The past 24 hours have been a bit of a whirlwind.DN came to take hubby's bloods yesterday am, a follow up to last week's bloods, all pretty straightforward. Hubby was meant to go to GP in pm to discuss ascites-swollen belly, and possible fluid on the lungs as he's wheezing badly, but he refused.
About 5pm GP called to discuss situation and promised home visit today.
Normal uneventful evening until the on call GP in the area rang, hubby's blood results back, potassium level unusually high and hospital admission essential. Hubby said no. GP came to visit, explained everything, said untreated hyperkaelimia could result in heart attack and death, even overnight. Hubby still says no to hospital or any further intervention.
So he slept on the bed settee, I sat in a chair, dozing occasionally, and he's still here this morning.
Such a bizarre experience. I'm now worried that I'll go for a shower and come back to find him gone.
Has anyone got any info on high potassium levels? Apparently it's meant to be between 3.0 and 5.0, his was 6.8
Thanks in advance
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MrsWorried
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I can’t talk about the clinical advice as I’m not a doctor. What I would say is that when GPs do home visits and advise a hospital admission….I’d listen. Try to get him to go to hospital. They will be able to better assess and treat him. The chances are he’ll only be in a couple of days at most…even if it is longer he’d be in a better place than sleeping on the sofa with you next to him worried sick.
Hubby feels he's had enough hospitals, needles, drips, etc. His quality of life is poor. What's he got to live for? GP was very blunt, but kind, and decided hubby had capacity so he couldn't force him to go anywhere.
And I believe our local community hospital and hospice ( share same building) is closed to admissions after outbreak of Covid.
I’d take up the offer for help from the BLT helpline. You can talk through with them the options. It’s really difficult when someone doesn’t want to follow what a doctor advises. If at all possible try to get him to go, let them stabilise his condition, then talk through his ongoing care plan. It may be possible to get a home package set up which will help him and you. Him practically; you so that you feel assured that things like pain are being managed. There are lots of options.
I did call, excellent advice and support, waiting for visit from GP and will discuss ongoing care. Unlikely hubby will change his mind, he's the most stubborn individual I've met!
It's a blooming shame that you are fighting the good fight and pushing for him to have every opportunity to get well and he's continued on his path of self-destruction. I have no idea how you ladies cope ........... if my hubbies doctor told him to dance on the hospital roof for a chance to get well he would do so!!
You look after yourself, he's making his choices so you have to look after you.
Thanks Katie, I'm not entirely sure I'm coping, just doing what seems right, minute by minute.The sad fact is that hubby still doesn't want to (or HE and brain injury is preventing him from) accepting that his lifestyle choices have led him to this position. He wants a magic wand to give him his old life back where he was strong, working hard, playing hard and drinking without it causing any effects.....
All I hope for is that he doesn't suffer unduly and he doesn't have a horrible bleed out.
It certainly puts alot of other things into perspective.
As someone who was on a self destruct course I’d say it’s about on par. Sadly, alcohol is a destructive, pernicious and legal substance that not only alters the mind it also alters the personality with it. It wasn’t until I nearly died that I realised that if I continued on my course I’d not make it to the 18th hole let alone to the club house! Nothing anyone can say or do will alter the destination until the individual decides to. It’s a nightmare for everyone observing. It’s so important that partners/family and friends get help as well. It’s as important as the clinical care of the patient.
Thank you for being so honest. You describe it perfectly. GP has decided to reduce hubby's meds to bare minimum, no more intervention eg blood tests, no 999 calls, no drains, just local palliative care. Investigating what care can be provided at home. Who knows how long?
Surreal situation. To anyone else in the same boat, I'm sending a virtual hug xx
Hi I understand how your husband is fed up with interventions. But his potassium is too high and the GP is right he needs hospital treatment. This happened more than once to mine and his levels hit even higher. He was treated and the levels dropped. I would if you can try and convince him to go in as it won't be for weeks and every day is worth living. Good luck
Thank you but I'm afraid his mind is made up. Decision made for palliative care from now on, minimal meds, no interventions eg blood tests. No 999 and no hospital. He wants to die at home and I'm now needing to enquire about nursing at home. In actual fact I think he's relieved the medics have accepted he's had enough.
I can understand that. My hubby had liver disease for two years and was about to be potentially told he needed a transplant which he didn't want to go through but then the decisions were taken away as on Dec 3 2022 he was diagnosed with extensive secondary cancer and the primary wasn't the liver. He fought hard and lasted 11 weeks. It's a year nearly since I lost him. The lack if quality of life was what he said he didn't want and only treatment to enhance it not prolong it but have no quality was his wish. He didn't have the chance to choose as he was too I'll and palliative was the oy choice. My heart goes out to you and if you ever want to talk message me. Alcohol does affect the whole family and I get it x
So sorry to hear this, what a traumatic time for you both, to have gone from the hope of a transplant to the despair of cancer. You have hit the nail on the head however, hubby has no quality of life so he wishes dignity in dying his own death, just as he's lived his own life. All so sad xx
It is. Hope you have support from somewhere- friends or family. The BLT is brilliant and our GP was amazing to us all. Here anytime if you want a chat or vent or scream or cry x
I suppose it is his decision when all said and done. To reassure you, the medics wouldn’t have accepted it if they felt he was not of sound mind making it. There are very strict criteria involved in moving someone onto a palliative care pathway. The GP should be able to help with the care plan to support him with nursing care etc. Many hospices run extremely good care at home services which will support not only him but you too. It’s a very difficult time for you. I do hope you are getting support too.
The smaller ones are often the ones who provide the best home care. They have so few beds that they’ve developed really good alternatives. They are very used to end of life care and provide without fail holistic care for the individual and their family. The GP is key to the planning. Take care.
I’m so sorry to hear what you’re going brought. If your husband has had enough, there’s not a lot you can do other than look after yourself while you’re looking after him. The GP and DN are on board so aIm sure they will get everything in place for you: mobility aids, hospital bed, carers, medications for pain relief if necessary. Neither of my parents were in any pain so I hope that’s some comfort. The local hospice may be able to help you have conversations with him about what your concerns are, eg variceal bleed. What you can and cannot cope with and when you will call for help because you aren’t prepared to deal with something. It’s not only him going through this, he’s putting you through it as well, and you need to put your needs into the mix.
You are an amazing woman and he’s very lucky to have you
Thank you, yes it's good to have GP on side, now I can focus my energy into arranging best care. GP has said they will get pain relief delivered to house so whichever one is on call when I need someone is assured drugs are around. On call doctors here cover wide rural area.But it's the practical things, when I need to go to supermarket , who can sit with him? He might sleep right through, he might talk nonsense, but he might get up and walk around and fall over. Silly things like that!
Only woke up once in night so I'm a bit more alert today.
You can do this. We had carers coming in for Mum, just twice a week to begin with then increasing. They asked what I needed and worked around that, so have a think about what you need and see what they can do. It was NHS funded. I also had Marie Curie overnight 4 times a week (which I think is the max) so that I could sleep. Make sure you build in time for you too, not just chores. And if people offer to help, accept it and tell them what you need. It may be the strangest people and the strangest things. Our postman was amazing! Just having someone out of the loop to chat to and put the bins out.
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
First I’ve got to say I’m not a doctor, so please only read this post as my experience. Like everyone else is saying, if the medics are recommending hospital admission then I’d be following their advice to the letter.
I had a transplant Dec 2020 for ARLD. I’ve never had ascites and never been drained. Post transplant, I’ve lost count of the number of times I’ve been admitted following high potassium levels in blood. The journey from home to hospital is a 2 hr drive many times I’ve not even made it home from clinic before the docs been on the phone telling me to turn around and head back to hosp (the last time was 21/12/22). Highest level I’ve had is 6.9, but mostly it’s been results 6.1-6.6 and that has triggered the emergency response from the medics. In my case it’s the Tacrolimus (anti rejection med) that’s causing the high potassium level in blood that together with the fact that the tacrolimus is also causing my kidneys a lot of trauma and my kidneys aren’t able to clear the potassium.
My understanding is that anything from 6.0 onwards triggers the emergency blood retest. I’m on sodium bicarbonate 3 times daily to combat (fudge) the high potassium as it moves potassium from blood into the cells and therefore usually keeps blood level below 6.0.
I’m not saying that I’ve become blasé about it but in MY CASE it really depends on when the blood test is done versus when I’ve taken my dose of sodium bicarbonate. So when it goes above 6.0 I’ve stopped the initial panic as by the time I get back to the hospital/local hospital/GPsurgery I’ve already had my next dose of sodium bicarbonate and can be relatively sure the repeated test will be below 6.0. Since transplant the lowest my potassium level has been is 5.6.
Right now, the medics are trying to lower my level of tacrolimus for a number of reasons but most significantly to reduce trauma to kidneys thereby reducing my potassium level as sodium bicarbonate is not a meant to be a long term solution.
What I do know is this: if the medics are pushing the panic button for me, post transplant with no ascites, whilst on sodium bicarbonate EVEN when the likelihood is by the retest blood result will be lower, then I really wouldn’t risk leaving it untreated. My situation is almost polar opposite to your husbands as I’m post transplant with a liver now functioning at what has been described as “perfect” levels and there’s a very clear reason for my potassium being so high.
I’ve told you this because you asked if anyone has had experience of high potassium - I’ve described mine.
Like Katie says below, I don’t know how you can do what you do. I am totally in awe of the care, love and constant worry that you go through in the situation you are in.
My transplant was as a result of alcohol and I haven’t had an alcoholic drink since 28th Dec 2018, but I’d be a bare faced liar if I said I didn’t miss it pretty much every single day. The destruction alcohol causes is beyond description and you are living it 24/7. I’m glad the GP was kind, at least he’s showed compassion in attempting to understand what you are enduring every time you breathe in and out. I am so very very sorry you are going through this, there is no answer, nor judgement, nor sense to be made of it. I genuinely am in awe of your courage, resilience and compassion. I couldn’t do it and I’m an alcoholic - you are some lady.
Dear Braveheart, thank you for sharing your story. I am sorry to hear that you are still struggling with health issues post transplant. Of course the sensible thing would be to follow medical advice but the sad fact is that hubby cannot find anything worth fighting for now, possibly because he has been told there is no/ very little hope of improvement. I am trying hard to channel all my energy into keeping him comfortable but I'm sure it will catch up with me eventually, especially as it's less than a year since Mum died.We all do our best, nothing else for it. Too late for anger or recrimination.
I am so sorry you are going through so much. It must be incredibly hard to witness knowing that it is out of your hands. I would say that none of this is a real reflection on the value he puts on the life you have built together, alcohol addiction is so cruel and we know it affects peoples thought process. With regards to the potassium, my partner was hospitalised due to this around a year ago and as wurzel says it was in his case too, down to the diuretics. It sorted it's self out in a few days.
I will keep hoping he has some kind of epiphany over the coming days.
Thank you. The diuretics have probably not helped hubby as he has had ongoing ascites while using them, and they appear to have caused kidney issues too. Now he's had enough!
bless him, I do feel for you both, it is an awful illness and he must be very tired. When you feel so ill it must be hard to see the point in carrying on and trying to stop drinking.
I’m not sure what high levels of potassium do to a body. But, I can tell you a few things. I get low potassium readings and this causes cramps which can be quite severe. Unfortunately I need to take a couple of things that lower my potassium. Firstly an inhaler for asthma. It used to be called Ventolin and is now called Salamol or Salbutomol. Also I have to take Lactulose for constipation. I understand that both of these medications lower your potassium. I have even been told they use the inhaler to lower the potassium in patients with too high a reading. I imagine this is what they would do. Use one or another or both. There’s nothing in this to be afraid of. Lactulose is a very gentle laxative. I can’t think they would do anything invasive. Good luck to you both.
What a 24 hours you've had. I can't speak with any certainty about potassium but I think the elephant in the room is far bigger, and that is either your husbands resignation to finality or his fear.
I think its critical for your own well being to find out which one it is.
If he has given up and somehow come to a life choice then you both need to plan for that.
If it is fear it sounds like you need a stronger motivation to make him step up and seek intervention.
His life with you, his responsibility to you and those who love him must be big enough to find courage if living is actually important to him
You personally need to remember that whilst he is the patient, your needs and rights and emotions are every bit as important as his. Your right to life and enjoying life is equal to his. Look after yourself.
Thank you for your stimulating reply. It's a lifestyle choice, hubby has decided enough is enough. He no longer feels he has any quality of life. Liver and kidneys are badly damaged, they won't recover, and hubby has not managed to abstain from alcohol. So in his mind, what's the point of ongoing tests, interventions, hospital visits etc. He wants to spend whatever time is left at home and I'll do my best to support him.
Alanon is great support for family and friends of alcoholics. You can attend in person or zoom. You will be able to really express your feelings there with people who relate to you.
So sorry to hear the trauma you both are going through. I understand it from a recovery point of view. Extremely tough on both of you. Sometimes AA members can call to the person in their home and speak to them if there is just no reasoning.
I have been called in four times for repeat blood tests just lately for high potassium and just yesterday I got another GP request for another blood test not stating what for but assuming the same thing. Can I ask are you having the bloods done at your doctors or hospital?The reason I ask is if they are traveling in the van to the labs your sample could be taken at nine o'clock but not reach the lab until much later. I have been told at my surgery that a few people have been told that their levels are high but on a repeat test they are ok.
I have been sent through to A&E before now for an ECG and blood tests and everything was fine apart from not being let free at quarter to one in the morning 😞
I take 500mg of sodium bicarbonate three times a day and still getting these high results. I really don't know what's going on 🤔
Try not to panic and talk to the doctors, hope you get some answers.
Very co-incidental but I took my Aunty for a Blood Test on Mon morning with GP. At 4am yesterday (Tues) she had a call from Hosp saying they wanted 2send an Ambulance 2get her 2Hosp as her Potassium was 6.4! She refused & only told me at noon! I took her to Hosp. & Potassium back 2normal. They also did a bedside Ecg also normal. Doc said that often, when blood samples have been sat all day before testing, this result can happen! I'm seriously thinking that next time she can have the blood done at the Hosp & get accurate results instead of the worry of this incorrect result happening again! Your hubby must do as he's told. It isn't fair on you at all!
I don’t think it is odd, it’s happened to me. I think that above 6 the risks associated with potential impacts on heart are so much greater that legally they need to inform you as soon as the blood results are noted/reviewed and medically have been acknowledged otherwise the medical professions duty of patient care and responsibility might be deemed negligent. Again, I’m not medical/clinical, it’s just my opinion as to why they may contact you at such an hour. I’ve had my GP phone me at 9 pm on their day off once they’d seen the blood test result online.
hi mrs worried- my dad had very high potassium levels a few years back- he became very confused and disoriented, he also would not see a doctor or go to hospital- my sister called his doctor for advice and he came to the house to check him out- he called for an ambulance straight away- the hospital put him on a iv drip to get his levels down and he had a short stay in hospital- that was a few years back now - however sadly he has been diagnosed with Alzheimer’s- so it’s very important to get him checked out , even if you have to call the doctor yourself- we usually say to my dad it’s about your headaches and he’s fine with that-
Thank you for your comments and advice. The on call GP did come out and having reassured himself that hubby has capacity, no ambulance called as hubby doesn't want any more intervention. Tough but have to respect his wishes x
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