Hi all,
I was having a chilled morning(rare day off), dropped the wife off to work and kids to school. Watching Netflix with the dog ..... and then the call finally came ... my dialsys will start this Wednesday evening. I knew it was coming but the reality has kicked in.
My fistula has been ready for 18 months.
Any advice please?
Hi Carl 11
I know it's a big thing, dialysis. But you'll be fine. Having a fistula already makes things easier.
It may take a while to adjust; dialysis will probably make you feel tired initially. You might feel dizzy and washed out. All this will improve.
My advice : learn about dialysis. Learn about your bloods and be in control. Speak to nurses, doctors and patients. We, after all, have been there.
Try to keep working. It helps you to feel 'normal'. See friends. Have fun. Have a life! That's why you are dialysing after all.
Stick to the diet. The occasional cheat won't kill you... but being reckless might.
Don't put your life on hold waiting for a transplant. Trust me on this one.
And finally: dialysis isn't a life sentence. I've been on the machine for 26 years. I work, I have friends, family, fun. Go on holiday. Do things. Be positive. A positive attitude will get you through a blown fistula, a bad dialysis.
You can do this. Dialysis patients are the strongest people I know. Dialyse to have a life. Don't live just to have dialysis. It's keeping you alive, so make the most of it.
Good luck. Let me know how you get on.
Nikki.
That is good advice from Nikki. Learn as much as you can about the process and your bloods and progressively take some control over your treatment.
You may be encouraged to involve yourself in Self Care, where you are trained to set up your machine and if you wish , to self needle.
Home Hemodialysis may also be an option and then you can decide when to dialise and increase the frequency if it makes you feel better.
I would say good luck but you will be fine.
Chris
Thank you .... I have to admit, I don't tend not to read too many internet stories, as there are so many different situations for each individual. However, yesterday was not as bad as I imagined. Granted, I has the baby needles LOL and only 90mins.
Now I know that this is now part of my routine, I will be able to adjust.
The nurse has told me it will take 3 months to feel the benefits .....
The team at the new Peterborough unit were very calming.
Thanks Nikki
Great advice Nikki, I hope I can be as possitive as you when I get that phone call, my kidneys are down to 11 now so I dont think I have to long now. I must say it is scary and I do worry about dying all the time. I have heard if you take flaxseed oil, and use apple cider vinegar you can improve your kidney function. I would try anything if I thought it would delay dialysis. Also do you go abroad. Ant advice you can give me would be really appreciated. Thanks
Hi golden boy
In all honesty, I have never tried any flaxseed or apple cider vinegar. I have no idea whether the claims are true. I've always been suspicious of things that apparently cure kidney disease. But try it if you want to... My disease destroyed my glomerulI (filters). I doubt anything could have prevented that.
Re going abroad - yes, do it! I've been to Tenerife, Barcelona, Majorca, Minorca, Rhodes, Cyprus, Miami and Orlando. There is, or was ( maybe Brexit has changed things) a reciprocal agreement across much of Europe so dialysis is free. This does not apply everywhere eg Ibiza. I would recommend most of the above. We are advised to avoid places like Egypt, India etc. There are companies which can organise holidays etc. but they charge. I've always arranged things myself. There is usually a designated nurse at your unit who can arrange all necessary blood tests . One word of advice -ALWAYS book your dialysis before booking your holiday! Also, it's actually easier to find dialysis availability abroad than here in England. I have found dialysis to be extremely good in the majority of places.
Nikki x
Hello Carl
All I can say is you'll be OK. The staff will know you are nervous and be prepared to help you through out your time on dialysis. Ask all the questions you can think of.
All the best
Kibibi
If your needling a fistula, it may or may not be painful.
CARE for your fistula.. Please DO read this:
esrdncc.org/ffcl/for-ffcl-p...
nhs.uk/Conditions/Dialysis/...
Fistula Fanatic:
Facebook page for better fistula care:
facebook.com/purplechick820...
I learned to needle myself when I was 10.. Pretty scary, but better than the nurses hitting a nerve.. You will find some nurses seem to have a better skill than others.
Also ALWAYS let the nurses know if you start feeling dizzy, suddenly feel hot or flushed, start yawning, sneezing all can be a sign of you 'going low' or getting low BP.. They should be checking your blood pressure regularly.
IT can get boring after a while. My survival kit.. iPad/mp3 player, good headphones, downloads from NetFlix/iPlayer, and good supply of music and decent headphones
I used to have a subscription magazines and a portable CD player (yep goes back that far) plus a laptop to study on, and a good book when I was younger.
Something to eat and a bottle of water. Also any phosphate binders you normally take.. They will probably NOT have these in the unit. Also if on BP tablets TELL the staff.. You may need to take them at a different time.
If you do eat, try to do it in the first half of dialysis.. That way you won't be eating when at a 'dryer weight'.. Some patients react to eating on the machine as the blood goes to their digestive system and they get faint.
LEARN about your dialysis, how fast they set the pump, what size dialyser (artificial kidney they use), etc etc. This helps you explain things to your consultant and the staff.. Sometimes your dialysis needs tweaking to adjust to your needs.
kidneypatientguide.org.uk/H...
Good Luck
J
Thanks JMan,
The though of needling myself at this early stage is quite daunting.
I know I need to learn as much as possible, and in time, I will.
I haven't been given a diet plan as off yet, which is a good thing I think?
However, I will need to take a survival kit for the duration.
You'll probably see a dietitian once you start, if you have remaining kidney function it may not be so restricted
All the above is great advice. I can only add, register with Renal Patient View so that you can keep a check on your monthly blood results. I like to digest these before my Neph comes to talk to be about them
I'm only just getting ready for dialysis.my function has nw gone down to 12%. and I'm bricking it. so undecided on what to do.
good luck with everything. hope you find it easy enough too. 
I know how you feel Laura mine is down to 11, and I am really scared. I jus want to live a happy normal as can be life. I wish you luck, I am sure all will go well. x
I know the thought of a normal life now sounds amazing. We always new it was coming, and new the time wasn't far away but you never realise how quick it does come.
You take for granted all the normal mornings you wake up and do your day to day activities , go to bed and smile knowing you have had a good day.
For now all to be on your mine is what is coming up. I'm scared to high heaven of dying!! Where as before it never bothered me as I never thought it could be whilst I'm young. Just can't shake the feeling off.
Have you decided what you are having? PD or HEMO xx
You won't die. Dialysis is efficient. The renal team in our country are exceptional. I'm living proof after 26 years. Please try to think positively xxx
Where are you located I dont have a team local to where I live. My nearest renal team are nearly an hour away. x
My nearest unit is in Nottingham, about 45 minutes away. There is a closer hospital but they don't have renal facilities. Where are you?
I know I cant shake that feeling off either, I have tried so hard but I just cant stop thinking about it. I haven't made up my mind yet but I think I am going to go for home treatment. I live in Cheshunt and the nearest hospitall doing Dialysis about 45 minutes to an hour away. And I was told if its done at the hospital it would be 3 times a week but that most patients end up beinf their most of the day. I just feel It would be too much being in hospital half the week. How about you, have you decided and where are you located x
I'm in Nottinghamshire my nearest hospital is 15/20 mins away so not bad just don't fancy the hospital lol. Don't think it would be as daunting doing it at home where your mumote familiar. I'm thinking PD! ..... I think 🤔 Mmmm I dunno shall see.
Be nice to have a set of new kidneys from Santa next Christmas wouldn't it x
Don't be scared. You will do this. And you will live your life. Yes, dialysis is a pain in the ****. But it's there to give you a quality of life when you aren't on the machine.
Thank you xxxx
The process is very simple. I was advised to follow the regime of diet and fluid intake for me was 500 ml per day. The staff would explain the process to you during the treatment. Best of luck
500ml fluid in take is an other thing that puts me off! I don't eat a lot but drink like a fish. Forever thirsty. So that sounds impossible 🤔
My unit usually says up to 1 litre a day. If you are thirsty, look at your salt intake as it's one of the main culprits. You will probably find that over time you will pass little or maybe no urine at all. Having lots of fluid to remove can make you unwell, whether on PD or HD. If pd, you'll need to use strong bags which are high in sugar and you may gain lots of flesh weight. On HD it can cause cramps and dizziness. And you will feel unwell and short of breath. Controlling your fluid intake is one of the hardest aspects of being a kidney patient I'm afraid. We all struggle with it at times.
Noooooooooo 🙈 I'd rather be told I can't eat again. Then be told only a ltr per day.
I am forever thirsty. I really need to be put on a strict diet too. As been told which foods I should be avoiding is ok but not really doing the trick. Would love to loose weight too. And I think a strict diet would help me do that xx
I know what you mean about fluid. For me it was the hardest thing.
For pd patients, the diet isn't quite so strict because toxins are being removed frequently. Once you are on dialysis, the general rules are: avoid salt and processed foods which contain it.
Dairy products are limited. Milk is high in phosphate and potassium so only 1/3 pint daily.
Salt is your enemy because it makes you thirsty and also encourages fluid retention.
Potassium is the scary one- fruit, veg, chocolate, coffee, all high. Plus others.
The diet isn't designed to help you lose weight as such, for example, cream cakes are fine! (Unless you're diabetic). I went to Slimming World to lose a few lbs.
A renal diet isn't specific to everyone -some people pass urine still. Some need to eat potassium foods. If you want advice on reducing salt I'll help you. Thirst is awful. X
Thank you. My phosphate is high. That's 1.9. Trying to bring that down with turbo phosphate binder tablets. There huge 🤢
I just need someone to tell me that I need to stick to a strict diet for a month or 2 just so I can loose the weight. If I was to loose it i would keep it off. Plus having a huge battle with my bp, although I'm on several tablets for it. It doesn't seem to stay at a normal range for long. But makes me feel terrible.
MILK is my BIGGEST downfall, and only in the evening too. Doesn't bother me throughout the day just night time and middle of the night. My dietician has told me to cut it down and I have by maybe 8 pints. But can still neck 2 in 1 sitting. Just so nice 😔
What does potassium do and how does it affect the kidneys?
Sounds really silly but my bones have started to hurt over the last couple of months. Is it to do with anything do you think. Especially my left knee. Xx
You sound so like me! I love milk, but after years and years, I've finally stopped having it by the glass full. I avoid cereals just because of how much milk I like! At 1.9, your phosphate is at the top end of the acceptable range. Also cheese, eggs, yoghurt, white fish and cola are high in phosphate.
When you start dialysis, your blood pressure may drop on dialysis days so you might not need tablets on those days. I've always been a bit of an anomaly there as mine is always too low. That too, makes me feel terrible.
Are your calcium levels ok? After a long period of time, joints and bones can be affected by poor calcium/phosphate control, although it's unlikely this early in your condition. A high urea will also make you feel grotty.
Potassium. This is the dangerous one. While you still have function it's unlikely to be an issue. Once you have little or no urine output and are dialysing regularly, your body may not be able to get rid of potassium as your kidneys will no longer be filtering it out of your blood. It's dangerous because too much will lead to heart failure. It's often symptomless too, although some people, myself included, feel wobbly and tingly. Safe levels are around 3.5-5.3. Too low is equally as fatal. Milk is high in potassium, so I really can't stress enough that you really should try and reduce it. I know 1/3 of a pint isn't much at all... use a smaller glass maybe?
My downfall is coffee. But as I dialyse so much now, I can have one a day without my potassium going high.
These are all things you shouldn't have to worry about until you start dialysis really, and PD is a little less strict, although fluid is still restricted. It's a lot to take in to begin with, but you will get the hang of it. x
Wow. That's all good to know.
My urea is 20.4
Phosphate 1.90
Cal 2.21
Creatinine is 408.... what is this 🙈 What does it do? My skin too is so itchy but there putting that down to my high phosphorous levels. I will need to find another drink most definitely. Core that's not a nice thought xxx
Your urea is high. Your calcium is just within the safe levels. Limit is 2.2 -2.6. Creatinine is the best indicator of renal function. Above 300 shows yours are, as you know, not working fully. Creatinine is the breakdown of muscle and also if you eat a lot of red meat, will be higher. Itching will be due to phosphate. All these could be making you feel ache and a little under the weather. X
Thank you. I've understood more, from you than I have the doctors and the nurse. 😂 Thank you very much. Nice to be able to understand it finally. Xxx
Anytime. Just ask anything else you want to. I'll help if I can x
Your a diamond. Thank you xxx
May be your case would be different but all the patients at my unit are on 500 ml restrictions and 8/10 often get cramps after the process or during the process so a number of them have been prescribed medication to minimise the cramps and I always found that the following day, I just needed to boost my energy levels to be prepared for the next dialysis slot but over the time I got used to the routine
Is this reguarding HD 🙂
HI, sorry not been on far a while!
HD started at the beginning of Feb, fistula bumped after the 5th session and had to have it ballon'd. Now back on after a two week break.
Q: I work full time and will carry on unless I'm in not state to work .... but am entitled to any help ... preparing for the day things aren't going so well .....?
Feeling helpless
Bad dialysis day