Home Forums All Categories Metastatic Bladder Cancer Pain Management—13 days and Counting—-VERY FRUSTRATED!!!!

  • Pain Management—13 days and Counting—-VERY FRUSTRATED!!!!

    Posted by momof4 on May 15, 2008 at 8:38 am

    Hi All,

    Tomorrow will be 14 days since my husband was voluntarily admitted to the hospital for Pain Management issues. During this time they have yet to achieve the goal. We have had issues of Misdiagnosis of his bone lesions, a scary rise in blood pressure, and then a scary decrease in blood pressure, Orders not being followed, (or written down for that matter). A Cardiologist saying that he doesn’t need the extra fluids it is raising his blood pressure…A resident telling us that since he is now getting Radiation that he needs the extra fluids…and the Radiation Oncologist saying that is not true….UGHHHH!!!!I think that Teaching hospitals are WONDERFUL for curable types of cancer, but I am having second thoughts about a teaching hospital for end of life issues/pain management/ etc… He is now receiving 80 mg of Oxycontin 2 times a day and 100mg of Oxycontin at night. He can still have 1mg of Dilaudid (intravenously) every 2 hrs. if the pain breaks through…I don’t understand why they didn’t increase his Fentanyl Patch ( It lasts 3 days for God’s sake) He was on the lowest dosage of 50mg…and Fentanyl is available up to 250mg…they keep playing around with the Oxycontin, and after 14 days don’t have it right yet???? Is this normal? Am I crazy? He was honestly on less of a roller coaster pain wise at home…Yes, I was up every couple of hours…But shouldn’t they have figured this out by now?

    I am hearing of MRSA here on the forum…Usually after or during a hospital stay…I know that Pneumonia is a killer in this situation…He needs to get out of that hospital ASAP…what should I do here? I do not want his used as a guinea pig for the new residents to figure out how pain medication works!!! I also can’t call in Hospice…If I do he can’t get Radiation…I don’t think we are at Hospice stage yet…Any suggestions? I am losing sleep and slowly losing my mind….

    Thanks, Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

    replied 16 years, 9 months ago 10 Members · 11 Replies
  • 11 Replies
  • 's avatar

    Guest
    May 20, 2008 at 3:38 am

    Karen,
    Well its one year since you and I met on the forum, more like around July, but one year from their symptoms showing up, Angelo was in one place and you in another,now your all together, and working thru this situation that was probably the furthest thing from your mind one year ago. I pray you continue to have strength, as we all know as caregivers we just do what we need to do, whatever it takes, and you are certainly at the top of the list of caregivers. Ginger Beane

  • momof4's avatar

    momof4

    Member
    May 20, 2008 at 1:36 am

    floshoe,

    That is the reason I post. In the hopes that someone else can learn from our experiences…I do suggest the Fentanyl Patch for pain…It doesn’t effect the brain IE…he can keep his wits about him…this is drastically different from the Oxycontin…Also, radiation for pain is VERY effective, Especially when there is a larger area to treat. My husband has had no side effects at all from radiation…I do not know if this is true for most…he is fatigued…but I don’t know if that is from the pain meds, radiation, or the cancer in general….possible a combination…

    I wish you and your family many pain free good days to come…

    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • floshoe's avatar

    floshoe

    Member
    May 20, 2008 at 12:53 am

    Hi, Karen.

    I am new to this board. My dad has metastases to the same place your husband does, but we are just getting into all this.

    I wanted to let you know your post was very helpful to me. I am going to talk to dad’s oncologist about bringing in a pain specialist now, instead of waiting until a crisis. The only reason I knew even to suggest this was your (terrible!) experience.

    I keep hearing from people that cancer specialists manage pain SO WELL these days, but the story I am hearing from actual patients and caregivers is that it is not quite that simple.

    I hope you all are doing much better.

  • marie's avatar

    marie

    Member
    May 18, 2008 at 6:57 pm

    Dear Karen,
    Always thinking of you and keeping you in my prayers.
    Hugs,
    Marie

  • leigh's avatar

    leigh

    Member
    May 16, 2008 at 8:58 am

    Hello Karen,

    Here’s hoping Angelo stays pain free and comes home quickly. Great to hear he is able to be more active in his own care and eating sushi…

    Amazing what pain relief can do eh!!

    Thinking of you guys…
    Leigh


    Leigh, 39
    Dx July 2007
    TURBT July 2007
    RC/Neobladder ,Studer Pouch, September 2007
    Erasmus Centrum Rotterdam
    TNM Classification: pT4 N2 Mo
    4 cycles aduvant chemo Gemzar & Cisplatinum
  • tate's avatar

    tate

    Member
    May 16, 2008 at 4:14 am

    Karen,

    I am so glad to hear today was a good day and of course the prayers are still coming. How funny is that raymond?? my favorite 2 episodes are- the car in the livingrm and frog lady. I hope Angelo gets to come home soon. please take care of yourself!!
    -tate

  • aimeth's avatar

    aimeth

    Member
    May 16, 2008 at 2:18 am

    Hi Karen,

    Just getting back into the group and first of all I am sorry to read your dilemma. Hospital stays usually become stressful, tiresome………..

    With my husband, he seemed to have many issues with the pain. While his doctor kept increasing the oxicodine the pain seemed to increased as well. When at the hospital we learned to hire different doctors for different situations, like infectious disease doctors for infections, pain management doctors for pain, well it really worked for us. And they worked well together.

    Hope things get better for you, your husband and family.

    Take care,
    Aimeth

  • momof4's avatar

    momof4

    Member
    May 15, 2008 at 11:20 pm

    Rosemary,

    Thank you for suggesting the patient advocate….FINALLY our concerns were heard….
    Angelo was put on the Fentanyl patch 75 mg. Dilaudid for breakthrough, Ambien for sleep…What he was on when he arrived except the Fentanyl patch went up 25mg…He is feeling so much better tonight. He showered (with only a little assistance, which was more for my benefit because I was scared he would fall) he shaved himself, and is as we speak eating a Sushi dinner, and watching Raymond and laughing!! YEAH!!! We are aiming for a release date early next week. Please say prayers, and cross your fingers that we make it through the weekend with no other major issues…

    Thanks for your support Pat…It was invaluable! And thank you Rosemary!

    (((Hugs)))
    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • mssmr's avatar

    mssmr

    Member
    May 15, 2008 at 9:54 pm

    dear Karen — I’m so sad to hear what you and Angelo are going through there. I agree with those who suggest that you contact the “patient advocate” or whatever they call the position there. I needed to do that one time and did have my concern addressed quickly and with utmost respect. What a relief.

    I, who usually have no ahortage or words, am having trouble now, but I know you will continue to move mountains for your beloved. I do so wish, though, that you can tap into a solid professional advocate there who can ease the challenges — I’m angry on your behalf, Karen — In support — Susan

  • bobmac2's avatar

    bobmac2

    Member
    May 15, 2008 at 12:16 pm

    Oh Karen, how sad. I agree with Rosemary- get to the head ‘honcho’ & voice your concerns about their treatment. That was the only way I got action for Bob last fall. When I ‘lost-it’ in the reception area, I suddenly had help coming from all corners. I’m following all your posts & thinking of you often. Take care, Lorrie

  • rosemary's avatar

    rosemary

    Member
    May 15, 2008 at 10:17 am

    Wow, Karen!! This sounds like a living nightmare. There is no communication between Doctors who are managing your husband’s case!

    Is it time to talk this over with a hospital liason?

    Someone needs to hear your concerns, I think.

    Take good care.

    Best regards,
    Rosemary


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006

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