I'm also a dialysis patient so I'm in the right community hopefully. Anyway just though I put that in.
You think dialysis is s piece of cake 🎂
Those that dint have it have no idea.
We all react differently 😡
How ignorant some people are even calling us lazy by health professionals 😵😡.
So much advice but they don't have the time experience and man you need experience to better send a mesas or teach. Otherwise how can you be teach what you've learnt without experience in some form ?!!
Actually, it's been a while since I've seen a post from you. Glad to hear you are alive and if not well, still fighting through the morass of life. I take it things have not gotten any better at your dialysis center? What have you done since you were last here writing about the issues with them?
I do try to understand how people currently on dialysis are feeling and going with their lives and it does seem to work with some and not with some others. I have noticed that some, but not all, that do in-center dialysis seem to have the most issues, while those that do home hemodialysis write less but when they do seem to be happier. I've not run across many on PD but those that I have are also happier when they are able to frequently dialyze? Since I'm not there yet all I've been able to do is research about it and try to determine which modality will be best for me. I count on hearing from those doing all forms of dialysis to share their experiences, especially for those of us who will have to make that decision at some future point.
Since I'm retired I am usually around here several times each day so post away, and I'll reply when I see you here again. I'm only in four communities and all of them relate in some way or another to CKD. Remember the great Scarlett O'Hara line... "Tomorrow is another day."
Long time no see. Nice if you to remember me. It's been a very tragic rollercoaster of emotional year !!
Had to come away to ill physically and emotionally.
To be honest I would love to do home dialysis but I don't think nubby bed could hack it but I don't trust anyone enough to help it even my bad enough children I mean we not talking about any old normal treatment kind i.e. diabetes injections or similar were talking about a massive machine that needs supervised and trained maintenance training to make sure big TWO NEEDLES are inserted into the artery correctly maintaining the right dosage with fluid bicarbonate and other substance during dialysis?! Keeping medical stock up to scratch And a few others I haven't thought of like blowing s fistula by mistake 😳 The pain and complications it can cause I had this a few times in the unit but with experience nurses on hand Wrong move blood could spurt everywhere if not trained enough could cause panic and wrong treatment
Unfortunately it scared the daylightscout of me If only it wasn't so complicated!! Some may find it a piece if cage and Adair ti it fine with confidence but with my nerves and paranoia and panic even with family I could find it a nightmare
Question is why can't dialysis nurses or district nurses on NHS provide this as it is such a lifesaving and important procedure for patients Again I think I can answer that - !Government Budget Cuts dint cover the salaries to allow this scene to materialise
I have seriously thought about it and still am but I don't have a reliable carer in the family they are too busy in their own lives and I sure as hell cant affirmed a carer cost me the earth
So I have to persevere with the unit even tho I hate it cos of my severe osteomalacia in my spine legs hips and shoulders and arm!! complications of bladder spasms and urges every ten minutes it's torture to have to stay in one place for three to four hours three times a week!! It's absolute agony and embarrassing taken breaks every half hour the longest I can wait what makes it worse the nurses don't seem to sympathise they seem to have that look that I'm a nuisance
So when I say I would love to have it at home I mean it but everything is against me unless I can be persuaded and convinced otherwise to safely do it myself prick an artery twice in just 12 week training which I sure as hell don't hinkbis enough as well as training to maintain and learn all about managing the machine to produce the right treatment!! 😱🙈😩
Any way that's my venting over I hope you are well in yourself you seem very confident I'm assume you been at this a long time I applaud your perseverance confidence and willingness to help others on here tovsdvice and relax them
I'm sure your going to give me some advice on how to try to overcome it I'm willing to listen but it's gonna take me along time to actually find the nerve and will power to overcome it!!
lilacpeace -- You have my respect for speaking out for yourself about your desire for greater contact here. I hope more people will contact you. I admit I didn't see your previous post, possibly because, as someone who has remained at stage 3b for more than 2 years, I have no firsthand knowledge of life with transplants or dialysis. I have learned a great deal about dialysis, but at 86.5years it is not likely that I could benefit from it if I needed it. Netflix played a large part in my life after my husband died three years ago. I still haven't checked out whether it is available here at the independent living facility I moved to a year and a half ago.
I live in a forest in North Central Florida. Where do you live? jaykay77
Well’ let me tell you I had to hit the follow button A few times. I also am home most of the time by my self. It does get lonely but you just have to keep going on. Are you Mobil able to walk with or without assistance. Do you live in a small town or a big city no matter what maybe you can get to a town activity or a church activity. I it’s something to look into. Oh about that Facebook thing I feel that doesn’t matter just read some of those things they are questionable because I dislike when your are not sure if it is fake news
But I do understand being alone all day it does stink. What stinks for me is that I am disabled
Just try not to get to still keep on moving. 🎃🎃🎃🎃😃
I'm so thankful for people like you that actually tell what they are going through I have not posted in a while. I just loss my sister this past week. I don't want to say what I have gone through the past three months cause it sounds like I would try to make my problems worse than your issues. Remember your issues are important to others but so many have the same issues and just afraid to admit how they are feeling. May you find some peace.
I’ve had my share of breakdowns and I can only say that you are not alone. “Stay strong”.. I’ve heard so many times. I guess what matters is that if you don’t have the support around you, you will have the support of all of us that is going through the same condition. I believe in the saying “you are not alone”....because... you’re not.
hi i know how you feel but in order to be ok you have to let yourself feel. it is not easy but like yourself and others around you will sure like you too. do not feel ignored we all care for we know what you are going through. BE STRONG AND WE WILL ENCOURAGE YOU TO PUSH ON HARDER
I haven't seen your previous posts I don't think, but firstly, you are not alone. People avoid us, especially when times are hard because they don't know what to say. Those who love us want to wave a magic wand. They want to make it go away but they can't. You are brave for speaking out here. We are the ones who understand. We know how you feel. When my kidneys failed 30 years ago I learned who my true friends were. I'm still on dialysis 27 years later. Transplants aren't an option after one horrific experience. Which country are you in? Do you have access to a counsellor?
Practical tips- are you mobile? Could you go for a short walk every day? Is there one person you could meet once a week for a cuppa? Not to talk about your health necessarily, bit to just chat, relax, smile. You say you lost your sister. I'm so sorry- that must be terrible and you need to allow yourself to grieve for her.
My success after 27 years of dialysis is this: find something to smile at. Find a hobby- I paint. Are you able to volunteer anywhere? Where you could meet people and feel valued. Treat dialysis as something you do so that you can have a life. And find something to enjoy. Please speak to a counsellor - you may need medical help to lift you from the dark place you are in right now. Love and respect to you- many people will read your post and recognise themselves in your words.
27 years? I’ve been on pd dialysis for 9 months now and I don’t know how I can keep this up It’s harder than I thought it would be not the dialysis itself but how I feel Tired all the time energy last about an hour. I worked 10 -12 hr days till last month had to stop working it became just to much the pain and fatigue became to much to bear. I’m hoping for a transplant 27 years wow
Yes. Tiredness is my enemy too, I have reduced my hours at work now because I have finally accepted I need to look after myself a bit more. But a long life on dialysis is very possible.
Hi o have also not seen your posts for a while more.
Life can be difficult when on dialysis.
I have just completed 6 weeks in the Detby Royal unit , 2 weeks of training in the home dialysis unit, now in second week of training at home, this morning on my one without my home nurse.
First week of needling myself without nurse looking ovrer my shoulder was nerve racking, a few problems but of my making. Actually going really well, I feel so good and confident with home heamo, why did I not do it sooner?
After Christmas I will look at nocturnal dialysis.
I 70 work full time and to those that do not know I on dialysis they would think I am “normal “,
So important to have a positive outlook, I dialyse 5 times each week for 3 hours using the nxstsge machine,
Can’t wait to have the new model in the new year with full telemetry with live data streamed quickly to my hospital unit.
I have a heamo nurse (who is so supportive) on call all the time and answers my call me back to help with any concerns I may have and will always come putte if I have a problem I cannot sort myself.
I cannot praise the Royal Derby Rensl unit enough, they have helped to to have a life that to the outside world in normal
It sounds like your do I g through a rough time at the moment and the world feels against you and you are feeling alone. We all get days like that when life just seems to be CKD morning noon and night. Night is the worst where you just can't sleep because your brain is whizzing with thoughts about the future.
Try and remain positive....god a hate that saying.......
You havent posted for a month and from your wall it looks like lots have offered support and advice even if it's just one person. I know it doesn't feel like it but we are here for you and even if we havent posted your will still be in our thoughts.
I've read before that you've had problems with the nurses taking to much fluid off you to fast which makes you feel terrible. Have you considered taking control and doing home HD so you have control of everything. It might help you feel better about the whole process and making dialysis fit with your life rather than you being dictated to by the unit. I know it's not always practical but maybe something to consider.
Take care of your self and do t give your self a hard time when your feeling down. Kidney disease is a rollercoaster of emotions and we all change from one day to the next
I'm sorry u feel alone. And I'm sorry u have been feeling ignored in life and on here. I pray all of this subsides and I hope things get better for u mentally, physically and emotionally. We are here for eachother, but remember we are all pretty much dealing with something. But I will try to do better... I don't like that u feel ignored. I been there done that. Take care.
hello!! I am fairly new to dialysis - I only started four weeks ago and I feel a bit lost and alone sometimes as a lot of people don't understand what we go through physically, mentally and emotionally.
I have been struggling with the nurses at my unit taking fluid and making me feel dreadfully poorly when I am certain that because I am still passing urine and I do not actually gain weight between dialysis sessions that they should not take any. I finally managed to get through to someone on tuesday and I have felt a bit better since.
Please do not feel ignored!! Please voice your concerns to your nurses, technicians and who ever else you deal with - they cannot fix it if they don't know its broken!! I stumbled across this site and its the best thing ive found with regards to help and support and often I don't even ask a question but the answer is there because someone else has asked it already. this makes me realise we are all in the same situation, but at different stages and we must rely on each other for help, advice and support.
I am here if you want to chat - any time day or night. You are NOT alone. Ever.
I come here sometimes but not as often as I been depressed lately and each time I reach out for help there's no one there even the professionals have ignored me for a year now to see a psychologist?!!
I too still urinate and my center bitches at me all the time for not gaining enough between treatments. I save room for food and drink just enough! I find they at centers are never happy! Especially the freaking dietician!! Dialysis sucks but fortunately we all have each other! Don't you guys love hearing, "you don't look sick" blah! Hate that so much, wanna scream, well I feel like shit! Ok, mini rant done, see? You're not the only one my dear!
Hi! First of all how old are you? Would it really make you happy if I knew how you felt? This means you are depending on others about you. Remember, you like myself have dialysis, dialysis does not have you! Get involved with your life, friends, family and personal goals. Dialysis is a second opportunity to continue living. Life is wonderful...stop for a moment and start enjoying it. Good luck. I was once like you, but I over came all of that.
I've been trying for a year to be involved etc but my condition restricts me from going out. So it difficult.
I hope to come out of it soon but I doubt it.
I'm 47 and married with four children and grandchildren and can't do anything with them.
I'm just a burden now cos I can't go anywhere due to bladder and spinal never be problems.
Sakinah111
Social media can be a blessing and a curse. I sometimes realise I'm spending far too much on it. And yes, dialysis is taking 4 days more or less out of the week, and actually sometimes part of other days, if I have to chase up the chemist, GP, other apointments/organisations that are needed in helping me get the best out of life.. Its EXHAUSTING..
After I died in 2005 ..(literally a 2 min cardiac arrest) I spent 10 weeks in hospital recovering, I had to learn to walk again, get dressed..
I set myself 2 fairly achievable goals.. Get out of the house every day.. Even if its a few mins down to the shop, or garden path (if you have one).
Do something you enjoy once a week.
These things are achievable, most of the time
Also depression (Low Mood, Feeling Down, Anxiety, or wanting to give up are not unusual with CKD) and getting help isn't as difficult. You can call KidneyCare UK .
The gloomy days of a british winter don't help either.
Sometimes its good to have someone neutral, NOT on FB, or who knows you but who understands to talk to. I had telephone counselling with them a few months ago, and it really did help.
Hide the friends that don't make positive remarks, do a 'Facebook Cull' it may be refreshing.
My close friends list is well under 20 on FB, and they are the people that will see most of my posts AND understand them. Those are the people I NEED in my life and who DO understand.
I also made some wonderful other disabled friends who didn't judge me via outsiders.org.uk
You have had some very sympathetic replies so I know I am going to be shot down in flames for this but I'm going to say it.
Negativity can prove more of a killer disease than your kidneys. People do not want to be around someone who is moaning and groaning and being 'oh poor me' all the time. The only person you hurt by feeling sorry for yourself is you. You will probably stop reading now.
I have been through it too, both kidneys removed, dialysis etc., all of this by myself as my family and partner have turned their backs on my disease which apparently is quite common for kidney sufferers. No matter how I feel inside I ALWAYS put a smile on my face, laugh joke and generally be good company and talk about anything but kidneys unless i am asked.
You will find that people will want to be with you and, if they are real friends, will ask about how things are going safe in the knowledge that you will not go on and on. Through adopting this attitude I have found new friends and rediacovered some I thought lost in the passage of time. Good luck, keep smiling and put on some lippy.
Sorry that you feel ignored! I have learned in a short time to accept my health condition and move on. As the interested party I do whatever is necessary to be in control of my kidney failure. PD dialysis is giving me another opportunity to live! Now, I am still dedicating good quality life for my family and myself. Life is short and beautiful. Make the most of it. You owe it to yourself!😄
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Why am I here?
Fistula
No "thrill"