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Thread: My Mother has WG, it's getting worse…and nobody cares!

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    Default My Mother has WG, it's getting worse…and nobody cares!

    Hi,

    I'm new to this group. I joined because I need your insight and thoughts.

    First off, I'm an RN, we live in Baltimore and I work at Johns Hopkins. You would think we couldn't have been set up better if we were going to get a WG diagnosis, right? Wrong!

    My mother started having symptoms at the end of April of this year, 2015 and went right away to her PCP. Her PCP thought it was an upper respiratory something and put her on Bactrim and prednisone. That didn't work, so she went back and her PCP did the same thing again and referred her to an ENT.

    She saw the ENT maybe 2 weeks later, he did some blood work, but didn't draw a C-ANCA. Her PCP questioned this, and when my mother questioned this, the ENT's reply was, "Maybe your PCP should have done the workup!" This all occurred over Spring Break of this year, because I was away and didn't go to the MD with her. Now, all of this happened at Greater Baltimore Medical Center. He did, however, re-run the blood work, but at this point he had already mentioned WG as a possible, yet far fetched possibility, as it was so rare.

    Let me stop here and give you some history on my mother. Currently, she is 63 years old, divorced from my father (who has since passed away) and has been living with a long term boyfriend for more than 10 years…but it is a very strained relationship.

    10/2010-Diagnosed with breast cancer, A slow growing estrogen receptor cancer which required a lumpectomy and 12 radiation treatments-treated at GBMC
    1/1012-Arthroscopic knee surgery for a torn meniscus (at GBMC)--The doctor cut too much of the meniscus away and she got shingles the DAY AFTER the surgery. She had shingles on the inside of her knee from the incisions. She has had severe pain and swelling of the knee. She has been on progressively increasing amounts of pain medication since that time and the only fix is a knee replacement…which has not been had.
    10/2013-The same PCP accidentally wrote her pain medication prescription wrong. Morphine 15mg was supposed to be increased to 30mg, however, she wrote it for 60mg and my mother didn't check it before taking it. Couple this with the fact that she got her flu shot at that same MD appointment and had a vaccine reaction. All of this happened on a Friday. My mother was well enough to have my kids overnight on Saturday, but on Sunday evening when I picked them up, she was slightly weird (which wasn't always a strange thing, when her pain medication kicks in, she gets pretty goofy, generally, I send her to bed and have her sleep it off)
    10/23/2014-Her boyfriend did not call me or inform me that she got progressively worse over the next two days. At 8pm on October 23 (my birthday) I got a call from her boyfriend that she was in the hospital (at Franklin Square). He said that she was taken by ambulance early (6am) because she had been really confused, talking gibberish, making no sense, got up in the middle of the night and had fallen and broken her leg (compound low tib/fib fx near the ankle). He says not to go to the hospital that night because she doesn't know who people are. They would need for me to be at the hospital in the AM before 9am to sigh paperwork for orthopedic surgery to fix her ankle.
    10/24/14-Arrive at 9am to find my mother completely out of it, doesn't know who I am. I refuse to let them put her under anesthesia and tell them that this is not her baseline, she was normal enough that she babysat my children over the weekend and runs a trucking company daily. Apparently, they had no idea that the was not confused as a baseline.
    -She continued to worsen and ended up with encephalitis and in a coma for 6 days. Recovery was long and she is not the same psychologically since then. She lives independently, with her boyfriend and that brings us back to her WG diagnosis.

    She was given the diagnosis of Limited WG in April of 2015, as there was no lung or kidney involvement, however, she already had a hole in her septum by this point. She was referred to Dr Hauptman (rheumatology) at GBMC who put her on prednisone and methotrexate. She was seeing him as well as Dr Dubin (ENT). I did my research and we scheduled an appointment at the Johns Hopkins Vasculitis center, but they couldn't get us in until September. The methotrexate didn't seem to be doing any good at all, she was extremely fatigued and slept nearly all the time. The hole in her septum continued to worsen, but every time she reported worsening symptoms, Dr Hauptman referred her to ENT and when she asked something not directly related to her nose, ENT referred her back to Rheumy. We seemed to get nothing but a run around. I asked and asked about what the next step was and got no answers. She continued to worsen, but we never got anywhere with either doctor. All they did was refer us back and forth to one another.

    We had our appointment with Johns Hopkins with Dr Seo, who kind of laughed at us and told us that infusion therapy for the limited WG she had was like "Fighting a cold with chemo" and told her how lucky she is and how much worse off EVERYONE else with WG is. She decided to stay with the two doctors at GBMC.

    When she developed a second hole in her septum and had her first uncontrolled nosebleed, they decided to start her on Rituxan infusions. These started in late September. She had 4 treatments, a week apart from each other. After her first infusion she felt FANTASTIC! For 2 days. She has felt like hell since. And has gotten worse. After she finished her 4th treatment, her rheumatologist has seen her twice, no blood has been drawn and plan has been made. She has had multiple severe nosebleeds, at least once or twice a week.

    That brings us to now. She is getting worse. She has sores on her tongue, she vomits all the time. She is becoming increasingly confused. She sometimes cannot formulate a proper sentence or she falls asleep in the middle of a sentence. My mother, who had sleepover weekends with my kids and a party for every holiday was too sick to come over (5 miles away) for Thanksgiving, even though her eldest granddaughter was there and she hasn't seen her for several months.

    The doctors are doing nothing but referring us back and forth, her rheumatologist isn't even seeing her for like 6 weeks. This all seems very wrong and I don't know what to do about it.

    Please, please give me some insight. Even though I'm an RN, I do not work with autoimmune diseases. I work with vascular access devices! We need help and I don't know where to turn.

    Thanks,
    Maurica Marcum

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    Dear Maurica Marcum. My heart is going out to you and to your mom. So much sufferings and so alone.... the term "limited wg" is a problem. It is a dangerous term because we can never know where will be the next place that wg will hit... and its actually not limited at all...
    I wonder if they checked for brain involvement of wg ? Does she see a neurologist ? Did she do brain CT or MRI ? What was the explanation to her previous confusion ? What caused the encephlitis and the coma ?
    Did they check why she vommit ?
    It sounds to me that there are many tests that she still needs to do. Sending my prayers ☆
    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.

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    They DID do a brain CT at the very beginning. She does not see a neurologist. With her confusion, nobody seems to take her seriously. This rheumatologist is a "Top Doc" and is ridiculously busy. She can't even get a normal appointment. They tell her they will call her and inevitably, it is a Friday at 8 am...despite the fact that she does not do well AT ALL in the morning and has asked for afternoon appointments. Also, we have asked for Wednesday appointments as I am off on Wednesdays. I was really anticipating the appointment at Hopkins hoping that we would finally get some decent care. I was shocked and appalled at the nonchalance and disregard we got from a WG specialist! I just don't know. I'm so lost. I truly believe she will die soon and she feels the same way. She tells me how much she loves me every time we talk in case she doesn't live through the night. Oh, her entire septum is nearly gone and she continues having significant nose bleeds and something she describes as "shattered glass falling from the top of her nose." All they tell her is to flush her nose with saline wash at least 5 times per day.

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    Hi Maurica,

    From what I've read, your Mom needs a "lead physician" to guide her treatment. Dr Seo usually gets rave reviews on here, but there are other options available at JH and NIH. Here's link to Vasculitis Foundation » VF Medical Consultants. Before your appointment, you should develop a history of her wegs experience to date - symptoms, meds, test results, summaries of doctor visits, and her overall medical history. This will give a wegs specialist something to work with. It sounds like your Mom really needs a wegs specialist. I hope you can get her to one soon.

    Keep us posted. Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Quote Originally Posted by Shyahsmiles View Post
    She was given the diagnosis of Limited WG in April of 2015
    What is the basis for the diagnosis? The two most conclusive indicators are c-ANCA and Wegner's specfic granuloma in a tissue biopsy. The biopsy is conclusive if properly done and read by an expert. c-ANCA has a very high probability of indicating Wegener's but not positive. If the diagnosis is not certain then she still needs to look at other possibilities.

    Quote Originally Posted by Shyahsmiles View Post
    Please, please give me some insight.
    Get her in front of Wegener's specialists immediately. If the diagnosis is not set in concrete then she needs specialists to confirm it. If the diagnosis IS set in concrete then she needs the specialists to treat her, immediately. Also, it matters not if her doctors are good or bad since you don't have confidence in them, and they're not getting the result she needs.

    That's the best insight I can give you. Hope it's worth something.

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    Hi Maurica..what a horrible situation you and your mom are in. I am REALLY surprised that Dr. Seo treated you like that since he is a specialist. First of all I would do what Pete suggest and get in touch with VF. Let them know what is going on and maybe they might be able to locate a different dr that you can get in sooner. I would drop your pcp in a minute....that "little" mistake with the morphine could of cost your moms life right then,hopefully she is no longer on it. I have learned to double checked all the scripts for me and my mother. The pcp is always asking ..what dose is she on ??? And the then the pharmy gave me pills I told them not to fill and got them without checking thinking they were her bp pills.I realized when I got home and took them back and they gave me the other ones. I have switched pharmys. So that being said double check everything. If she has been sick since the rtx infusions, I am wondering if she is having a reaction with that. I know that can do something with the brain but I can't remember what it is called....sorry...but I am sure you can google the side effects. Also I suggest you take her to the er..maybe where you work, they call draw blood, get a biopsy of her nose and consult on a specialist. I pray you get the answers you both need to get her on the track to healing. Please keep us updated.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Birdie View Post
    What is the basis for the diagnosis? The two most conclusive indicators are c-ANCA and Wegner's specfic granuloma in a tissue biopsy.
    C-ANCA positive and she has had multiple biopsies. They have said it is definitely WG, but they keep doing biopsies. I was so excited to get her to the Vasculitis center at Hopkins and SO disappointed when Dr. Seo really just brushed us off, telling her how lucky she is and how much sicker most people are. I was really looking forward to getting her in with a specialist. Hopkins Bayview Hospital, where the Vasculitis center is located is 15 minutes from where we live…AND I'M A HOPKINS NURSE! I was so thoroughly disappointed. It seems like nobody takes us seriously because my mother gets confused easily and talks A LOT when she is confused.

    Also, it matters not if her doctors are good or bad since you don't have confidence in them, and they're not getting the result she needs.
    I couldn't agree more, but at this point, I don't know where to turn after being brushed off by a specialist. At this point, she is falling asleep (or passing out) while standing up, or in the middle of a sentence. She sometimes sleeps for 16 hours and when she does wake up, like when I call her, she makes very little sense. She doesn't understand how serious all of this is and won't go to the ER because she has told her doctors about it (although she is MUCH worse now) and the doctors aren't acting like it's a big deal. I will get in touch with VF tomorrow and see if they can help point me in some sort of direction.

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    Quote Originally Posted by Debra C View Post
    I am REALLY surprised that Dr. Seo treated you like that since he is a specialist.
    I was SO surprised too! I couldn't believe it!
    Quote Originally Posted by Debra C View Post
    I would drop your pcp in a minute….
    I HAVE fired her PCP. Her PCP called her and apologized, so she went back to her. She reasoning was that she said her new PCP treated her like a drug addict-there was a misunderstanding over the word "polypharmacy.' (My mother does tend to be a difficult patient)
    Quote Originally Posted by Debra C View Post
    Also I suggest you take her to the er..maybe where you work, they call draw blood, get a biopsy of her nose and consult on a specialist.
    I am trying desperately to get her to go to the ER. She says that if her doctors don't think any of this is a big deal, then it must not be :-( She also says that if she's going to die, she wants to die at home. It breaks my heart, but honestly, if something doesn't happen soon, I feel like she may just die. Did I mention that she's only 63?

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    If that were my mom ,I would drag her butt to the er...she NEEDS to see someone SOON. Is she still taking the morphine ? Maybe she is taking more than she is supposed to without realizing. Also with the problem with the shingles ,Maybe she has a blood infection.I still think she may have had a bad reaction to the rtx. If they were willing to give her 4 infusions then they know something is wrong. Good luck today with the VF.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    I agree with debra. take her to ER with or withour her permission. ASAP. I think that she must be checked in all ways, including neurologist, brain CT etc. and get treatment asap. you will have to be her assertive or even aggresive advocate. no other way. sorry. I guess it might be vasculitis in the brain. I also tought about the reaction in the brain of rtx but didnt want to upset you. but since debra wrote about it, I think that it is called PML : Rituximab-Associated Progressive Multifocal Leukoencephalopathy in Rheumatoid Arthritis
    sending prayers. please update us.
    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.

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