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Thread: Here we go again

  1. #1

    Here we go again

    Here I go again



    I really can't talk about what's going on right now unless I started to beginning. All this really started in August 2015 when I started getting sick and just feeling like I had to throw up. I wasn't able to get anything out lying down in bed, so my wife and roommate decided to get me up on my shower chair hoping that gravity would help me get it out. However, once I sat up my stomach ballooned out and it did not look right. So I go to the hospital, and they place a G.I. to up my nose and proceed to pop out 3 canisters worth of stuff out of my stomach. After multiple tests, CAT scans, x-rays etc. they determined that I had a collapsed duodenum. Now with that I wasn't able to eat or drink anything, that included all my medications. Since there was no of the equivalent I was going through withdrawals. They decided to give me Ativan to help relax me so I could sleep. Big mistake! It turns out that I had an allergic reaction which made me crazy, schizophrenic and hallucinating for about 4 days.

    My surgeon had to go in laparoscopically to correct the duodenum, however when he was in there and had to move my stomach a notice that part of my stomach was necrotic and fused itself to my abdominal wall. So he had to split meal and take out about 25% of my stomach. So basically I had a partial gastric bypass and did not need one being a quadriplegic. So now I was having to eat smaller meals all day long to keep everything up.


    Now in August 2016 I had to have my gallbladder taken out. Because of the symptoms that I was having my G.I. doctor had me get a sonogram of it only to find out it was full of stones. So my surgeon took it out, the said he'd never seen one with that many Clickstones. Even after having it taken out all the pain and everything was still the same. Whenever I had that taken out they had the EKG leads on my chest. While they took all of those off except they missed one on the upper right part of my chest. When I got home We took it off and it pulled off the 1st layer of skin, leaving a sore about the size of a quarter.

    2017 was fairly uneventful, even though I was still fighting getting that chest sore to heal up. So we roll around to June 2018 When I had a little spot come up on my left cheek. It would heal up scab over, and then start weeping and come back. Just like the spot on my chest. I decided it was time to go see wound care. Well 1st thing the doctor pulls out his debriding equipment and started scraping away the dead tissue. He had to stop otherwise he was going to go to bone. It turned out that I had a stage IV under that scab that had tunneled! You could put a golf ball halfway down into the whole. He started packing it with the Mehihoney For a couple of days. I decided that that time by August for him to admit me into the hospital, at kindred in Mansfield Texas. And within a month, after lots of IV antibiotics, it went from the big sword down to hardly anything. I was all healed up by November.

    So now here we go to a new year January 2019, I get a bladder infection that was pretty bad. I go to the hospital for a week to get treated, and at that time I got impacted! Well after taking MiraLAX, nothing happened. They tried an enema through my colostomy, 2 days later nothing happened. So they give me a Mag-citrate and that burst the dam! I was already suffering from irritable bowel syndrome from the surgeries, so that set my Colin into very bad spasms. So my G.I. doctor doubled my Bentyl which I was taking, and sent me home. Well by the end of the next week being at home, my wife was asking me questions and I wasn't answering the way I normally do. She knew something wasn't right, so she got her cell phone and started recording me. I didn't know anything like what was our dog's name, what was her name and even more alarming was I did not know what my name was! I had a sheet and a quilt on but I was still freezing cold, they could not get a temperature. So back to the hospital I go, and once I get there they take my temperature rectally and it was 88?! When the nurse told the doctor, he said take it in my butt and the nurse said "that was From my butt". So it turned out that I had a severe bladder infection that went septic. So for the next 10 days I was going through hallucinations and schizophrenic tendencies. When my roommate/friend was looking at the side effects of the Bentyl, he saw that I was suffering from every single severe side effects. So my wife called and told them to stop my Bentyl. I was taking that for 4 years, and I don't know what kind of mental damage that has done to me. So once I came out of my font, I got pneumonia real bad. They decided to drain fluid off of my right lung and got 1500 mL of fluid. So after spending a month in the hospital this year, I was finally clear of everything. Well just last week I had that spot come back on my butt so I have an appointment tomorrow with my wound care doctor again. Now I got something that they can't figure out is when whenever I turn to my left in bed I start getting dizzy. Every once in a while that will happen when I turned my head to my left. I have had an ultrasound of my neck done but they did not find anything.


    Now something that really chaps me is that my GP for 8 years would not see me anymore because he was not in my network and I had to go to the one assigned by my insurance, which this Dr. did not believe in giving me my hydrocodone, wants me to go see pain Management. She also did not believe in prescribing me my Temazepam for my sleep!

    I know this was kind of long but I just wanted to share because I have no one else to talk to about all this. Thanks
    Last edited by crppled007; 06-25-2019 at 10:32 PM.
    C4 incomplete since 1985

  2. #2
    Senior Member
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    crrpled007- you have had way more than your share of illness for the last few years. Hugs to you and your wife as you try to endure all this.The thing with insurance and networks is so destructive to quality care.

  3. #3

    Read and learn.

    That's ok. That's what we are here for to read about other successes, failures, complaints and illnesses. I fell ill three years ago and I wrote about it here to share with others.

    This is a great forum to share your experiences in life living with a spinal cord injury.

    I read your story and I get the same crap from insurance company and DMEs. It seems like you need a special test or piece of DME and they deny right of the bat then your have prove your case all the bullshit you and your doctor have to go through. I have a good doctor that fights for me and I like her. She is recently new. My doctor I had for 24 years resigned from practice and I got a letter on Christmas Eve telling me this. So on Christmas day I am searching for a new doctor at the Cleveland Clinic. Months later I find out my doctor resigned from Mercy Hospital and joined Cleveland Clinic. All of my medical records are at his old office if I need an old test result such as a bone scan report.

    After this experience it is now law when you go to a doctor, hospital clinic or health care facility they are to give you a medical report for your information. I have a large 3-ring binder I keep everything in it in case my doctor resigns and I have to find another one but I seriously doubt it but I still keep my set records including test results and X-rays and their findings.

    I've been fighting this war with insurance companies for 32 years and they always give me a difficult time. It is never approved the first time, so frustrating!

    I hear you. Just keep on sharing your stories. You never know your story just might help someone else on this forum.

    Peace be with you, always.

    Ti
    "We must overcome difficulties rather than being overcome by difficulties."

  4. #4
    Well I understand about that, this September it will make 34 years for me. I used to have a doctor that fought real hard for me but he actually passed away. He was my doctor for 17 years, and actually my wife's doctor from childhood. The one kind it's like a country doctor, he never could retire. He was 80 years old with a walker, and have one room in the back that they set up For him where patients would go and see him in that room. And I never knew that he was in the 101st 82nd Airborne doing the 1st dropsIn World War II
    C4 incomplete since 1985

  5. #5
    Senior Member McDuff's Avatar
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    I go to UTSW for almost all my Docs. It's a bit of a drive, I'm NE of Dallas a bit, but it is nice that they have all my records available for all the Docs. And believe me, I have been in a lot of their categories. I have a GP close but he is only good for basic stuff, no idea of dealing with sci stuff.

    I go to the PM&R the most, they take care of my baclofen pump, and they are also my pain mgmt people. I have been using a "cocktail" of gabapentin and hydrocodone forever, 2 gabas and 1 Norco, 3x a day. This combo keeps my neuro pain, and my "mechanical" pain, that starts up as soon as I get out of bed, at a manageable level usually. Don't take more 'cause it doesn't do anything for me, but I do know for sure when I take less. On bad days I stay mostly in bed, my usual safe haven.

    We have tried adding pain med into my pump mixture, but it really doesn't do anything for me, so I am having them back it out, leave more room for baclofen which is needed for tone and spasticity. Even they are getting reluctant to prescribe opioids, and would prefer that the pump pain meds would do the trick, as the govt is getting all up in their business about scripts. Hope the day doesn't come where they drop the opioids completely. I know what works for me, and I have never gotten a buzz off of them, don't even understand the people who do, I've tried taking 2-3 at a time and I just get sleepy.

    That all said, they do know me, trust me, and work hard to keep things right for me, so if you run out of options, maybe give them a try.
    "a T10, who'd Rather be ridin'; than rollin'"

  6. #6
    Senior Member
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    Jul 2010
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    Leeds, AL USA
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    Only 8 years of SCI so I guess I'm a newby. 100 years worth of nightmare stories of how I was treated by med pro's and family the first 4 years. Dealing with things on my own has been tuff but better than some so called help.

    I can relate to solving an issue, then it or another arises. Then there are persitat issues that doc throws a pill at, then goes to next patient/pill customer. Sucks being SCI and sucks more dealing with docs who are afraid of insurance and government.
    Blame the opioid issues on those that abused the drug. IE; many were prescribed them but sold them, or stole them then sold them, and then there's the pill mill docs who's patients mostly sold their pills. I lost a nephew a few years ago due to opioid overdose. Having a real life tuff time, he found relief in opioids. Bad choice but no way to change it.
    Shorten the story; any abuse of anything usually hurts the legitimate user and it's purpose.

    Battling insurance companies only adds to any legit handicapped persons daily struggles. Insurance co. know this and have stats on how many people give up on a legit claim.
    Medical/drugs/DME costs denials verses their legal expenses are part of their evil formula based on history stats. The illegit claims only favours ins. co. denial in court (if it goes that far, usually patient dies before multi delayed court date). Sorry for the ranting but this stuff sticks me.

    UTI/bladder infections causes a form of temporary insanity/dementia. The infection gets in brain via blood. Ask any competent old folks home worker. When they see personality or function change, first thing they do is check for UTI.
    I've taken Mag-citrate before. It is an explosive dam buster. Painful till the dam breaks. Also something I've learned first hand, the GI system has a delicate balance and doesn't heal or correct itself quickly. It's a tuff road without a doc that really cares. If you are unhappy with a doc, find another. Convenience (near you) may need to be a secondary concern.

    I admire your fortitude and courage. Keep up the fight.

  7. #7
    All I can say is keep telling your story and keep fighting the good fight. There are plenty of us around to help - you just need to find that right person for you.
    I admire each and every one of you.
    ckf
    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.

  8. #8
    Senior Member
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    sir you are amazing with all u have gone thru thjis network is for the birds

  9. #9
    unfortunately we all get it. you solve 1 thing and another comes up it is the nature of SCI and it sucks!!! i struggle on the daily to stay out of the hospital, if it isn't 1 thing it's the other and quite frankly i am sick of it also. the last few months i have been struggling with bowel obstructions due to a massive hernia that needs to be fixed but i also need to lose about 40 pounds before they will fix it. i am working on it but it is a slow process.
    T6 Incomplete due to a Spinal cord infarction July 2009

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