dialysis
Posted , 11 users are following.
and what stage did your doctor talk to you about what sort of dialysis was best for you mine is going to get me appointment to talk about mine i am early stage 4
0 likes, 42 replies
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Notes on dialysis
helen54849 davey72
Posted
Hi,
Thanks Weeled hope you are well. Davey my neph started discussions with me at 20% and it went along the lines of do a bit of research into both types, come and visit the haemo unit and speak to the patients then make your decision. I was told that if one didn't suit I could try the other. I can't tell you a personal experience of haemo as I researched it, spoke to the patients and looked at the restrictions, plus the three times a week to hospital (I hate hospital and I hate people faffing with me) so I decided PD (perinoeal dialysis) was more suited to my life, I was still working full time and had small people to look after so it suited me to do it at night myself and there are less restrictions ie food and liquid. I started dialysis at 6% but as weeled has rightly said there is no set time as we are all different and it depends on the symptoms you are having or how well you feel. Please don't worry as they won't let anything happen to you, you can have an emergency line in your neck that is temp until your chosen method is ready. I would have a look into both and see what suits you and your life. I don't want to overload you with how it is for now, but if you want to know anymore about my experience on pd I would be happy to share if it helps you just a little to make your final choice. Its a scary thought even if you are expecting it I know this its still a shock. Good luck there are lots of nice people here who will all help
helen54849 davey72
Posted
Hi,
Thanks Weeled hope you are well. Davey my neph started discussions with me at 20% and it went along the lines of do a bit of research into both types, come and visit the haemo unit and speak to the patients then make your decision. I was told that if one didn't suit I could try the other. I can't tell you a personal experience of haemo as I researched it, spoke to the patients and looked at the restrictions, plus the three times a week to hospital (I hate hospital and I hate people faffing with me) so I decided PD (perinoeal dialysis) was more suited to my life, I was still working full time and had small people to look after so it suited me to do it at night myself and there are less restrictions ie food and liquid. I started dialysis at 6% but as weeled has rightly said there is no set time as we are all different and it depends on the symptoms you are having or how well you feel. Please don't worry as they won't let anything happen to you, you can have an emergency line in your neck that is temp until your chosen method is ready. I would have a look into both and see what suits you and your life. I don't want to overload you with how it is for now, but if you want to know anymore about my experience on pd I would be happy to share if it helps you just a little to make your final choice. Its a scary thought even if you are expecting it I know this its still a shock. Good luck there are lots of nice people here who will all help
andymac61 helen54849
Posted
helen54849 andymac61
Posted
Hi,
What is your potassium level like as if this is raised it can give you palpitations I had those when mine was raised. It should be between 3-5 mine was 7 at one point but this was the norm for me at the time. Again regarding your breathlessness whay are your iron and HB levels HB sould be over 10. Both these things go hand in hand with our illness. At around 20% my iron went low and my HB hence I was like you and couldn't walk out of my front door without looking like I had been running. I was given iron tablets but told if they didn't work after three months they wouldn't work so as they didn't I had an iron infusion and some EPO (you can do this yourself at home its ok when you get used to it) this helped after about two weeks so its worth asking what your levels are. Some hospitals are happy to give your results some don't do it as a matter of course. Can you get set up on patient view you can see your own results then?. Regarding your potassium it involves changing your diet but please do not do this until you have discussed it with your team as if your levels are ok and you make your potassium too low its as bad as it being too high so get your levels checked and ask advice I had a dietician assigned to me so this was good. For your bladder issue try drinking just water for a day and see if that helps I would ask medical advice about that one though as I am not a doctor so best stick with the professionals on that one
andymac61 helen54849
Posted
Thank you Helen..... yes I am on " patient view " . My latest numbers were hb 13,( good as it plummeted to 7 after my prostatectomy 15 months ago) pott 5, have been on iron tablets but not EPO. Try to get as much exercise as o can. Oh and cholesterol very high ( I don't like taking statins as they give me really sore joint pain) silly I know! Read that only 50% of ckd patients reach dialysis owing to coronary heart disease, and I get very very worried about this stat. .....
helen54849 andymac61
Posted
Hi,
It is worrying I know what you are worried about and I know why we are all friends on here so get your worries out it helps deal with things and nothing is ever a daft question. HB is ok, potassium is just on the line of ok but just because the guidlines say 3-5 we all differ personally. i would just keep an eye on that and ensure it doesn't climb, when mine was high I had leap out of bed in the middle of the night leg cramps sounds funny but it wasn't. How long have you been on the tablets? EPO is usually taken with iron as it helps it work taken on its own it does not good. Its worth an ask about an infusion and they will say if it is right or not. Ha statins, I had my bloods done in a January it must have been 2016 as I was off my food all I had eaten for the whole month was brie and crackers, they wrote to me in April to tell me my cholesteral was high!!! as they had asked a GP to do the dead I asked for an up to date blood test and explained why it was high, they tried to make me take the maximum dose of statins (I later found out they were that dangerous they were banned) I told them to jog on knowing that statins can cause irriversable muscle damage so I am 100% with you and your reasons. They also tried to make me eat pilchards eeew my mum brought them and I burried them in my back garded and told her they were delicious (my bad). I suppose for that you can look at what you eat and rather than cut bad stuff out have it for treat days that way you are not craving it, everything in moderation right. Regarding the heart business, kidney failure can put a strain on your heart but it is not always the reason for the need of dialysis. When you get worked up for transplant (which will be shortly as it takes a while) you have a heart scan and an EGC, a chest xray and lots of other things so this should put your mind at rest a bit. Try not to worry the symptoms you have are the CKD progressing and I can tell you this as I have been there. Keep up with the excersize, even walking is good for you if you can't manage anything else. I can tell you it gets better at each step so just focus on that and try and enjoy things.
andymac61 helen54849
Posted
Thanks Helen, you sound really up beat and that's where we differ I'm afraid. I'm a " glass half empty" type unfortunately. Been my exercise bike twice today so feeling full of energy for a nice change haha.
helen54849 andymac61
Posted
Aw,
Don't beat yourself up for feeling down its natural. I have had to be the way I am due to other life events, my father passed away and he wasn't old so it fell on my to take his place, to fix everything for everyone and it is my job to protect them all. I just suck it up and carry on but that doesn't mean I don't have my moments they are just between me and me that all. You don't have to justify the way you feel to anyone it is valid to be scared, angry and think why me what did I do. i was lucky I dodn't have any symptoms apart from the tiredness and the nausea at the end and not being able to eat, my dialysis went without hitch, my issues were after transplant as they gave me too much anti rejection meds and poisoned me once I was transferred back to my own hospital they listen to me so things are improving, my bloods are up and down so I have had my was it worth it moments then I have to have a word with myself as I had a kidney from my friend she risked her own life to save mine so I can't be sorry for my self for long cos how lucky am I, amazing friends, beautiful children and a husband who is my rock and best friend. You are on a roller coaster I won't lie to you but it will all come good in the end and I wouldn't just tell you that I am very much tell it how it is, I have no filters and sometimes I am as surprised as everyone else by what comes out of my mouth. Just hang in there and you will see x
andymac61 helen54849
Posted
your words have helped me tonight Helen, I thank you so much for them. I too have a strong partner (wife I mean)who wants to be a donor for me but o have to be cancer free for five years before allowed to. I understand that tho and I'm ok with it. Wishing you continued good health....Andy
helen54849 andymac61
Posted
Hi,
So there you are what you have just told me suggests that although you think you are a half full chap you are actually very brave and you are not just fighting one fight. I actually think you are amazing person, its bad enough fighting the kidney thing, but to fight cancer too wow what a man, really. You have to hold on to that 5 year date and look forward to it being the begining of a new chapter, yes you may have the sub chapter of dialysis in the mean time but you have done well to stay at the stage you are for so long and long that may continue. You have overcome so much already so don't dismiss yourself as being weak as you don't sound it to me, you sound like a warrior. Your wife also sounds amazing. My husband would of been a match but one of our children is only young and to have two parents out of the picture would have been too much for him, and so my brave friend stepped in. At a later date if you want any more info on the doner work up for your wife message me and I would be happy to go through it, or of course the dialysis bit. It does help to decide whan you have spoken to the people who have done both. Good luck and never forget how strong your really are x
maureen93313 davey72
Posted
I am currently borderline Stage 4/5. My function fluctuates between 13 and 17 percent. At this stage I have spoken to dialysis team and had my arms scanned for a suitable vein for a fistula which doesn't appear to have any any suitable veins. I was told my only form of dialysis would be haemodialysis as I have a colostomy and PD is not an option. I think it varies from area to area at what stage you receive dialysis. Here it is 10% and under. If your function is still in upper part of stage 4 it will be some time before you need it.
gayle14m davey72
Posted
Hi davey. I'm stage 4 with gfr19 and just in discussion with my kidney doc. My hospital wait until your garden is 15 but it could be years. Hope you're feeling well .
gayle14m
Posted
LynQ davey72
Posted
Still haven't had that discussion with my consultant. I am late stage 4. However I am on Patient View and along with your blood results it gives a lot of information about the various kinds of dialysis. I am 74 so although I would prefer to do it myself, I am wondering whether the best thing would be to go for haemodyalisis as there is heavy fluid to lift and you need a special room to keep your medical supplies.. You start with that first so could get an idea of how it will be. At the moment I live quite near the hospital. However they are thinking of downgrading it and sending the renal department to a town 45 minutes away in whch case I would definitely go for home dialysis.
helen54849 LynQ
Posted
Hi Lyn,
Why don't you ask them in the unit if you can have a look at the bags and see if you can move them, they are usually 5 litre bags that way you will be able to see if you can manage, they will have bags there for training. I didn't have a special room for my supplies, I don't have any room in the house so the hospital bought me a new garden shed to keep the delivery in and then once a week I just brought 7 days supply of everyhthing into our bedroom and had a bit of a set up in there. If you do dialysis at home you also get a reduction on your council tax as you have a treatment room in your bedroom. If you really want to do it yourself look into it further I would be happy to share my experience if it helps you chose.
LynQ helen54849
Posted
Thanks, Helen. I will do that. I am just beginning to get my head round the idea of it all. It is a bit scary. I have been reasoably stable for a few years thogh my Hb is going steadily down despite iron, Vit B12 and folic acid. I have an appointment next Monday and will talk to them abot iron infusions and EPO. I have quite severe arthritis so can't lift things easily.
helen54849 LynQ
Posted
Hi,
Agreed it is scary, even when you are expecting it, when you hear the words its time it is still a shock even though you know. There are two different type of fluids the one they give out as standard and with those bags to open them there is like a tab on the end with a hole to hook your finger through and pull the tab off so you can get to the attatchment. Then there is like a little part in the pipe that you have to snap (like a glow stick) to get the fluid through, it has to be snapped fully or the machine will not run (it tells you why on the screen) or I was allergic to that fluid so I had a big bag with 3 compartments that you have to break all the big seals and mix the contents together. I couldn't do it my husband had to do it as I was in a car accident and have lost most of the use of my right arm. Rather than just looking at the bags I would ask if you could have a pretend go at setting up a machine, the process from start to finish so that you actually do it. That way you will be able to see if you are able to do this with your arthritis. At least you can say you have considered and tried all avenues.
My HB dropped, I had an iron infusion and EPO they will train you to do the EPO yourself and it is not too bad I did it in my stomach which was amusing as you have to pinch the fat except I don't have any, it stings a bit when it goes in but that goes straight away and then give it two weeks and you will be skipping round your house, you will feel much better. Please keep us updated on how you get on, I love reading about how others are getting along. x
yehyeh helen54849
Posted
hi helen,
my egfr also 19. currently i pee quite little during day time but a lot during night time. not sure why. are you the same?
but i do have some of symtoms. like bloated, neasea and also swollen.
my nephrologist said i am stable. but i think i am not so well. usually dialsysis start when? well, my creatinine now is 260.
urea 12.
i am ready for dialsysis. hope dialysis can make me feel well. i feel so unwell now. everyday just feel tired and feel like to vomit.
helen54849 yehyeh
Posted
Hi,
We have spoken about this a few times just have a check back on your posts the answers are all there about dialysis and swelling. They will be on your dialysis post.