How do you know when you need dialysis ?

[brocky99]

Hi been to clinic today and still no closer to finding out when dialysis will start. My kidney function was at 6% a fortnight ago and I have had my bloods took today just waiting for results. I was just wondering at what stage others started dialysis and how do you know your body needs it. My ankles have been swollen for last 2 days but the nurse didnt seem overly bothered today I told him I was tired all the time and he said it is prob weather and running round after the kids as well as my kidneys failing. But my kidney function has gradually reduced by 1% everytime I have been to clinic for last 2 months which has been fortnightly. I look ok at mo but feel like I said very tired, and get out of breath very easily. I dont want to go on dialysis as such but with having the kids to see too I just want to be organised and ready for the day I do, but nobody seems to want to commit anything. I have read lots of literature that says from 10% onwards. My fistula is 8 weeks old this week and the nurse said today he thought it was mature but I have to go back tomorrow for a scan of it, so hopefully this will get things moving but now not back at clinic for another 3 weeks. Dr says today if I feel I need dialysis to get it, but once again it was a doctor I have never seen before and I dont think he understood how even though I am scared I know it is a procedure that has to be done and hopefully it will make me feel better than I do at the mo. :confused:

[Jack]

I think that the decision to go onto dialysis is taken by considering all your symptoms rather than simply looking at blood test results. In your case, I would have said that if you are retaining water and feeling unwell then the time has come. In my own case it was slightly different and my renal function suddenly changed from a steady fall to almost non functioning. I then started dialysis using the CAPD method so there was no need to wait.

[Sangye]

Wow, I didn't know they'd let it get to 6% without doing dialysis. Your poor kidneys! :(

[gmyi]

HELO
YOU MENTIONED THAT YOU READ A LOT ABOUT RENAL FAILURE HERE I SEND YOU A LINK WITH INFORMATION ABOUT DIALYSIS I HOPE IT WILL HELP
Continuous Ambulatory Peritoneal Dialysis : CAPD Introduction (http://www.renalpatients.co.uk/capd.htm)

[Jack]

Lots of info on that site. :)
The CAPD system is the one that I used to use, but unfortunately it is only suitable for some patiens. I believe that the system brocky is going onto is the regular hemo type - Patients & Carers Web Site : Haemodialysis Introduction (http://www.renalpatients.co.uk/haemodialysis.htm)

To be honest, neither system is great and a transplant is the real answer for many.

[gmyi]

Hello
I had been in hem dialysis for about a month and then went to CAPD for six month then my Creatinine was lowered to 2.3 and stop the CAPD from then my creatinine is steady with monthly blood checks

[Jack]

Sounds like you had a lucky escape. Your createnine level is about the same as mine, but I've had a transplant.

[gmyi]

I know that I am lucky thanks G-d back in the begining of WG I had creatinine 9.6 and the doc. told me that hemodyalasis do damage to the kidney and CAPD helps to recover the kidney function it seemed that in my case he was right

[brocky99]

Doctors have said they dont think my kidney function will improve. I have decided on haemo because I have 2 children aged 12 and 8 and i want to keep my home life and 'treatment/hospital' life seperate plus i have no room at home to store the fluid if i was to do capd, and i havent got a spare room where i could keep just for me and with 2 children, 2 dogs and glyn my house needs a lot of tidying and cleaning. The dialysis coordinator has phoned me today and I have to go and look around the unit next week and they will then give me a start date. There is only 1 available time at the mo and thats 5 till 9 in the evening, not the best time for me because i feel i will never see the kids but will be ok for next couple of months whilst kids on summer holidays cos get to spend all day with them but when they back at school i will get to see them for an hour tops and they will be in bed when i get home. I think I will prob start mon 12th but will find out for definate next week. I know I have got at least the next 6 months on dialysis cos my consultant wont look into a transplant till next jan at earliest.

[elephant]

Praying you get a transplant soon. I was blessed to have a brother who donate one of his kidneys and were a perfect antigen/antibody match. Keep up your positive attitude. Wish you well.

[Sangye]

I hope it goes well for you, Brocky. How many days a week do you have to go?

[Hammy8241]

Brocky, Hope it goes well and doesn't interfer with the Sunday Bingo... now that would be bad news:)

With the kids on summer holiday, the time by yourself at the end of the day could be rather nice!

Lets hope you get a transplant soon.

[Jack]

Hope it all goes well. I too had to get stable on dialysis before going onto the transplant list, but was told that if I was in the same position in future I would be put on the list immediately. I thought that they had changed the strategy.

I can fully understand your choice of dialysis given your circumstances. I was in a different position and CAPD suited me just fine as far as these thing go.

[brocky99]

it will be 3 days a week mon wed and fri the nurse said i should get some energy back within a few weeks only been shopping for a couple of hours today and im shattered, so i hope so.

[brocky99]

Hi all hope you are all ok. I went and had a look round the dialysis unit on tuesday morning and it seems to be ok. I start next wednesday, get to go during day because I need to see the doctor, so thats not too bad. I am feeling really sick today had a anti sickness tablet but it hasnt kicked in yet. The prob with wegeners is you never know how you are going to feel when you wake up from one day to the next. Went to visit family in Wales on Tuesday my cousin has just had a baby boy so we went to have a cuddle, whilst there my auntie and uncle said they would get tested so my family are starting to listen to me now and understand how serious it is, so feel good about that.

[DEE]

hi brocky 99
glad things are starting to get sorted out for you
having the same problem as you today having prob with feeling sick trying to keep down first lot of tablets so that i can take next lot
due to go to hosp appoint pm i know what you mean about not feelong the same two days running its getting other people to understand it
its not that you are been awkward whenn you make arrangement and add on ( if im ok)
ive got up in a morning ready to go somewher and then by after breakfast felt so rubbish that i cant go out
BUT as we all say Keep your chin up tomorrows another day
take care of yourself DEEx

[lafounk2]

Hi, my name is Kelly. My oldest son, Josh, age 16, started dialysis on 11/18/09. His creatine was 6.2 and what made his Dr decide dialysis was his potassium went up to 7.2. Josh has been on dialysis since then and we are so hoping and praying for transplant end of July into August. There's a donor being worked up now, age 31 0 out of 6 antigen match unfortunately. At least Josh may get a living donor vs. deceased. Do you know what blood type you are. I am not a candidate for donor for my son since his bloodtype is B and he needs a B or 0. Mine is AB+. I sure wish I knew of someone that could utilize my kidney and likewise would know someone that would be compatible for Josh. Hoping the current potential donor's testing will all go ok.

[brocky99]

Dialysis - AAAAARRRRRGGGGGG. Its doing my head in. I am fine with the needles etc. It is just the vein they are using is still soft so they are struggling to find it I was pricked 6 times on monday, they eventually found it then was on for 30 mins and then it blew so it was killing then. The nurse who came to answer my call looked at the machine messed with the needle then went off to get the sister meanwhile my arm is getting more painful as blood is still flowing into the arm but not back into the vein by the time the sister got to me it had swollen real bad. I could tell she was pissed off but obviously didnt want to say anything to the nurse in front of me. Sat there for another half hour whilst they decided whether they were going to carry on with only one needle not sure how that works, anyway they decided to send me home instead, great except I am being dropped off and picked up at moment in case the dialysis makes me go light headed so had to wait for Glyn to come for me. They took bloods and were supposed to phone me 2 hrs later with results and to let me know whether i had to go back following morning for another session. no phonecall so assumed i was ok will find out tonight but am going to mention about not getting phonecall because i had to arrange childcare for the kids just in case. So back tonight again not sure how the one needle will work but obviously it does, they only nusing one to give the rest of my arm a rest but now got another huge bruise to add to the rest on my arm. Suppose tonight will tell. Sory for venting just fed up I dont normally get like this but my arm is still throbbing and i know it will be a problem again tonight.
Lisa

[elephant]

Keep venting, sorry you are going thru this and being dependent on a machine must be annoying. Hoping for a better day for you!

[Hammy8241]

Know nothing about what you are going through Brocky but hope things get better for you soon. No excuse for not calling you back and too true, take it up with them and give them hell. Venting is good for you and here is the place to do it. Bingo on Sunday?

[Sangye]

Lisa you're really going through it. I'm so sorry. Big hugs to you for a better day today.

[DEE]

good luck for tonight hope things go better DEEx

[brocky99]

Know nothing about what you are going through Brocky but hope things get better for you soon. No excuse for not calling you back and too true, take it up with them and give them hell. Venting is good for you and here is the place to do it. Bingo on Sunday?

a lot better tonight only used 1 needle, strange i know how does the needle know whether to take the blood or return it. but the machine takes some blood cleans it then stores in a chamber whilst it takes a bit more then it pumps the clean blood back, and continues alternating. anyway i feel much better and not as stressed as before. i shall hopefully be participating in a bit of dabbing on sunday not been for a fortnight cos sister has been on hols. just need to organise a lift i normally drive but glyn is taking my car down south to go and watch world superbikes. need to sweettalk brother in law 1, for lift and 2, to watch my kids whilst im there.

hope u r ok

lisa

p.s. thanks sangye and dee for kind words.

[pberggren1]

What is dabbing Lisa?

[Sangye]

Lisa, so happy it went better today. That's the one thing you can count on with Wegs-- everything changes. :)

[Hammy8241]

What is dabbing Lisa?

Marker pen with big end used to 'dab' (mark) the numbers as they are called on the Bingo card. Phil.

Hope you get there Lisa and get your 'fix'.

[brocky99]

Well another lot of dialysis last night and again it went well still only on one needle though because top half of arm is still very bruised. Im nearly there with going to bingo, going to my sisters for a barbecue about 3 on sunday so hopefully can leave kids there whilst we go bingo about 6.30pm not mentioned it yet will ask tomorrow when he in a good mood. Need a win though. 3 weeks ago some one at our bingo club won £29,000 now that would be a nice sunday night earner. Im not greedy though just a bit extra spending money will do me.
Lisa

[pberggren1]

Sounds like things are looking up Lisa. We would all like to win a little dough.

Hammy, you are still funny!

[Jack]

Glad you are starting to settle down a little to your new routine Lisa. Hope you start feeling better now that you are on dialysis.

[DEE]

Glad to hear things are getting better Lisa good luck sunday !!! DEE x

[elephant]

Have fun Lisa, you need to have a great day!

[brocky99]

sat here in agony my kidneys are killing me they keep going in and out of spasm. have took some pain killers to see if that eases it. might try and get a little sleep see if they are any better. typical i am in on my own glyn is away and his mum and dad have gone away. will let u know how i feel after a sleep. night night x
lisa

[Sangye]

Lisa, I don't know anything about kidneys-- is that normal for them to be hurting like that? Maybe you should call your doc just in case?

[DEE]

take care of you DEEx

[Jack]

Lisa,
When my kidneys were failing, they used to hurt like hell whenever I was stressed (spasms just like you describe). Try some relaxation if you can.

[elephant]

I would call your doctor, when my kidneys failed I didn't have that pain. It's better to be safe than sorry. Hope you feel better.

[Jack]

This site talks about pain associated with kidney problems - UK National Kidney Federation - Kidney Disease - Pain Control (http://www.kidney.org.uk/Medical-Info/kidney-disease/painintro.html)

[brocky99]

had a sleep and pain has eased quite a bit if still hurting in morning i will give hospital a ring. thanks for your concerns. think im just having a bad day feeling a bit sickly now.
lisa
xx

[pberggren1]

We are worried for you Lisa.

Please get the right help that you need.

[brocky99]

Awwww thanks, think i have prob just overdone it a bit, walked down into town with my eldest this dinnertime its ok walking down but coming back is uphill but i did take my time so it might not be that. (it is only a 5 minute walk) Thats the thing with WG u have no idea and also on top of that the symptoms for kidneys finally failing, sickness etc, are just like the symptoms of WG from the drugs etc, sickness and tired all the time. Will see how I am in morn. Night Night xx

[pberggren1]

Awwww thanks, think i have prob just overdone it a bit, walked down into town with my eldest this dinnertime its ok walking down but coming back is uphill but i did take my time so it might not be that. (it is only a 5 minute walk) Thats the thing with WG u have no idea and also on top of that the symptoms for kidneys finally failing, sickness etc, are just like the symptoms of WG from the drugs etc, sickness and tired all the time. Will see how I am in morn. Night Night xx

Hopefully you feel better in the morning Lisa.

[DEE]

Thinking of you Lisa hope things are better this morning DEEx

[Hammy8241]

sat here in agony my kidneys are killing me they keep going in and out of spasm. have took some pain killers to see if that eases it. might try and get a little sleep see if they are any better. typical i am in on my own glyn is away and his mum and dad have gone away. will let u know how i feel after a sleep. night night x
lisa

Brocky, I'm a bit behind with your post as i was on nights last night (and tonight) Hope you are feeling better now. Have you got some support now for tonight?

[Sangye]

Lisa, hoping you're having a better day today. :)

[Doug]

Lisa- Hope the kidney issues and needle stickers have sorted themselves out. Gad! On top of being stuck till you leak like a sieve for WG blood tests, adding the dialysis to your poor veins' and arteries' need to heal up makes me feel very bad for you. I had kidney issues with my WG in the early stages, and that pain you describe is crippling, isn't it?! I had lines surgically installed in my carotid artery for the seven sessions of dialysis and three of plasmapheresis because that was basically it: I didn't have any good sites to poke left!

[brocky99]

Hi all
Feeling ok today went to barbecue and had a great time only did a few hours though cos I got tired. Busy day tomorrow I have got my ex bosses funeral and then going straight for dialysis. Didnt make bingo though, never mind will be back next weekend hopefully. Just had a couple of hours in the pub which was a nice change, I just end up playing taxi though cos I dont drink. Speak to you all tomorrow hopefully xxxx

[elephant]

Good to hear that brocky99. It's good to feel normal and do normal routine things. Have a great night.

[pberggren1]

You are in my prayers Lisa. I recently just lost some loved ones as well so I know what you are going through.

[DEE]

hi lisa
not heard from you in awhile hope everything ok
thinking of you DEEx

[brocky99]

sorry guys been looking in on passing been either asleep or out last few days. Feel ok-ish still on 1 needle at dialysis might be put back on 2 tonight my arm is looking a lot better this week. They are moving me up to 4 hours this week so hopefully if I go on 2 needles as well I should start to feel better in a week or so Im hoping anyway. This is only a quick visit because too because I have got to be there a bit earlier tonight dont want to still be there at 10 o clock tonight, so leaving in about 10 minutes. Will speak soon xx

[DEE]

Glad to hear your ok DEEx

[elephant]

So glad your arm is looking better and less time with Dialysis!

[brocky99]

went on 2 needles but only did 2 hours 50 mins because my blood clotted in the machine so will have another try tonight. hopefully will get the four hours in.

[Sangye]

Hang in there, Lisa. It must be tough going through this.

[elephant]

Lisa, I admire your strength, sorry Dialysis was rough today.

[brocky99]

well did 3 and a half hours last night and everything was fine. Blood pressure a little high but thats all. Hopefully it will be plain sailing from now on.

[Sangye]

I hope it will, too. You're a real trooper, Lisa. :)

[elephant]

Glad that was done last night and it went well. take care of yourself today. :)

[DEE]

so glad things are looking better for you Lisa DEEx

[brocky99]

Hi guys, sorry not been around last few weeks, been a bit hectic here. I was told on tuesday wegeners is stable and i am dialysing brilliantly reaching all the tergets set so feel good. Unfortunately Glyn has decided to leave me for another woman 3 weeks ago so been trying to get my head together about it all. Anyway starting to feel better as every day goes by so hopefully will have picked myself up soon and be back on track. Hope all of you are ok had a quick scan of the forum occasionally but my head and heart hasnt been in it last few weeks. Take care.
Lisa
xxx

[DEE]

hi Lisa
glad to hear from you again and that your treatment is statring to work for you
sorry to hear your other news but will be thiking of you and wishing you all the best DEEx :hug2:

[Fran]

Hi Lisa, Sorry about going on other thread I couldn't think where you had posted last. I am very sorry about your personal news ( what a jerk) but glad you are doing better otherwise. Hope things get better for you Lisa x

[Jack]

Great to hear that the dialysis has settled down after all your initial troubles, hope you continue to do well on it. Getting the Wegs under control is good news too. :)

Sorry to hear of your separation, there has been some discussion on the forum recently about how badly some people handle the situation of illness in others. Several of us have had poor experiences and indeed, my own wife left me a year or two after diagnosis. But things have a way of working out in the long term so just hang in there and handle each day as it comes.

[Fran]

Jack, You are right, of course - not everyone handles things in the same way - my comment was ill thought out and just an immediate reaction to this happening when the chips are down. No offence meant - they don't call you the wise man for nothing ! x

[Jack]

Fran - there is nothing wrong with your post in any way. There is nothing there to cause offence anyone. :)

[Sangye]

I agree. I think it's one thing if a partner leaves, but entirely another if they cheat on you. There is never justification for that. Fran, if you're not using that "jerk" label, may I? :wink1:

[Jack]

I just wrote a whole post here about the strain partners were subjected to, but then deleted it! Perhaps I sometimes try to be too understanding of both sides. :unsure:

[elephant]

Brocky, I am sorry to hear about your seperation and right now you need to concentrate on staying healthy. I am happy to hear your WG is stable and hoping you get a kidney soon. Glad you let us know, I was wondering what happened to you.

[Fran]

Aw thanks Sangye - yes take it off my hands. http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.pnghttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.pnghttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png

[Geoff]

Hi Lisa, Wishing you all the very best and that you can draw upon the strength and love of this big extended family.

[Doug]

That's awful personal news, Brocky. It is regretable that someone would do that to another person, and I do believe that the old saying "what goes around, comes around" will apply. How can the other woman (once she screws her head on more tightly...) ever trust your husband not to pull the same stunt on her? How can you husband look himself in the mirror and see a decent human being?

[Hammy8241]

Lisa, I have spent the past hour or so trying to write something to express my feelings for your situation. Whatever I write sounds condescending or just not appropriate or right. So I guess all I can say is I’m thinking of you and hope you can get ‘sitters’ so you can get to Bingo. Look after yourself.

[brocky99]

Hi all,

U are right he is a jerk, and he has struggled to get to grips with my illness. But then I have had to get to grips with it. Its really hard at the mo cos we are at the trying to get one up on each other stage and constantly spatting at each other. Its hard for my daughter as well because the woman he has gone off with his her friends mum so i know she feels torn. My son doesnt seem that bothered but he is only 8. He has also rented a flat which is litterally seconds away round the corner so I will probably see him every day, and see her car parked outside etc etc. I knew we have struggled last few years what with the stresses of running the pub then me being ill but I never thought he would do this to me, he just seems to think I can handle it and it wont bother me but I am devastated deep down and he just does not seem to get it. i have always been the strong one nothing really gets me down I have had bad days when I felt why have I got this illness etc. but this has knocked me for 6 in a way I never thought anything would. I know I have to get back on with life for my sake and the kids. the ironic thing is my friends husband left her a few weeks ago and I have been consoling her ever since, she has finally last couple of weeks started to pick herself up and she keeps saying we can go out etc. but I dont want to I cant have a drink not that I ever drank a lot anyway but now I know I cant drink anything it feels different now if u know what i mean. I did go out a week ago but by 12 I was ready to go home and get in bed but as I dont drink I was being taxi and the others were having so much fun I didnt want to spoil the night. Anyway rant over again Im so glad I have somewhere to rant it makes me feel so much better to get it off my chest. Thanks for being there. Im sure it will get easier with time and do believe in what comes around goes around. I just hope he doesnt think that when shes had enough of him he will be able to come back to me because there will be no chance. He came to collect some clothes tonight and I made him knock at the door which was weird but I told him he no longer had the right to just walk into my home without being invited in petty I know but it made me feel better. Thanks for 'listening'. Speak to you all soon.

[Sangye]

You're a tough cookie, Lisa. I'm proud of you for standing up for yourself. Rant, vent and cry--- we understand. :hug2:

[elephant]

Dito to Sangye statement.

[pberggren1]

I can't imagine how you feel Lisa. I know the hurt will stay a long time but eventually it gets better. You rant as much as you like. We are all listening.

[jola57]

Dear Lisa, Hammy said it best. No one can know what you feel, but know that we all stand with you and hold your virtual hand and lend our shoulders when you need it.

[brocky99]

Finally took all his stuff on Saturday morning. Unfortunately it turned into a fight before he left and he threw a can of paint all over my landing and stairs carpet which in turn went all over dogs and me and all over rest of house. my sister and her husband came to help clean up and now it looks like i have a new house. He threw me around a bit and hit me a couple of times before he left but at least now I hate him and know he will never set foot back in my house ever again. unfortunately his mum who has been with me every step of my illness has also turned on me and she went for me as well so she will never be allowed in my house either. At least now I am way out of it I have informed the police but told them I dont want to press charges (just for the kids sake, they saw it all), but my address is flagged now in case I get any more trouble. Just need to sort out arrangements for him to see the kids but at the mo think its best if we all cool down. Anyway feel good this week apart from a few bruises and a broken little finger I know I have now got to get on it, and I am no longer pining for him to come back. This new woman is welcome to him now Im sure they will be very happy together for the time being. We have had major arguments before but he has never laid a finger on me just goes to show how much u dont know somebody when u think u know everthing about them. He has thrown things around before when we argued but never lost the plot like he did on Saturday I only said they were both 'slappers' and I hope they will be very happy together. Anyway the positive to come out of this is I am truly over him and cant wait to get on with rest of life.

[DEE]

So sorry you have had such a hard time ,i hope you can now look forward take care of you and yours DEEx :hug2:

[elephant]

Sorry to hear that Brocky, glad you are moving on. How are you feeling health wise?

[pberggren1]

I sure hope he does not bother you again Lisa. Unfortunately it will take a few years to totally get over him. You have been through so much with Wegs and now this on top of everything. You are one tough lady.

[brocky99]

Im feeling ok healthwise seem to have a bit more energy now. I too hope he never bothers me again Phil but unfortunately we have to sort out when he has the kids which I just cant get an answer from him its doing my head in because they want to spend some time with him. But its his loss at the mo and to be honest dont think either of them want to see him at mo cos of what they saw over weekend. The one thing is Im not keeping quiet about it so everyone will know what he has done to the house and myself in fact my sister will be playing darts in the pub he usually drinks in tonight and im sure she will be telling everyone what he done. She wanted me to press charges she was that angry and upset but i wouldnt do it cos of the kids they dont need their dad arrested as well as leaving us. Anyway from sunday my new life has begun. Im going out on Friday night to see a Robbie Williams tribute act, im even going to have a drink I think I deserve one after last few weeks not too many but enough to make me giddy will be fine probably wont take that many anyway.

[Sangye]

Lisa, that is awful! Don't ever let him near you again. I love the quote by Oprah, "When someone shows you who they are, believe them the first time." I am so sad for you going through this, especially while being so sick. Big hugs to you, girl. :hug2:

[DEE]

Hi brocky99
i was just thinking we had not heard from you in awhile when i saw your post to Phil
how are you doing just now ? DEE x

[brocky99]

Hi folks sorry not been around but been making sure kids ok and dealing with everything that has been going on. Just a quick update, spoke to my doctor last week and he says he thinks i might be flaring again as my bloods are creeping up slowly did more tests and just waiting for them before a decision is made on whats next. Problem now is no more kidneys to attack so must be attacking somewhere else. I am more annoyed I have to wait another 12 months before I can go on the transplant list. I have found trying to juggle dialysis and the kids hard work these last few weeks since Glyn left, but I ahve managed just about. Anyway its late here and need some sleep. Hope everyone ok I havent even had time to read what as been going on these last few weeks but I will get around to it soon. Night Night xx

[Sangye]

Hi Lisa, thanks for the update! I'm sorry to hear you're flaring again. You've got your hands full and I hope things settle down. Hugs to you. :hug2:

[elephant]

Big hugs to you LIsa. Wish you a good days rest!

[Jack]

I am more annoyed I have to wait another 12 months before I can go on the transplant list.
Is this because they are worried about the activity of your Wegener's or do they want you to be stable on dialysis before going on the list? I seem to remember having to wait around 3 months on dialysis, but my Wegener's was reasonably controlled by that time. The last time there was a drop in the function of my transplanted kidney they were talking about putting me on the list even before dialysis. Luckily, things sorted themselves out so I did not have to go there.

[brocky99]

They told me in february this year I had to be in remission for 12 months before they would consider a transplant so we were looking at feb 2011 now doctor said last tuesday it will be another 12 months before considering it.

[Fran]

Hello Lisa - Sorry things are so tough for you and you think you are having a flare - hope things really start to go better for you soon xhttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Fran