Shyahsmiles
11-30-2015, 05:38 AM
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
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