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Thread: Died, now they're killing me

  1. #1
    Senior Member
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    Died, now they're killing me

    Have a DNR on file but she brought me back anyway, can't blame her instinct is to save me, doesn't have time to check the freaking file for DNR but still in hell.

    Sent me home with a cough assist device and on Palliative care which changed to hospice a month later, because there?s an opioid crisis and it was the easiest way to get me narcotics.

    One weekend it became difficult for a catheter to go through sphincter easily and Hospice did not call me back for three days and wound up in ICU, ending up with a super pubic.

    The last time had a super pubic my body rejected it and had to go to intermittent catheterization. After being discharged in the middle of March, had no doctor, no prescription, no coverage, and no help.

    If I had been alert and coherent could have told them how to mitigate my bladder spasms when catheterizing. If they had held the catheter in place once they got it past the sphincter muscle it would drain my bladder following problems would?ve never occurred.

    Catheterize me for 300 mL before my bladder spasms pushed the dam catheter out And the sonogram show 1200 remaining. I have to hold the catheter in place or my body will push it out while it?s draining.

    Unfortunately was so totally wiped out and without the energy could not take control for the first time in my injury, and am paying the price now.

    While I was in ICU my blood pressure crashed and the stupid nurse said I was NPO and wouldn?t give me my blood pressure medicine. Would let me talk to his manager or put the bed in Trendelenburg.

    At the 7 o?clock shift change the first thing the nurse did was put me in Trendelenburg and gave me the medicine.

    Don't think of been a more stressful situation. The spasms that were gone years and years ago are back with a vengeance. Taking Valium since breaking my neck and have not had any since March. The spasms that were gone years and years ago are back with a vengeance raising my pain an order of magnitude


    Lost the ability to open the garage door or see my cameras. Lost my network and cell phone does not work, No Internet, No Landline totally isolated and not connected to the outside world.

    Not lying in bed till I die in this kind of pain and stress. Blood pressure goes from 260/140 to 70/40 in seconds, bending my spine in any direction hurts. So if I move it hurts and they told me I would have no motor or sensory function below my level of injury.
    Will
    With the ocean in the front yard and the Lagoon in the backyard, it was paradise to grow up here: the gateway to a prolonged death.
    https://www.google.com/url?sa=t&rct=...rAnng4nExfwW2W

    Nobody wants me.

    My parents didn't even put ramps in the house for me, two wheelie to get in the front door and my girlfriends on their first visit freaked at holiday meals, showers with a garden hose in January outside, adding another wheelie.

    In today's business model for medical services you get one point in compensation for one visit for an able-bodied person. Taking care of a quadriplegic such as myself, gives them no more compensation a lot more additional work and a risk factor.

    Who lives by themselves since breaking their neck has no family and the medical issue is autonomic dysreflexia caused by the pain of my broken body. When getting out of bed my blood pressure goes to 260/140. However, my normal blood pressure is really low having actually got it to 40/28 lying down.

    For with much wisdom comes much sorrow;
    the more knowledge, the more grief.


    A nurse showed up and my garage door opener would not work, could not let her in.

    Lightning strike on the pole outside my house took out the cable, Internet modem and router.

    Lost my network - leaving me no V/IP telephone - can?t chat or email.

    Totally isolated and not connected to the outside world.

    Got hit again and lost my router, landline telephone and phone modem. Less than three days between it and I have UPS?s back there, sigh? Kick a dead horse.

    So very tired, my 02 is low and have been taking a lot of Proamatine because can?t keep my blood pressure up and I?m always thirsty, back to over a gallon a day.

    Many C6 injuries, a stasis that will be with me in my entire life, floating up facedown, past the break, and no sense of urgency. New I had to roll over and breathe. Just hadn?t figured out how to do it yet.


    Had these questions prepared because Palliative Care will no longer be able to see me. One of their doctors, quit one Friday afternoon without any notice and since they can?t continue to care for me when I don?t meet certain medical requirements see the part about the esophagus.

    Just like my parents nobody wants me. The doctor lying to me unnecessarily just so they can get out (responsibility) as quick as possible.

    What do I do? He is going to write me and my general practitioner, Dr. X a letter.

    What are my options? Not many with the opioid crisis.

    Not to hold you to it, but what would you estimate my lifespan to be? Six months, six years. Unfortunately, he has my disability classified as a degenerative muscular skeletal disease that would eventually deteriorate my esophagus muscles and then the ability to swallow. There is no DMS code for quadriplegics such as myself.

    Should I stop fighting and I is it inevitable the near future? Told me that I will die from infection, skin, UTI is or pneumonia, in that order. Didn?t like that answer either.

    Asked if .25 ?g of fentanyl +20 mg oxycodone three times a day out of the range? He told me they were is an opioid crisis and I said ignore the opioid crisis and just how you would treat me. Told me that that level of narcotics was relatively low for my situation.

    Monday, one night call to see when the doctor was coming and they said tomorrow for the last time went to sleep at 10 PM woke two hours later and have not been asleep since. Took the value as an anti-spasmodic because of the severe spasm must for me out the chair in bed, etc. now my muscles have atrophied and can no longer do that but now my life is incredibly stressed but I?m already on diazepam.

    Have been taking Valium since going up and over the rails in rehab 1983 and now find out it's a "stigmatized" drug and have to get another special Dr. He said take less value and agree.

    Some of the details about my low 02 and my inability to keep my blood pressure up and other things that we discussed that he has no clue about. So it appears the answer is press on. For now.

    Wish I could hire someone just to be nice to me and didn?t have to fight so hard but keep running into the difficulty of accepting help.
    Last edited by SCI-Nurse; 07-13-2019 at 02:11 PM.

  2. #2
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    I can relate to many of your issues. In hospital 8 yrs ago after injury, I discovered how horrible and even ignorant many medical personnel can be. From docs playing politics to sadistic nurses. This was just the beginning of a continual nightmare. Although I was good/helpful/supportive to all my family, it seems I require too much help from them, therefore I'm forgotten. Too many stories to tell, just say I was fooled about my family dynamics. Unable to feel hunger, once I became too weak to feed myself, BP dropped to coma level, I was at peace and slipping away. Neighbor lady happened to drop in on me because she knew I had no one. After a stay in ICU, then back home brought me back to routine suffering. Anger and depression takes over sometimes. People do not listen so i have a new rule, nice speak 1 time, asshole voice if I must repeat. What're they gonna do, not help?
    Doc kicked me off Valium when she found THC in a blood test. Miss that combo of relaxing meds.
    I've been selling everything I can to pay people to do things I once did with ease. 80% of those I hired were either sorry P'sOS, or crooked/robbing me. I have a very low opinion of most people in the world now. There is no correct/complete answer or solution to any one problem, multiple problems are torturing me in today's narcissistic world. I am narcissistic now because I must be to stay alive.
    Bipolar daughter helped for awhile but she scares me so I don't call her. No ones cares enough to attempt to understand my situation. I know none of what I wrote helps your situation. I'm just saying your not the only one in this nightmare. Don't let people treat you like you are the only one. I have lost my verbal tact. If I am told a lie, get treated like I'm crazy or stupid, get ignored, or any other thing I don't like, I SPEAK UP, even in public. This goes for docs, therapist, handyman, or anyone. Again, what're they gonna do, not help?
    I live in a small town and once or twice a week, I get a meal delivered from our community center. Didn't ask for it, a neighbor does it out of kindness. So, there is some good left in the world.
    I would love to live near any water bigger than the creek near my home, or in the mountains. However, health care and assistance can be sparse in those areas except some old folks retirement homes (very expensive). My plan is to be as independent as possible, as long as possible. Now that is diminishing, I'm selling things (cheap) I don't need or can't use. Next step is to relocate somewhere more help is available. Need a lawyer and will to insure those that abandoned me get nothing. Not a rich man but I won't need and don't want family around when I go.
    I try to be thankful/grateful/cordial as much as I can. Very hard to be that way sometimes.
    Finding good docs is harder than I thought, pre injury. Fortunately I have several hospitals 30 min or less from me. I have on one occasion went to a new doc when my neurologist wasn't listening to my issues. Later I went back to that neurologist and her attitude was much better. After all, we are only a customer with a number. When docs get appt cancellations or lose customers, their hospital will ask them why. Hospitals want a 10 minute -15 minutes MAX per patient doctor time limit, so they are not innocent in our suffering. Sometimes I have many questions in need of attention.
    Tis the world we live in.

  3. #3
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    Tired of fighting with no pain pills. I move less and breathe less just get weaker

    Can not use hospice because I do not have a end-of-life date.

    Having troubles with health care agencies, believe they are scared of me turning into custodial care. Is that a reasonable supposition? Or is the root cause the opioid crisis?

    Have a lady who comes in in the morning and the evening and have a girl in the guesthouses willing to do anything. When getting in the wheelchair, my blood pressure goes 260/140 pain takes hours to go away and not going to become a drooler by stroking out.

    Do I need to get some sort of agency in here or why doesn't anybody want a C6 quad who lives by himself? Why does somebody need to live with me?

    The doctors don't like me coming in the gurney and it cost me $200 a trip. How do I go about getting narcotics? Don't appear to be use a large amount, do I?

    :-(
    Last edited by SCI-Nurse; 07-13-2019 at 11:53 AM.

  4. #4
    Chris, please remove your identifying info for attachment above.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  5. #5
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    KLD:

    Was hoping you would comment on my situation and give me some direction for me to pursue.

    As for the identifying information, everything in the post is public record, used to be in the phone book. City of Melbourne public record Then Google the name gives you everything and more.

    Deleted what I thought thought was personal information, but if you don't mind, could you rub out my last name or anything else you think I should please.

  6. #6
    Cris. Do you have 'Paint' or such? Cut from your original and re-post the edited copy image?

    Maybe I can do this quicker for you? If this helps, I have removed your I.D, age and Doctors I.D also. Copy and substitute if you wish.

    If I have over-stepped a mark please inform me and I will delete.

    Subsequent: Cris has OK'd me leaving up his edited medical report
    Attached Images Attached Images  
    Last edited by slow_runner; 07-13-2019 at 09:24 PM.

  7. #7
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    Thank you for the help, but in the long term, if they want to find out that information anybody can. Do appreciate removing my birthday, again public record. Google my name and you get 10 times the information, from 10 different sites.

    This time found a site calculating my net worth. It was incorrect, but did contain my correct name, address and phone number as well as my other properties and appeal to the fifth circuit court.

    Believe everybody should Google their name at least twice a year, check their credit score through credit karma and credit Sesame and get a report from annual credit report.com.

    You no longer have any privacy, all public records are open on the Internet. But

    Privacy will be the next big political issue to be resolved and Congress, bought and paid for by insurance companies, be a big battle.

  8. #8
    Regardless, it is a violation of CC policy. I will delete your attachment and leave the redacted version.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  9. #9
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    Quote Originally Posted by Cris View Post
    KLD:

    Was hoping you would comment on my situation and give me some direction for me to pursue.
    could you rub out my last name or anything else you think I should please.


    Wow, KLD:

    Hope everything is all right, but in response to the privacy concern, replied with a request for help to "rub out my last name or anything else you think I should." After someone did this, thanked them and thought the matter over with some advice on sites to check regularly concerning privacy.

    Thought your reply was caustic after asking for help removing the content, which they did, should have satisfied CC requirements and thought you would " comment on my situation and give me some direction for me to pursue."

    Which may not meet CC requirements but sure thought it was the intent.

    We may not always agree but have always respected your opinions and advice and am surprised at your unnecessary aggressive enforcement of the rules rather than guidance on spinal cord injuries.

  10. #10
    As a moderator, I am expected to enforce the rules for use of these forums, and as a member you are expected to comply with them. Take it up with Jim or Dr. Young if you have issues with that. No one is forcing you to post inappropriate personal info here, and some of your remarks about others border on liable.

    Who is paying for HHA agency care for you? Why can you not use private PCAs?

    Have you ever complained to hospital pts advocates or up the chain of command?

    Are you aware that the use of Trendelenburg for hypotension has been discontinued by experts for several years now?

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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