Introduing myself
cleo
am stage four CKD. I have decided to not go on dialysis or even consider a
transplant. Why because I am 62 going on 63 this year and I have lived my
life. Dialysis is too expensive and I have health insurance, but they say
you might have to go atleast three times a week and the co-pay I would have
to pay makes it too expensive. Well that is all I can think of right now. If
you have a question or want to open a dialog you will be welcome.
Steven L.
This newsgroup is practically dead--very few posts.
I suggest you find other Internet forums.
I am on www.ihatedialysis.com. It's mostly for dialysis patients like
me, but they do have folks on it who have CKD but are not on dialysis too.
--
Steven L.
Email: sdli...@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.
Jason
I suggest that you buy this book. If it not for sale at a local
bookstore--try to find it for sale on the internet.
"Coping With Kidney Disease--A 12 step treatment program to help you avoid
Dialysis" by Mackenzie Walser, M.D.
You may want to visit the dialysis center in your area and talk to the
manager. It's possible that you will NOT have to pay the co-pay that you
mentioned in your post. According to Dr. Walser's book, the gov't pays the
cost for dialysis.
One reason for you to consider dialysis is that you may be able to get a
transplant during those months and years that you are on dialysis. If I
was in your shoes, I would stay on dialysis for about one year while
waiting for the transplant. If the transplant does not take place during
that first year--you could decide at the end of that year whether or not
to continue dialysis.
It would help if you have your medical records (esp. blood test records)
in front of you while reading Dr. Walser's book.
I will pray for you.
jason
Mickey Zalusky
failing. At stage 4 you're probably feeling really crappy. Talk to your
doctor. It's not uncommon for CKD patients to be depressed. Not sure
how much research you've already done but I'm pretty sure that if you
are on dialysis, regardless of your age, you only are responsible for
the first 18 months and then, afterwards, regardless of your age, you
apply for Medicare which then pays for ongoing dialysis. You should ask
your nephrologist for informational resources and, if you have energy,
visit a dialysis center to see what's involved. I think the centers
have social workers who you might be able to talk to about your personal
cost for treatment.
I was diagnosed with kidney failure in 2006. Well before I had to go in
dialysis, my doctor sent me to a dialysis center that gave informational
classes explaining all the various dialysis options. It helped to
have time to digest all the information well in advance of having to
start dialysis. I too felt hopeless because I was told that although I
was a good candidate for transplant, I had very high antibody levels, I
would only match 4% of anyone on the planet and my wait would be double
anyone else in my area (likely 14 years or more!). I'm no spring
chicken but i decided to educate myself as much as possible to
understand ALL my options. Had I not done all the research, it would
have been easy to give up. Without going into a long detailed story, in
April 2007, I received a living donor kidney from my wonderful, loving
husband and we're both doing very well.
You owe it to yourself to get as much information as possible before
making such a final decision.
Wish you all the best.
Mickey
cleo
information that I have never been aware of. The nephrologist that I had
basicly told me nothing. For over two years I visited him and gave blood
test, but it seemed to me he did not much else. I quit going to him about a
year ago. I have my primary who i like very much. So this information that
you posted is very welcome. Thanks
Cleo
"Mickey Zalusky" <mic...@zalusky.com> wrote in message
news:gmbjl...@news7.newsguy.com...
cleo
"Jason" <Ja...@nospam.com> wrote in message
news:Jason-03020...@67-150-10-116.lsan.mdsg-pacwest.com...
> In article <UIJgl.23629$8O.1...@newsfe06.iad>, "cleo" <scri...@cox.net>
wrote:
>
> > Hi, just stumbled on this newsgroup and thought I would check you all
out. I
> > am stage four CKD. I have decided to not go on dialysis or even consider
a
> > transplant. Why because I am 62 going on 63 this year and I have lived
my
> > life. Dialysis is too expensive and I have health insurance, but they
say
> > you might have to go atleast three times a week and the co-pay I would
have
> > to pay makes it too expensive. Well that is all I can think of right
now. If
> > you have a question or want to open a dialog you will be welcome.
>
>
>
> I suggest that you buy this book. If it not for sale at a local
> bookstore--try to find it for sale on the internet.
>
> "Coping With Kidney Disease--A 12 step treatment program to help you avoid
> Dialysis" by Mackenzie Walser, M.D.
I will look into it and see about getting this book.
>
> You may want to visit the dialysis center in your area and talk to the
> manager. It's possible that you will NOT have to pay the co-pay that you
> mentioned in your post. According to Dr. Walser's book, the gov't pays the
> cost for dialysis.
No one not even the nephrologist that I saw ever told me this.
>
> One reason for you to consider dialysis is that you may be able to get a
> transplant during those months and years that you are on dialysis. If I
> was in your shoes, I would stay on dialysis for about one year while
> waiting for the transplant. If the transplant does not take place during
> that first year--you could decide at the end of that year whether or not
> to continue dialysis.
>
> It would help if you have your medical records (esp. blood test records)
> in front of you while reading Dr. Walser's book.
>
> I will pray for you.
>
> jason
Thanks Jason,
Cleo
>
>
cruizi...@gmail.com
Hi Cleo,
You don't need to go to the hospital 3x a week. You can do peritoneal
dialysis which you do in the comfort of your lazy boy, shower,
kitchen, etc. You have do to do it multiple times per day but it's a
very simple procedure and I think at this point I can connect and
disconnect in the dark and without even thinking about what I'm doing.
There is no exchange of blood, it is simply fluid held in your abdomen
for about 4 hours and then drained. Give it some thought ... it's
great to feel better when it starts to remove the accumulated poisons.
cleo
<cruizi...@gmail.com> wrote in message
news:72a71dc6-0b4a-4809...@e15g2000vbe.googlegroups.com...
Hi Cleo,
--------------------
Thanks for your input, but I do know about the different kind of dialysises.
It is nice to hear from someone who uses this kind of dialysis that you do,
puts a different outlook on the proceedure than just information. Is there
ever a time that it all seems more than you want to deal with?
Cleo
DR
"cleo" <scri...@cox.net> wrote in message
news:LeVrl.114769$6r1....@newsfe19.iad...
Another option that I use is a cycler to do peritoneal dialysis. (PD) I
connect a tube from my stomach (catheter) to the cycler at night. During the
night as I sleep the cycler "fills" my peritoneal cavity with 2 liters of
dextrose fluid. After a one hour "dwell" the fluid drains and another 2
liters is loaded. This usually repeats 5 times. Time on the cycler is
approximately 9 hours. There is very little sensation to the fluid filling
and draining and I sleep through the process.
Folks with kidney disease are eligible for Medicare.
cleo
"DR" <d...@invalid.com> wrote in message
news:PW_rl.15047$as4....@nlpi069.nbdc.sbc.com...
I thought you still have to be 65 before you can aquire medicare. This
year I will only be 63.
Cleo
DR
I am under 65 and am using Medicare. Look into it. Not sure what the exact
rules are. Possibly you have to be on dialysis to qualify but I'm not sure.
After acquiring Medicare you need to find Medigap coverage. There is a time
period after qualifying for Medicare that insurance companies can not turn
you down for the Medigap. In my case the gap coverage is $170 per month but
that is much less than the 20% that Medicare will not pay. Sometimes you can
get help with Medicare and gap coverage payments.
cleo
Again thanks I'll look into it.
>
>
>
Lookout
That will cover ALL costs.
Lookout
When you are placed on dialysis you are automatically put on Medicaid.
Lookout
I just started dialysis last month. Visit any local dialysis center
and ask to talk to the social worker. She will tell you everything you
need to know.
BTW..there is a new home dialysis kit where you dialyze yourself for 2
1/2 hours per day. It's easy and you don't lose as much times as
sitting at the dialysis clinic for 4 hours 3 times a week. Ask the
dialysis social worker.
Cleo
"Lookout" <mrLo...@yahoo.com> wrote in message
news:0shq25lt0p0gimgo0...@4ax.com...
I have an appointment with my Nephrology doctor this Thursday. I am going
to be dicussing all this with him.
Cleo