Stage Four almost

[Ccrowlu]

In my last post I mentioned my mom was diagnosed with stage three kidney failure. Today she’s been seen by a new specialist since we recently moved again. We all expected bad news and while the news wasn’t as bad as we thought it’s still pretty bad.

For more info about her diagnosis before I go into what we found out today I want to say we could’ve caught and had a fighting chance to fix the issues a year ago when we were in Denver Colorado for my brothers accident rehab. She had tingling/numb fingers and her foot even went numb for a short while. So I made her go to the er and when her blood results came in I’d noticed her creatinine levels were low. I looked it up on web md and found that her levels were indicative of stage one. If anyone knows anything about kidney failure you’d know it’s almost impossible to catch it at stage one cause that’s only tested if a bigger issue arises or you’re in the er. At least here in America anyways. When I asked her doctor for the visit about it he said they were paying any mind to it because it has nothing to do with them. Idk why he’d say that but I was stupid and decided to just shrug it off. Fast forward four or five months she had a diverticulitis flare up and ended up in the hospital. This time around I wasn’t aware she even went until the next day cause no one bothered to tell me everyone was leaving to bring her. If I’d known I’d have gone with and demanded a print out of her blood results. It got looked over that she was probably stage three at that point as well. I have no clue how or why but it did. And two months later she goes to the same hospital but in the clinic won’t complaining if kidney pain and we found out she was in kidney failure. We go to the specialist and it’s stage three. We did all the dietary changes we were told to do and I take care of her on her bad days. Me and her never got along well and we constantly but head about everything and throughout my childhood she’s always been somewhat neglectful of me because she had to focus on my brother who was always causing trouble. But I will never ever be able to watch her struggle and be in pain. Even if it causes me pain with my chronic pain I do what I have to go help her.

Now to the news we received today. We were expecting to hear she was officially stage four because she’s been getting significantly worse. She isn’t. Yet. The doctor actually told her to start living her days like they’re her last and to do everything she’s wanted to do because she’s on the brink of stage four. She also is sending my mom to a respiratory doctor because she’s highly suspicious my mom has sleep apnea which can be really bad with failing kidneys I guess.

I’ve been wanting to talk about this all day since I found out but haven’t been able to because everyone’s been busy but then I remembered I always have you guys. Even if I don’t have RA and it was only a misdiagnosis you are and have been for a few years now my biggest supporters and I can always talk to you all about this stuff. I’m just afraid I’m going to lose my mother and she’s never going to see the only daughter she raised have a happy life. She’s never gonna meet her adopted grand babies and if I one day find the special someone she’ll not be around to see it. Even if we have our differences and I am constantly mad at her for a lot of things she’s still my mother and I always saw her seeing me finally be happy for once. I don’t want to loose her

[sylvi]

Off course you don't want to lose her darling. As you have said we are always here for you and even if you said you had a misdiagnosis we are always will be here. I am sorry she is not doing very well at least you can all make your peace with her and do things together. Bless you darling.xxxx

[RosieA]

I think sylvi has said it all. Our collective thoughts are with you during this difficult time and remember we are always here. x

[Eiram50]

Really sorry to hear how difficult things are for both you, and your mother.

What a dreadful, frightening position to be in.

Do you have anyone, friend or professional, you can seek some emotional support from? I can’t imagine how hard it must be to go through things alone.

My heart breaks hearing you , understandably, reflect on your relationship with your mum and grieve for the times you wanted to share , should’ve been able to share with her.

Use this time to make it count, and perhaps say what you need to say to her and find that relationship you needed so that you both find peace with each other.

You’re not alone, we are here for you x

[helixhelix]

That is sad news, and you are young to have to deal with it. But as others have said use this time to create good memories for you and your mum.

No-one can say how much time she has left, but try to help make it last as long as possible and as happily as possible. And perhaps the doctors will say she is eligible for further treatment.

No doubt you’ve been consulting doctor google, but this site seemed quite sensible

nephcure.org/2019/07/sympto...

[medway-lady]

What ? if I reading this right your mum has been dismissed to die. I've been stage 5 to now 4 for the past 18 months. It's not a death sentence. It is possible and I do live a fairly normal life. I'm in the UK under one of the largest Renal Hospitals and no where near dying. What about dialysis or transplants ? There are drugs to help and diet too. I'm a bit upset that you're so certain its all over for your mum.

I don't know why the Consultant said what he did; and there may be other factors but you really must not go by internet information stage 1 to 3 is good and function goes up and down normally. Kidney failure is usually painless the symptoms you describe don't sound like just kidney related. So please ask what treatment is she going to get.

In fact I'm sorry to say this but this post is making me angry, hope should never be taken away and your mum could go on for many years at stage 4, CKD on its own is not a terminal condition unless its down to a particular disease but even then chemotherapy could be offered rather than saying go away.

[Ccrowlu in reply to medway-lady]

I wasn’t allowed to be in with her for this appointment so I’ve relayed what she told me was said. My mom doesn’t think to ask about that kind of stuff and I’m also vaguely able to understand the medical talk so I normally go with to make sure we know as much as possible. They do think other things are wrong on top of her kidney failure and diverticulitis as well as a hiatal hernia but she already had a weak immune system before the kidney failure and now it’s even weaker because of it so she only goes to appointments and stuff if it’s absolutely necessary to avoid getting covid-19. I keep telling her that her making sure she’s still ok is more important then worrying about a disease she might not even get. Plus the hospital is doing a great job at making sure only patients stay in the building which (while frustrating for me) is actually really good. Thank you for your info I’ll make sure to make my mom ask next time she’s in. Your comment gives me hope. 🙏🙏

[medway-lady in reply to Ccrowlu]

It sounds to me and I'm not being rude that she may well have misunderstood. I'd urge you to look up the American (I'm assuming your in America) Kidney Patients Association. The British one is as good and contains information about dialysis etc too. It has loads of information and as for Covid yes it threatens all of us, but its the same here and she'd need to be seen regularly anyway to check on her eGFR but I stress kidney function decreases with everyones age and is dependant on many factors. She needs to drink plenty, avoid UTI's and please do not think this was a death sentence. It simply isn't, She'd surely have been given some notes to read about kidney failure including advice about diet as saying go home and enjoy yourself until you die is just bizarre although it is a good sympathy card. High dose steroids can be given and a biopsy would be carried out to assess the cause of the problem. Here you'd be admitted to hospital for a one off dialysis session if needed, so I think you need to find out what her score actually is. End stage is 5, but it's not even then a death sentence unless someone refuses the treatment obviously dialysis or transplant.

Please do not just accept this information and find out more because kidney disease is a term when due to time, failure goes from acute to chronic it has nothing to do with a particular condition. Thus for instance if by abuse say with drink a person damages their kidneys after six months the injury (an AKI) becomes chronic so CKD.

In my case a one off instance event, caused an AKI I was given high dose steroids it was stage 5 at 8% and a biopsy. The advice about diet and I spent 2 weeks in hospital. Eventually discharged I saw the Renal Consultant weekly then every two weeks etc for months for monitoring. I'm now at 24% am absolutely fine and life is relatively normal. I can expect to continue like this for many years and see my grandaughter grow up, so take heart your mum needs to get advice and not give up yet anyway. You have my sympathy but really need to find out a lot more. Has she had a CT scan ? as diagnosing kidney failure on a blood test alone really doesn't make sense.

[Ccrowlu in reply to medway-lady]

Thank you I will look more into it ❤️ she is in chronic kidney failure though it’s been more then six months since her actual diagnosis and the levels showed for longer then that too

[Ccrowlu in reply to medway-lady]

Yes she has had a ct scan and two ultrasounds as well. Both confirmed her diagnosis

[medway-lady in reply to Ccrowlu]

Then please find out has she kidney damage ?and when will she have a biopsy? It is important to find out cause and I feel very sorry that you're in such a difficult situation worried but without proper information. I'm glad she has had a CT scan to look for obvious causes like kidney stones and cysts so hopefully she'll get a biopsy too.

[springcross]

I'm really sorry to hear about your mum Ccrowlu. What a nightmare situation you are in. I can only wish you and your mum strength to cope with the situation. Medway-lady's post is very informative and spoken with experience and may be worth looking into. Good luck and strength to you both. x

[Fruitandnutcase]

What a sad story. There’s nothing worse than feeling you have missed chances to deal with a medical problem.

It must be very difficult not to be in possession of all the facts. Medway-Lady’s posts are really inspiring so I hope you can follow up on some of her suggestions.