I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on October 13, 2010, 01:26:24 AM

Title: I am interested to know...
Post by: kristina on October 13, 2010, 01:26:24 AM

I am interested to know

if anyone takes any preparation,

or does not take anything at all,

directly before they go to Dialysis?

Thank you, Kristina
Title: Re: I am interested to know...
Post by: RichardMEL on October 13, 2010, 01:58:27 AM
nothing for me. I am as pure as the driven snow when i enter the unit  :rofl;

Title: Re: I am interested to know...
Post by: KICKSTART on October 13, 2010, 04:15:05 AM
Preparation for what ? In what respect? because most, though not all things would be dialyized out
Title: Re: I am interested to know...
Post by: texasstyle on October 13, 2010, 06:36:12 AM
The only thing different for my husband is that instead of taking his medications when he wakes up, on dialysis days he takes them when he gets back. The Dr. advised him particularly to take the BP med AFTER dialysis but that was him of course.
Title: Re: I am interested to know...
Post by: kristina on October 13, 2010, 06:50:02 AM

This is a very interesting reply, texasstyle,

I dare say it might be similar for people who have Dialysis through the night at home,

meaning, that it might be better for them to take their antihypertensive medicines
 
after they have woken up, either at breakfast or lunch.

If you have any idea why it is better to take the medicines after Dialysis

it would be interesting to know.

Thank you very much for the reply,

Kristina.
Title: Re: I am interested to know...
Post by: silverhead on October 13, 2010, 07:58:13 AM
I'll take a real wild swing at this......
possibly that some medications are filtered out during the process?
Title: Re: I am interested to know...
Post by: KICKSTART on October 13, 2010, 08:02:22 AM

This is a very interesting reply, texasstyle,

I dare say it might be similar for people who have Dialysis through the night at home,

meaning, that it might be better for them to take their antihypertensive medicines
 
after they have woken up, either at breakfast or lunch.

If you have any idea why it is better to take the medicines after Dialysis

it would be interesting to know.

Thank you very much for the reply,

Kristina.


I did give you an answer further up your post , did you miss it ?
Title: Re: I am interested to know...
Post by: calypso on October 13, 2010, 10:12:05 AM
I take my BP meds after dialysis because I want to get all the fluid out before crashing, and BP meds will make the blood pressure go down causing you to crash prematurely, with some fluid still in the body.
Title: Re: I am interested to know...
Post by: FindingNeverland on October 13, 2010, 10:37:47 AM
I take my bp med after dialysis because my bp will drop throughout the entire session if I take it before.
Title: Re: I am interested to know...
Post by: kristina on October 13, 2010, 02:17:11 PM

Thank you all very much for your kind advice.

Because I take my antihypertensives every day,

this information will be very useful in the future.

Thanks again, Kristina.
Title: Re: I am interested to know...
Post by: KICKSTART on October 13, 2010, 03:56:38 PM
Blood pressure can change once on dialysis and your meds can be changed as well. I know people that started on 2 lots of BP meds and now on dialysis are on none. I am still taking 2 lots before and after dialysis , so everyone is individual !
Title: Re: I am interested to know...
Post by: Riki on October 13, 2010, 04:23:04 PM

I am interested to know

if anyone takes any preparation,

or does not take anything at all,

directly before they go to Dialysis?

Thank you, Kristina

I would think it would depend on what you meant by preparation.  I put emla cream on my arm, but I'm probably to a point where I don't need it anymore
Title: Re: I am interested to know...
Post by: kristina on October 14, 2010, 01:43:50 PM
Thanks again for your answers.

I meant by “preparation” anything that a Dialysis-patient does prior to Dialysis,
to make their Dialysis-session run as smoothly as possible, thus avoiding the many terrible things
which sometimes happen in, and after, a Dialysis session.
 
I have heard and read such a lot about problems during & after a Dialysis session and
as the answers here have shown, there are some things which patients find useful
in preparation for their Dialysis-session e.g. use of cream, and timing their use of antihypertensive medicines.

Of course, these matters may differ from one patient to another,
but I was looking for general ideas so I can see if they might suit my situation and my own self.
 
I was interested to learn that with some patients their timing of antihypertensive medicines avoided crash-outs.
This makes me wonder if there are any other ideas to avoid a stroke, heart attack, collapsing, fainting, going to sleep, etc.,
and/or how to avoid different types of infection or getting a virus in some way.

Thanks again, Kristina.


Title: Re: I am interested to know...
Post by: Stoday on October 14, 2010, 04:51:17 PM
My dialysis preparation is psychological.

I'm looking forward to tonight's twilight session because that will ensure I have a good weekend. Even if they dig around with a needle as if they were looking for buried treasure I think "That's much better than if they hit a nerve". (They sometimes do hit a nerve so I upset the other patients by screaming.  :laugh: ) Then typically they say "it shouldn't hurt!"  :stressed;

On Wednesday's session, the tech just couldn't hit my vein with the venal needle, so I said she'd better try a new place on my fistula. So she was about to do so with the blunt needle until I stopped her.  :o But I don't get cross. She doesn't come to work with the intention of hurting anyone. I just smile sweetly and encourage her.

Title: Re: I am interested to know...
Post by: RightSide on October 14, 2010, 08:59:06 PM
Kristina,

Ask your neph about what meds you can take before dialysis.

Dialysis can filter a number of meds out of the bloodstream, so you won't get an adequate dose.  I take all my important meds after dialysis.

Title: Re: I am interested to know...
Post by: jbeany on October 14, 2010, 09:35:22 PM
I'd advise against eating a heavy, greasy meal just before.  If your bp crashes and you get queasy, the results are rather unpleasant....
Title: Re: I am interested to know...
Post by: Restorer on October 15, 2010, 01:27:42 AM
I'd been eating a substantial breakfast - something with enough protein, carbs, and fat to keep my stomach digesting for a few hours - before I'd go in for dialysis, because my blood pressure had a habit of being super-high while on dialysis, even if I'd taken all of my BP meds. If it was too high when I was done, they wouldn't let me leave.

Now it seems that's passed, but I still eat enough that I'm not starving by the time I leave. I also take my metoprolol, a beta-blocker (I don't always take it on non-dialysis days), otherwise dialysis makes my heart beat fast, makes me sweat, makes me feel generally uncomfortable - almost like a panic attack, but not nearly so severe. The metoprolol tends to block that reaction for the most part.
Title: Re: I am interested to know...
Post by: RichardMEL on October 15, 2010, 01:30:44 AM
re BP meds... since dialysis lowers your BP generally you don't want to have taken something that ALSO lowers your BP, so it's a general idea (unless your BP is VERY high) to not take BP meds on D days, or at least on the night before(or after D, as some have said). That's pretty standard from what I've seen.

re: preparation... I think really it's not about doing something an hour before, or 20 minutes, or when I get to the unit. I do pretty much everything as a matter of course, and that means watching my diet and specially the fluid intake.

Obviously also I make sure I have all my stuff that I need - eg: pillows, blanket, laptop + cables, binders, etc.

re eating before D - it's also not wise to eat a large/heavy meal right before D because that weight will count on the scale, and since it's food that will be being digested, you could wind off taking off more fluid than you need and risk cramp... so I tend to weigh THEN have a sandwich or something.
Title: Re: I am interested to know...
Post by: KICKSTART on October 15, 2010, 03:00:51 AM
Kristina ..does this mean you've now found a Neph and are working towards starting dialysis then ?
Title: Re: I am interested to know...
Post by: kristina on October 15, 2010, 12:09:33 PM

Thank you all very much for your kind replies, I shall study them each very carefully.

Re:  Nephrologist... Through my own efforts, diet & lifestyle I have maintained a stable kidney function around 10 – 12%
& I have no signs of impending kidney failure.

If I had been regularly consulting a NHS-Hospital Nephrologist/Doctor, I would have exposed myself
to SLE/MCDT-flare-ups from the artificial ultraviolet light plus other Hospital environmental problems (infections etc).

Of course, I have regular (private) blood tests, but not in a Hospital environment.

You have to see this in the context of my Lupus/MCTD,
which is the fundamental Disease from which I suffer...

I would naturally, immediately, go to a Nephrologist/Doctor, if my condition deteriorated
and I began to show the common signs of kidney failure.

Also, meanwhile, I educate myself with regard to all the different types of Dialysis,
so that I am best prepared as I can be in the event that my luck runs out...

Thank you all again for your kind replies,

Kristina.


Title: Re: I am interested to know...
Post by: KICKSTART on October 15, 2010, 04:18:00 PM
So things remain the same then . I just thought with you asking that you had sorted something out at last . By the way the 'light' is not ultraviolet its Fluorescent , i know my eyes are badly affected by it , but i have to endure it for dialysis . There are no 'ultraviolet lights !!!! We are all prone to infection the minute we walk out of the door , if you go into a shop or anywhere there are other people it exposes you to infection i guess ! and while its good to educate yourself , you will find that everyone is different in so many ways when they start D .
Title: Re: I am interested to know...
Post by: kristina on October 20, 2010, 08:08:28 AM

I have studied your kind inputs and replies and appreciate your thoughts very much.
We all have our experiences with different treatments etc.,
and learning from each other broadens the mind
to continue our search for an answer
if one or the other treatment does not work for us...

Ultraviolet (UV) light is a light with a wavelength shorter than that of visible light,
and is found in sunlight & artificial light (like fluorescent light where the excited mercury atoms
produce short-wave ultraviolet light that then causes a phosphor to fluoresce, producing visible light).

It has a terrible effect on people who suffer from Systemic Lupus (SLE/MCTD)
& its effects on SLE-sufferers is well documented in medical papers etc...
Title: Re: I am interested to know...
Post by: KICKSTART on October 20, 2010, 10:30:53 AM
So if ultraviolet light is in fluorescent lighting, how do you manage to do things like shop  and just go round shops and any other building in general ? The majority of places have this lighting so how does it affect you ?
Title: Re: I am interested to know...
Post by: Stacy Without An E on October 20, 2010, 11:34:11 AM
I now take 100mg of Gabaprentin a couple hours before Dialysis.  It makes me really dizzy, but helps lower the intensity of my nervous system so the needles don't burn as much.  I also have 500mg Vicodin, but I almost OD'd on that one night, and was sick for days, so I'm not really using it anymore.

One aspect of Dialysis nephrologist's don't seem to understad is that some of us have pain issues that won't cease.  Suffering through three hours of fire needles over and over and over again is not living, its surviving.

That is a divide that will wear away your soul if you allow it.
Title: Re: I am interested to know...
Post by: kristina on October 21, 2010, 12:19:27 AM
Thank you, Stacy, for your honesty. I feel very sorry for your predicament.
I am aware that patients with certain kidney diseases (i.e. chron. glomerulonephritis)
suffer terribly under Dialysis. I know it is all about survival, until hopefully a medical break-through happens,
which I hope happens during our life-time...

KS: Systemic Lupus/MCTD and ultraviolet light:

This is a major issue and an extremely important one for people suffering from SLE-photosensitivity.
Of course, I can only speak for myself with regards to its effect on me and how I deal with it.
Because of my particular type of Lupus/MCTD which is systemic, the UV-light goes through my skin
into the deeper strata where its effects are systemic, which means it can affect me all over the body
and not just on the surface of the skin. I therefore very quickly become unwell.
My first reaction is fairly quick and I notice my skin visibly swells, my blood pressure raises very high,
I lose concentration, become agitated & I have to immediately leave that environment.
This is a lot different than those who suffer with skin-problems due to photosensitivity.

I deal with this fluorescent light problem in several ways:
Firstly, and naturally, I try to avoid being in fluorescent light.
At home I have only filament-bulbs and all of these are on dimmer-switches,
so I can lower the brightness and control it.

When I go out I wear dark glasses which have UV-protection and I always wear wide-brimmed hats.
I wear long sleeves to cover my skin at all times. Of course, my hats and clothing are not particularly effective to repel UV-rays
but this is the best I can do. I also have Vaseline-cream which is known to have repellent qualities against UV-rays,
again, this is only the best I can do. In Hospital-environments and Supermarkets the fluorescent light is very strong
as you indicated and this is a great cause for concern. Hospital-visits are the most distressing, because they are invariably long and can be frequent.
Not only is the photosensitivity difficult on each occasion but with frequent visits with little time to recover in between it has an accumulative effect
which invariably causes a major flare-up of my Lupus/MCTD. This is a very great cause for concern for me at this time,
because my kidneys only function 10-12% and I am frail as a result and as a result of Lupus generally.
 
There may be a chance, that my current ESRF is caused by a flare-up of MCTD/Lupus, similar to when my kidneys first failed in 1971, and it is my hope
that this is the case once again and so my approach has to be with that hope in mind. If I subject myself to an overload of UV-rays right now, a flare-up
would damage my chances to recover again permanently. Unfortunately I have not come across any Hospital doctors who seriously cater for SLE-patients
with severe photosensitivity. This may be for a variety of reasons including legal ones. This is a great shame
because they are there to improve people’s health and wellbeing.

I hope this give you a better idea of this serious problem.
Title: Re: I am interested to know...
Post by: lorna on October 21, 2010, 01:32:45 AM
do you tolerate the gabapentin well ? My gp suggested i take it for my pain but my neph said no way beacuse its too dangerous for someone with kidney problems. He said it messes with their nerves and makes them very sick and have a horrible reaction...could that be your dizzyness? i take dilauted and it works well! Also i dont do anything to prep for treatment but personally i like to fall asleep it makes the time go by faster!
Title: Re: I am interested to know...
Post by: KICKSTART on October 21, 2010, 03:20:58 PM
A friend of mine has Lupus and cannot stand the sun , she has to cover up all over , so i guess this is similar for you ? Nothing will ever be done about the lighting in hospitals im afraid ! The fluorescent lights give me a terrible migraine type pain in my left eye and despite seeing a specialist about it and him writing to my unit to say can i go in the small dark room thats available they take no notice, so i have to endure nearly 5 hours of this but then it continues into the next day , so i can understand some of what you are saying. But they will never change the lighting because we are in a minority ! Just to make it clear , when you refer to SLE is that the Systemic Lupus ? Only my friend get treated at Leeds and they put her on an iv drip (i dont have the details) but she says it helps no end. Maybe you should contact someone at the Leeds Hospital ?
Title: Re: I am interested to know...
Post by: kristina on October 22, 2010, 01:15:30 AM
Thanks for your reply, KS, you are absolutely correct.
Like yourself, many girls, for example, at Supermarket check-outs, who sit under fluorescent light for hours,
have nagging headaches etc. They told me so.

Again, you are right that nothing will be done about this because, yes, we are a minority,
and also it would cost billions to change back to normal filament lamps. (... Not to mention the Green-issue...)

I encounter exactly the same problem as you in that hospitals have no provision for allowing patients like us
to sit in a room without fluorescent light. It seems amazing that a hospital cannot cater for this problem.
All they need is a few small rooms with a desk lamp with a filament bulb and that would be ok.

Yes, the sunlight is also a problem and again all that can be done is to avoid strong sun-light,
and wear appropriate clothing, creams, dark glasses and a wide-brimmed hat etc.

As for your friend having some type of drip, I have no idea what this might be,
but they have different procedures for a variety of conditions within Lupus-treatment.

Just to clarify the terms, SLE is Systemic Lupus Erythematosus, and MCTD is Mixed Connective Tissue Disease.
Both of these are systemic diseases, which means there are interreactions with all parts of the body.
MCTD is more an umbrella-term under which you could put SLE along with other interconnective tissue disorders,
which might fall outside of SLE. It appears that each patient with SLE/MCTD has their own pattern of symptoms
and each patient has to be treated individually and this makes dealing with/treating this disease so much more difficult.

My particular difficulty is multiple drug-intolerance (intolerane to many tablets and treatments...) and allergies
(which are not uncommon symptoms among SLE-patients),
so this further complicates dealing with issues surrounding my SLE/MCTD, my ESRF and Dialysis (if and when I need it).

It is because of  these basic reasons that it has been difficult for me to find specialists
who would be willing to organize, support and treat my health and well-being.
Quite often my health issues and medical history overwhelm medical people
because they have no real answer – not even a room for me to sit in without fluorescent light.
It would be a welcome relieve for me to find a doctor who had the character
to work with me to manage the multiple medical problems I have
which this disease creates, particularly now as I am in ESRF.

Thanks for the input on this thread,
I think several interesting points have been brought out.
Much appreciated, Kristina.

Title: Re: I am interested to know...
Post by: KICKSTART on October 22, 2010, 04:50:40 AM
Would it not be worth a call to Leeds Hospital? Its Leeds General to see if they could point you in the right direction? I presume you havent contacted them before? As for the lighting all you can do is protect yourself as best you can . Sooner or later dialysis is going to happen, so you just have to figure out the best way to get through it .
Title: Re: I am interested to know...
Post by: kristina on October 23, 2010, 12:28:18 AM

Thank you very much KICKSTART, I think you hit the nail on the head,
we just have to do the best we can, using what information we can gather,
in order to make an informed choice.

Thanks for the suggestion of Leeds Hospital, it is something I shall look into.
I have got another possibility which is in the pipeline, so I hope in some way
matters might resolve themselves.

Thanks again from Kristina.