Discussion Board Forums General Discussion Don’t you wish…

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  • #40393
    marions
    Moderator

    Bob…..I am hoping not to have offended you with my comments, because it definitely is not my intention to do so. In fact, the opposite is true. The knowledge shared on this site is invaluable to all therefore, I can’t think of another forum presenting to people the amount of wisdom and experience collected here. I believe that this is directly related to the fact that this board prides itself in the expression of free speech. Personally, I think that this disease brings with it an array of issues including, the one mentioned by you. Have the comments made by the IR been included in your report? And, this is what I have been leading to with my comments. A disease is plenty enough to deal with; the additional responsibility of overlooking our care adds a whole other dimension to our illness. However, if the patient or, advocate does not take on this extra responsibility then the likelihood is high for the patient to bear consequences which could have been avoided in the first place. I am hoping very much that your medical records now reflect the correct treatment procedure necessary. In fact, I would make sure that it does. Additionally, I would have a copy of the report on hand in order to assure that these procedures are followed. Thank you for sharing, Bob. Your experience and your kindness of sharing with us is an invaluable gift to all.
    Best wishes,
    Marion

    #40392
    32coupe
    Participant

    Hi Mary,
    There are apparently two different scenarios. I have experienced rigors and then temperature spikes which have led to hospital stays. Blood cultures indeed show infection, typically some kind of e-coli. Like your husband’s, these came out of the blue. Then there have been numerous times when they change out the ‘tube’ and the disturbing of the bacteria in the intestine and liver causes the ‘chemical reaction’ which leads to rigors. As far as foods, I try to eat ‘healthy’ but have no issues with any foods. Thanks for the good wishes. I pray for people on this website daily…

    Charley,
    Congrats indeed on your anniversary. My next anniversary is Dec. 18 which, Lord willing, will be 14 years (but then who’s counting?). I believe the Lord is with you as well. When I was first diagnosed, I felt that I had ‘heard’ God tell me “Embrace this. I will go through it with you”. And I have been aware of His presence nearly daily giving me hope and peace without having any idea where this experience would take me or what the outcome would be. I too have been blessed with prayer and humbling support from my family and church family. Praying for hope, peace and “remission or cure” for you…

    bob

    #40391
    charley
    Participant

    Bob,

    My wish is the same. It seems that we go through so much and never know if some things even helped. I hav been blessed but I like everone else are looking for the magicwords of remission or cure.

    How long have you been going through this journey? I had my 1 year anniversary July 29. Things are going as well as anyone could expect. I believe the Lord has been with me throughout. The prayers and support realy help keep me positive.

    Best of luck to you.

    Charley

    #40390
    marylloyd
    Participant

    Hi Bob,
    Your posts are very interesting to me as my husband just went into “rigors” and chills yesterday morning after getting nauseated and vomiting. He can be just fine one day and the next day be shaking and chilling etc., weak and too sick to get off the couch. He usually doesn’t have a fever when the rigors start but after he settles down so I can take it, he usually has spiked a pretty high one.(yesterday it was 102.7). I always thought the rigors were from infection. I never heard this latest explanation. I do try to get some Motrin in him and that does seem to help stop the shaking. He’s still feverish today and weak so the Drs. put him on antibiotics. Hopefully no hospital stay this time. Bob, do certain foods bother you? My husband gets these “attacks” everytime he eats too much dairy or fried foods It was way too much ice cream this time. I think they just clog him up which causes cholangitis. Keep us informed as you continue your treatments. You are a rare long term survivor and we wish you the best.
    Mary

    #40389
    32coupe
    Participant

    Hi Marion,
    Hope I didn’t come off as a whiner or complainer. I didn’t mean to – just expressing some recent frustration and wishful thinking. When I was first diagnosed I followed the course set by the various docs without question and had exceptional success. Thank you doctors and thank you God! Recently I’ve had a series of bouts with sepsis due to blockage of a duct. A plastic stent was placed which was replaced every 6-8 weeks which usually caused ‘infection’ which was treated with a hospital stay, IV anti-biotics and then followed with 10-14 days of oral ant-biotics. I had a procedure Weds. to change out the tube and during a discussion with this IR doc he stated that these ‘infections’ after the tube change were more than likely not infections but the symptoms (extreme chills/rigors) caused by a reaction from some kind of chemical released by bacteria disturbed during the procedure. So, after the procedure they kept me for four hours for observation and sure enough, uncontrollable rigors set in as before but this time per the IR docs orders they treated me with a dose of demoral. Within a couple of minutes the rigors ceased. I napped for a couple of hours to sleep off the effects of the demoral and was released feeling a little groggy but fine. I now realize that I was hospitalized at least a few times and treated with various anti-biotics needlessly. And I always had reactions to the meds – usually nasea, diareaha. This doc also wondered why the tubes were changed out so often. Again, my treatment over the last several months may have looked different had this IR doc been a part of the discussion. Knowledge is power…

    Blessings and healing to all,

    bob

    #40388
    marions
    Moderator

    Bob

    #40387
    devoncat
    Participant

    Bob,
    In the last year and a half, I have had Swedens cc specialist,a univiersity hospital liver cancer specialist, surgeons at 3 large hospitals one being the Karolinska Institute where the Nobel prize in medicine is decided, 2 oncologists in Kalmar and 2 surgeons in Kalmar. All with different and varying ideas and suggestions and all with the supreme desire to keep me alive. It is confusing and hard to take in. I do trust them all even with their different ideas because they want what is best for me. And I do notice that those doctors who have met me are willing to be more aggressive than those who just consult. So I do understand and it is important that we are pro active. I dont think a meeting with my oncologist goes by that I am not questioning her on something I have learned here. But then, that just adds more gravy to the stew to think about.

    Kris

    #3834
    32coupe
    Participant

    That you could get all of the medical ‘wizards’ working your case in the same room at the same time for a comprehensive discussion. I don’t know about you but in my most recent round of issues, I have on several occasions gotten contradictory information from one source and then another. It is frustrating and I have found yesterday that perhaps some of the treatment I have suffered through over the last ten months was unneccessary or even harmful. So… as a result, I have decided to become more pro-active in my health issues. For instance, when one of the doctors conveys information from another doctor with whom they consulted, I have contacted that doctor directly to clarify their opinion. This is not about lack of trust of the medical profession. All of the doctors with whom I’ve had contact have been hard working, very honorable people. But on a couple of occasions, it appears that they got it wrong…

    Peace, Grace and Healing to all,

    bob

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