Tuesday, July 2, 2024

What Really Happened to Her




Now that I have final word back on potential legal issues, I can share with you what really happened to my mom, why she didn't have to die and how you can seek justice on behalf of your loved ones.  I must say I am NOT a lawyer and none of this is to be construed as legal advice.  I am relaying our experience so that no one else is blindsided by a few things that we were.

It was a year ago today when my life changed.  A year ago I got a call from my Mom's sib describing symptoms Mom had been having for five days and wondered if they should take her to the hospital.  (The answer is always yes and please don't wait five days to do it regardless of whether the person gives you resistance.)  

I'm going to say this as plain and simply as I can...my mom's doctor, for lack of a better phrase, killed her.  This is a man she put faith in and had a very pleasant and frequent relationship with over the years.  He's known all of her aches and pains, always responded to her within a day if not sooner through her portal and she held him in the highest regard.  She liked him so much, essentially the rest of the family uses him as their doctor as well.  (Not us though, thank God.)  Our family has always been of the mindset of don't tell people about medical issues unless there is something to worry about.  This means things like biopsies, fainting spells and things like that weren't told to me unless her sib contacted me because THEY deemed it necessary to tell me.  Mom wasn't married so she didn't have a second set of eyes readily available like you do when you're married.  She never wanted to be a 'bother' so she often would minimize any potential medical issues.  These things I'm about to tell you she never shared with me so what I'm telling you is based off of going through her medical stuff after she died.  Because she trusted her doctor, when her platelets came back low 7 years ago, he dismissed it as anemia.  She wasn't tested for it and was only maybe 5 points below normal.  Her platelet numbers continued to be under the normal limit through 2021.  That year, her platelets dropped significantly to 40 points below normal.  If I had been privy to that information, I would have insisted she get more testing ASAP because my father in law rode the platelet rollercoaster while going through cancer so that is a huge red flag for us.  Her doctor insisted she was fine without running tests.  Even 6 months later when she began losing weight for no reason, 'you're fine, the blood tests don't show anything.'  No, actually they showed a 40 point below normal platelet count along with a now concrete reason to suspect cancer.  You have unintentional weight loss AND a significantly low platelet count and this is your answer?  She trusted him so she didn't do anything further.  (At this point, we would've rushed her anywhere to get testing or a second opinion but as a non-boat rocking boomer, she didn't mention it.)

Any of you who have had a significant amount of weight to lose knows that it takes many pounds before it's noticeable.  The only person who noticed this weight loss was her initially.  She was with her sib and friends constantly but they didn't notice and only saw that she said she was losing weight.  When we saw her before our trip for the holiday in 2022, her weight loss was quite noticeable to us now.  Why?  She was down 100 lbs.  The Mr was very worried and said you don't lose weight without trying for no reason and she said she'd just been tested and her bloodwork came back fine.  (Not really.  We found out after she passed at that time her platelets were still 40 points below normal and the doctor said maybe see a hematologist but 'they're booked out 6 months so you probably won't be able to get in and 9x out of 10, it's nothing.'  He consulted someone and they said to run a Hep C and HIV test because that's what they would run and he did that and considered his job done and she didn't pursue it further because he wasn't worried.)  We were relieved that she seemed to have been tested and there were no alarm bells and she said her sib hypothesized maybe her WLS from 25 years ago was kicking back in somehow.  (Not a thing but you know how sometimes you look for an explanation when there doesn't seem to be one.)    Then at Christmas the family got Covid while we were away and months later she still had a nagging cough which she attributed to Covid and didn't follow up on it.  It was her secondary lung cancer taking her from us.  It wasn't until she got to the point apparently late June that began to raise concern with her sib and friends who saw her regularly that she was confused and I was called the beginning of July to finally be told of all of this.  I said to immediately get her to a hospital because it sounded like she was having a stroke as we'd dealt with the same symptoms with another family member.  

It wasn't.  

The hospital performed a biopsy in which they nicked her lung and she bled out internally for 10 days filling up with 2 liters of her own blood.  The hospital refused to give us her biopsy results passing the buck to everyone for over a week.   Oh and that wonderful doctor of hers?  The one who gets any and every notification from the hospitals when she goes in for an ER visit and immediately calls or messages to follow up with her?  He wouldn't respond to her.  She sent him a message asking for a script for oxygen like she was on in the hospital and couldn't breathe.  They saw the message two days later at the end of day (they always sent her other stuff at the beginning of the day if it was the day before) and never got back to her about the oxygen OR her biopsy results.  The hospital said he would have them too when I got irate with someone about the runaround I was getting.  Him not getting back to her cost her the ability to get the scan she needed to start treatment for cancer (and give me a VITAL piece of my own medical history I can never get) and it wasn't until she was readmitted 8 days later that anyone gave her the results.  The exact words from the doctor who saw her?  "This hospital failed you."  He still saw hope despite her being stage 4.  He said he had patients of his who were stage 4 for 10-15 years so there was no reason to believe she couldn't be one of them.  But because of a less than sanitary environment in the ER where the nurse who came in to treat her was covered in the blood of some dude who had just coughed all over her during a Covid spike and didn't change her clothes, Mom got pneumonia and he feared she would become septic.  Which she did but not for his lack of trying to pump her full of a ton of meds to ward it off.  That man was an angel and was the only one who looked out for her.

That amazing doctor she loved and kept in frequent contact, I can only assume he saw that he f**ked up and was too cowardly to even acknowledge her much less treat her.  I began downloading stuff from her portal that looked suspect to me so I could go over them and ask the proper questions and such.  When her primary doctors portal was finally connected to it, they shut it down right after she died so I couldn't download everything I needed.  We're not even going to go into all of the neglect we have on video at the 'rehab' place she was at where they starved, dehydrated her as well as denied her health care directive for comfort care and provided ZERO catheter care so we 911'd her right out of there on day 3 when she was SCREAMING in pain and had aphasia so she could no longer properly communicate.  I will have nightmares about those last 4 days of her life for the rest of mine.  I literally can't even look at the healthcare symbol without going into an anxiety attack and let me tell you it is ALL over town.  You cannot escape it even in emails or ads.  It really sucks to have to go visit your mother's grave across the street from the place she died and all of the trauma associated with the death.  

I knew that we had a case against three potential entities:  her doctor, the hospital and the rehab which significantly sped up her death.  Because her niece, whom she was very close with, was getting married 10 months later, I struggled with whether or not to speak with attorneys because I didn't know if they would haul her sib (her medical POA) into court.  I did not want to take away from that happy time for them and I knew mom would haunt me if I infringed on that time on her behalf.  In April, I gathered all portal print outs, notes taken, notes pointing out where they screwed up, etc as well as an outline.  10 days before the wedding is when I started submitting to lawyers.  Yes our state has one year limit for medical malpractice but it has two years for wrongful death so I thought I was covered either way.  I essentially tried 5 different law firms (two I emailed never bothered to respond) and the other three turned it down citing the time limit was now too close.  So in trying to do what I thought Mom would want where her niece's wedding was concerned, I screwed her chance at justice.  Believe me, there is no justice.  No it wouldn't bring her back but the point was to have a ding on the record of all of those involved in her death and that does NOT happen unless there is a suit.  I checked.  There is also no justice for me because now I have a family history of cancer that I have ZERO idea of where it originated from!!  Lung cancer was secondary and metastatic from wherever it came from.  This seemed to be a slow moving cancer based on when the platelet numbers dropped and when the weight loss started meaning she absolutely did not have to die.  Hell even at stage 4 the first thing she said was "let's do this!  I want treatment NOW."   She lost 140 lbs. in 18 months!!!  Let that sink in on how f**king negligent a doctor has to be to allow that for a patient he saw about 10x during that period whether for official appointments or her stopping in to weigh herself.

I'm not telling you this to air my Mom's business, I'm telling you this because the people you love don't have to die and if they do, there are absolute steps you MUST take to ensure they get justice.  Again, I'm not a lawyer but I can only tell you our experience and the things the lawyers I spoke to told me.

1)  Medical malpractice and/or wrongful death lawyers almost always take your case for no money up front because they get a cut of the settlement.  So if cost is an issue for you, it shouldn't be especially if you have enough documentation of the wrong doing.

2)  The second your loved one goes into the hospital, discuss with them about getting access to their portal so that you can begin downloading ALL documents to PDF.  Tell them you're more than happy to change their password when they get home if they don't want you in their business but they may become incapacitated and unable to look at those things themselves and they need an advocate.  (Yeah, I know y'all are tired of me saying it but see why now??)  Connect ALL doctors networks in there if they aren't connected yet so you have the current notes from the hospital as well as anything from their primary.  Print off EVERYTHING from their primary from the previous three years to see if there is a pattern.  Do the same with every single update and test from the hospital.  This serves a dual purpose.  Not only do you have everything to look over so you can ask questions that may be vital to treatment but IF there is any wrong doing, this allows you to show what the portal said originally.  If you think hospitals/doctors haven't gotten busted going back and changing notes in the portals when they realized they caused harm, just do a search.  Heck there's a reason if you search "doctor altered medical records" that so many attorney's websites have sections on it.  (To clarify, I am NOT suggesting this happened in our case.)

3)  Take notes and pics of EVERYTHING.  If you see health code violations or anything that is suspect, take a pic/document it even if it seems insignificant.  For example, I took a pic of the shift board in the room where both the POA and my number was listed and we said doctor's were not to give her medical results alone.  (Which happened and when my mom tried to reiterate that, the doctor started yelling at her and made her cry.  Oh believe me he got immediately reamed by the POA for that one!!)  Even if you don't review that stuff every night, upload everything to a folder.  

4)  If your loved one dies, regardless of your feelings or the feelings of anyone else in the family, get an autopsy.  The sigh from every lawyer I talked to after saying we didn't have that tells me I should've gone with my instinct instead of being nice.  It was originally agreed upon by her POA and I two weeks before but then when she passed, they said no and honestly, it wasn't their choice anymore, it was mine and I didn't know that.  When the person dies, it's on the next of kin as the POA role dies when the person does.  I should've pushed for it because I told them I needed that medical history for myself and now I'm denied that as well as whatever was needed for a lawyer to make their case.  If you're worried about the ability to hide the cuts for an open casket funeral, research shows it does not affect your ability to have open casket.  No, the thought of what they do in that process is not pleasant but the thought of having no answers AND no medical history for yourself going forward is worse.  

5)  While you're in 'task mode' the week of the death, try to write down EVERYTHING you remember as an outline for an attorney before it fades.  There are SO many things I would've forgotten if I hadn't written them down at the time.  Having worked for attorneys in the past, I can tell you they like an outline and as much info as possible up front.  If you can assign this task to a spouse or someone that's gone through it with you, it can take a load off when it's time to submit it to lawyer to consult.

6)  While it sucks, you must start the attorney process sooner than later.  Like I would give it a month or two max.  Give yourself time to get over the initial shock and planning stage when you're in survival mode that first week, then the second and third weeks when you're still reeling but feeling the emotions.  Come the fourth week, people have basically stopped checking on you and having something else to focus on may be what you need.

7)  Check local laws because in our state wrongful death suit would entail heavy involvement from her sib and I know them well enough to know their stance on filing suit at this point.  We have a case, period.  Because I assumed wrongful death could be pursued in the same way medical malpractice could, it cost me/her.  

Some resources you can take advantage of potentially is if you aren't happy with patient care there are supposedly patient services at many hospitals.  Sometimes they help, other times they write things down to pretend they're doing something and do nothing.  There is also the Joint Commission where you can file complaints against doctors and/or hospitals which are supposed to start an immediate investigation.  I will tell you they do not give you a copy of this once it's filed so I would screenshot it BEFORE submitting and follow up with it every two days or you will not be contacted.  (I was never contacted and I didn't have time to be doing their job for them.)  You can also report someone to the medical board.  I am reporting him to both that and the Joint Commission as a last attempt at some kind of justice for her.  If nothing else, I want her name in front of his face to remind him how he failed her and my only regret is I can't write a note he would see telling him to rot in hell.

This is the THIRD person in our family to be lost to medical ineptitude.  The Mr's grandmother, his dad and now my mom all passed away due to medical negligence.  People don't file suit for many reasons.  They either think it will make them look greedy to others (who effing cares...how many more people would you like them to take from other people and their families??), they don't want to relive it (totally understandable but still- this allows them to practice unscathed even if it's just a ding somewhere) or they think it will be overwhelming.  Yes, it can be IF it goes to trial but the majority of the time, there's a settlement and if you have a lawyer willing to take your case, believe me when I tell you they AREN'T going to take it if they don't think they can win.  In my case, being a people pleaser cost me because I didn't want to potentially ruin what should be a happy time.  (Nothing says they would've been called for more than a day or two deposition so in the course of things...a blip.)  

I'm not saying go around and sue everyone, that isn't what this was about.  This was about trying to get justice for mom and you'd better believe when I prayed about it repeatedly, I got three very distinct signs from her to do it so I felt good attempting to proceed.  I am trying to forgive myself for not acting faster as the lawyers made it sound like I had a case but the time table for malpractice was too close for them to work with.  I've asked Mom's forgiveness for not acting faster and I feel like the only thing I could do was share it with you to hopefully help.  To try to tell others that in addition to the horrific hell you're going through if a loved one is in the hospital that there's this other aspect you or someone you assign to pick up on stuff needs to pay attention to.  I would love to list all of the people involved so others could run far and fast but obviously I can't do that.  I can't even really Yelp or review them properly because they could take action for telling your story because it makes them look bad.  (I can tell you that when I recently went to my gynie there was a note on the back of every door saying "to give you quality care we are no longer working with X hospital" which is the hospital where she died.  So I'm not being oversensitive or emotional.  

I hope no one reading this ever has to go through the absolute hell we went through last July.  I hope no one knows what it's like to walk into an ED and see they've left your mother naked in the hallway clawing in pain at her gown they draped over her screaming "why won't anyone help me!?!?!" while she looks through you.  But God forbid you do and you feel like their doctor dropped the ball in the most obvious of ways, then I hope even one thing I've shared will help you gather the info needed to proceed with justice in their name.

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4 comments:

  1. It's still hard to take that this all really happened and then you get to a point where you're finally ready to go through the process of getting justice and more obstacles get thrown in. I don't wish this scenario on anyone but I know this information is helpful for anyone going through similar things because statistically that is likely to be the case.

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  2. Such horror you all went through and all those memories and feelings come flooding back as you relive what you went through this time last year. I am so very sorry for the complete nightmare that your mom and all of you went through because of the horrific ineptitude of the doctors and facilities. I have my own disdain for the medical community as a whole, minus a few gems I'm thankful for, and my distrust goes way back, including when I spent 3 months in the hospital at 15 and all kinds of things were missed. I know this month is brutally painful as it feels so fresh and almost in real-time. I'm sending you so much love and support as you get through each day. I've been there, and I still go through it. There are two months a year that are brutally hard for me, and I kind of want to push them along to get through them. Thank you for sharing your story, and I have no doubt many people, sadly, can relate to it. xoxoxoxo

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  3. Thank you for telling this, I'm usually pretty anal when my mother goes in the hospital for anything, I'm sure the nurses and doctors wish I would go away, I ask a lot of questions I know that she wouldn't think of. When my dad was dying at the hospital, I jumped in and took care of everything, I think she was in denial. I will make damn sure to be extra vigilant from now on, again thank you.

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