Getting to Know You

[Sangye]

Here's a thread devoted to getting to know each other more. We can share things about our lives before/minus Wegs, our work, our family, hobbies, etc.... Anything! And if you're a new member, jump in and tell us about yourself.

I'll have to write mine later, but just thought I'd start the thread and contribute a theme picture :

http://ihasahotdog.files.wordpress.com/2010/03/cute-puppy-pictures-gnaw-you.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)
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[moyan]

Good morning Sangye and all. What a marvellous pic, how the people of the world should act

[Lightwarrior]

I thought Ciara (Dominic's boxer) and Bunny (Christophers cat) were unique to this. Ciara knaws on Bunnys ear and Bunny falls asleep purring. I love the picture

[Jack]

I'm 54 (55 in a couple of weeks time), but look more like I'm 75 and I've had Wegener's for 25 years. :(

I am married with 2 girls aged 14 and 19, both adopted, both doing very well and are "good kids". Wife now does almost everything around the house and works 3 or 4 days a week too. It's really not fair on her. :(
We live in quite a nice house in a good area on the outskirts of Birmingham, now fully paid for!

I had my first symptoms when I was 30 and started on the long road of misdiagnosed sinus infections. I had just returned from working in Italy for a short time and thought I had picked something up from polluted sea water (my stay was not all work! ;) ).
Ended with renal failure and eventually a cadaver transplant.

I have worked as an engine design and development engineer since leaving school - retired on a full pension due to worsening health issues 3 years ago. One advantage of working for the same large company for over 30 years.

My hobbies have always been connected with cars and bikes as well as the usual household maintainance stuff, but I also practiced yoga for many years and also karate at one time. These days, I mainly watch a lot of TV and mess with my computer. Not too keen on computer games though.

My next target is to get to see my youngest daughter through college and also teach her to drive. My eldest daughter passed her test first time under my instruction! :)

[gwenllian111]

Whats a cadaver transplant, sorry, i'm not familiar with the term? Jack - you've been through so much, I truly hope things significantly imrpove for you. What a great thread this is, finding out what people are like minus the WG!
:)

My dad also taught me to drive, and to this day, I still drive like him lol!!

[gwenllian111]

Ok this is my bit!

I'm 29 years old, married to my husband of 7 years, and have three little girls. I live in Cardiff, Wales, UK.

I've worked on and off all my life in a clerical capacity, often secretarial work.
I don't currently work, but intend on returning to work once my youngest, Eirian, is a year old.

I am in the process of moving house to a nice new home in Cardiff North. Very exciting!

I have two older sisters. The eldest has a suspected auto immune disease, and is currently seeing a Rheumy about her symptoms.

I rely on psychics a lot, - and, I know most people think they're a total waste of time, but I do believe that a select few can be good. I seek reassurance from any means possible! lol.

I'm scared of dying.

[Jack]

Whats a cadaver transplant, sorry, i'm not familiar with the term?
It is an organ transplant from a doner who has died rather than from a living relative.






I'm scared of dying.
Something I have come to terms with and feel quite comfortable about. Just not today if I can help it! ;)

[Barbara1966]

I’m 44 years old in a couple of days (March 17th) I was born and raised in Poland and moved to United States 23 years ego. I’m marred to the most wonderful man for 22 years and we have two wonderful kids in college. The boy is 21 and studies architecture, and the girl is 19 and studies music management.

My husband is also Polish; he is working on an oil tanker as a sea navigator. Usually he is at the sea between 6-8 months at the time, then he returns home for roughly a month at a time.

We live in Bristol, Connecticut for 12 years in a very quite neighborhood. I did enjoy taking care of the house and all the maintenance. My hobby was gardening and taking care of the yard.

For last 15 years I worked as a production planner in the company that makes perfume pumps. I loved my job very much. The last 8 months I’ve been on disability leave and had to leave the company. I’m hoping when I will be in remission they will take me back.

I was diagnosed with WG in July 2009.

[Lightwarrior]

I am 54 and was adopted at the age of 3 days by the great great great great Grandaughter of the last Native American Chief to sign the treaty and only because his people were starving. I have only non-identifying information about my blood line but do know that my biological mother was 1/2 Native American (don't know which tribe) and 1/2 French. My biological Father was full blooded Irish , they worked the fields and he left her when she became pregnant with child number 5 (me). I was raised in a working class poor family who taught me that loving each other and taking care of your own were the most important things in life. My Mom and Grandma lived with the last 7 years of their lives. When I moved to Yuma I moved them with me within 6 months (My Grandfather died when I was 21 and my Dad when I was 22). For 7 wonderful years I had 5 generations under my roof and my children and grandchildren were witness to the incredible life stories from my Mom and Grandma, with the excpetion of Brianna who is almost 3 now, both my Mom and Grandma got to sing to her and see her ultrasounds before they died. I should mention I was born and raised in Roswell New Mexico and there are many people who know me that are convinced my real parents were the aliens that crashed in the spaceship in the Roswell desert. (lol)

I married for the first time at age 20 to the father of my two adult daughters, his family took me in and loved me as their own even after we divorced, we still stay in contact and one of his sisters moved to Yuma and lived with for about a year, several years ago. His Great Aunt was the local Curandera (healer) and practiced using herbs and teaching people how to live through their fear. When I joined the family she announced that i was the one she would train. I spent every weekend with her for 2 years (she spoke only Spanish, i was just learning, she was very traditional and I was a skinny smart ass white girl) Go figure, I loved her and learned a lot.

Married again, got divorced supported my children as office manager of an automobile dealership while organizing community groups as a side. During my activist days we sued the State of New Mexico to provide districts to increase the chances of poor and minority neighborhoods of having elected reprensation and won. We worked in my living room with maps all over the walls and two dollar calculators until 4 in the morning. I would take a nap and a shower and go to my day job. Numerous voter registration drives, a community center, organizing PTA's in the Barrio schools to name a few. Through organizing I found one of the great passions of my life, nursing. During a voter registration drive we came across an elderly gentleman living in a chicken coop, he either could pay rent or stay on his psych meds (he was schizophrenic) If he paid rent he sometimes hurt himself and others...anyway this started our crusade to build and open an Community Health Clinic, which we did. Through this process I fell in love with public health folks and decided to go to College. I got an Associates degree, won a Fuld Fellowship and got to study with Nursing greats like Jean Watson in Edinburgh Scotland, visit London and follow Florence Nightengales work.

I was hungry for more knowledge and continued for my Bachelors of Science in Nursing (BSN) and then onto my MSN. Once I have this Wegs thing figured out I still want a PhD in Nursing. I have many theories yet to write. I am the Clinical Nurse Expert in an Intensive Care Unit and am passionate about patient safety. My co-workers have been incredibly supportive and freaked out by what is happening with me. They made a small cardboard cut out of me (about a foot high), dressed it and carried to meetings and out in the unit for consultations with the doctors and nurses. They had posters of knew protocols and things I would normally teach saying "Flat Christi wants you to know". They called this cutout Flat Christi.

The most important part of my life are my amazing children and grandchildren. Both of my daughters think with their hearts, there have been struggles but I am so proud of who they are. Medea is the mother of my five grandchildren and organizes the family. Valerie has her own apartment, works as a medical assitant and has plans to go back to school. My oldest grandchild is Dominic, he turns 18 in one week and I call him the home of my heart. Desiree was born next, she is 16 and should be finished early with highschool, she has the sweetest spirit and the smartest brain I have ever seen. Christopher is 13 and is thought process is most like my own. He is gorgeous, funny and thoughtful. Alexis is 6, loves kindergarten and has this incredible spirit that lights up the room when she enters. Brianna will be 3 in May, she is strong, independent, funny and no-nonense and I swear she channels my Grandma at times. (the other day she was sarguing with that she was NOT 2 years old, she was 99 years old, my Grandma died at age 99...I know theme from jaws). Ciara is just turned 1 year old and is Dominic's dog, she is a boxer who looks a lot like Scooby Doo. Bunny is the cat who is about 8 months old. Amazing house, not often quite. I didn't mention the never endless stream of friends of the grandkids that filter through and try to live here.

Probably too much information, but now you know a bit about who I am. I feel blessed to have landed in this group, but then my life always has been one incredible adventure.

[Sangye]

I'm 46 and I live in Maryland. My family is Greek and both parents are first-generation Americans raised in NYC. I have one sister who's 2 years older than me. My family was very Greek--lots of drama, lots of food. (The movie "My Big Fat Greek Wedding" was more of a documentary than you might think. :D ) My mom could make one heck of a baklava.

My dad was in the military so we moved all the time. We lived all over the US but spent the most time in the southwest. I really didn't mind it since I always had a travel bug. When I became an adult and continued traveling, I explained, "My parents put the ball in motion and it just kept rolling." I got my Bachelor's in Biology in southern California and within a year I joined the Peace Corps. That had been a lifelong dream of mine. I went to Ghana as a high school science teacher. During my second year I taught beekeeping to local farmers. Being a Peace Corps volunteer was one of the best choices I've ever made. I really grew up over there. Seeing my own country through the eyes of others changed me forever. I saw more poverty and disease than my heart could stand. I never, ever wash clothes in a machine without thinking about how easy we have it. I've been home for 22 years, but in many ways it feels like I never left. I'm still very talkative, but I learned about silence during my time in Africa and it's remained with me ever since.

I came home and got my teaching degree in southern California. I taught elementary school for 2 years in a Hispanic neighborhood. I loved the kids but still had a major travel bug scratching at me, so I took a job teaching in a private Spanish-American school in Valencia, Spain for 2 years. I stayed in Spain for a third year and did private tutoring. That year I found my sweet dog Laika living on the street. I brought her back to the states with me when I left Spain.

I moved to northern Arizona (Flagstaff) on nothing more than intuition. The moment I drove into town I knew I was home. I've never been anywhere in the world that I loved so much as Flagstaff. I grew very strong there, hiking many miles a day along the endless mountain trails, eating healthy, breathing clean air. I made wonderful friends. I felt the pull of my first love-- science. In particular, I always loved anatomy and physiology and always felt like a physician, as crazy as that sounds. I had grown fond of holistic health and decided to become a chiropractor. I moved to upstate NY for school and was one of the few people who can say they loved the big snow up there.

As soon as they finished the graduation ceremony, I was out the door heading back to Flagstaff. I'd been gone for 3.5 years but it felt like forever! I started my own practice specializing in pediatrics and pregnancy, though I treated patients of all ages. I was in heaven. I treated entire families at a time-- all crowded in the same treatment room. My office was fun, LOUD, joyful and loving. It never felt like work. The combination of chiropractic, owning my own business and my patients made it perfect for me. My hands, my head and my heart were all busy.

Within 5 years, Laika became sick with something that looks like Wegs in retrospect. I took her to a holistic vet who turned out to be a Buddhist nun. I'd always felt like a closet Buddhist and began going to the temple in Sedona. I felt a strong connection to the lama and sangha and within a month I went as often as I could. Laika worsened and died within 6 months. She and I had been inseparable for 10 years. She had brought me to many good things and many good people in those 10 years, but bringing me to our temple changed my life forever.

I adopted my dog Patch within 2 weeks of Laika's death. I knew I'd always miss her, but I didn't want to live without a dog and I couldn't stand the thought of a dog sitting in a shelter instead of my house. I adopted my dog Lotus almost a year later. The two of them are a hoot-- best friends and very funny.

I was ordained as a nun within a couple years. At my ordination, I was already getting sick. I'd been having severe joint pain on and off for several months. I was terrified about what was happening to my body, but I was also in an unbelievable amount of denial. I continued working while I grew sicker and more crippled. I was very close to death by the time I went to an MD. Luckily he diagnosed it right away.

I moved to Maryland at the end of 2008 to be closer to our main temple. I was surprised to discover JHU specializes in Wegs and is only 2 hrs away. In Arizona I had no idea about the VF, Wegs docs, nothing!

I'm determined to get back to work as a chiropractor. I don't know when or how, but I don't believe it's over. Meanwhile, I'm grateful for all of you for keeping my chin above water and letting me play doctor with you. :D

[jola57]

I am 53 years old and I was born in Poland. I moved to Canada when I was 14 and lived in Toronto. I finished University of Toronto with microbiology and a minor degree in anthropology. I moved to Calgary to be closer to my parents who moved there during my university years. I was doing clinical immunology at the Foothils Hospital where I met my husband of 25 years. In 1989 we moved our family, us and our two small sons, to Mission British Columbia. For the past 10 years I and my wonderful business partner have owned a real estate/property management business.

I am very proud of my two wonderful sons. Our oldest finished UBC with a cognitive systems (psychology) degree and has been accepted into a masters/Phd program in UK this year. Our youngest is in his third year of medical school. My husband is an anesthesiologist. With all our knowledge we did not see that my slowly developing symptoms would lead to this devastating disease. Looking back I started to have symptoms as far back as 10 years ago. This is the time when I, a strong skier, started to fall behind my 2 sons and my husband on the slopes. I had started to feel weaker, had to make frequent stops and finaly about 6 years ago I just let them go ahead and not wait for me because my feet cramped and I felt se tired I was feeling faint. I put my weakness down as to out of condition. Although why I would be out of condition if all of us were sking together always and they did not appear to be out of condition as I was I don't know. I used to go to aerobics with friends of mine and about this time I started to feel pain in my left shoulder rather badly and in my right hip, The hip bothered me so much that I could no longer sit cross legged or do excercises involving stretching. I had to quit the gym. I did go to my doc and complained of the pain. Had a bone scan which showed marked muscle thickening of the right shoulder ( I could have told them that since I could see my left shoulder was higher than the right) and had hot spots around my hip joints and shoulders and cocsyx (tail bone). At that time I also developed choking coughing attacks that came, disabled me for 5 minutes and went away. About when I turned 47, I sarted to feel achey when getting up in the morning. This I put down to getting old. As you can see I am not much of a complainer and had an explanation for all my symptoms.
2 months before I turned 50 the pain has gotten so bad that I could hardly get out of bed, I was constantly tired, had terrible night sweats and leg cramps. Also, I developed small round red discolorations on top of my finger joints. I did some research and thought it may be polymialgia rheumatica and my husband agreed. I went to see my family doc and he agreed as well. The tretment is low dose of steroids (5mg)on which I was started in November 2006. I also started to complain about hearing loss in my left ear and was put on antibiotics for 20 days. Of course this did not do anythign and one day I woke up not being able to move at all. I could only stare at my husband with tears falling on my pilow. I couldn't move a muscle. He stuffed a large dose of pred down my throat and after a long while I was able to get up. I was then shifted to a rheumatologist, who also treated me for polymialgia but had given me higher dose of pred (15mg) which didn't do anything, this was in December 2006. My esr and crp were in high tripple digits. By April 2007 I developed burnign sensation in my legs which culminated in peripheral neuropathy of the feet and what is called a dropped foot (left leg). I was sent for a consult to a neurologist. This fine old gentelman (who should have been retired and for whom I thank my lucky stars) did a test on my legs three times that day because he couldn't believe the results and on my hands. He then sat me down and said "young lady you do not have polymialgia you have vasculitis". With his report my rheumy then did the cANCA test, which came positive and I finaly had my diagnosis of Wegener's Granulomatosis. He wanted to do a biopsy of the sural nerve in the left foot, but I didn't want to lose that nerve so we compromised and I did have a biopsy of my left thigh muscle. This came back inconclusive with a notation of an inflamation of the muscle. Then we did do a nerve biopsy which showed the granulomas and so confirmed the diagnosis. I was put on 6 months of cyclophosphamide and 45mg prednisone and bactrim. After 6 months and just before I was to start on methotrexate, I started to feel the pain again and in short order started to cough up globs of blood. I was sent to a pulmonologist who did a CT scan of my lungs and decided that I was back in Weg's flare up. Back onto cyclophosphamide and 60mg prednisone this time for 12 months. My left foot regained mobility but feels now like it is permanently twisted (very painful at times), neuropathy is still there.

During this time I only took time of work in December 2006 and half January 2007. When I came back I warned my partner and our staff that if they see me crying it is due to pain so don't pay attention and that I am all right and the edge of the pain will pass soon. I think my business kept me going strong and is one of the reasons why I felt and feel upbeat every day.

At present I am on methotrexate and 7mg prednisone and although my kidneys and my liver show some involvment, I am lucky that everything seems to be kept in check. I have been on this forum from almost the beginning and have made wonderful life long friends here whose support and collective knowledge has been invaluable and who are my friendly lifeline.

[pberggren1]

I'll keep it short.

I was born 8:30pm July 7, 1976 at the Grey Nun's Hospital in Regina, Saskatchewan, Canada.

I am a 33 year old single male. I moved back in with my parents after I first got sick with WG and haven't left yet.

At first I didn't like living back home but now I realize it is HOME for me now. I don't know where I would be without my parents - my Dad always drvies me to my out of town doc appt. now. I know I can always rely on my parents for support.

I also have a best friend Dale. I met him through my Grandparents back in 1994.

I have worked at Zellers, McDonalds, Canadian Tire, A small Mom and Pop Grocery Store, Social Services, Walmart, Water Treatment Plant, Security Guard at a Hotel, etc.

I was taking a Diploma Program in Water Resourses Engineering when I got sick with WG in 2003.

I have 2 brothers. Mark lives in Salmon Arm, B.C. with his girl friend Ashley - he is 29. And John is 27 and lives in Swift Current where I live.

My Parents are both 61. My Dad is a semi-retired flooring installer and my Mom is a legal secretary.

I'm not sure what else to say but that I am so thankful that you all exist in this wonderful group.

Divine Providence

[elephant]

I am 44 years old and have a husband, two children and a dog.
Ever since I was young I wanted to be a MD, I found Anatomy fascinating. I started feeling sick on/off when I was 12, my mom told me that when I was younger I complained of joint pain. Diagnosed at age 12 that I had RA...put on aspirin....then got progressively worse at age 15....spent about two months total in hospital...kidneys started to fail...then finally by age 24 had a kidney transplant. I decided to go to Nursing school and got my BSN and then two years later Nutrition and Dietetics Degree. Even after my kidney transplant I did not feel 100%...constantly at the doctors complaining about chest pain, headaches, stomach pain....so I know I could not even go through medical school...my family was not supportive because of how much it would cost and I was not feeling good. I know that I have saved patients lives and helped many people being a RN and having a nutritional background.
At the time I am not working and eventually will work, but maybe not as a RN.
I am so glad I found this forum and feel so connected to all of you guys....thanks for letting me play nurse and being a pain in the butt nagger. :)

[Luce]

I'm 26 and live with my fiance, two rabbits and two guinea pigs. I work full time for the smallest local authority/council in England as an administrator dealing with personnel and finance issues.

In October 2008 I felt like I'd been trying to fight off a cold/flu/virus for about 6 weeks when I coughed up quite a lot of blood one Saturday morning. I'd been giving some penicillin for what my GP thought was a throat infection and thought the blood was a good thing (questionable logic I know). By the Monday afternoon I was feeling bad still so went back to my GP who listened to my lungs and thought I had blood clot so sent me straight to A&E. From there x-rays showed I had huge holes in my lungs and blood was in my urine - it took a couple of days for docs to rule out thing like pneumonia and tuberculosis and come up with a diagnosis of WG. It turned out I was in stage 3 renal failure and got started on IV cyclo and pred. I was subjected to lots prodding and poking and several games of 20 questions by medical students, but at least it passed the time. Two weeks later I was sent home and since then I've spent the last 18 months steadily working through every WG drug and failing on it, I've recently had two IV's of Rituximab and go to the hospital tomorrow to find out if they're working.
I've felt pretty good throughout all this and apart from an initial 3 months off work have been working full time ever since. I'm currently very anaemic which is making me very tired and weak, but I can still just about manage work and I'm having an iron infusion on Sunday which should resolve the anaemia.
I consider myself very lucky that I don't suffer with day to day joint pain, nasal crusting etc but realise this makes it harder for me to spot a flare as the WG goes straight to my lungs and kidneys and can do a lot of damage quickly and silently. Many friends and people at work have forgotten I am ill and am still trying to battle through the Wegs because I show up every day and just get on with it - they don't see me falling asleep in front of the tv by 7pm every evening just to have the energy to do it all again tomorrow.
All my spare time over the last year or so has been spent planning our wedding, which is now only a month away! I am trying not to get too stressed over it but think it may well have contributed to my latest flare and I am so looking forward to it all being done and dusted so I can finally rest and not spend my precious spare time chasinng caterers and dressmakers.

[moyan]

Hi, I guess I am the nestor of the group at 70 and also knowing the least about docs and hospitals. Knew more navigating terms than medical when I landed here. First name is Siv (pronounced Seev). Only thing I have in common with a goddess, she was married to the norse thundergod, parents thought it might catch, but no such luck.
Born and raised in Stockholm Sweden, home ec teacher, but after 12 years I was ready for something new and since my then husband was in paperbusiness, we landed here in -73. Here was in the middle of French Quebec, my hands had a lot of excercise when I tried to say some-thing. Stayed there 5 years, then Montreal where we adopted some kids from Regina, I needed something to do and my education was useless here. I hate school as a student so.......14 years later it was time to move to Vancouver area, after a few years I moved out, kids were grown.
Again I wanted something to do, so I became a home support attendant and loved that job! Was more like visiting people who appreciated company and my aim was to get even the most cranky to smile. And home ec came in handy :)
I went to gp about every 3 years for stubborn chestcolds, so when new doc here wanted me to go for bloodwork, I refused, never thirsty, so their fear of diabetes I ignored, and I did tell them. I know what I eat so cholesterol was no concern either. (Yes Sangye, I know it can be high anyways.) I got a punsy little sore on my foot that didn't want to go away so after 2 weeks I went to the clinic and doc said:" This is no hangnail, it is the start of gangrene. Sent me to a vascular " specialist" who in his mind decided I was diabetic and gave me pills. 2 months later he mentioned kidneys and I went for bloodwork the same day. Next day GP since 20 years, who called the lab, the hospital and told me to go in TODAY! Thank heaven for neighbour who came in for the cats every day. Was dxed with WG 2nd day and put on procytox and pred. Turned out body reacted on the chemo so needed 3 transfusions before dose was down 3/4. Toe had to be amputated after that long delay. Today kidney is stabilised and I have some odds and ends, described by others. Walk with walker always and get up very slowly or I might fall. But the firemen that picked me up last time were very handsome!

[DEE]

I am 54 yrs old nearly 55 ! have been married for nearly 35yrs and have one daughter 30yrs and a son who is nearly 23yrs and two dogs
i work at my local school have been there for seventeen years
I work as a teachers assistant mainly working with children with special needs
I spent most of 2008 in and out of hospital for various reasons managed to go back feb 2009 started chemo may 2009 and was coping reasonably ok if you call going to work and then to bed ok
until i had major flare in november changed chemo etc since jan 2010 i have been off work
thanks to the support of my husband and family i have used this time to do as a im told
by this i mean and rest stop worring about things all the time !!! some thing wg consult keeps teling me to do but im not been good at
i love to read and when they weather gets better i like been in the garden dont know how much i wil be able to do this year if any but im sure i can supervise hubby and i sure he will be pleased about that ;-
im hoping to eventually go back to work but how relistic that is im not to sure at the moment . did a reality check this weekend when took me an hour and half just to put me together
but i miss working with the children 7 and 8 year olds i look on this as my light a end of a tunnel i use this term as i expect many of them to come my way dealing with this desiease
i used too moan about hubby been on his laptop al the time now he says "on your laptop again" it makes us smile because he first of all joined the forum when i was first diagnoised because i was not ready so he knows how valued all your opions are to us especially on bad days
once again thank you for your support
i shut up now DEEx

but my body wont let me any more

[DEE]

oppss there i go again really should post when im not so tired please ignore last sentence !!!!!!!DEEx

[MCC]

I am 29 from the UK, but currently live in New Zealand where I've been for the last year with my boyfriend. At first we thought we'd have to go straight home to the UK when I was ill, but I decided to stay and have treatment here since my visa is for another year.

I work as a campaigner for an animal charity and I am vegan. We travelled in Asia for 6 months before coming to New Zealand.

My boyfriend and lovely colleagues have been a great support since I got ill and diagnosed in January this year as I'm so far from my family. I was ill for about 2-3 months before I was diagnosed and it started with just a cold at first, and then joint pains, night sweats and later swelling and a rash on my feet. The doctors here are fantastic- they were very perplexed at to what was wrong with me and I had so many specialist teams visit and so many possible diagnosis's given before it was finally confirmed as Wegener’s.

Since I started the medication I have felt really well, I am fortunate to be able to go about life as normal and work full time around hospital visits. Currently I have IV Cyclophosamide every 3 weeks (was 2), prednisone 12.5mg and various other medications to combat the effects of prednisone...I also have dormant TB (discovered whilst in hospital with the Wegener’s) so have medication to stop it flaring up. And I have a Zoladex injection once a month to try to preserve fertility.

[Jack]

Hi Mandy,
Lots of people on here have been diagnosed with TB, but I don't believe a word of it! I think it is just another Wegener's curve ball. :)

[Sangye]

Same here. Unless a biopsy of a lung lesion demonstrates TB, I don't see how they could tell. The treatment for it is harsh. I'd recommend that any Weggie who gets dx'ed with TB consult an infectious disease specialist at a major institution to proper evaluation.

[Jack]

You're up early Sangye. Hope you are feeling OK.

[Lola]

I am 61 and live south of Seattle, Washington. I have had WG for 20 years, but have been very, very incredibly blessed to have had so many years of comparative good health during my 40's and early 50's. It wasn't until the past 6 years that I have felt like I couldn't do the things that I love.

I have 3 adult children, 4 toddler grandchildren and my wonderful husband of 6 years. I receive a tremendous amount of support from my family; I just feel badly that my poor husband is getting a package he didn't really bargain for in the beginning.

My passion has been all things to do with sailing. When I was 44 I signed on for a sail training expedition on a small boat with 5 other people. We sailed from Lautoka, Fiji to Auckland, NZ. I was hooked and returned the next year for a 5 1/2 week trip on the same 42' boat to sail from Papeete, Tahiti to Puerto Montt, Chile - 4500 nonstop miles through the Roaring 40's (Southern Ocean). It was the most intense undertaking of my life - stuck in an area the size of most bedrooms with 5 other people for that long. I learned a lot about myself as we had no outside contact with the world, did not see another ship or airplane the entire time. We were knocked down twice, one time the porthole was caved in. That was the first time in my life I faced death. Funny, but it had a profound effect on me, in a positive way. Most folks on this forum have already faced death, and many at a much younger age.

The year after that, I jumped onto the same boat and sailed with a new crew, same capt., around Cape Horn, S.America. I would have to say that this was my crowning achievement - my Mt. Everest.

I've done more offshore sailing since then, the last time was 3 years ago when my husband and I sailed down the west coast of the U.S.

My husband and I met at a marina where we each had a sailboat. Our mutual dream has been to go cruising once we retire. Lately, that dream has seemed farther and farther away. I barely have the energy to drag myself down the dock to the boat, but once I get there I always feel stronger and find myself smiling. Hopefully we can do a modified version of our dream.

Our boat's name is Copacabana and our dinghy name is Lola. My name is Vicki.

I have enjoyed working as an RN for so many years but am really tired right now and would like to be able to spend more time with the people in my life. Both my husband and I are the responsible parties for caring for our 87 and 89 year old mothers. He and I grew up in the same neighborhood and went to the same high school - but did not know each other until 1992 when we were both reeling from divorces. We met at the same marina, but did not connect at all.

10 years later, we met again. We didn't even recollect that we'd met before - but for me, it was love at first sight. I guess timing is everything.
I am just grateful that my disease gave me the time to build some wonderful memories.

[renidrag]

I am 58 and ws diagnosed in August of 2009. My wife and I describe it as "Five days from dead". I was as scared as I had ever been. I have lived a heathy life, always on the go known in the neighborhood as the man who never stops. Well I stoppped. Doctors are amazed I had never been sick, never had an operation, had all the parts God had given me. This after 38 years of smoking. I have reflected on the Wegerner's dx and learning about it that night on the computer and if they had told me I had lung cancer I would have understood. This one caught me way off guard.
I am married to a wonderful woman Debbie, the one who shovels snow and cooks restaurant quality meals for me. Last noght she was bailing water into the sump pump in the basement. We have had record rain this past weekend. She never complains. She is my second set of ears at all the appointments. I would be lost without her. From a previous marriage Debbie has three children all grown, and I have two. We share six grandchildren. I am a Master Plumber and have worked construciton for close to forty years. Now I hold the license for a large company and do estimating. They have been wonderful to me. It is said Dale gets in his forty hours it just takes seven days sometimes.
My hobbies are gardening (which I am told is on the list of nono's with WG) and golf. I hope this spring or summer to be able to again swing a club. I am not being optomistic. I am also sure the chemicals they use are probably not really good for me. My involvement is in the lungs and walking is not my strong point.
I have enjoyed all the folks here and even from time to time throwing in my two cents. I try to remember to take a day at a time but my day is get up, go to work, come home, nap, dine, sleep, get up.................. you get the point.
Good things. Off prednisone and have dropped a ton of weight. Started at 254 lbs and a 42 inch waist. Down to about 220 and 38 inch waist. So it does come off. Of course I also gave up eating.
Aside from the fact I can not do what I used to I guess I am better than the alternative.Sorry to ramble but it is hard to put everything into chronological order. So to continue, December 09 had pulmonary embolism and had to have a filter installed in my Vena Cava. Now correct me if I am wrong, but being a plumber and having installed filters before(although not in the human body) I have found that filters clog. So I asked what the difference is between coumaden and clots and coumaden a filter and clots. My guess is about Ten Thousand Dollars. They did not take it well when I asked them where the access panel was for cleaning. Oh well. I promise this is it.
My best to all. Lets hope for the best and remember Jacks saying. "Nothing is so bad that it can't get worse" Love that one Jack. Best to all
Dale

[Sangye]

Dale I love your sense of humor. I didn't have the filter because my docs said it was a risk with vasculitis. I have the same question about it clogging, though.

[Sangye]

Jack-- I'm up so early because I'm off to JHU for ritux today. Bleh. Let me say it again BLEH. Definitely not looking forward to today.

[elephant]

She decided to come in to work early to get her hours in. That's Sangye for you, hard worker! :)

[Jack]

As I understand it, any clots caught in the filter are dissolved back into the blood given time.

[pberggren1]

Good luck Sangye!

[jola57]

As to TB, mine is positive and that is due to having a TB shot as a child. I am sure that all kids had TB shots back then. Without a biopsy I would not believe that you have a Dormant TB.

[moyan]

As to TB, mine is positive and that is due to having a TB shot as a child. I am sure that all kids had TB shots back then. Without a biopsy I would not believe that you have a Dormant TB.

Hi Jolanta and all. Strange, we got tb vaccinated when I was 11 = 60 years ago. Got too much of wrong vaccxin so big sores and I was told never to have a testshot. But..no reaction here when WG was tested and found.

[MCC]

Hi Mandy,
Lots of people on here have been diagnosed with TB, but I don't believe a word of it! I think it is just another Wegener's curve ball. :)

Hmm interesting. I tested positive on a 'Quantrifirum gold' (not sure how to spell) test, which does not give a positive result if you've merely had the TB vaccine as a child, and is supposed to be acccurate.

The treatment is only 3 x Izoniazid tablets, plus 2 vitamin B a day, for 6 months.

[Doug]

I will be 62 on March 22nd.

As best I can establish, based on symptoms, I developed full-blown WG around the start if my 55th birthday, and I piddled around for nine months treating the symptoms with over-the-counter drugs. My symptoms were: joint pain (ankles and knees primarily); "doldrums" (no energy, light depression because my symptons never went away....blah, blah, blah!); sinuses hemorrhaging constantly for the whole period with crusting over; night sweats, day sweats (how embarrassing to be someplace, instantly soaked in sweat!); dry cough; vision disturbances; ringing in the ears. I think that was it.

I worked almost 36 years for the same company. My job in quality assurance involved data analysis, analysis of customer returns, and other "stuff". Go to my blog (link below) and open the "Who I am" tab for lots of other detail.