, and she would add salt and salt and salt and salt.  She didn't like the renal doctor, saying she didn't like being shouted at.  "Then don't eat salt!" G would reply... in his imagination.
I yesterday hassled G about drinking diet coke.   Gently, I hope, a gentle hassling?  This morning he says he dreamed last night he saw a man show him his knee, but his knee was gone.  And he lifted up his shirt and showed him his abdomen, but it was all gone.  He said, the man had lost his knee and his abdomen to diet coke.  [blush] I guess I should back off a bit with the comments.   

[Quickfeet]

Maybe when he loses his toe, he will realize this sh** is real. 

[CharmedMist]

   Yeah, it often feels like banging your head against the wall.

I think he's taken a bit of a death is near mentality.

A couple weeks ago, he sat down our 13 year old son (our oldest) and explained how he'll have to "step up" to be the man of the family when he's gone. All this happened while I was at work.

When I heard about it, I was upset. You can't put that pressure on a 13 year old who's already dealing with watching dad's heal be bad!

[Zach]

A couple weeks ago, he sat down our 13 year old son (our oldest) and explained how he'll have to "step up" to be the man of the family when he's gone.

Maybe he's the one who needs to "step up."
Prayers to you and your family.

[kevno]

I have always believed it is down the the renal patients attitude. Some patients take to dialysis a lot better than other patients. Some just give up without trying, you do need the will power to keep going. I have a little understanding what it must be like for a new patient. This is a little saying that a renal patient said to me when I was starting hemo at the age of ten in l977 "RENAL PATIENTS NEVER GIVE UP!" . It as alway stuck in my mind and helped me through the bad times which all renal patients have.

Remember just keep going you will always get through whatever the doctor/surgeons  do to us(the renal patient) 

[CharmedMist]

Well, funny thing.. just today, we found a funny website where he saw a tee shirt that said "Dialysis, damned if you do, dead if you don't." He thought it was so funny, he just had to have it. SO.. .we bought it. 

[okarol]

Well, funny thing.. just today, we found a funny website where he saw a tee shirt that said "Dialysis, damned if you do, dead if you don't." He thought it was so funny, he just had to have it. SO.. .we bought it.

We have that shirt in our cafepress store. Did he get it from us?
http://www.cafepress.com/ihatedialysis

[Jie]

I guess that taking care of diets and having a good attitude would help somewhat, but dialysis patients have a lot of risks and would die with a much higher rate than the general population, no matter what we will do. The main factor for high mortality rates of dialysis patients is age. Diseases rather than kidney disease would play a very important role for the high mortality rate too. If we exclude most old folks and very sick ones, the annual mortality rate is about 6%-7% for the patients waiting for transplant in the U.S., much lower than the mean value for the all dialysis patients. Taking care of diet is good, but enjoying the life is also important too. 

[CharmedMist]

We have that shirt in our cafepress store. Did he get it from us?
http://www.cafepress.com/ihatedialysis

I know we got it from cafepress, not sure if it was linked to you. But for future ones, I'll go looking.