Kidney Failure - Question on father's ESRD

Author

Question on father's ESRD

winterlongone

2006-09-28, 4:29 pm

I apologize in advance if this is the wrong place to ask this question.

My 76 year old father has ESRD, and recently (in the last 5 days or so)
dropped into the "must have dialysis" group (within the next 4 days or
so, by Monday I think, or he goes to sleep - in a coma?). They had
been telling him he could start for the last 9 months and had already
performed an AV shunt in preparation - but he chose not to as long as
he could.

He hates talking about his health so I only have partial information;
sorry.

His other medical conditions include: high blood pressure (why they
think he developed ESRD), atrial fibrillation (he's had a
cardioversion), is bradycardic (40-50 beats/min), extremely underweight
(110-120 pounds), somewhat edemic, and no longer stays awake for much
time at all. He's anemic as well and gets epogen shots (my sister, a
nurse, administers them and checks him out physically).

My mother is hysterical; not a surprise. My sister and I think he
wouldn't have considered dialysis if it wasn't for her but that's hard
to tell.

My question: will dialysis help his quality of life? It's not very
good right now (obviously), but I am hoping if he is doing this, that
it will give him some extra time with us - time that is worth it; I
would hate to see him tortured.

I don't know if any of you can answer that at all. But I don't know
what to ask other than that. My sister claims she thinks it will not
help, but she is pessimistic given that she's been a floor nurse for a
long time.

TIA.

Larry Krzewinski

2006-09-28, 4:29 pm

On 28 Sep 2006 12:39:04 -0700, "winterlongone" <eileenpa@gmail.com>
wrote:

>I apologize in advance if this is the wrong place to ask this question.
>
>My 76 year old father has ESRD, and recently (in the last 5 days or so)
>dropped into the "must have dialysis" group (within the next 4 days or
>so, by Monday I think, or he goes to sleep - in a coma?). They had
>been telling him he could start for the last 9 months and had already
>performed an AV shunt in preparation - but he chose not to as long as
>he could.
>
>He hates talking about his health so I only have partial information;
>sorry.
>
>His other medical conditions include: high blood pressure (why they
>think he developed ESRD), atrial fibrillation (he's had a
>cardioversion), is bradycardic (40-50 beats/min), extremely underweight
>(110-120 pounds), somewhat edemic, and no longer stays awake for much
>time at all. He's anemic as well and gets epogen shots (my sister, a
>nurse, administers them and checks him out physically).
>
>My mother is hysterical; not a surprise. My sister and I think he
>wouldn't have considered dialysis if it wasn't for her but that's hard
>to tell.
>
>My question: will dialysis help his quality of life? It's not very
>good right now (obviously), but I am hoping if he is doing this, that
>it will give him some extra time with us - time that is worth it; I
>would hate to see him tortured.
>
>I don't know if any of you can answer that at all. But I don't know
>what to ask other than that. My sister claims she thinks it will not
>help, but she is pessimistic given that she's been a floor nurse for a
>long time.
>
>TIA.

He will probably feel better once he starts dialysis. Dialysis is
more of an inconvenience than anything else. But there is only one
sure way to tell if it helps: have him start getting dialysis and see.

Dave

2006-09-29, 4:31 pm

You didn't say where you are, so I'll go with in the US (the way you
express your thoughts sounds more American than European or Australian).

First off, most if not all of the problems he is experiencing are
probably related to the ESRD. The fact that he may be at the point
where he may lapse into a coma means that he may have waited too long to
start dialysis.

At the very least, he will probably have a very long recovery period
ahead. If his desire is not with doing the dialysis, he very well may
not recover.

In the US, Dialysis patients have the right to end treatment at any time
of their own volition. This is considered a last resort, but does open
up the opportunity to at least give it a try, and if then it becomes
obvious that it isn't going to help, to stop it.

I fully believe what Larry said is the correct approach here. Give it a
shot, but give it several weeks to see if it is helping. As I stated,
your father may have waited too long to start treatment. The idea of
prolonging the start point is considered by some to be a "strong"
personality trait, but the data has shown many times over that it is the
wrong way to go, in general. But, too late for that now. Give dialysis
a shot.

And just so you know, many elderly patients go on dialysis and do quite
well. They tend to be much more compliant in taking care of themselves
and don't hesitate to speak up when other issues come up while on
dialysis. Also, the quality of life in this day for a dialysis patient
can be very good, if not with a little effort.

If it comes to the point that he is not doing well, I will give my
prayers for you and your family.

While I am not an elderly patient, having begun treatment in my 20's, I
have seen tremendous advancements in the whole dialysis arena. The
treatments are better, the technolgy is better, the accesses are better
and the overall knowledge is better. Dialysis is still not for
everybody, but it is imminently survivable. When I started 19-1/2 years
ago, the average survival time for a dialysis patient was about 2 years,
and today it is more than 12 years. As advancements develop, the length
of time a typical patient can live will contimue to increase. I fully
plan to live another 30 years.

I want to give an apology to anyone who is offended with my unemotional
candor as to how I present things. I tend to approach these types of
issues from a more achedemic point of view, separating myself
emotionally from the whole discussion. It is one of the coping
mechanisms I developed to adopt to a live with a chronic disease.
Sorry.

If you have other questions, please write. There are people on this
board who have a lot of knowledge and experiences to pass on to help
others learn what they need to know.

Good Luck

Dave

Oregon_kidney

2006-09-30, 8:28 am

winterlongone wrote:
> I apologize in advance if this is the wrong place to ask this question.
>
> My 76 year old father has ESRD, and recently (in the last 5 days or so)
> dropped into the "must have dialysis" group (within the next 4 days or
> so, by Monday I think, or he goes to sleep - in a coma?). They had
> been telling him he could start for the last 9 months and had already
> performed an AV shunt in preparation - but he chose not to as long as
> he could.
>
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It sounds as if your mother and the rest of the family need some
emotional support to help your father. Do you know which clinic he will
be dialyzing at? There should be a kidney social worker there and that
person can help a lot with coping both for the family and helping your
father know what to expect and allay his fears. Additionally, the
nurse(s) at the clinic could help prepare your father and the rest of
your family about what to expect physically during a treatment.
Knowledge is power! You might also check out
http://www.kidneyschool.org for information.

Please let us know how your father does.

winterlongone

2006-10-01, 4:29 pm

I thank all of you profusely for answering my questions. I'll try to
answer the issues you all brought up, which were very specific and
useful.

Unfortunately, Dave - some of my father's co-morbid conditions existed
well before the CHF/ESRD. My father has had a-fib for at least 10
years, most probably longer. Every one of his siblings including
himself has had a cardio event in the last 10 years. His emergency
cardioversion was about 5 years ago, before he was being treated for
any kidney issues. His EKG looks like a child scribbled it; he doesn't
ever have more than 3-4 normal beats in a row, and this was well before
any issues with his kidneys (according to his bloodwork; he was having
regular physicals). The bradycardia he has also had all his life. His
high blood pressure he has had since his 40's; they assume that is why
his kidneys failed. Oh yes, and he smokes, which isn't helping
anything (particularly the anemia).

I too have high blood pressure, but I am vigilant about my medications
(I am in my 40's) - I don't want to deal with this if it's possible to
avoid.

The other issues - yes, byproducts of the kidney failure. You're also
right - I'm from the US :-). His nephrologist has been trying to get
him on dialysis (he was a borderline 4/5 until last weekend, when he
got his official '5' diagnosis) for 9 months; he has refused. In fact,
in the last week hospitalization was recommended and he refused that as
well. It is interesting you comment that refusal for dialysis is a
'strong personality trait'. He has been that way all his life about
his health.

My sister and I are positive he has deliberately refused multiple times
to start dialysis despite doctor recommendations - the A/V shunt, the
request 9 months ago to identify a dialysis center which he hasn't
done. We think he is choosing by non-compliance to covertly refuse
dialysis. Which I have no problem with; it is his choice, and I don't
want him tortured if at this point dialysis will not help much. He had
an a-fib episode earlier this week that required IV medical
intervention; that is something he's been doing for many years, well
before the kidney issues started (at least, as far as i know).

I know they need emotional support, but they won't agree to that; we've
tried. My sister's concern is that he'll go into a-fib on the machine,
they'll stop the dialysis...well, you get the picture.

Thanks all for your opinions. I'll let you know how it goes, and I
greatly appreciate the support.

Eileen

Dave wrote:
> You didn't say where you are, so I'll go with in the US (the way you
> express your thoughts sounds more American than European or Australian).
>
> First off, most if not all of the problems he is experiencing are
> probably related to the ESRD. The fact that he may be at the point
> where he may lapse into a coma means that he may have waited too long to
> start dialysis.
>
> At the very least, he will probably have a very long recovery period
> ahead. If his desire is not with doing the dialysis, he very well may
> not recover.
>
>
> In the US, Dialysis patients have the right to end treatment at any time
> of their own volition. This is considered a last resort, but does open
> up the opportunity to at least give it a try, and if then it becomes
> obvious that it isn't going to help, to stop it.
>
> I fully believe what Larry said is the correct approach here. Give it a
> shot, but give it several weeks to see if it is helping. As I stated,
> your father may have waited too long to start treatment. The idea of
> prolonging the start point is considered by some to be a "strong"
> personality trait, but the data has shown many times over that it is the
> wrong way to go, in general. But, too late for that now. Give dialysis
> a shot.
>
> And just so you know, many elderly patients go on dialysis and do quite
> well. They tend to be much more compliant in taking care of themselves
> and don't hesitate to speak up when other issues come up while on
> dialysis. Also, the quality of life in this day for a dialysis patient
> can be very good, if not with a little effort.
>
> If it comes to the point that he is not doing well, I will give my
> prayers for you and your family.
>
> While I am not an elderly patient, having begun treatment in my 20's, I
> have seen tremendous advancements in the whole dialysis arena. The
> treatments are better, the technolgy is better, the accesses are better
> and the overall knowledge is better. Dialysis is still not for
> everybody, but it is imminently survivable. When I started 19-1/2 years
> ago, the average survival time for a dialysis patient was about 2 years,
> and today it is more than 12 years. As advancements develop, the length
> of time a typical patient can live will contimue to increase. I fully
> plan to live another 30 years.
>
> I want to give an apology to anyone who is offended with my unemotional
> candor as to how I present things. I tend to approach these types of
> issues from a more achedemic point of view, separating myself
> emotionally from the whole discussion. It is one of the coping
> mechanisms I developed to adopt to a live with a chronic disease.
> Sorry.
>
> If you have other questions, please write. There are people on this
> board who have a lot of knowledge and experiences to pass on to help
> others learn what they need to know.
>
> Good Luck
>
> Dave

charles381@webtv.net

2006-10-05, 2:33 am

Hello, I am a dialysis patient.
It will bring a very good quality of life back to your father. The
dialysis will clear out the toxins in his blood.Right now,he is really
sleepy and doesn't move about much. He probably is sick to his stomach
and has can't eat much.

Once they clean his blood, he will sleep at night, eat well, and keep it
down.
If this is not attended to, he will probably have a heart attack or
really drift off in a coma in sleep. His blood is getting plugged up and
it will clog the heart.

It will give you a new lease on life.
Probably the years you want.

Good luck

Charles

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