Mother has stage 4 ckd. She feels depressed and wants to give up
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She was diagnosed Wednesday. She has a lot of pain, she's very tired, and she jerks a lot and violently. She got in with a kidney Dr after 1 month and has to go back in 2 weeks. They have done nothing. Gave her water pills. No information and say they have no plans to start dialysis or anything for at least 2 years. Any advice on what she can do to ease symptoms? Should she try to find another Dr?
0 likes, 10 replies
helen54849 shauna03743
Posted
Hi,
I am so sorry that your Mum feels like this , if she is stage 4 her GFR (kidney function) will be between 15 & 30%, I suspect as they are saying she is no where near dialysis she is at the higher end of stage 4. They don't generally tend to even talk about dialsysis until a person is around 15% then it is not necessarily started depending on how the person feels. The body adjusts to GFR drops that is why she has probably felt well to this point. However she is now in the bit I called limbo, feeling very nasty but not at the stage anything can be done as yet. I felt ok up to later part of stage 4, I had the tiredness and breathlessness up to this point but nothing I couldn't deal with. At about 11% I was still working full time but in bed by 7.30pm each night and on waking feeling like I had never been to sleep, then came the aversion to food. I couldn't even have it anywhere near me, never mind put anything in my mouth then at 6% I started dialysis. It is important to remember that dialysis does not increase kidney function it just removes toxins from the body, as it is synthetic it can't tell the difference between good and bad so removes it all. It does make you feel better but not 100% but not like she feels now. I was on dialysis for two years while they tested my lovely friend and in September last year I had a transplant and I can't remember feeling this good (I have had CKD all my life) It is important to keep blood pressure under control at this point and avoid ibuprofen (paracetamol is the only real safe thing) avoid salt particulary low salt and do not change any part of her diet unless you are told to do so, lowering the likes of phosphate and potassium if they are within range is dangerous and will have the same effect as it being too high. The dr should referr Mum to a dietician if things need to change. I had one from about stage 3 she kept a check on my bloods and if need be she called me in and told me what I needed to do. If you feel your Mum has not had the support she deserves, try making an appointment with the dr but write a list of questions ask the questions and write down the answers. If I can help let me know, I am not by any means medically trained but I have been through the whole process and I am lucky to have really good drs etc. Please tell your Mum to hang on in there, I know how she feels, please make sure she knows that it won't last forever she just needs to hang on in there for this bit to be over. Its not nice but it does get better, please make sure she knows this. She will probably feel worse for a bit but I would concentrate on the fact that there is light on the horizon. x
shauna03743 helen54849
Posted
ron76088 helen54849
Posted
Just notified today of Stage 4. Each time I get on the internet it's more confusing. I see advice to eat this not that, and vice versa. It's bloomin confusing and frustrating. I have been a gym rat ever since I had a pre diagnosis a month ago and set out on a workout regimen. I've lost about 20 lbs and it feels good, but just the thoght of "stage 4" gets me down. It didn't help that the Dr. I had must have missed the class on Bedside Manners because she was cold as a block of ice. Anyway, I'm a fighter and will continue to plug on. Any advice as to who in the world knows what to eat and not to eat? Also, is there anyway under the sun to improve kidney function?
shauna03743 ron76088
Posted
As far as I a know there is no way to improve it. But you can slow it. They should have set you up with a dietitian.
From what I understand it should be tailored to you specifically because no everyone has the same levels or lack there of. My mother was given a list of foods she can and can't have.
Nothing with to much potassium or pospherus.
You should look up "renal failure cook up" or "renal failure recipes.."
Hope that helps.
My mom still has ups and downs emotionally. She goes for her fistula on the 22nd.
helen54849 ron76088
Posted
Hi,
What to eat and what not to eat depends entirely on your blood results and I wouldnt reccommond that you change any of your eating habits unless you are told to do so by a dr or dietician. Doing so is dangerous, for example if you lower your potassium intake and your bloods are within range lowering it too much can be as bad as it being too high you will put yourself in hospital, the same with phosphate too high and you will know you will itch from the inside and no amount of scratching gets rid of it, too low and you will put yourself in a coma. Potassium should be in the range of 3-5 (in the UK) and phosphate should be over .075 -1.25. Depending on the cause of your CKD it may be possible to slow it down but I would be suprised it can be reversed despite what you read on the internet (be careful as its not all helpful and again dangerous) there is no magic potion or the like if there was I wouldn't of needed a tx and a lot of people wouldn't be going through what they are. Keep your blood pressure right down, avoid salt and most importantly low salt, do not take the like of ibuprofen, paracetamol is safe and co codamol if need be not with paracetamol though. Avoid processed foods make fresh you know what is in it and try and ask what your blood results are. If you are in the UK you can register with patient view view ask your dr about it, its very useful and you can see your own blood results and it gives advice on what levels should be and what it can mean if they are too high or low. Ask to see a dietician they are qualified to provide advice for YOUR needs. Sadly some drs lack the correct manner they may well be very talented in their field. I have come across many and have felt the need to point out that they may do this every day and I may be just a number to them but I haven't been through it and I am scared and while they may never remember me I will remember them and how they have treated me forever and they will shape my opinion for the furture you would be surprised by the change if you nicely point in out. Can I just say also very well done on youre weight loss excellent work do carry on. As scary as it is try not to be scared, I can say this to you as I have been through all the stages plus dialsysis plus transplant and I am still here doing what I do loving life, always have always will. Good lucj and keep up the good work in the gym this will only help you
sonia68053 shauna03743
Posted
How amazing is Helen. Still here to support people even after she, herself, is through the worst of it.
As people get older, all sorts of things start to go wrong. It is possible that your mother's sufferings are related to things other than kidneys. I am being seen by 5 different Consultants for various things and each one only looks at one aspect of my health.
Perhaps it would be worthwhile asking for a "double"time appointment with your GP where you can go with her with your list of questions. Even though many problems that may come with age cannot be cured, it helps, emotionally, if you can give it a label and at least kinow why you feel so bad. Perhaps it is because you kniow someone now believes you and/or it dispels the fear factor. Perhaps because you can look for ways of improving the situation with things like diet or vitamins or anything else.
shauna03743 sonia68053
Posted
Yes. I agree about Helen. She's a great person.
I try to keep her positive. Hopeing once she gets over this bump and sees some improvement she will feel better. She goes to a surgeon about a getting fistula soon. She is worried her veins have blown out and scarred up too much to get one. She expects the worst in every situation.
mary189 shauna03743
Posted
was diagnosed with end stage CKD in 2007, no previous kidney problems. Unsually after 12 moths of dialysis my CKD improved and I have been high stage 4 since. I too often feel very down, as so life isnt really worth living , i suffer from severe muscle cramps and muscle jerks. But life goes on, your Mom needs time to accept and readjust to her health problems, its very early days. She may fine it helpful to join a local group for kindney patients or there are several on line associations for kidney patients giving lots of advice and support.
Suggest to your Mom that she visits her GP who may be able to help with her depression, also she at her next appontment, go with her, make a note of questions you both want answered and ask for appointment with a specalist renal nurse, they will have more time to explain things and answer your Moms questions. She should also havean appointment with a dietitian, you may be surprised at what you should not eat or drink if you have CKD.
Please tell your Mom its not theend of the world, what she if feeling is a normal reaction, when i was told i had CKD i even started to plan my funneral, wrote letters to my 2 boys and husband, but Im still here, still working 12 hours shifts as in a busy emergency healthcare setting and Im also now 6 yrs clear of breast cancer.
Being told you have a serious life threatening illness has untold effect on your mind thinking and your Mom needs time reassurance and support from her loved ones and from all of her medical team, be it GP, or hospital based staff.
I send your Mom my love and understading and hope that she is able to accept this big event in her life and live life to the full xxx
kathyt68777 shauna03743
Posted
My mother was in stage 4 for years. We had to go to her HMOs kidney failure class, discussed dialysis "when the time comes" with her doctor. She never went to stage 5, her numbers just hovered in stage 4 for over a decade with no symptoms.
shauna03743 kathyt68777
Posted