new; daughter of mum with kidney troubles

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

new; daughter of mum with kidney troubles

Postby midnight_sun » Tue Apr 04, 2017 6:08 am

good evening everyone (or morning... night?... whichever it happens to be... currently 12:48AM here)

as my title to this post indicates, i am the daughter to someone who has been suffering a lot with kidney troubles and it has been stressing me (and her!! :cry: ) out to the moon and back! i could definitely use some help with some clarification from what i have read on here are some boundlessly intelligent people.

please forgive me for any medical terminology that i botch... i'm 31 and swear i have barely learned my own name some days of the week lately. so everything started back in i believe it was early 2015? possibly late 2014. somewhere around there when i was off at college, and got the news that mum was in late stage 4 kidney disease. my family deals with things in inappropriate jokes, so i remember we spoke that i was the one that would be donating a kidney when it came time because my three brothers were all married and had kids and i didn't, which made me the 'spare' child :wink: . regardless, i made plans after i finished college to begin testing, and mum worked with doctors to adjust her medications and get her blood pressure under control, and lo-and-behold, her kidneys got better! her levels got better she stabilised, so all was good! :D

so then jump ahead to the beginning of this year. i had to move back home because ironically i got sick. mum started noticing that her abdomen was getting bigger and she was gaining weight, despite the fact that she'd been diagnosed with GERD and was throwing up a lot as she couldn't keep barely anything down. very rapidly her stomach and abdomen started getting bigger and with a CT scan and x-rays they found that she had fluid build up all in her abdominal cavity- between 6-10 litres! they tested her for all cancers, which came back negative (woot! :o ). they had to drain the fluid, but it kept building up-- even going into her lungs making it hard to breath. they're thinking this has to do with her kidney disease, but are unsure. now she's starting to get weird, intense bruises on her legs and other places as the fluid keeps building up. :?

sorry that all drained out. i just really needed to get everything all out as it's really cathartic. has anyone here experienced the fluid build up and bruising and that? is that near the end stage of the kidney failure? she's had so much blood work and everything lately, but nothing has come back saying that her kidney levels were dangerously low. she's also gotten to the point right now where she wants to give up with going back and getting things looked at, which i almost can't blame her for. each time she goes she seems to come back with three more worse symptoms, and it's all getting worse, and i feel so helpless sitting here watching her get worse and worse and they have no idea why or how to stop it. she can't even go up to bed at night to sleep anymore because the fluid has gone into her lungs making it too difficult to breath, and though they can drain it it out, it builds back up after a couple of days. :cry:

ugh... alright... thanks everyone for listening. if anyone here has any sage advice, or experience, or... anything really. it would be great to hear from you.

thanks!

~*~ midnight sun ~*~
midnight_sun
 
Posts: 5
Joined: Tue Apr 04, 2017 5:32 am

Re: new; daughter of mum with kidney troubles

Postby wagolynn » Tue Apr 04, 2017 4:07 pm

Hi midnight_sun,

It looks as though mum is having a tough time just now, and as a daughter, it must be difficult to stand by, and watch.

Our bodies are complicated, and a malfunction in one area can affect so many other areas.

At this stage, i.e. without a clear diagnosis, I think, all that can be done is to encourage mum to keep going for the various tests, and treatments. Present as positive a face as you can manage for her.

The treatments, removing the water, should keep her alive while the tests are working towards a diagnosis.

Are you and mum in the UK?

Best wishes to you and mum.
wagolynn
 
Posts: 1147
Joined: Thu May 23, 2013 2:49 pm

Re: new; daughter of mum with kidney troubles

Postby midnight_sun » Tue Apr 04, 2017 6:28 pm

thank you for your words.

we're from canada, but my family comes from the uk so i've grown up saying 'mum' and am in love with ribena :wink: .

things *do* get tough to watch, especially not knowing what exactly is causing things. the doctors seem to have ruled everything out, and have fallen back on her kidney disease despite many of her levels having come back relatively normal. i went downstairs today to find her once again not having been able to go upstairs to bed last night and she slept in the chair awkwardly. her entire leg is red and swollen and fluid is building up. it's frustrating because i feel like i want to be the mum and lecture her to go to the doctor because she is stubborn (dare i say *almost* as stubborn as me :shock: ), and she just says that she'll wait 'until the next doctor appointment' regardless of how bad things are getting. she has one on thursday. yes it's just two days away, but it seems so long to watch a loved one suffer.

bodies suck. they're like some weird connect the dots where you don't have the numbers, and don't know what the picture is supposed to be like at the end... and half of my mum's dots are missing. :(

~*~ midnight sun ~*~
midnight_sun
 
Posts: 5
Joined: Tue Apr 04, 2017 5:32 am

Re: new; daughter of mum with kidney troubles

Postby chrisb » Wed Apr 05, 2017 7:12 am

I love your sense of humour, that should help keep Mum's spirits. By the way I live just down the road from where they make Ribena.

Just a thought but does your mum still pass water (urinate)?
chrisb
 
Posts: 273
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: new; daughter of mum with kidney troubles

Postby midnight_sun » Wed Apr 05, 2017 9:56 pm

things have taken such a dramatic and *(i want to use so many cuss words here)* turn for the worse...

it started yesterday when i was home alone with mum and she was acting strangely. she was really tired throughout the day, but she has been a lot lately... as she hadn't been feeling well. about halfway through the afternoon i heard her yell from downstairs, and i went down and she seemed confused and said she didn't know that i was home. i chalked it up to maybe she was dreaming? a little while later i went back down to check on her, and she was acting strangely again. i asked her what was wrong. she seemed very confused and had many inhalers on her lap and said she couldn't breath and asked for another inhaler. i said she needed to go to the hospital (we live 25 minutes away!). she said no, and i raced around the house trying to find another inhaler, finally found one, and gave it to her. again, she seemed very confused and was saying things that didn't make sense (didn't understand why nobody else was home... even though she knew my dad wouldn't be home until later).

i quickly called my dad and said he needed to hurry up and get home because mum was sick and she needed to get in to the hospital. he luckily was almost home and my brother was with him. it took 20 minutes to get her to the car as she could barely walk, breath or talk (dad was almost ready to call an ambulance, though we have none in our village, and that would have taken another half hour to get to us!... oi!). dad then zoomed off. dad called later in the evening to say that her O2 and sugars were bottomed out, and so they were keeping her there and were going to drain the fluid from her lungs (which had built back up), and give her nutrients and what not.

then this morning got the update that the fluid had already build back up in her lungs and they're not sure why, so they were going to keep her a bit longer and give her more fluids and that and fight off some infections.

...and then about fifteen minutes ago i got a hurried phone call from dad saying that not only had her lung collapsed, but also her kidneys have suddenly shut down. they've flown her (and dad) emergency into the city.

and now... we wait. :cry:

~*~ midnight sun ~*~
midnight_sun
 
Posts: 5
Joined: Tue Apr 04, 2017 5:32 am

Re: new; daughter of mum with kidney troubles

Postby Daisy4246 » Thu Apr 06, 2017 4:39 pm

Omg....l wish your mum well and bless you and your family. It really is a difficult time. Try to gain strength from each other.
Sending wishes from the UK.
Daisy4246
 
Posts: 44
Joined: Wed Oct 12, 2016 6:12 pm

Re: new; daughter of mum with kidney troubles

Postby wagolynn » Thu Apr 06, 2017 7:30 pm

Lets hope they get mum sorted out soon.

Best wishes to you all.
wagolynn
 
Posts: 1147
Joined: Thu May 23, 2013 2:49 pm

Re: new; daughter of mum with kidney troubles

Postby midnight_sun » Mon Apr 10, 2017 1:22 am

i wanted to give a very quick and brief update on my mum right now for anyone following this thread. she ended up getting sepsis and is currently on life support in the icu in the city. thank you for your kind words.

~*~ midnight sun ~*~
midnight_sun
 
Posts: 5
Joined: Tue Apr 04, 2017 5:32 am

Re: new; daughter of mum with kidney troubles

Postby wagolynn » Mon Apr 10, 2017 2:56 pm

That is bad but at least she is in the right place.

Best wishes.
wagolynn
 
Posts: 1147
Joined: Thu May 23, 2013 2:49 pm

Re: new; daughter of mum with kidney troubles

Postby midnight_sun » Mon May 22, 2017 7:55 pm

i thought i would come back here quickly to say for anyone who remembers me; my mum passed away peacefully yesterday afternoon. thank you to everyone for your kind words and i wish you all the best on your journeys!

~*~midnight sun~*~
midnight_sun
 
Posts: 5
Joined: Tue Apr 04, 2017 5:32 am

Re: new; daughter of mum with kidney troubles

Postby Dixie1 » Tue May 23, 2017 8:41 am

So sorry to read this Midnight Sun. Sounds like you and your family have been through an awful time. Your poor Mum. At least she is at peace now. Best wishes.
Dixie1
 
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: new; daughter of mum with kidney troubles

Postby wagolynn » Tue May 23, 2017 7:54 pm

Very sorry to hear that, best wishes to you and your family.
wagolynn
 
Posts: 1147
Joined: Thu May 23, 2013 2:49 pm

Re: new; daughter of mum with kidney troubles

Postby Daisy4246 » Tue May 23, 2017 8:04 pm

So sorry to hear this news. All the best to you all in this difficult time. She is no longer in pain and suffering. Take care.
Daisy4246
 
Posts: 44
Joined: Wed Oct 12, 2016 6:12 pm


Return to The KPG Forum

Who is online

Users browsing this forum: Google [Bot] and 17 guests

cron