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View Full Version : My WG's story (I hope it isn't too long)



Jenny
05-25-2009, 05:54 PM
It was two weeks before Halloween 2007. I had this fullness feeling in my right ear and started to lose a bit of my appetite. I wasn't able to finish most of my dinner and didn't really crave the foods that I crave like cheese and chocolate. I answered the phone a few days later when my sister called using my right ear and her voice was all muffled sounding so I put the receiver to my other ear. About a week later it seemed like I couldn't really hear out of my right ear anymore, I noticed it when I would listen to my mp3 player. I couldn't hear anything out of the right headphone.

For a while now I had been having baths and not showers because I would get really out of breath, weak and dizzy in the shower so I just stuck to bathing in the tub. I had been coughing up phelgm for about 10 years everyday. I was diagnosed with Sjogren's Syndrome and Raynaud's Phenomenon at age 18. Fibromyalgia, Osteoarthritis and Undifferentiad Connective Tissue Disease at age 21, Hypothyroidism at 23 and Asthma at 25. So I thought the chronic bronchitis I was getting was probably from the Sjogren's and never knew what horrible surprise was around the corner for me in the month of April. So I was used to being exhausted all the time and in chronic pain. I had to stop working in Aug' 99 and applied for disability a while later when I moved back home in with my mother in December of 99. Applying for disability at age 23 is a whole other story in itself!

Middle of November: Starting to get a lot of pain in my right ear and that fullness feeling wouldn't give up. So I went into my doctor's office just to the drop in clinic. I didn't want to have to wait to book an appointment with my doctor because it felt like an ear infection was coming on. So I got some antibiotics and ear drops. It didn't do anything. The pain was intensifing. Fluid was beginning to come out of it. I was starting to get this constant hissing sound in my ear. Like a snake hissing in a cave and echoing off the walls. It hurt so much when I would lie down. So much pressure in my ear and that god awful hissing and now a gushing sound that would go along with the beating of my heart. How the hell am I going to fall asleep I thought. Luckily I had a prescription for percocet for when my headaches and joint pain get too bad but it did nothing for the pain. I had to sleep on my right side because of the pressure and pain in my ear. Now the fluid would just come out all the time it was so disgusting I had to have cotton balls in that ear all the time and keep changing them every couple of hours.

December nearing Xmas. Still on penicillin. My grandma had an old prescription of dilauded that she couldn't tolerate so I tried those 2mg and it helped the pain a little bit. Xmas morning I was in agony. To describe the pain it felt like someone had put a scalple in my ear and cut it all around in there and then poured battery acid in my ear. Then the pain in my jaw joint felt like there was an ice pick inbeded in it all the time and someone was hitting it with the palm of their hand every minute. I had this terrible pain in the back of my head like someone was hammering a hammer with the wrong end into it every minute and shooting an electric shock into my head every couple of minutes. The hissing and gushing sound was constant along now with now a high pitched ringing in my ears every few minutes. I hadn't slept a wink. I said to my mother "Am I being a baby?" "Do ear infections really hurt this bad?" Around that time I noticed that I couldn't close my right eye and I couldn't smile anymore. I looked like a person that had a stroke. I couldn't drink. I had to use a straw or liquid would just run out of my mouth. I saw my family doctor and he phoned an ENT on call and he met with me sometime after Xmas. He saw me briefly and then made an appointment to put a tube in my ear under local anesthetic in a week. I met him in the hospital and he put some freezing spray in my ear which did nothing (I felt everything). I felt him cut an incision into my eardrum and try to ram the tube in and he said "There is something growing in there" and I saw all this blood being sucked into the vacuum tube beside me. I'm thinking to myself what the hell could be growing in there? No wonder the pain and pressure is so bad if I have somthing growing in there. So he told me to call his office and book another appointment. So I did that... another couple of weeks sufferring away in pain.

I saw him and he looked in my ear and sucked more cuck out with his little vacuum and said I'm going to book you for surgery and put you under so I can really get a good look in there and clean it all out and put a new tube in. So I think it was another week or so again and I went into the hospital and got that done. First time having surgery since I was a baby and having my wisdom teeth out at age 23. I was kinda scared. All that week they were publicising that movie where the guy wakes up during surgery and he couldn't move or say anything and felt everything that was going on. I was still taking antibiotics in iv while I was in the hospital and ear drops and he put me on steroids, dilauded or a shot of morphine, too while I was in the hospital. He never looked in my ear the whole time I was in the hospital. It felt a bit better the first two days and then everything went back to the way it was again. I had green mucous coming out of my ear, white thick jelly stuff, yellow fluid and blood. He wrote out a list of prescriptions more of those antibiotics, toradol, hydromorophone, and (prednisone just for two weeks) The nice nurse said she has never seen a patient get prescribed so many meds and be discharged at the same time. I had to call for another appointment and wait a week. I saw him again and he said the tube fell out. Why didn't he check my ear before I left the hospital? I told the nurse how much pain I was in and he still told her to discharge me. So he booked me for emergency surgery and I had that done two days later. He did a mastoidectomy this time where they drill a hole in the mastoid bone because now the infection had spread to the mastoid bone. He put in a new tube. I said to him and my nurses that I feel better when I'm on the steroids. I am still on two different antibiotics four times a day (since January) and ear drops but the infection still isn't goig away. I asked him a few times "Could this be autoimmune?" "Should you refer me back to my rheumatologist?" "It doesn't seem like the antibiotics are doing anything." The surgery helped a little bit with the headaches I got in the back of my head but everything else was the same now a new headache in my forehead right above my right eye was starting. Also I started to get a lot of dizziness. One day I was lying in bed about a week after the second surgery and the room was spinning really fast. I shut my eyes and opened them again and it was still the same. I started to feel nauseated. Finally about five minutes later it went away. It felt like when you went on a tire swing as a kid and someone spun you around really fast and how dizzy you got afterwards. It happened again a few more times.


March was around now and my sinuses were giving me trouble. My nose seemed to always be running. I had a sore throat. It felt like I was getting a sinus infection. I started to cough a lot, too and felt wheezy especially when I would walk my dog. I would sweat profusely when I went for a walk. I looked like I had just gotten out of the shower. I was soaked. Also when I was in the hospital they would do my blood pressure and it was so high and my heartbeat was 144bpm just lying in bed. The nurses were concerned but the doctor coud care less. Now my nose was bleeding a lot. I was having a lot of stuff coming out of my nose like the stuff that was coming out of my ear. My ear only bleed a bit now. My nose was so sore and little things that looked like little pieces of bacon and big blood clotes were coming out of my nose a lot. I also had things that looked like scabs. It was like my sinuses were all scraped away up there. My nose bleed about three times a day. It felt like there were hot pokers up my nose all the time and a knife in my head right obove my right eye. My gums were so swollen and would bleed about a half a cup of blood when I would brush my teeth. It looked like my teeth were going to fall out. So I made an appointment with my dentist. I was coughing a lot, too. I started to lose my appetite. I had already lost about four dresses sizes.
April (the month from hell) So everything seems to be acting up not thinking they could all be related. I was coughing pretty much every minute now and barely sleeping. My joints and muscles hurt so bad. It felt like every nerve and muscle had been pulled and I had been ran over by a bull dozer. I had night sweats for a while but now I was soaking wet all the time. I would have to change my pajammas every hour because I was drenched and so cold. My raynaud's were out of control. My fingers and toes were always blue and purple. My fingernails looked like I had little slivers underneath them (later did I find out they were hemmorages) Now I was coughing up blood and green mucous with streaks of blood in it. Before that it was mostly thick green mucous or yellow coloured. I had pulled a rib from coughing so much and lost two more dress sizes. I was barely eating now. I had no appetite so I drank mostly "Ensure." I couldn't eat anything hard like crackers or toast because of my gums and teeth. So I went to the doctor's and he gave me an xray to get done. That Monday the doctor's called me because they saw something on my left lung from the x ray. So another week went by and my ENT stopped the antibiotics finally and he set up a cat scan and lung biopsy to get done in a few days. I couldn't walk without a cane or walker now. I didn't even have the strength to hold my head up. I went in that Friday morning to the hospital and they put an iv in my arm to put in contrast for the biopsy. They froze the skin where they put the needle in. Like it does anything when the needle is like 12 inches long and going into your lung (I felt everything) The nurse was so nice holding my hand. I heard the doctor say "The needle isn't thick enough to suck anything up" "I will have to use another one, a thicker one" So he put in anoter one (feeling like you are being stabbed for the second time round) "I asked the nurse twice how big is the mass?" "She wouldn't answer me" So I knew it must of been pretty big and them telling my sister and mother in the waiting area that she is one sick girl. But of course my ENT didn't admit me or anything and sent me home. They were just waiting for something to grow from the sample to see if it was fungul or something. My mother knew something was terribly wrong and went to my doctor's to get him to intervene. So my doctor called an infectious diseases specialist to meet me at the ER that Monday.

Monday April 14, 2008
My sister and mother took me to the ER. My sister got me a wheelchair (They are so uncomfortable the ones in the hospital. They are basically like a shopping cart wheel chair. No cushion or anything)We went to the front desk and told them what my doctor told us to say and what Doctor was meeting me. They took my blood gas and it was 83%. Then told us to wait in the waiting area. The doctor called and said he would be late. So my sister asked the nurse if I could have a bed to lie on. He said of course and brought me back and put me on a bed. He said it is people like your sister that we like to treat that are really sick and need to be here. My nose started to bleed and wouldn't stop. About an hour went by and the doctor came to see me. He asked me lots of questions and he had looked at my cat scan that I had done that Friday. He said "You have a 11 cm mass on your lung and they just sent you home?" He sounded really upset. I liked this guy, someone that actually cared and was going to get to the bottom of this and figure out what was wrong with me, yay! He examined me and ordered some blood work. He also got a lung specialist to look at me and talked with him, too. He was my lung specialist that diagnosed me with asthma when I was 25 (I just couldn't breathe one night and my mother took me to the ER and they admitted me for three days). My sister said that he was out there talking with a bunch of other doctors about my symptoms like they do on the tv show "House." I went to the bathroom with my mother's assistance and she said "How long has your urine been that colour for?" "It looks like tea" I said "I don't know?" I had been so out of it from the lack of sleep and I mostly just went the bathroom without the lights on because of the headaches and constant migraines I never noticed it. For years I never really urinated that much. I drink tons of water because of my constant dry mouth but most days I would only go about twice a day except for the times I was on ivs and prednisone. I would go more often. A nurse came around to take my blood and it wouldn't come out. She was using a butterfly needle and some kind of pump to suck it out but my blood was so thick, it was like pancake batter. He put me on iv antibiotics. My mother had requested a nurse from iv therapy to do it because of how bad my veins were previously in the hospital before. They would prick me about three times until they found a vein that would work and it hurt so much when they put in an iv. This nurse was super nice and got the iv in on the first try. It was getting late so my sister and mother left. They moved me into a different part of the ER now. It had a bit more space and I had my own corner. My gown was soaking wet from my sweat and the nurse wanted to change me but I was so lethargic I said it's ok. I'm just going to be like this in an hour again anyway. I couldn't sleep. This poor old man was freaking out and was very confused. I could hear nurse say to him "You have had a stroke." It kinda scared me a bit. I had a fever so everything seemed like a bad nightmare. The nice male nurse kept checking up on me and he put a kamode next to my bed because I couldn't walk to the bathroom and changed it for me. It was around 2:30 am now and they said we have a bed for you now in the respirology wing. So someone wheeled me up there. It was dark everyone was sleeping. I had a spot right in front of the nurses' station. It was spacious in the corner and had a window and a comfy recliner chair. There was a curtain between me and the other room and a curtain along the hallway, too. The nurse was really nice and she changed me into a new gown and got me a kamode. I only slept a little bit. I was so exhausted. Coughing all the time and worrying if I was going to die or not. Everyone was coughing in there (I thought to myself this would be a great place for smokers to come and listen to this all night and that would sure make them quit smoking) It was around 6:30 am and someone woke me up to take blood. I think I had just fallen asleep about an hour before that. The infectious diseases doctor and his intern and lung specialist came and saw me that day and asked more questions and examined me. The infectious Diseases doctor said your right pupil is twice the size of your left one (My eye was really red and sore, too) I also told him that today all of a sudden there was a sore on my right leg and it was bleeding. I said I have one on my right hand, middle finger, left arm and left elbow (three of them there) These ones came in the beginning of April and the one on my arm in February. He looked at every spot of my skin and found one on the bottom of my left toe. I said "That one is really tender and sore when you press on it. I also have all these reddish marks on my legs. When he looked in my right ear he said "It's a real mess in there." I have never heard anyone say that before. I liked his honesty though. I thought to myself I wish my ENT would of told me what was going on in there. I sure knew it wasn't just an ear infection. That night a Nephrologist came to see me. Asked me lots of questions and the next day he did a 24 hour test of all my urine and started to test my blood sugar twice a day (which wasn't much fun when you have Raynaud's and your fingers are purple and when they go to prick blood won't come out) So they had to keep giving me hot blankets to warm my fingers in and pricked me four times a day rather than twice because the first time they would do it no blood would come out. Same with the blood test. Everyday or twice a day. Prick after prick I felt like a human pin cushion. I also had a skin biopsy done and bronchoscopy. When I had the bronchoscopy my doctor said I will be asleep the whole time. I drank some medicine to freeze my throat (it tasted really bitter) and then they gave me something to make me relaxed and sleep through my iv. I woke up during the last part of it. I felt like I was choking to death. I could see what he was doing on the screen above me. "He said we are almost done." "You are a very good patient." I looked at the sterile jar that he had collected from what was inside. It looked like pink milk.

April 16th
"You Have Wegener's Granulomatosis." We are putting you on Cyclophosphamide, Actonel, (an osteoperosis drug because Prednisone thins your bones) Folic Acid, Septra, and 100mg of Prednisone (later I found out my sed rate (ESR) was 99 from my Rheumatologist). I had an echocardiogram, lung x rays, bone scan and an ultrasound done of all my internal organs. They called my rheumatologist (I hadn't seen her since 2005) she came to see me and asked me some questions. She was very nice. My lung specialist said that my rheumatologist said I have Antiphospholipid Antibody Syndrome and that I need to have shots of a blood thinner while I was bed ridden so I don't have a stroke. A few days later I started to walk to the bathroom now and walk a bit with my mother and sister so I didn't have to have those shots anymore. My lung specialist also told me that the prednisone will make your face really round, trouble sleeping, significant weight gain and a hump in your back. My mother asked him about the colour of my urine and he said "We only have to worry if it is the colour of "Coca Cola"." The infectious diseases doctor said that my rheumatologist and lung specialist will take it from here. I stayed in the hospital for nine days.

Sangye
05-26-2009, 12:20 AM
Jenny, I cringed all the way through this. I am so sorry for your terrible and unnecessary suffering. This is like a horror story.

Please do not ever return to that ENT.

Have you considered filing a lawsuit against him? I am not in favor of suing doctors over every mistake--they are human. But in this case he was repeatedly "grossly negligent" and did not follow accepted standards of care over a long period of time. (The nurse who commented on your being discharged with so many drugs was trying to tell you that without actually saying it) A lawsuit would not be to seek revenge, but to punish him for this negligence and provide you with some compensation for your damages--past and present. You suffered permanent and severe damage because of him, which is all the worse because you're so young.

Also, please consider filing a complaint with your medical board (http://medicalboardvic.org.au/content.php?sec=20). His actions and inactions should be examined by his own peers. He could--and in my opinion should-- lose his license over this. As a doctor I don't say things like that lightly.

You are young and in the middle of surviving all this, so you may not realize how bad his care was.

Also, antiphospholipid antibody syndrome makes you likely to develop blood clots, just by itself. Add in Wegs (which makes you 23% more likely to have clots) and you have a recipe for disaster. You need to see a doctor about being on blood thinners long-term, if not permanently.

Did anyone check your kidneys? It sure sounds like there's involvement there.

Do you have a Wegs specialist? Very necessary. Please do not think a regular rheumy or lung doc can handle this. Particularly in your case, which is quite severe.

Jack
05-26-2009, 02:10 AM
Hi Jenny,
Your story sounds very much like my own only even worse! Surgery, antibioticts, lots of different specialists all trying to treat their own little specialised bit, but no one looking at the whole picture.
I hope you are now receiving the correct treatment. I must say that it sounds as if you were discharged quite quickly. In my own case, it took around 2 months in hospital for all the initial tests and treatment and I still ended up losing my kidneys. As Sangye says - you realy do need a Wegener's specialist. The general medics just don't know enough to treat this tricky disease. There is no "book formula" for its control.

You should be asking questions about your kidney function test results. In fact, when you get your head around what has happened to you, ask questions about everything and don't be fobbed off with evasive answeres. Doctors don't like to admit that they are wrong or simply don't know!

Good Luck,
Jack.

Jenny
05-26-2009, 07:38 AM
Thank you for your advice. Are you in Canada? I looked up malpractices in Canada a while back and it looks really hard to win one here and I just don't have the energy to do all of that. I am thinking of reporting him to the medical board. I don't want him to treat others like this. Also I found out he had another patient with WG, too at the same time. So he knew all the symptoms and my neurologist copied my mastoidectomy report that the ENT did and gave me a copy. The pathology report said suggestive of WG way back in Feb' 08!!!

Thank you for your response. So sorry to hear about how bad your kidney involvment is (I wish you well) I see my rheumatologist regularly and was getting my blood done every two weeks and now every month and urine test. I asked my family doctor to send me to a new ENT so I started seeing him in July. I am not seeing anyone for my kidneys just that one that I saw in the hospital and my blood and urine tests still get sent to him. My rheumatologist said there is some red blood cells in my urine (it is amber colour) My ANCA went down to normal in November so I'm on Methotrexate now since then and the prednisone. But my ear is acting up again lately. It's really sore again especially the bone behind it and is bleeding a bit. I see my ENT on Wednesday and he said he was thinking of maybe putting a tube in again. He took it out two months ago. I see my rheumatologist on June 2.

Thanks :)

Sangye
05-26-2009, 07:47 AM
Jenny, if the mastoid bone (the bone behind your ear) is hurting, that's a very dangerous sign. It means the bone is involved (again/still). Because of its proximity to the brain, any infection in the mastoid bone is very serious. Please call your ENT ASAP and tell him what's going on. You should be seen yesterday.

As far as malpractice, you can usually have a free consultation with a lawyer. You may want to find out what the statute of limitations is for starting a case. I know it's more work on top of what you're doing right now. If I didn't think it was important for your future, I would say to just walk away.

Jenny
05-26-2009, 07:48 AM
Hi I just read your blog page. You are a chiropractor. My cousin is one and told me to see an Osteopath about my seventh facial nerve palsy. The first visit I saw him I could move my cheek. I can shut my eye and smile again. He has helped the ringing in my ear, too. I'm so grateful for that! Since the doctors (especially that stupid ENT) he said I don't know what it is it could be Bell's Palsy. I was seeing didn't have any answers on how to help with the facial palsy.

Sangye
05-26-2009, 07:53 AM
I was thrilled to see that you went to an osteopath. Adjusting the cranial bones can help with so many things, and is certainly going to improve facial palsy issues. Some chiropractors (I am one) also do "Craniosacral therapy." That just means adjusting the cranial bones. It's amazing how many health problems are improved or resolved with it.

Losing your smile must have been icing on the cake from hell. Glad it's back so you can do THIS : :D:D:D:D

rkm001
05-26-2009, 11:25 AM
Your symptoms are very similiar to my Mothers experience. She was diagnosed in April of this year, 2009, after suffering for 4 months with a "sinusitis and ear infection". She is having a terrible time regaining an appetite. She has no appetite. I am feeding her baby food and Ensure. Our specialist for WG is taking 2 weeks to review her case. I am hoping for a full recovery, or at least back to some normalcy.
Hope you are doing better and remain in remission.

Sangye
05-26-2009, 11:46 AM
Can you get her to drink some protein shakes, too? Ensure does not have enough protein--it's not meant to be a complete meal replacement. She needs protein to build muscle and repair tissue. Also, you have to make sure she's getting adequate calories each day. This (http://blog.nutritiondata.com/ndblog/2008/08/how-many-calori.html) is a good source to help you figure out her caloric needs.

Doug
05-26-2009, 01:12 PM
Wow! I won't go on about ENT doctors, but why didn't your ENT doctor just give you a revolver and let you self-help yourself out of your suffering? What an awful experience. Bless you and may you be at the end of the nightmare you just described. I am overwhelmed.