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Home > Archive > Kidney Failure > October 2006 > Hemodialysis at the center -- What to bring?
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Hemodialysis at the center -- What to bring?
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| Okay, my creatinine was up to 5.3 (U.S. measurement), and I have been
told that I start hemodialysis at the center this coming Tuesday, Sept.
19. (Tuesday-Thursday-Saturday 6 AM to 10 AM or so, though I'm hoping
to change to more civilized hours asap... oddly enough the center is in
a shopping mall.) I am arranging for a taxi to bring me there and back,
at least for the first few weeks.
My question is, what would you experienced folks recommend that I bring
with me? I've already had recommendations to bring my insurance cards,
a pillow and blanket, a snack (and water bottle?), books to read, CDs
and player (and spare batteries!)... what else should I consider
bringing, to minimize discomfort and boredom? Thanks VERY much in advance!
Adam Rubin
--
Email: rubin AT bestweb DOT net
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| Adam wrote:
> Okay, my creatinine was up to 5.3 (U.S. measurement), and I have been
> told that I start hemodialysis at the center this coming Tuesday, Sept.
> 19. (Tuesday-Thursday-Saturday 6 AM to 10 AM or so, though I'm hoping
> to change to more civilized hours asap... oddly enough the center is in
> a shopping mall.) I am arranging for a taxi to bring me there and back,
> at least for the first few weeks.
>
> My question is, what would you experienced folks recommend that I bring
> with me? I've already had recommendations to bring my insurance cards,
> a pillow and blanket, a snack (and water bottle?), books to read, CDs
> and player (and spare batteries!)... what else should I consider
> bringing, to minimize discomfort and boredom? Thanks VERY much in advance!
>
> Adam Rubin
> --
> Email: rubin AT bestweb DOT net
A list of Transplant Centers to call :-)
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| I second Alan........ getting listed for a transplant is very important and
the sooner the better.
Dialysis is ok but it's hard on your body. Nothing compares to getting your
life back after a transplant. I got my fingers crossed that the next one is
as good as the first one was and that I don't wait long.
Celeste
"Alan" <usuk@norr.com> wrote in message
news:BbIOg.389$q.104@news-wrt-01.rdc-nyc.rr.com...
> Adam wrote:
>
>
> A list of Transplant Centers to call :-)
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| > I second Alan........ getting listed for a transplant is very important and
> the sooner the better.
> Dialysis is ok but it's hard on your body. Nothing compares to getting your
> life back after a transplant. I got my fingers crossed that the next one is
> as good as the first one was and that I don't wait long.
>
> Celeste
Thanks for the suggestions, both of you, but I already took care of that
one. In May when I went down to New York-Presbyterian Hospital (in New
York City) for a second opinion, the nephrologist there suggested I add
myself to the transplant list that very day, since I was already at the
hospital, so I did and had blood drawn for tissue typing. My (local)
nephrologist said I could go either there or Albany [NY] Medical Center;
both are equally good but he says Albany is more convenient. (He also
added that under no circumstances should I go to Westchester [NY]
Medical Center for a transplant!) Does anyone know anything about any
of those places?
How exhausted does the "average patient" feel after those first few
dialysis sessions, both immediately and a few hours later? (I am 44 and
in fairly good health except for the CRF, if that matters.) My first
one is this Tuesday, 6 AM to 10 AM, and I am taking a college course
that meets Tuesdays evenings, 6:30 PM to 9 PM. I'm really hoping that
by evening (after a nap?) I will feel good enough to drive to class.
Thanks in advance for your advice on this!
Adam Rubin
--
Email: rubin AT bestweb DOT net
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| The first couple of weeks times you will probably feel pretty wiped out.
That's mainly because they are working on taking the fluid and the toxins
out of your blood. I found that this time around on dialysis that I felt so
much better in about a month compared to how I felt before I started.
The main thing is if you are feeling discomfort to speak to your nurses and
doctor about it. They will work on adjusting your treatment to get it just
right. You should not go home feeling nausious, dizzy or having extreme
cramping. If any of it occurs speak your mind and let them know they can
adjust your prescription for your treatment. The biggest thing to feeling
right and keeping healthy is to follow the fluid and food restrictions.
It's not always easy but if you don't listen you will pay for it when you go
to treatment. Too much fluid and you cramp and there is always the
possibility of your access clotting off from having all that fluit removed.
That is why the fluid restrictions are so important.
The dietitician will work with you on getting you information on the proper
diet. The dietician will say don't eat this this and this. I'll tell you
what my doctors have told me. If you want some chocolate have 2 oreo
cookies but not the whole stinkin box!!!! You will get food cravings we all
do it's part of life. There are some foods they just don't want you to eat
because they are very high in potassium but if you really have to have
something a bite or two of one of those things between treatments won't kill
you. Just use some common sense and don't keep eating because high
potassium can kill you. Just like yesterday we had an office party and
fresh fruit is a no no but they had some wonderful smelling fruit salad. I
put some on my plate but it was only one tablespoon. It was enough to
satisfy my craving but it's not to much that it will drive up my potassium.
Good Luck
Celeste
"Adam" <look@bottom.for.address> wrote in message
news:12gnvrhj0olld3@corp.supernews.com...
>
> Thanks for the suggestions, both of you, but I already took care of that
> one. In May when I went down to New York-Presbyterian Hospital (in New
> York City) for a second opinion, the nephrologist there suggested I add
> myself to the transplant list that very day, since I was already at the
> hospital, so I did and had blood drawn for tissue typing. My (local)
> nephrologist said I could go either there or Albany [NY] Medical Center;
> both are equally good but he says Albany is more convenient. (He also
> added that under no circumstances should I go to Westchester [NY] Medical
> Center for a transplant!) Does anyone know anything about any of those
> places?
>
> How exhausted does the "average patient" feel after those first few
> dialysis sessions, both immediately and a few hours later? (I am 44 and
> in fairly good health except for the CRF, if that matters.) My first one
> is this Tuesday, 6 AM to 10 AM, and I am taking a college course that
> meets Tuesdays evenings, 6:30 PM to 9 PM. I'm really hoping that by
> evening (after a nap?) I will feel good enough to drive to class. Thanks
> in advance for your advice on this!
>
> Adam Rubin
> --
> Email: rubin AT bestweb DOT net
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| Adam wrote:
>
>
> Thanks for the suggestions, both of you, but I already took care of that
> one. In May when I went down to New York-Presbyterian Hospital (in New
> York City) for a second opinion, the nephrologist there suggested I add
> myself to the transplant list that very day, since I was already at the
> hospital, so I did and had blood drawn for tissue typing. My (local)
> nephrologist said I could go either there or Albany [NY] Medical Center;
> both are equally good but he says Albany is more convenient. (He also
> added that under no circumstances should I go to Westchester [NY]
> Medical Center for a transplant!) Does anyone know anything about any
> of those places?
>
> How exhausted does the "average patient" feel after those first few
> dialysis sessions, both immediately and a few hours later? (I am 44 and
> in fairly good health except for the CRF, if that matters.) My first
> one is this Tuesday, 6 AM to 10 AM, and I am taking a college course
> that meets Tuesdays evenings, 6:30 PM to 9 PM. I'm really hoping that
> by evening (after a nap?) I will feel good enough to drive to class.
> Thanks in advance for your advice on this!
>
> Adam Rubin
Adam,
You should apply to any place you can. New York generally has a very
long waiting list so perhaps you should check other places as well. The
university of Penn in Philadelphia is close as is some in NJ. There are
plenty of other transplant centers you can list at, it all depends on
your insurance and mobility.
I live in Manhattan and didnt even bother to list in the tri-state area.
I was transplanted at the university of Wisconsin in a very short time.
Alan
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| Bring what you feel you might need. Your first dialysis sessions may be
a little rough, as your body gets used to the change, & the staff
confirm your "dry weight"
Your dry weight is your body weight once excess fluid has been removed,
which, if you are just starting dialysis you are likely to have.
But once your stable, you can certainly just read, listen to music etc.
I find my concentration drops towards the end. Some patients just sleep!
Others react badly to eating some bring something light.
Go easy on bringing drinks a SMALL bottle or can (150ml) if you need to
take meds or the unit provide nothing at all.
I'm find it VERY interesting that your centre is in a mall (or shopping
centre as we call it here) I'm hoping that will catch on here with the
big supermarkets. Dialysis Crisis where I am at the moment! I shall
mention the Mall to my doc when I see him on Tuesday!!
I would recommend the pillow & blanket at least, aircon can be quite
chilly for that number of hourse when your sitting still, although the
machines DO pump out heat!
Personally
Currently I usually bring a book, my iPod, (with good headphones) some
biscuits to go with the tea, usually have a snack, either something I
bring or buy. I don't eat the hospital sandwiches, as they are appaling!
I do my own needles, which saves a bit of time, but don't yet line my
own machine. Have been doing that since the age of 9 on & off so it's
not new to me!!!
At the moment I rarely manage to sleep as the chairs are so darn
uncomfey!
DO let us know how you get on.
JW
Adam <look@bottom.for.address> wrote:
> Okay, my creatinine was up to 5.3 (U.S. measurement), and I have been
> told that I start hemodialysis at the center this coming Tuesday, Sept.
> 19. (Tuesday-Thursday-Saturday 6 AM to 10 AM or so, though I'm hoping
> to change to more civilized hours asap... oddly enough the center is in
> a shopping mall.) I am arranging for a taxi to bring me there and back,
> at least for the first few weeks.
>
> My question is, what would you experienced folks recommend that I bring
> with me? I've already had recommendations to bring my insurance cards,
> a pillow and blanket, a snack (and water bottle?), books to read, CDs
> and player (and spare batteries!)... what else should I consider
> bringing, to minimize discomfort and boredom? Thanks VERY much in advance!
>
> Adam Rubin
> --
> Email: rubin AT bestweb DOT net
--
My Blog at: http://www.livejournal.com/users/sw33tf00l/
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| Thanks, Alan, Celeste, JW, and everyone else here. I've had three weeks
of dialysis (hemo at the center) so far.
JW wrote:
> Bring what you feel you might need. Your first dialysis sessions may be
> a little rough, as your body gets used to the change, & the staff
> confirm your "dry weight"
> Your dry weight is your body weight once excess fluid has been removed,
> which, if you are just starting dialysis you are likely to have.
My dry weight seems to be different at each session, because my weight
at the start of each session is slightly different. Once, my weight at
the start of a session was less than my weight at the end of the
previous session!
Actually, I feel about the same at the end of a session as I did at the
beginning, and have no problem driving myself home afterwards. The
biggest annoyances are (a) having to get up at 4:30 AM so I can be at
the center by 6 AM; (b) getting needled (even with the
lidocaine/prilocaine cream); (c) waiting around for all the various
steps of getting disconnected.
> I'm find it VERY interesting that your centre is in a mall (or shopping
> centre as we call it here) I'm hoping that will catch on here with the
> big supermarkets. Dialysis Crisis where I am at the moment! I shall
> mention the Mall to my doc when I see him on Tuesday!!
Yes, having to drive to a mall is a lot less depressing than having to
drive to the hospital three times a week. It is a separate "store"
within the mall, not part of a supermarket or pharmacy or anything. I
gather the center used to be at (and was run by) one of the local
hospitals, but the hospital sold the unit off.
> Currently I usually bring a book, my iPod, (with good headphones) some
> biscuits to go with the tea, usually have a snack, either something I
> bring or buy. I don't eat the hospital sandwiches, as they are appaling!
For anyone reading (or Googling) this post, here's what I have in my
backpack at the moment: blanket, baseball cap (to keep light out of my
eyes if I want to sleep), frozen bottle of drinking water (melts slowly
during dialysis), snacks, books and bookmarks, CD player (which is also
an AM/FM radio but reception inside the steel-framed building is almost
nonexistent), headphones, extra batteries and CDs (btw I discovered it
is too noisy to listen to classical music there), handouts the center
gave me, crossword magazine, pen and pencil, hard candies, cell phone
(switched off of course). I am sure that I will refine this list as time
goes on.
> DO let us know how you get on.
It is nice to be able to say "hemodialysis at the center" and know that
the members of this group know exactly what I mean!
Adam Rubin
--
Email: rubin AT bestweb DOT net
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| Sounds like your doing fine, & getting the hang of things,.
I'd love it if I could dialyse at my local shopping centre (mall) or
even at one of the big superstores like Tescos (are Tesco's in the US
yet???)
Units away from the hospital are known as 'satellite' units, fairly
sensible I guess.
check out:
http://www.kidneypatientguide.org.uk
It's one of the best sites you can find!
Keep well
J
Adam <look@bottom.for.address> wrote:
> T
> Email: rubin AT bestweb DOT net
--
My Blog at: http://www.livejournal.com/users/sw33tf00l/
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| JW wrote:
> Sounds like your doing fine, & getting the hang of things,.
> I'd love it if I could dialyse at my local shopping centre (mall) or
> even at one of the big superstores like Tescos (are Tesco's in the US
> yet???)
From their web page, it looks like Tesco is in the UK only, except for
a branch in Calais.
> Units away from the hospital are known as 'satellite' units, fairly
> sensible I guess.
I thought "satellite units" were run by a nearby hospital. According to
Google:
Fresenius Medical Care owns the Dutchess [County]
Dialysis Center, one of the many it owns throughout the
world, and New York Dialysis Center operates it.
so I guess it is actually owned by a conglomerate. I'm told it was
owned and run by a local hospital until a few years ago, when it was
sold off.
Just out of curiosity, does anyone know of any other hemodialysis
centers that are not physically in a hospital?
Adam, patiently (?) waiting to be moved off the 6 AM shift
--
Email: rubin AT bestweb DOT net
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| Go to Dialysis Compare on Medicares website (www.medicare.gov). You can
find all the units in the states there.
Since Congress passed a law a number of years ago that made it illegal for
Doctors to own a clinic that they also refer patients to, most hospital
based units have moved out of the hospitals, with just small inpatient
units operating in the hospitals. During this exodus, most of the units
have been bought by the major corporations, to the detriment of the
patients in my view.
Dave
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