Are you about to start dialysis? Ask any questions come here and get the truth.

[dwcrawford]

Thanks Jason... those are some of the questions answered that I have.  Though I am 68, I tend to forget abuot it.  I suppose that guy was right about it being vanity.  We hate the truth sometimes.  How funny, now that I think about it.

Feeling the buzzing wouldn't be my thing.  There was a man in the class I took who had one just a few weeks old.  All the other people gather around him to look.  I looked away.  I am a true Wuzzz when it comes to things like that.  I won't even look if somebody has a hangnail.  And when the draw blood--I usually just murmur "bad words" and look away till then are done.

My center is 9 miles away (at least the one the doctor wants me to go to) and the traffic is hell.  There is one just 2 miles away.  That would be so much better.  I'm going to talk to him about it next time but he said I'd have to get another neph  (and I really like him

[paul.karen]

For the record dw you said vanity i just repeated your words.

And as far as most people saying the fistula is the way to go.  Well this is debatable.  Many of the OLDER nephs are just use to people dialyising in center and may not be up to date on PD.  Or have special interests to send people in center.  Many people here and on other sites never even heard of PD, i know i didnt until i came to this site.

But if you read the articles Okarol posts many docs and patients are pushing for in home dialyis be it hemo or PD.
I am NO EXPERT other then what i read on these sites.

If you ask people which is better at home, hemo or PD many of the answers seem split 50/50.
From the little information i have gatherd PD hopefully will be good for me.  I need to continue to work.  And from what i gather you dont have the ups and downs on PD that some people feel while on hemo.  Again i just have this information from reading on sites like this one.
But either will save your life.
my 

[RichardMEL]

The thrill is a great "party trick" which either delights people or freaks them out. I think I related the other day a story about when they brought a gorgeous medical student around to me to explain Dialysis, needles blah blah all that boring stuff... so the nurse invites her to feel my fistula. Of course I couldn't resist telling her I was THRILLED to see her.... oh come on it was true (my blood pressure went up to prove it!!  ).

I'm a tshirt or polo kind of guy myself and I really DO NOT CARE about walking around with my fistula showing - since it's at my wrist and the needle holes go up my left arm it's hard to hide. People can think what they like. I reckon if someone asked me if I was a drug user I'd quip "only the legal ones. I'd almost wish I was on the other stuff!" or something. meh. The people that matter to me understand what the deal is. My co-workers understand.. if people want to judge (which they will anyway) well let them. I've got enough to deal with without worrying about what some loser thinks.

Actually I was in a fast food place the other day (shhh don't tell the dietician !!) and a guy actually had the balls to look at my arm and ASK "what happened to your arm?" - not rude or anything more curious. I explained and he was cool. Just what you want when you're ordering your burger and fries!! LOL. Once or twice when I've gone out after dialysis and had the bandages on my arm people at 7-11 or supermarket (like cashiers) have asked if I'm ok which is nice really!

I don't drive but yes I do get quite tired after dialysis and tend to get hom (over the road!!!) and have a cat nap (and yes, the cat usually joins me)

[paris]

DW, I am so impressed with how far you have come in such a short time!  You are gaining knowledge everyday and you are asking great questions.  I think anytime a change is made to our body, we wonder how it will effect us.  My daughter has a 7 inch scar on her throat and it has taken a couple of years for her to be comfortable with it.  You wouldn't believe the things people have said to her!   I think the same is true with a fistula.  Everything takes time to adjust.   Keep asking questions.   

[dwcrawford]

  I do read most everything that is posted here and I’m trying to read all of the old post.  Some of it, however, doesn’t mean a lot as I’m not up on the terminology.  I just found the list of dialysis acronyms that someone posted at one time.  I should print it off.

PD (they gave me not information on that).  Basically, at the class, they did mention of forms of dialysis but came back with lots more info on  hemo.  The nurses presenting the class said they thought in center hemo would be my best bet.

I like the idea of home treatment but it doesn’t seem practical for me since I have no partner.  I visited lots of other ideas and am still trying to come up with some creative solutions but that all remains to be seen.  I even suggested that maybe I could find someone else in the neighborhood who had no partner and I could set up a mini center here.  Then we could do each other.  They laughed at me.

And I don’t really care what other people think or say.  Those vanity questions were for me only and wouldn’t change any decision I’d make for sure.  I just had surgery on the bottom of my foot for a diabetic ulcer removal.  The orthopedic guy makes me wear this heavy ugly black boot all velcroed up.  I wanted to get one for my right foot too simply for the fashion statement.  (lol)  I mean your shoes should match.

RichardMel, you are sometimes hilarious.  I’m sure you get away with those comments to the nurses because of your Aussie accent.  If I tried that stuff with my ole Texas accent somebody would surly slap me. (lol)

Like the driving issue:  It is something I’d need to plan for in advance.  Shuttle to the Medical Center is $40 per round trip (times 3 per week)  ugh…I’m over insured but that is the one thing not included.  I’ve been looking into other and cheaper options but would much rather drive myself if possible. 

It is just that I’m trying to look at every option since it is “poor old me” all alone.  I’m also worried about taking baths…. I use my left arm to push out of the tub.  I’m considering do I need to install a new “thing m’gig” or switch entirely to showers.  See, it is so many petty things. 

Anyway, I am really thankful that I found this site.  I feel like I know some of you guys already and I truly appreciate your talking to me.  I really need to stay away from that chat though.  It is cutting into my beauty sleep.

[Zach]

I really need to stay away from that chat though.  It is cutting into my beauty sleep.

And some in the chat room are drinking a bit too much Jack Daniels.   

[RichardMEL]

Dan, I think you are worrying a little too much about the fistula arm - it doesn't become like a useless limb!! Heck I am typing with mine now, and I use it normally. Stuff like pushing yourself out of the bath with it should not be an issue at all IMHO. You just need to be aware not to life heavy weights with that arm (but I am fine if I hold stuff with both arms) and not to wear tight restrictive clothing over the fistula - those are just general rules. You will find what works for you and what doesn't, but don't let the talk make you think that the arm just becomes an essentially useless part of your body - far from it. They just make these suggestions/rules to protect the access as much as possible (so no watches and blood taking or BP cuffs on that arm etc). It's all about protecting the fistula because it is such an important thing. However you don't wrap your arm in cotton wool either - you can still use it! So please, don't worry about stuff like the bath in my opinion.

As for hemo v. PD. In my situation everything was discussed but by mutual agreement it was decided in center hemo was the only realistic option for me. Like Dan I live alone (well with my 4 legged mistress) so home hemo isn't an option (though the nurses and I do get a kick out of the mental image of my cat holding a needle...  ) and because of my eyesight and co-ordination issues I decided against PD because I do not feel comfortable with connecting up that stuff to do the transfers specially with the risk of infection if I got it wrong. Before I started dialysis I attended a very long seminar the team put on where they showed everything - hemo machines, needles, the PD setup etc so we would all be familiar with the different options and could make an informed choice. That was eye opening but also very VERY good because I feel like i wasn't just told "you will do hemo" but made a decision knowing some facts.

I am not sure I always get away with my comments but I find humour is ESSENTIAL in this thing. I managed to make one of the nurses totally crack up last night though she was trying oh so hard to keep a straight face (the sweetest woman from Hong Kong) and it was hilarious and just what I needed since I had been suffering a *@)#@*@)@ foot cramp and was in a bad way. Sometimes you just need that. (in case anyone's wondering - they used a portable ultrasound on me yesterday checking my fistula and watching the blood flow etc.. they were remarking on his big my access was and how good the flow was, but they couldn't see the needle (!)... anyway I quipped "Well you know what they say about men with big throbbing accesses with good flows..." and this nurse just couldn't contain herself after trying so hard. It was brilliant!). We all had a good laugh.

That's one of the things I love about the renal folks in general. Because Dialysis is such a long term treatment (usually) and you see the same folks day in day out they become less nurses, or us and them, and more community and in some cases almost family. I think that's how we can get away with stuff like that. It's such a special caring environment and some of those guys are so so very special I know if I got a transplant tomorrow I'd still want to visit the staff because they're so dear to me.

[BRANDY]

I dont know when d is going to happen but i got my  tests back today gfr is 15 it was 19   before that is was14.  I feel sick all that time   I know what you guys ment when you day you are sick.  Im to that point .WHAT do I do .  I got an appt In one week.  I am sick off and on all day.  meat makes me nausea when I even think about it.  I cant hardly  believe that because I love meat .  cant hardly type this just thinking about It.  help me understand the process of dialysis.  and the size of the needles. In my mind it is huge.  How do you get used to it.

[MandaMe1986]

Well I agree with RichardMel.  Who cares what people think.  Live life, don't stress about what someone may or may not think about you.  Let them look, just shows what kind of person they are.  All that matters are the people who are close to you, and they should love you enough not to even knotice.  So yes I say SCREW THEM WITH A BIG STICK!

Okay now for a question of my own.  How long should one have fistula before you can use it?  My father  has had his in for soemthing like 3 weeks.  And I am so worried about him getting an infection in the line in his chest. I had one and got the worst infection.  I really don't want that to happen to him.  So yes when should he be able to use it?

[RichardMEL]

Manda - I've always understood they wait 4-5 weeks for a fistula to mature enough to use but in some cases they have tried earlier. So I'd say your father's fistula would be VERY borderline.

BRANDY - This is quite simple - you NEED to start dialysis. I know that is scary and all but if you feel sick all day, nausea etc.. this is the time. Forget the GFR reading, etc.. it's as much about how you feel as it is about those numbers. You tell the neph how you're feeling day in and day out and you'll be in.

Look the needles are as big as you want to make them in your mind I guess. I just don't look at them when they do it. I look away and think about happy things (ok, usually girls  ) or I distract myself chatting to the nurses or pulling faces or whatever. It works for me. If you get a local shot before they do it - at least the first couple of times - you won't feel the needles. When they're taped in you won't see them so much inside and worry about it. I am confident after a few sessions you won't care about the needle size. They do the job and that's what matters.

Please Brandy do not put this one off. I know you want to but you are only going to (likely) suffer more. Nobody wants that. Dialysis hopefully would stabalise you and allow you to LIVE rather than exist feeling like crap. Hang in there!!

[BRANDY]

Richard thank you for putting it to me that way  I will talk seriously to neph If he thinks I need to  I will as soon as possible. I cant go much longer  I do not think. Im foggy headed at times and sharp pains in head at times . Dizzy light headed neasea at times most of day. I bump into things    I walk drunk,    But the strange thing is some of it comes and goes.For three days straight  I have felt awful.   I do think I have to do something if it is dialysis  then let it be.   
  I dont have a clue to what to eat now much less a dialysis diet   I am going to do a little research on this tho.   Talk at you later.       I already feel much better. 

[MandaMe1986]

Brandy don't worry to much about the diet part. To me it is fairly easy.  As time goes by you will learn that the stuff you shouldn't eat makes you feel worse then the stuff you should. And  you tend to stay away from things.  But pretty basic diet is low protien, low potassium, low sodium. And you should be alright.  I mean there are other things to stay away from based on your labs. But keep an eye out for recpies on here that people post.  And you start to get ideas and stuff. 

Richard is a sweet guy, and yeah he is right. Don't put it off.  My dad was having a lot of the same problems right before he started and he said that right away he could tell a diffrence from the being dizzy and feeling like he was drunk. 

But I do hope that if they don't start you on dialysis soon that they find something else that helps.  Keep us updated.  Take care.

[RichardMEL]

OMG! OMG! OMG!!! A girl said I was sweet!! OMG OMG OMG!! 

phew, now that I got that out of my system hehe...

I totally forgot the diet thing!! Yep, Manda's a sweet girl too, and she's right about the diet. For me this is not so big a challenge as it seems when the dietician stomps in and gives you "the lecture" on what you can and can't have. Based on my labs and a desire to live a little I've figured out it's really an exercise in moderation and willpower/self control (hmm and a girl thought I was sweet???  ) - what I mean by that is that over the course of a day it's OK to have some "worse" stuff as long as you mix it with "better" - soo let's say you have something with a higher potassium rating in it, like a slice of tomato in a sandwich or roll for lunch... well, you just remember that and don't have anything high potassium for the rest of the day. And if you do have stuff in the "worse" group (by that I mean high potassium, phos, etc) then don't have lots of it. A single slice of tomato is fine; a whole tomato or more.. not so good. Oh and don't go tempting fate (so no bananas!! ). As MandaMe says, you will work out what works for you and what you can handle and not. I think most dieticians come at you the wrong way and give you the fear of God about a list of high potassium or phos or calcium or whatever foods and make it out that you simply can't have that ever again. That's simply not true.. you just need to monitor what you take in and be smart about it.. and damnit I'm going to enjoy as much as I can while still being safe by my body(ie: labs) rather than scared into submission. So yeah, I did have a burger today!! SUE ME!!!

[MandaMe1986]

Lol, yes Richard you are a sweet guy.  With a tad big of a wild side.  But gotta love. Haha.

And yeah about the whole diet thing you will learn with time what works for you Brandy. And like Richard said, it is alright to have some of the bad things just have to limit yourself.  And you have to choose what it is you like more and what you are willing to give up.  Like you can't have lots of Mango and Patatos all day.  You can have a patato or a mango.  And who knows your labs might tell you, you need more of something. Like me my potassium tends to run low a lot, so I have to eat a little more potassium.  But one thing I am gonna say though is when your dietician comes in and gives you the "speach" keep in mind that it isn't as bad as they make it sound. Its a pain in the butt, but not the worst part of all this.  Promise.

[RichardMEL]

Listen to Manda - she's much better looking than me!!! 

Brandy I know this is so much for you to take in - specially when you feel like rubbish most of the time.. I think the important thing to focus on at this point is that starting Dialysis almost certainly WILL help you feel better.  Yes, you will have to make changes - putting up with the needles, sitting on your ass for hours, diet & fluid restrictions etc but frankly all of that is worth it compared to the alternative - that's how I view it anyway. You'll also find you can get used to it too and some things - like the diet stuff - get easier over time - and like MandaMe says in your particular situation your restrictions may not be as severe as for some others - it all depends on your own situation. I think you shouldn't stress too much about that stuff at this point. it sure sounds to me like Dialysis will help and that's the most important thing.

You will be cool mate!

[BRANDY]

I do not understand how I can be pretty much myself today after 3days of being so sick . I am still a little nausea.  I still will get with neph  . Oh thank you   Manda and Richard for your input   I understand what you are saying. It is always talked about in the forum   about how hard it is to eat and I have just been scared I couldnt do it right.The diet is going to be a chalenge but I cn do it if you can I am feeling alot better since you two have said all this .  YOu do know you have helped alot others by saying alll this to me. Others are wondering the same thing I would assume.  This forum is great.      to both of you  Im smiling at you two

[MandaMe1986]

Any time, and your right I love this place!

[RichardMEL]

Aww Manda I thought you just loved me!!! 

Brandy I think the fear of the unknown is the big fear. Once you're there you'll probably wonder what all the fuss was about. I can confidently say it DOES get easier after the initial time.. specially as you stabalise on dialysis, feel generally better and get into the swing with meds, diet etc. Just look at Ol Man Zach.. he's been going for 27 years and he ain't slowing down for ANYONE!!!

(btw that's "Ol Man" in terms of Dialysis experience!)

Glad you feel a bit better today but you do need to be clear with the neph about how you have feeling generally over the past weeks.

[BRANDY]

Richard I am still trying to figure out .  Is my kidneys taking te toxins out   the reason Im feeling better? If so it is giving me a false since of feeling beter. I still pee  probably 5or6 xs a day.I do drink alot of coffee. Im not swelling lately . I woke up pretty early 5 oclock  and here I am on forum. Great place to be   I feel pretty good this am  still not right th  a little fog hanging there. But other than that ok.   I ate spaghetti  last nite  just to se if it would make me sick   but it didnt.  Iv got 4 days till I see neph   Im counting down.  Thanks alot Richard for your mighty knowlege. Im not giving you the big head am I    Hope you feel good today  cause it is a beautiful one here .. Although it is cold.    Enough of my rattling, see ya later

[MandaMe1986]

Aww Richard you know there is enough Manda Love to go around.   And there will be even more once I get working on the MandaClone.  So no worries!

Brandy I am so happy to hear your feeling better! yey! As time goes by you will find that bad days come and go. You can never really tell when they will be around.  But heres to many more good days 

[RichardMEL]

BRANDY -I am glad you are again feeling well but it's very unlikely your kidneys have done a 180 and are on the improve (unless you're somehow related to Lucinda!!  ). Even after nearly 3 years on dialysis I have good days and not so good days myself, but in general the variation is less in that I feel much more stable. Not fantastic, but not horrible and I can work full time (when not on D anyway) and do everything else I need to do and that's the point of Dialysis (along with keeping us alive, of course). As I've said before the fact that you've had days of nausea and fog suggest that the toxins are getting the upper hand. As for not retaining fluid - that's great - but I didn't have that issue either before I started dialysis. If you continue to feel good that's great but I would be more concerned with the times you've felt bad - going on what you've written those days have been pretty much written off for you. That to me more than anything says a serious evaluation needs to be made about you starting dialysis.

Now if you don't mind I'm off to sit by the front door waiting for that MandaClone to come give me some lovin!! 

[monrein]

Richard I am still trying to figure out .  Is my kidneys taking te toxins out   the reason Im feeling better? If so it is giving me a false since of feeling beter. I still pee  probably 5or6 xs a day.I do drink alot of coffee. Im not swelling lately . I woke up pretty early 5 oclock  and here I am on forum. Great place to be   I feel pretty good this am  still not right th  a little fog hanging there. But other than that ok.   I ate spaghetti  last nite  just to se if it would make me sick   but it didnt.  Iv got 4 days till I see neph   Im counting down.  Thanks alot Richard for your mighty knowlege. Im not giving you the big head am I    Hope you feel good today  cause it is a beautiful one here .. Although it is cold.    Enough of my rattling, see ya later

Maybe get some blood work done to check things like potassium level.  If it's high, be very very careful about experimenting with any high potassium foods...like tomato sauce.  Glad you feel better.

[BRANDY]

I seen my neph. and he took me off calcitrol and calcium bc my calcium was high.  He said that might be why I was dizzy ,walking  drunk and had the foggy feeling. I am to get a blood test in 1 week. my phosphorus was a little high,  BUN 59 and gfr of 15 creatinine of 3.33. My fistula is looking good. He didnt say how long it is till it is matured.I also have been having low blood presure , He just told me not to take lisinopril if it is 99 or less on top.So  I am not taking near the med. I was  great.He said it looked as if I am eating  right just keep it up . thats my update

[MandaMe1986]

Yeah Brandy! Good news!  I am happy for you.  Thanks for keeping us updated 

[Zach]

My fistula is looking good. He didnt say how long it is till it is matured.

Are you exercising it?