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The NHS are a torrent of imbeciles - Help my Mum
Squirminator2k
they/themNorth Hollywood, CARegistered User regular
they/themNorth Hollywood, CARegistered User regular
Two years ago, my Mum's diabetes took a sharp turn for the worse. Her eyesight has deteriorated, her legs are weakening, and she's on so many meds she often forgets to take one or two them. It's frustrating. It's frustrating for her because she's lost her independence - she relies very heavily now on my brother, sister and I, and on close friends of the family. She's always been a strong, independent woman but now she's fragile, weak. She's so depressed. And that's frustrating for us because there's nothing we can do to help short of keep the house tidy and do jobs for her here and there.
To cap it all, the NHS are about as much use as a papier-mâché hammer. They have constantly lost her records, which is not much help. But their recent blunder is fucking epic.
She went into Lister Hospital on Wednesday. This was all planned a month ago, as she's having an operation. She was due to return home this evening, but she came home last night. Why? Well, they'd discovered that her potassium, urea and creatine levels are too high. Really, you'd think they'd do a blood test or something before they book her in for the op. Y'know, just to make sure she can actually have it.
And the annoying part? They did. She's had several blood tests at Lister and at our local Hospital (Luton & Dunstable) over the past few months, and she had a test just before she was confirmed for the operation. Why did no one pick up on this? Why did they fuck her about, waste her time, spend tax-payer's money ferrying her into Stevenege to get into Lister Hospital for an operation she wasn't able to have?
And it doesn't help that they didn't give her specific information. That's the norm, though. She has tests for all sorts and they just sort of keep the results to themselves, snickering as they read through what are apparently classified medical records. The only person who gave her any information was that one of these levels had gone from 5.5 to 5.7, but he neglected to mention which level it was, or what that actually means in context. What a bunch of fucking wankers. Yes, these levels are too high. How do we reduce them? The answer was for my Mum to cut chocolate, bananas and coffee out of her diet, but she doesn't eat any of these items anyway. Surely there's something else we can actually do.
TL;DR - How can we reduce my Mum's potassium, creatine and urea levels? What changes can she make to her lifestyle, her diet, anything? Is there anything I can do to help reduce these levels? I hate to vent emotionally on these forums, but I just want my Mum to be healthy again. I just want her to be happy again.
To cap it all, the NHS are about as much use as a papier-mâché hammer. They have constantly lost her records, which is not much help. But their recent blunder is fucking epic.
She went into Lister Hospital on Wednesday. This was all planned a month ago, as she's having an operation. She was due to return home this evening, but she came home last night. Why? Well, they'd discovered that her potassium, urea and creatine levels are too high. Really, you'd think they'd do a blood test or something before they book her in for the op. Y'know, just to make sure she can actually have it.
And the annoying part? They did. She's had several blood tests at Lister and at our local Hospital (Luton & Dunstable) over the past few months, and she had a test just before she was confirmed for the operation. Why did no one pick up on this? Why did they fuck her about, waste her time, spend tax-payer's money ferrying her into Stevenege to get into Lister Hospital for an operation she wasn't able to have?
And it doesn't help that they didn't give her specific information. That's the norm, though. She has tests for all sorts and they just sort of keep the results to themselves, snickering as they read through what are apparently classified medical records. The only person who gave her any information was that one of these levels had gone from 5.5 to 5.7, but he neglected to mention which level it was, or what that actually means in context. What a bunch of fucking wankers. Yes, these levels are too high. How do we reduce them? The answer was for my Mum to cut chocolate, bananas and coffee out of her diet, but she doesn't eat any of these items anyway. Surely there's something else we can actually do.
TL;DR - How can we reduce my Mum's potassium, creatine and urea levels? What changes can she make to her lifestyle, her diet, anything? Is there anything I can do to help reduce these levels? I hate to vent emotionally on these forums, but I just want my Mum to be healthy again. I just want her to be happy again.
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Squirminator2k on
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Red meat, eh? Thanks for that.
As far as potassium, cut her vegetables into really small pieces and boil them for a really long time (yum!), to allow potassium to move into the water.
Check out the list of foods here http://yourhealth.calgaryhealthregion.ca/Topic.jsp?GUID=%7B55C9AAA3-4294-447F-BCCE-9C0A54449D17%7D
I have literally no idea about urea levels, nor could I find anything online.
So, fruit, vegetables, and meat. Coupled with the other things she can't eat at the moment, this means she can eat... er... dust. And cardboard. Magical.
What's her diet like now? Does she already eat a really good diet, all lean meat and veggies, water as her only drink?
wait is that a threat
fuck you buddy
Right now, we eat what we eat. This is usually pasta, pizza or roast dinners (the latter is, obviously, out of the window now). We're totally re-evaluating her diet at the moment, natch.
Hey, if it'll help my Mum get better...
Also, is there any way that you can get in to see a dietitian or nutritionist? They would be able to give you pointers.
Finally, high urea levels may be a result of poor kidney function, which often occurs when diabetes gets bad. You need to get her to see a doctor about this and see if you can get in to see a nephrologist.
There are big differences between nationalized health systems and the American system, so I'm going to try to put all of my clinical expectations aside and talk just about medical ethics and then the numbers.
The simple truth is that, as a patient, your mother has a right to know what's going on, what's been found out about her, and so forth. It's the responsibility of her providers to educate her and fill in all the gaps, and if they're not doing that, they're failing on a fundamental level. What I'd recommend is a quick sit-down visit with the primary care physician who has access to her records. What should go in with her is the boxes of all the medications she takes, a written account of what she's eaten in the past week, and herself with her complaints about not knowing what's happening to her health. What should come out is an apology from the doc, a full hard copy of her medical record for her own personal use, and a printed list of what drugs she should take and when each day. The list we use at my hospital looks just like a calendar, with dates and times in order of occurrence during the day. That software is cheap. If they don't have it, buy a cheap calendar to write it out on, in the presence of the doctor, and don't let them leave until it's done.
About the blood test and the findings - these can be expected to fluctuate somewhat. The number that was blandly quoted to you out of context and without explanation was very likely her serum potassium, which in the healthy adult fluctuates between 3.5 mg/dl and 5.5 mg/dl or so. 5.7 mg/dl is abnormally high. It is entirely possible that the high potassium finding was a brand new finding when she went into hospital, because these things aren't constant and can change from day to day. However, it was good medicine on the surgeon's part not to do the operation when the high potassium was found. This is because many operations require anesthetic, and many anesthetics interact very poorly with high potassium - it can stop the heart or change its rhythm, turning something dangerous (surgery) into something fatal.
As for the urea and creatinine, that could be signs of a bigger problem. Someone above mentioned a "kidney failure diet" - I want to clarify by saying that in medicine, 'kidney failure' doesn't mean that the kidney has failed or is broken, it just means that it isn't working at 100% at this time - it can even be temporary. Having high creatinine and urea together rarely indicates a dietary problem, but usually does indicate some degree of kidney failure. There's a kind of kidney failure called nodular glomerulosclerosis, or Kimmelsteil-Wilson's disease - it's something you can look up online, if you want to read on it - that is found very commonly in diabetics. Your physician should be looking into this straightaway and deciding if more tests are necessary. I notice that you said her condition seemed to be turning down in general, and in fact this often occurs in combination with the start of a diabetic renal failure. I can't say that it's happening, but it's really something the physician should be thinking of at the next visit.
How to change the potassium? Well, the doctors had the right general idea by telling your mother not to eat bananas, but if she wasn't eating them anyway, it wasn't very good advice. My first recommendation is to make sure she stays hydrated. Diabetics often need to drink a lot, and urinate a lot, but make sure she keeps drinking so as not to dry out - adding more water to her system will, of course, lower the concentration of potassium in the blood. My second is to start reading boxes, measuring meal sizes, and keeping a complete food journal. The best that you're going to be able to do for her is dietary. Make sure she gets exactly 100% of her daily recommended potassium. No more than that, no less than that. What should happen is that her kidney will get rid of the excess in her blood as best it can, and she won't risk dropping the potassium too low, which is just as bad as it being high.
How to change the creatinine or urea? You can't, it isn't really a dietary thing. That said, don't worry about it right now. Neither of those things are toxic or dangerous until they're in the extreme ranges you find with a complete kidney failure, which is not at all likely right now. Focus only on the potassium.
tl;dr
1) Measure meal sizes precisely, count potassium, limit it to exactly 100% daily allowance every day, and keep a journal of what was eaten every day. There are diabetic diet books out there that are good at helping with this.
2) Informational meeting with the physician that results in you getting the name of all drugs, a calendar of when they should be taken, and a hard copy of the entire patient medical record.
3) Let the physician know you're concerned about kidney function.
Best of health to your mother, she should be proud that you take such an interest in her well-being.
Here's some additional information that might help narrow things down a bit.
My Mum takes 250mg of Furosemide twice a day, and 8mg of Candesartan four times a day. She's been told to stop taking both of these, which worries her as they are for her blood pressure. She also mentioned that she has been told her kidneys are not functioning at 100% either.
I don't know if that can help, but I figured I'd pop it here anyway. Thanks for all of the help, guys. I appreciate it, and I'm sure my Mum will too.
She was given a diet to follow, exercises and other tips/tricks. At the beginning, she saw her weekly, now I think it's once every couple months or something. Perhaps your mom would really benefit from this. Hopefully a referral from her doctor will allow it to be payed out by her insurance?
As for those pills, if she hasn't got it already, you should get her one of those big pill holders for all days of the week, and even times of the day. She'll barely even have to think about it after that.
There's also a shit-tonne of resources on the net, including recipes, tips/tricks, massage techniques and peer run support systems if she needs them.
Having her own nutritionist will really really help though. They'll be able to fine tune her diet together and figure out her problem spots and how to deal with them.
edit> also, once her body reaches balance again, she'll become (hopefully) a little bit more independent.
Get this. Especially if she's being ferried about from place to place (my girlfriend has a similar problem). It can take a bit of time to sort out initially, but you can request copies of every note a doctor takes, which is generally easier. You'll sometimes run up against doctors who won't make a diagnosis or write prescriptions based on personal copies of records, but that mostly happens if it looks like somebody's trying to get hold of certain classes of drugs (girlfriend again, she's on a boatload of ridiculously powerful painkillers, which obviously sets off the "drug seeker" alarm bells).