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Thread: I'm HOME!

  1. #1
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    Default I'm HOME!

    Howdy from my very own soft comfy bed with my fat happy cuddly dogs in my own quiet house. I finally got discharged yesterday afternoon. They held me over an extra night because my bowels have decided to take a break, since they're stoned on pain meds. They gave me prescriptions for tummy stuff to help clear things out, but so far nothing major is happening. Praying this issue resolves soon!

    Birdie, you were mentioning the passing clots from the bladder. Yep, that was some level of fun I got to experience. Sounds like you had a great deal more blood in your urine than I did; although they flushed out smaller clots & bladder tissue, mine wasn't black like yours. I had a catheter in for 4 days, but they were so afraid of me getting infection that they didn't want to leave it in there. The urologist gave me Urelle (medication) to help numb the bladder. I see him in his office tomorrow to schedule the cystoscopy. Have to see the hematologist, too, to get CBC & see if I need outpatient transfusion. After my rheumy found out I was hospitalized, she only sent me 1 email in 11 days to ask how things were going. She never was in contact with my hospital specialists, not once. I had given her the phone number to the hematologist who was in charge of my care, but she never called him. After her putting me off for 2 weeks & almost letting me die, I don't trust her judgment & never will again.

    Birdie, you know how excruiating the cystitis pain is, so the "funny" part that my main issue in the hospital was fighting with the nurses over giving me my IV pain meds. It was a whiole saga with that! They felt my oral pain pills I take every day for my back should have been enough for the bladder pain. I was ready to strangle someone about a week in. I had to get the Clinical Nurse Leader involved & then STILL had a couple nurses give me crap. I swear, if the doc ordered it, said I could have it, & it's time I can have the shot - give it to me & shut up!!!!

    Thank you for all the kind words & prayers. I still feel pretty yucky & it wouldn't surprise me to end up back in the hospital soon.....but I pray that part is over for now! Take care of yourselves Weggies - and TRUST your own instincts. You are your #1 advocate!
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

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    Quote Originally Posted by txrepub4God View Post
    Birdie, you know how excruiating the cystitis pain is
    I never took any prescription pain medication, never never never, until... well you know...

    Teri, not to be a bummer, but it's probably not over. I say that as a warning so it does not drag you down too much if the really bad stuff starts up again. I assume you're still far from comfortable even now, but make sure you're never out of pain medication for at least the next couple months. Take the care instruction from the hospital VERY seriously. Keep your bladder empty as much as possible. And sheesh, don't resist going back to the hospital. Without it you'd likely not be here now.

    Rub the dogs for me.
    Gary

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    Teri,glad to hear you are home. I know you a not all better but I know you have to feel better out of the hosp. Take care of yourself and I would call your old rheumy and tell her "Thanks for everything !!! "
    Life isn't about how you survive the storm, but how to dance in the rain !

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    I can definitely tell that the bladder isn't 100% healed, because I still have the urgency & the second it hits I better run. ��. Plus, the Urelle (bladder numbing med) wasn't going to be ready until tonight, so I'm starting to feel the ache coming back when I pee. My hubby is picking it up tonight for me.

    I promise I'm not going to ignore any major symptoms. If I need to go to the ER again, I most certainly will & my husband has said he will not let me get that bad again, either. I think he was trying to trust my rheumy's judgment, as was I, because she hadn't given me a reason in the past to question her. However, with my cell counts down to a critical value level to where the lab calls the doc immediately & says this patient is SICK, she should have told me to go to the ER right that second. Instead, she told me to wait & get another blood test in a week. The day after that is when the bladder pain/bleeding started. If I had waited, I wouldn't be here today, and that is NOT acceptable.

    Thanks for all the help/info. I hate that you had to endure this as well, but glad I have someone to commiserate with! I am praying my cystoscopy is clear & also that the hematologist doesn't find any blood cancer, either. I see both specialists tomorrow. I might need a transfusion in a couple days - we'll see.

    Quote Originally Posted by Birdie View Post
    I never took any prescription pain medication, never never never, until... well you know...

    Teri, not to be a bummer, but it's probably not over. I say that as a warning so it does not drag you down too much if the really bad stuff starts up again. I assume you're still far from comfortable even now, but make sure you're never out of pain medication for at least the next couple months. Take the care instruction from the hospital VERY seriously. Keep your bladder empty as much as possible. And sheesh, don't resist going back to the hospital. Without it you'd likely not be here now.

    Rub the dogs for me.
    Gary
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

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    Quote Originally Posted by txrepub4God View Post
    my husband has said he will not let me get that bad again
    Uh, uh, uhmmmm, I'm confused? I thought he was deployed? Don't let him go, you need help. I had a live in nurse or I would never had made it.

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    Teri,hi. Just want to wish u well,glad you're home! Best to u,Teri! Deb.

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    Quote Originally Posted by Birdie View Post
    Uh, uh, uhmmmm, I'm confused? I thought he was deployed? Don't let him go, you need help. I had a live in nurse or I would never had made it.
    Gary, no, he's deploying in about 4 months. He's still here for now.
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

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    So happy you are back home with your pups and husband. I hope that your tests goes well and that you continue to improve. I am wishing you a speedy healing, with the least pain possible.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Saw this thread yesterday and then got distracted and forgot to reply! I, too, am glad you are home and cozy in bed with the pups and your hubby nearby. I'll be hoping for the best as your bladder problems resolve, and yes, keep the pain meds handy! I can't speak from experience but I take Gary's word for it. And if you don't know where to start with getting a new rheumy, ask around with some docs you trust, consult the VA, find others on this forum not too far from you, keep looking until you find the right one! Best of luck and healing to you!
    Anne, dx'ed April 2011

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    Glad to read that you're back home. Puppy love is the best medicine. Hoping all goes well from here.
    Linda
    dx September 2013

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