4 ms·
This is where my wife was, a week or so ago. She was initially admitted to hospital for low Sodium (hyponatremia) with no obvious symptoms - we actually went f
by spacedcowboy 3y ago
This is where my wife was, a week or so ago.
She was initially admitted to hospital for low Sodium (hyponatremia) with no obvious symptoms - we actually went for something else which was benign. They corrected the low Sodium, but they corrected it quickly - possibly too quickly [1]. The next day she started to become non-responsive, and the day after was completely non-responsive - didn't react to pain stimuli, dropping her hand over her face just made her hand hit her face, couldn't open her eyes etc.
They gave her anti-depressant drugs and she seemed to snap out of it. They kept her in for another couple of days (which the insurance are now arguing over, but that's another tragedy) and then discharged her.
A few days later she stopped being able to walk, she's in constant pain, her legs are tremoring all the time now, her chest is constricted and she's frequently hyperventilating for hours at a time in order to breathe. She gets told she's "anxious", and it's in her head by her PCP. We visit ER several times because she can't breathe properly, and every time she's put on an IV, they maybe give her some sedation (Ativan) and then discharge her a few hours later once she's calmed down due to the drugs.
After 6 weeks of constant pain, next to no sleep, and being told she's fine (when she clearly isn't "fine") she starts talking about how she needs to find peace, and she can't take this any more. She's been building up to it, but I didn't take it seriously enough. Mea culpa. We don't have a gun in the house, she phones friends, asking them if they have a gun, and she'd "take care of everything".
One friend of hers calls it in. Police, Fire-brigade (EMT) and eventually an ambulance appear outside the house as she's sectioned on a 3-day hold. They actually released her the next day, and now she's terrified of "going back". I'm not saying the officials did anything wrong - they didn't - they were courteous but implacable, but they were just doing an unpleasant job. On the plus side, she's not mentioned anything about taking her life since.
A doctor mentions that there is such a thing as Osmotic Demylination Syndrome [2], which can happen when hyponatremia is "fixed" too rapidly. It would explain all the symptoms we're seeing, including the non-responsiveness. Apparently there's an MRI test to see if this has happened. Our next (7th ? I lose track) visit to ER, I get them to do this MRI. She doesn't have it, from what we can see on the data. I ask for the data to send to the neurologist.
Finally, 8 weeks since this all started, the various specialist referrals start to kick in: Endocrinologist, Cardiologist, Neurologist, Gastroenterologist, Psychiatrist... Her PCP hasn't been much help other than to give referrals, and in fact seems to be out of her depth - the last visit to the PCP we were told that the PCP refused to prescribe any more Ativan. That would be reasonable (these aren't drugs to take lightly) if she were to be weaned off them, but no - cold turkey it has to be. I ask the PCP to talk to the neurologist, who seems a bit more human, and the prescription is passed to the neurologist to fulfil.
I won't go into me finding a lump on my balls, and the subsequent worry over cancer (it was just a cyst), or the maybe-heart-attack last weekend that has me seeing the same cardiologist as my wife 'STAT'. This isn't about me. But if I'm out of the picture, well, there's just me, her and our son, the rest of family is 6000 miles away....
So here I am, still trying to sound positive to an intelligent woman who knows just how far she's fallen. Still trying to sound upbeat when she's literally crying in pain (oh yeah, the pain-specialist appointment is still to happen) throughout the night, and OTC pain-killers don't have any effect. Still trying to make it sound like we're making progress even though I can't see it myself. Still trying to answer "why won't someone help me ?" without sounding trite and jaded.
Hopelessness is an insidious poison for the mind. I don't feel the same way, but I can understand how she'd ask about the gun...
1: https://imgur.com/jtGTdn3 https://imgur.com/jtGTdn3
2: https://medlineplus.gov/ency/article/000775.htm https://medlineplus.gov/ency/article/000775.htm
- s1artibartfast 3y agoWhat a terrible experience you are going through. I hope it makes a turn for the better, and soon. I'm curious what you mean by one of your closing comments: >Still trying to answer "why won't someone help me ?" without sounding trite and jaded Not looking to debate, but genuinely curious.
- spacedcowboy 3y agoBecause I agree with her that she's not getting the help she needs, but I don't know where else to go. - Her PCP seems useless - basically a glorified project manager for other expert opinions, and the time taken to get appointments with these experts is straining. - Going to urgent care, or doing an 'online Dr visit' just gets the advice to go to ER instead, because of the breathing. - Going to ER (which we have, several times) just gets her admitted to the ER beds, put on an IV for fluids, maybe a chest X-Ray taken, and then discharged after a few hours with a recommendation to go see her PCP. - the neurologist has been the best of them so far, but she's 30 miles away and we get to see her once per month. I'm grateful for the help we've had from the neurologist, but it's not much use at 3am when she can't breath, again, is in pain, again, and feels like her chest has a bar pressing down across it, again. Going to ER because of this is covered above. No-one wants to take ownership, everyone (with the exception so far of our neurologist) wants to try and get someone else to "manage this case". It doesn't leave one with the warm fuzzies, especially given the last couple of months. It has actually reached the point where I've considered - not seriously yet, but it's still there - selling up, leaving the US and going back home to the UK. Myself and my son are citizens by right, I have enough cash/equivalents that getting a spousal visa wouldn't be an issue, and we'd pay the NHS surcharge for a few years - still a lot less than my insurance here. We could even be closer to family for better support. The largest factor against, in fact, is the logistics of simply getting her there, taking a plane seems like a poor option atm, and she gets very seasick even on cruise liners. Once there, having bought a house with the proceeds of the sale of this one, retirement would be pretty easy on me, and maybe a health service more focussed on making people better, over making money, might be better for her.
- ianburrell 3y ago