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Thread: Bowel obstructions or Perforations

  1. #71
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    Thank you i do as well. I am having another investigation done thru the Board of nurses. There were just too many breach of standards broken and it's not ok. Canada has amazing health care and the doctors and nurses were exceptional up until 5 days before she was io be released

  2. #72
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    Hi. I am deeply sorry for your painful loss. My heart is going out to you. Sorry that I didn’t write here earlier. Only yesterday or so I found out about you.
    my beautiful hero, love of my life, Phil, passed away on Oct 2. My soul is bleeding from endless pain. You can read about his last fight and about my fight to be his advocate in here http://www.wegeners-granulomatosis.c...ggren-257.html starting from post number 2564 and continue here http://www.wegeners-granulomatosis.c...continued.html
    we met here in the forum about a year and half ago.
    He passed away in Foothills Medical Center in Calgary. Actually, they killed him. it shouldn’t have happened. They did so many fatal mistakes, which eventually killed him. the main are those:
    1. the med that killed him eventually, as I suspect, the fentanyl (narcotic, opoids, pain killer) - they didn't prevent its farther damage after he almost died from an over doze of it, a day and half before. Which is malpractice by itself. plus the fact that they shouldn't have given it to him at all. It’s a med that is not allowed to people with respiratory problems. It suppress the breathing. He became more and more short of breath because of it and we didn’t know why he became so. No doc stopped to consider this option.
    2. the infections that he got there, like Ecoli that almost killed him and brought him to the ICU and the fact that even tough I asked from day number one to keep him in a clean room they didn't listen to me. I had to tell nurses and stuff at least 4 times a day to put on gloves when they treat him.
    The infection of your daughter is also a neglect that shouldn’t have happened. They should be totally careful with immune-suppressed patients, but they are not.

    3. the fact that they didn't consider his wg as a factor that might be active only until it was late, only one vasci docs saw him only once at the ICU, when it was too late. he didn't come back to follow his case. no one before. no one after. the fact that I begged for vasci doc every day and no one came.
    I also think in retrospect that the holes in his lungs that caused his pneumothorax and brought him to the hospital was wg-made. But no doc considered this an option.
    What can I say about the health system in Canada after being with him in hospital 8 weeks and 2 days ? : ignorance, arrogance, neglect and malpractice. The life of a man worth nothing. It a shame. I am mad at them. And no investigation. Is there a way I can ask for an investigation of his case ?
    Btw. I have colon involvement of wg. Its caused me horrible diarrhea, loss of weight and pains. No obstruction. No bleeding. But this info is too late for your daughter.
    I am sending to you warm hugs from the bottom of my heart and crying with you, for your daughter, for my sweet Phil, and for us, who remain here, with never ending pain….
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #73
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    Quote Originally Posted by dodi.houghton View Post
    link isnt working for me.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #74
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    I'm so sorry to hear about Phil. I knew of him from some of the groups i joined. He was very loved and had many ppl following. His journey. It's one thing to grieve the loves of our lives but when it's the fault of the hospital, doctors and nurses it's double the pain. My daughter was on fentanyl as well and I never knew it was not to be administered ughhhh can you im me?

  5. #75
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    sending you pm in few min
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #76
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    Well the Medical Records are here ...if there is anyone that can help with medical terms when I'm stuck. It would mean the world

  7. #77
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    Dodi I am so sorry for your tragic loss. What a shocking thing to have happened. I have had issues with bowel obstructions for many years but have been very lucky in that my specialist knows exactly what to do. When they strike I quickly go into shock. The pain I can only describe as feeling like the worst kind of childbirth so I can relate to what your daughter said, your organs being torn apart inside. So far I have not had to have surgery. I was able to get over all obstructions by spending a week or 2 on a drip in hospital with nil orally and of course injections against the pain and some anti spasm stuff.

    It's been a shock for me to read once again how quickly this disease can strike and get VERY nasty. I am glad people shared about the effect of Prednisone and RTx on the bowels or the symptoms. I have not had any major issues with my bowels since I started treatment early Feb this year but this has given me another incentive to get off the pred as fast as possible. In my case Wegener's has mainly affected the digestive system, mouth, eyes and sinus's. My lungs and kidneys are ok. Nobody has ever checked my bowels for Wegener's. In the past it was thought the obstructions were caused by adhesion, IBS and then I was diagnosed with IBD but my current Gastroenterologist seems to think all my problems are due to Wegeners. As I have read here on the forum that it is not always the case that you can find the evidence in the organs I tend to agree with her. Since treatment started many of my problems have improved and so I must assume the treatment is doing something right. Hence to me its not such a big issues now to find granulomas to "prove" that it's all Wegener's.

    It's devastating to think that negligence or ignorance led to your daughter's death. I have always battled with myself as to what to do in such cases. My father's life was dramatically shortened due to an accident at the hospital. He had been on blood thinners for years and then a home nurse (who had been rough a few times before) perforated his bladder when trying to insert a catheter, causing haemorrhaging. That lead to him being hospitalised. The hospital stopped the blood thinners (of course) and then tried to fix his rapid heart rate (a fib) which was the reason for the blood thinners. They gave him meds to slow down the heart. One weekend his heart rate was below sustainable level but the nurses despite doing frequent tests, continued to give him the drugs to slow it down until his heart stopped. It took 15 minutes to resuscitate him after which he spent a week in an induced coma, on ice, in an effort to minimise brain damage. He had not been diagnosed corrected at that stage (dad suffered from MSA) but was being treated for a multitude of diseases which in the end he didn't have as MSA covered all the symptoms. Anyway no cure no treatment for that one. So after his accident in hospital he went downhill rapidly and died within 7 months, only left the hospital for 2 weeks during that time. Now in my father's case, when we became aware that most likely he had MSA it seemed that the nurses did him a favour because many MSA patients end up in a coma for years where they are still aware of what is happening but can't communicate any longer. That would have been shocking for Dad. As it was, the last 7 months he had a tracheostomy, stomach feeding tub, pacemaker, catheter and many drips. He caught bugs in the hospital that seemed impossible to get rid of. He spent his day stretched out in bed unable to move himself not even his arms. It was awful so in a way I didn't think he had anything to look forward to. Anyway as a family we decided not to pursue the negligence. We felt if anyone is to blame it's the government for keeping our hospitals understaffed. The nurses were all run off their feet and nobody deliberately let this happen. Yes ... someone should have contacted the doctor with his blood pressure and heart rate results before giving more heart pills ...

    But in your daughter's case I would feel totally justified in taking action against the negligence. Not that it will bring her life back but it may just safe someone else's. So sorry Dodi. I hope you get some peace and please don't beat yourself up over this. With the fast rate this all happened there is not a lot you could have done. It's such a rare disease and seems to strike everyone differently. My condolences to you and your family.
    "Slow and Steady wins the Race"
    All the best, Inge

  8. #78
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    Thank you so much and to tell me about your story. I still cannot wrap my head around it and how they would not take her serious. She was immune compromised from all the meds and was told by the doctors them selves that precautions are necessary be sir the meds mask other symptoms. Not to mention the fact she was just finishing antibiotics for C-Diff. She was in so much pain and was ignored. She was told it was in her head and that she had underlying issues and was having rebound pain from coming off of IV meds because she was switched to oral meds. She was supposed to be going home in the never couple of days as well. One of the things that was said at the last meeting at the hospital was that the nurses weren't used to having someone so young in the nephrology ward. So i guess that meant she didn't deserve the same kind of treatment or care that the other patients receive . I requested some of her medical records of the last 2 weeks while she was there, but I just can't bring myself to open the box 😞

  9. #79
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    Dodi maybe her age gave false confidence that perhaps she was stronger and less fragile / ill than some of their other patients. I had C-diff some years ago and in my case it was thought to have been caused by long term antibiotics. But that awful pain and all her symptoms should have alerted the staff that things were seriously wrong. Sometimes I think that staff lose their overview. They focus on the symptoms that they are used to dealing with in whatever ward you end up with. I remember Dad because of his multiple supposed diseases had many teams of specialists all looking after their particular part of the puzzle and little attempt was made to coordinate all this. Doctors or other medical professionals could walk in and prescribe or make decisions without referring to someone who was in charge of the entire patient. Hence one person would order x and another one would cancel and order y instead. They kept copious notes in fact so many notes that I doubt anyone had the time to read them through. I can understand it will be difficult for you to read her records
    "Slow and Steady wins the Race"
    All the best, Inge

  10. #80
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    I believe it was partially her age and how she shocked the doctors at how quick she responded to treatment considering she was stage 4 when she was diagnosed. And their focus was on her being discharged.

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