severe ckd
Posted , 6 users are following.
just diagnosed with late stage kidney failure and looking at options
0 likes, 12 replies
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Notes on severe ckd
richard87134 vince52929
Posted
MrsO-UK_Surrey vince52929
Posted
So sorry to hear that, Vince, but stay positive as hopefully you are suitable for dialysis and many people do very well on it for years. When Helen sees your post, I'm sure she will be able to give you loads of advice and reassurance - she has been there and got the t- shirt. Lots of good luck wishes.
helen54849 vince52929
Posted
Hya,
As Mrs O kindly says I have been through the whole process and wether you are expecting it or not it comes as a huge shock either way. So you have the options of dialysis and providing you don't have any heath condition preventing transplant this is an option. It depends on what has caused your CKD, if its autoimmune sometimes its more difficult but not always impossible. My advice to you now is do your research about which type of dialysis will suit you and your lifestyle (its not like picking if you want chocolate or carrot cake sorry
) There are two types haemo (HD) or peritoneal (PD). I can only say that I went to the HD unit and spoke to patients who were kind enough to chat with me and I did research about it and as I don't like hospital or being faffed with decided that it wasn't for me. Personal choice. I did PD which you do at home over night yourself you are sleeping so once you get used to it, it doesn't interfere with your day to day life. I had a tenckhoff catheter fitted under general (a tube coming out of my stomach, an excellent party trick 
) then they let it heal for a couple of weeks then you start training, while you are training they arrange for delivery of the stock they deliver a months supply at a time which is kept in a spare room or garage. I didn't have a spare room or a garage with room in it so they bought me a shed (you ave kidney failure have a shed, every cloud and all that) I just bought a weeks worth in at a time so it was at the right temperature. Once you have had training and have had your delivery off you go, you have 24 hour on call nurses in case you need anything. You can get money off your council tax as you are doing treatment in your room and they provide a small payment towards electric, but the machine doesn't cost that much to run anyway. It took me about 4 weeks to start feeling a bit better, dialysis isn't intended to make you feel 100% but you will feel better. You may need an iron infusion and EPO but all this depends on your blood results also vit D among other things. I was on dialysis for just under two years and made myself do HIT training 3 times a week as I found it helped with getting the fluid off but we are all different. I had a live doner but you also have to go on the doner list, while on that I had one failed call after a year and that was it. I had my transplant last September and it hasn't been plain sailing for me meds and bloods wise what I can tell you is that I feel so much better the best I have in years so there is light at the end of the tunnel you have just got to get through this particularly crappy bit. All the above is a lot to take in, remember if you pick one type of dialysis and you don't like it you can change. I started it at 6% by the way. I am not a doctor nor am I medically trained however if you have any questions just ask, if I can answer them from my experience I will but what I won't do ever is guess or look up something online as it is not always accurate and can be dangerous so I may direct you to your team. It is a lot to get your head round but there are lots of lovely people on here who will support you all the way.
richard87134 helen54849
Posted
Hello Helen, apologies for kind of butting in,i have IGA Nephropathy and i'm currently in stage 3 but do have symptoms already. I have very high BP which is controlled along with a folate defiency and lower back pain. It would appear that the doctor cannot do anything until my GFR drops below 30, is this true?? It's very frustrating as i've felt unwell for years, regards, RichardC
helen54849 richard87134
Posted
Its ok butt in all you like, this is what this forum is for so we can help each other. You can have symptoms at stage 3 they range from tiredness, breathlessness, low vit D, low iron, low HB they all go hand in hand with our CKD. It depends what you mean by your doctor cant do anything until you get to 30%? dialysis wise then correct they don't look at this until at least 15%, but managing symtoms there is lots that can be done. If you have low iron I was put on iron tablets, my neph (who I have been with since age 13 and stage 2, im 39 now) told me if they dont work after 3 months they are not going to. Mine didn't so I had an iron infusion and EPO, that lasted for 18 months for me before I needed any more. I had low vit D which effects your parathyroid which makes you feel grotty like flu but without the cold vit d/calcium tablets helped this. I had high blood acid levels so was given bicarb for this which helped. So you see depending on what your bloods are and your situation there is loads that can be done to manage things to make your life a little better at this point. Are you on patient view or do you know any of your bloods. If you are not on patient view get on it, its brill and has lots of advice on there on what your levels should be etc. Hope this helps a little, don't believe everything you read on line and there are no magic potions to cure us. If you can get hold of your blood results for things like iron, HB, parathyroid, bicarb stuff like that we can see if there is anything you can ask your team for that may help. Obviously it is up to them at the end of the day but never any harm in asking. You have to be careful as if your levels are ok you can cause harm by changing stuff that is why it is best to listen to your team. I have never been told there was nothing to help me until 30% though I suppose it depends where you live and what the process is for your area.
richard87134 helen54849
Posted
I have my check up this weekend with a nephrologist so i dare say they will do bloods and a urine sample to see how things are, i've already developed heart disease which i also take medication for and i'm convinced the kidneys have caused it through the high BP which is now controlled. Many thanks for your advice and support.
helen54849 richard87134
Posted
caroline1547 vince52929
Posted
Hi Vince
I was in your position this time last year.
I haven't posted much on here as everyone has been so helpful on other posts.
Helen has been a valuable poster on here and I have taken her advice so many times.
I have been through the dialysis options but to be honest I seem to be stable (with the concoction of magic drugs) and I haven't got to that stage luckily.
I am at the point now where I am now on the deceased donor list but I have a compatible donor ready if needed.
If you ever need to talk..
We're all here.
Caroline
helen54849 caroline1547
Posted
I am so glad you are stable, that is brill news. I am a sucker for a nice story. I truely hope you get to swerve dialysis all together. Embrace the next stage in your journey I promise it only gets better from here on in
caroline1547 helen54849
Posted
Thank you Helen 😀
The staff at St George's have been truly amazing and I embrace every day that I have and always look forward to that next step in life 😀
vince52929 caroline1547
Posted
angelique79095 vince52929
Posted
I'm on peritoneal dialysis.. the first weeks are the hardest, with healing and all. But you will feel better and still have a sense of independence since you don't have to go to a center 3 days a week. If you are an active person and can train to do exchanges by yourself, then you can do PD. I have small veins and have had 2 clots in my neck so hemodialysis isn't an option for me. Once you master the manual exchanges you can start the cycles at night and have your days free. Your diet is also more flexible than HD. Good luck and I hope you find what works best for you