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02 May 2013 @ 11:37 am
Surprising News  
Just before our return flight from Boise yesterday, we got a really unexpected update from my sister's cardiologist: her heart attack was not as bad as the previous doctor had said, and she is already recovering from it. So, she's being moved out of the hospice state and can actually return to the nursing home fairly soon.

I would have given anything for that to be Saturday's news, rather than the death-sentence diagnosis of the doctor who saw her THAT day.

Saturday's diagnosis was so unexpected that my B-I-L thought he must have misheard the original doctor and filtered everything through wishful thinking. The original doctor was the head of cardiology. The Saturday doctor has only been practicing for a year. When the head cardiologist reviewed the new echocardiogram, it showed that one of the ventricles (the one less affected) was repairing itself, and the damage to the other was survivable.

I think my BIL really, really needs to write a nasty letter and request that the horrible misdiagnosis goes into that younger doctor's file. Wrongly telling a patient and her family that she's going to die... God, the trauma that caused, most of all to my sister and her husband. Worse yet, putting her into hospice (where they don't force fluids or nutrition) would actually have killed her had the other doctor not ordered another test.

I'm glad she'll get a chance to have a few more years, as she really was not ready to die. I just hope she's able to be spared greatly outliving the final decline that her Huntington's will bring. As long as she's able to move around on her own (via walker or eventually wheelchair) and to enjoy life, it's all good. But I don't want her to be trapped in an inescapable prison of misery created by her own body. Please, let the timing of this one thing be kind to her, when nothing else has been.

Thanks, all of you, for your love and support. I know it's there, even when I turn comments off (because I can't deal with much communication when things are so very, very bad). Hugs to one and all. ♥

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Entendre? Make mine a double.: Rocky Horror Bananasdeirdre_c on May 2nd, 2013 06:50 pm (UTC)
OMG Venus. That is terrific news but also an INSANE mental wringer you were all put through. I'm so sorry the misdiagnosis happened, but relieved to hear is WAS a misdiagnosis. <3
The Coalition For Disturbing Metaphorshalfshellvenus on May 2nd, 2013 09:13 pm (UTC)
It was just awful-- and emotional trauma and expense to the BIL and siblings aside, I'm most angry that the doctor terrified my sister with that prognosis and that his recommendations for hospice would have killed her if left unchecked.

But what wonderful news in the end. We sure didn't see that coming!
similiesslipsimiliesslip on May 2nd, 2013 06:52 pm (UTC)
Man, that's great (for you all) but yes, awful it happened!

wow

Thinking of you...
The Coalition For Disturbing Metaphorshalfshellvenus on May 2nd, 2013 09:16 pm (UTC)
Fortunately, my sister probably won't remember the details of this experience for long, just that she had a heart attack. But wow, what a collossal horror for everyone involved these last few days.
a rearranger of the proverbial bookshelf: Flower - white daisyembroiderama on May 2nd, 2013 06:57 pm (UTC)
*hugs* I'm so glad to hear it was better news than expected. And yeah, somebody should make note of how that first doctor screwed up.
The Coalition For Disturbing Metaphorshalfshellvenus on May 2nd, 2013 09:17 pm (UTC)
Me too. *hugs back* What a relief!
uranium-235fidgety on May 2nd, 2013 07:01 pm (UTC)
Residents and new doctors are arrogant douchebags. I'm sure that there's many exceptions to this rule, but that was more or less what I learned during my medical career. I really don't know what happens in medical school to make them this way.

On the other hand, some of the best doctors are also the nicest. This isn't always true, but the doctors I liked working with tended to be really, really good at what they did.

On one hand, I could look at this and say on Saturday that they simply didn't know what was going to happen. I mean, after a massive heart attack, sometimes it's not entirely clear what's going on because the body is in so much turmoil and has to sort of settle down. Kind of like with a stroke -- sometimes, you really do need a day or two to fully assess the situation and how well the body is able to heal itself. But he should have told you all of that, too, instead of being like "Well, she's going to die and that's just the way it is."
The Coalition For Disturbing Metaphorshalfshellvenus on May 2nd, 2013 09:20 pm (UTC)
The original prognosis from the head of cardiology was not remotely as serious as the one from the doctor on Saturday. He truly made a terrible mistake (he misread the echocardiogram).

But it would have been better to let her be stabilized and rest and check again in a few days, rather than leaping to the conclusion he did and advising something that would actually have killed her.

Being overly cautious can be a problem in new doctors, but so can rushing ahead. Boy.
brigid_tanner: boys-what the hellbrigid_tanner on May 2nd, 2013 11:22 pm (UTC)
So relieved the baby doc screwed up, but DAMN!! he really needs a talking to from his superiors on this. Just say "we have to wait and see how it goes" and don't scare the family to death.
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 05:23 am (UTC)
Exactly! Frequently, that's the right answer for a case like this anyway. But don't jump on the worst-case scenario when you really don't know. And learn to know when you don't know!

Thanks so much for your IM. I really appreciate it. ♥
Vice Captain of the Universesweeny_todd on May 3rd, 2013 02:02 am (UTC)
I am so glad you the news is different!
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 05:23 am (UTC)
Me too!
Celtic_Forestceltic_forest on May 3rd, 2013 02:52 am (UTC)
*love*
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 05:24 am (UTC)
Thank you. *hugs*
cindy: chocolate mousetsuki_no_bara on May 3rd, 2013 05:02 am (UTC)
holy crap! i'm glad the first diagnosis was wrong, but i'm so sorry you had to go through all that! *hugs*
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 06:12 am (UTC)
It sure explains why she tried to leave in the middle of the night. She was in much better shape than the hospital thought!

What a nightmare, though. Ugh.
Port: foryoudesertport on May 3rd, 2013 06:25 am (UTC)
Oh, this is good news! I've been worrying about you all and hoping you were doing okay. What a terrible thing to be put through for a misdiagnosis. Ugh. But I'm glad your family gets a little more time together, the most important thing.

*hugs*
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 10:58 pm (UTC)
It was awful-- and so unnecessary.

But I'm glad she got a reprieve and can enjoy a few more years. When then end comes, I hope she doesn't have to be aware of it. This was so hard on her. Even with some dementia (which jumped way back after the attack, though that's probably temporary), she still knew what was happening and was so very afraid. The unfairness of that, on top of all that's she's gone through, is something I hope she'll be spared down the road.

Thanks for the thoughts and kind words. *hugs*
Maz (or foxxy!): MS Hugstuesdaeschild on May 3rd, 2013 08:44 am (UTC)
I'm so, so pleased to read this! A bit disgusted with Saturday's doctor though; that was very, very bad.

I'm sure this news has given the whole family a boost, and especially given your sister time which will hopefully be quality for a long while yet.

*hugs*
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 11:02 pm (UTC)
You're probably as shocked as I was! We were so sure this was hopeless, and everyone gathered with the expectation of seeing her off on the road to the end. Hard (and horrible) as that is, you have to. Your family and loved ones are the only thing that help you through if you're the one dying.

I don't know how much quality time my sister has, given the inevitable progression of her Huntington's, but she still has some autonomy and is still enjoying life right now. These later years have left her in a happy place, the only blessing she's received. I'm so glad she'll have more beautiful days to enjoy, more horses to dream about.

Thanks so much for your love and support during all of this. ♥
Chat Noirmaster_chatnoir on May 3rd, 2013 03:29 pm (UTC)
I'm so glad she got this second chance! I've been thinking about you since your last post and I'm so relieved that you're relieved.
The Coalition For Disturbing Metaphorshalfshellvenus on May 3rd, 2013 11:36 pm (UTC)
It was really unexpected news, but so very welcome. Aside from her Hungtington's, she has always been in really good health-- so even with the heart attack, she has the strength to go on.

Thanks for the good thoughts!
heliokleia: POOH IC - HUGSheliokleia on May 3rd, 2013 09:34 pm (UTC)
First I shook my head as I read your post but finally I took a deep breath and nodded...

My best wishes to you and your family, my dear, brave Mme Venus; what a horrible scenario such a misdiagnosis can create...
*shakes head*
- The more I'm glad that finally, there is a happy ending for your sister; what a relief, hm?
*hugs* ♥
The Coalition For Disturbing Metaphorshalfshellvenus on May 4th, 2013 07:19 am (UTC)
The prognosis that younger doctor gave is the kind of thing you shouldn't say lightly. You need to be really, really sure, and if you aren't (or are new enough to misread vital information), then advocate for stabilizing the patient and waiting.

We're all glad she has more time left to enjoy. It was exactly what she wanted.

*hugs*
nodressrehersalnodressrehersal on May 4th, 2013 01:29 am (UTC)
Unbelievable. This should definitely be reported to hospital administration, patient advocates, the board...

I can only imagine the level of relief you all must be feeling with this news.
The Coalition For Disturbing Metaphorshalfshellvenus on May 4th, 2013 07:41 am (UTC)
In this, as in all of life, the idea of never being "in a hurry to make a bad decision" really applies. That and beating back arrogance.

We're just glad it all turned out as it did.
Sallyi_smell_apples on May 4th, 2013 08:55 am (UTC)
FUCK YEAH!! For the good news! But oh wow that misdiagnosis can't just get swept under the rug. Jeepers :/
The Coalition For Disturbing Metaphorshalfshellvenus on May 4th, 2013 06:46 pm (UTC)
Compared to the prognosis of last weekend, that news seems like a miracle!

And for my sister, it is. :)