Hello from a new Weggie in Canada

[marta]

Hello from the beautiful Rocky Mountains in Alberta, Canada. I've been looking through this site and wow, there's lots of us considering what a rare disease this is. My story is like most in that it started out slow and undiagnosable and then kinda just exploded.

I live a pretty healthy lifestyle, ski a lot, bike a lot, spend quite a bit of time playing outdoors. I had my first child when I was 40 and she's now 3 (three and a half if you ask her).

This all started in January of this year (2010) when her and I were driving up to the ski hill to go for an afternoon of playtime on the slopes, and my ears popped on the drive up to the mountain. They didn't unpop, and at the beginning it was nothing more than a nuisance. The popped feeling in my left ear lasted for a few weeks, at which point I thought I should swing by and just chat with a doctor, as it was a little annoying, nothing more. The doc told me that it's common and usually clears itself up within a month or so. By the end of a month it hadn't cleared up, and now it was full of fluid which made hearing a challenge, and I thought I should check in with the doc again.

This brought on the first bout of antibiotics. Didn't clear up. Now it's starting to hurt a little - very little, but it's there, so go back to doctor, second bout of antibiotics. Pain in ears and head is starting to elevate, but still nothing I can't handle. I'm now at about two months since the first ear popping experience. Go back at two and a half months for another bout of antibiotics, and now it's time to get a referral to an ENT. The pain is starting to get nutty and the referral process is taking a bit long. I finally get to see an ENT and he puts tubes in my eardrums to drain the fluids and in theory it will make it all better. This is when the proverbial poo hit the proverbial fan.

The first day after getting my tubes put in I was so elated that this whole thing is over and I can now go on. The next day, the pain came back after my uphoric transe, and it came back with a vengence. I started to pop Advil like they were going out of style. At first it kept things at bay, but that didn't last very long. After a week and a half I had put down a couple of bottles of Advil, lost about 10 pounds, and found myself at our local hospital emergency room (it's a tiny hospital with not much for diagnostics, so all they did was give me a shot of Terridol and some perkacets and sent me packing). The percacets and I did NOT get along well, and I'm not going near those babies again with a 10 foot pole. Back to the ENT in the big city (4 hour drive from where I live) so that he can tell me that I'm a bit of an anomoly and should just keep putting the drops in my ears and take another bout of antibiotics (he still hasn't looked in my nose or throat yet, so that would make him not an ENT, but just an 'E'). Drive back home and suck it up for another week. Can't handle the pain, so I go to Emergency in the town next to us (about an hour away- -they have better diagnostics). Get the once over, and the doc is concerned that I've messed up my stomach with pain killers, my liver enzimes are up, and my kidneys aint looking too good. I've also lost about 15-20 pounds by now since getting the tubes put in two weeks prior. He sends me back to ENT, or E, and he tells me that everything is OK, keep putting the eardrops in, and my liver enzymes look no worse than, get this, "someone who's been on a bender over the weekend". At this point, I'm having a hard time walking, eating, drinking, breathing, living....

I left feeling like I've lost my mind.

I decided to stay in the city as things were not feeling very good in my body and sent my husband and daughter back home without me. The next day I decided to go to Emergency as I was not feeling like I can hang on too much longer without the aid of some fluids and nutrients if nothing else. At this point three weeks after the tubes were put in, I had lost almost 30 pounds, and was looking like a gray shadow of my former self.

May 06, 2010. Evening at Emergency. I go in and tell them the whole story. It was funny because it was that night that I had my first nosebleed and ended up spitting up a golf ball size chunk of hunk of blood that came out of my sinuses. I couldn't breathe so they took some chest X-rays, and that was where the whole thing took a turn. My lungs looked like they were completely invaded, so that night the ER doctor told me that what I most likely have is secondary cancer of the lungs, and my next step is seeing an oncologist who will also determine where the primary cancer is located.
WHOAH!!!!! Really? No way my daughter is going to grow up without remembering her momma. So I'm sticking around for at least a few more years. That's what went through my head after the 'Whoah'

May 07, Marta gets stuck in a 'House' episode. I'm in the secondary emerg, waiting to get a bed and get admitted. I'm on morphine now, so the pain at least is gone. I see a group of doctors in the distance, huddled in a circle and talking with the occassional darting glance shooting my way. They are talking about me - for sure. Suddenly they all stream up and line up in front of my bed. One of them is not wearing a smock, and I looked at him, and said 'you guys are like House, and you must be the 'House' character, although you look much much nicer.' I was dead on. It was a group of Internal Med doctors who work as a team and they came to me to see if they could take my case on as a teaching case as they "highly suspect that the earlier diagnosis is incorrect and they think they know what it is". I was thrilled to have them take my case on, and rightfully so as they were like angels sent from heaven to fix this whole sorted ordeal. This was at about 7am, by noon, I was in for a full cat scan to establish weather the spots on my lungs were Wegener's. The scan came back inconclusive. By 5pm the 'team' had set up a lung biopsy for the next day (Saturday May 08) and I was in first thing in the morning. My dream team, as I've called them since (they actually have a team name, 'the green team') had the surgeon come in on his day off, they had a pathologist come into the operating room to examine the biopsy right there and then, and they opened up the operating room for me alone. I feel like I had horseshoes up my bum, I was sooooo lucky..... We came out of the operation and they were 99.9% sure that it wasn't cancer and was indeed Wegener's.

May 09, 2010. Meet the rheumy. I'm recovering from surgery, hopped up on morphine, and the doc comes in and tells me all the gross side effects from the drugs, but that this is our only option really. It was like I was watching some movie, it was quite surreal. Although there is no question in my mind that - yeah baby, bring on the drug cocktail.

May 10, 2010. Start the cocktail. Re-boot the computer.

Fast forward to July 08, 2010. I'm back home, hanging out with my little monkey and her beautiful daddy. Went out for my first mountain bike ride - two months to the day of the lung biopsy. Feeling stronger each day, got a lot of cheek action happening on my face, but that makes for more fun at home, we have all sorts of cheek jokes going on. I still can't hear out of my left ear, but that's become quite insignificant relatively speaking. I have started to wean off the prednasone, (I started at 60mg and am now down to 50mg, 45mg starting this Monday). Haven't quite figured out the sleep thing yet. My hemoglobin is almost back to normal, so I'm not turning all technicolour shades after taking my cyclophosphamide, which is good as that was quite bizzare. I never know if the weird little things I'm feeling inside are Wegener's based, crazy toxic drug cocktail based, or just in my head, but I think that'll come with time - knowing that is. I'm loving every moment of life, and am thankful to my amazing DREAM TEAM, my beautiful family, my friends, the town I live in (which has the most amazing people) and whoever came up with the drug cocktail to keep us Weggies alive and kicking.

So there, that's my story... hopefully the momentum curve I'm on keeps going in the same direction and I can't wait to shred up the slopes this winter.

[pberggren1]

Welcome Marta:

My name is Phil Berggren. I live in Swift Current, SK. I was diagnosed in April of 2003 at St. Paul's Hospital in Saskatoon, SK. I have heard of about 4 other Wegs patients from Calgary. I assume you were diagnosed in Calgary?

Your story sounds quite familiar to mine. I have no hearing left in my left ear and about 50% left in my right ear.

How are you feelig overall? Do you have fatigue or joint pains or other pains?

Again, welcome to the site.

If you wish I can give you my phone numbers or vise versa.

[marta]

Hey Phil,

Thanks. No I was actually diagnosed in Edmonton at the Royal Alexandra Hospital. I live in Jasper. My rheumatologist is in Edmonton, and he told me that he has 14 Wegener's patients. While I was in Hospital they told me that another man got diagnosed with it a week earlier. Crazy, hey?

So your hearing never came back? Mine's getting worse as far as the hearing goes, but I'm very glad that there is no pain anymore. Compared to that crazy pain before I got diagnosed, everything is wonderful. My pains went away quite quickly after I started the drugs. I haven't had to dip into the codeine, or any other pain killer for that matter, in over a month. I have odd days, but those are hard to describe and articulate, but most if not all of my days seem to be quite alright and constantly improving, or moving in a more positive direction. No joint pains, and I seem to have managed to stay away from the yucky brain games that prednasone seems to play with people. Touching wood as I am writing all of this. My kidneys were affected somewhat and were showing some protein and blood a few weeks back but on the last blood test that seems to be going back down.

I just saw my X-rays for the first time when I went for a doctor visit last week, holy crapoloa, what the scene in my lungs. But they seem to be getting better... I saw the first ones from the first day at the hospital, the cat scan from my second day at the hospital and then the follow up x-rays from about three weeks ago with the thoracic surgeon. The spots are definitely getting smaller. We're going to try and stay away from getting any more x-rays for a while, since I've gotten a pretty good dose of radiation in those first few weeks.

Thanks again Phil, and I am very glad I found this site. I have questions, and I know that here I will get answers. This is a good place.

[Jack]

Hi marta and welcome to the site. Such a shame that you had to come and find us.

Glad to hear that you are responding quickly to treatment, but please bear in mind that Wegener's can be a long journey and can often have setbacks. I hope everything goes well for you, I'm sure it will, but if in doubt the more quickly you take action the better. This is the start of a long learning curve, so ask any questions or just voice how you feel. Someone will always try to help you out.

Great first post by the way!

[marta]

Hey Jack,

Yeah, long journey, I'm totally up for a long journey.... much better than a short one. The setbacks I can do without, but we'll deal with those bad boys as they come.
Thank you for your wisdom, I know I'll be looking for more in the future. I've always said that I enjoy learning curves, but the universe has thrown me a funny one to play with. I will ask questions, lots and lots of questions, I've never been shy on that front.
I already have a few, just need to organize them in my head so that they make sense to others.

Thanks again Jack... I tend to ramble on and on, so I'll try and break that habbit.

Nice to meet you all.

[Cubby]

Hi Marta,

Welcome. I'm new too, this is actually my first post. My very best friend was just dx'd yesterday with Wegeners. I've been to all of her specialist appts with her the last month or so, and am trying to get myself acquainted with the forum and the info here.

She too had a horrific ear infection which was the start of this..........

I will keep everyone in my prayers and am looking forward to getting to know everyone and how I can be of support to my friend.

Cubby

[jola57]

Marta welcome, Edmonton has some good docs so you are in good hands. I am glad that you have a rheumy that has a bit of practice with wegs. It is important to catch flares in early stages, and not have to go thru what you went in the beginning. I like you desctription of the ENT the E, ha ha ha. What an incompetent, not to look at nose or throat. I live in Vancouver area but lived in Calgary for 6 years and visited Jasper often when skiing in the area. I am glad that you can ride bikes and skii. Unfortunately due to complications with my feet, peripheral neuropathy, and a dropped left foot (google it) which I can move now, I have no power in my feet/legs and I walk long distances with a cane. Thus my beloved skiing is a bust. I used to burn up Panorama, Lake Louise, and of course Whistler, I miss those days. Good luck with your recovery.

[marta]

Hey Cubby,

One thing that blew me away and still kinda chokes me up is the unbelieavable support I got from family and friends. Living in a small town sure has been a blessing and has made this a positive experience with all of the amazing people around me. Your friend is lucky to have you in her corner. Having this all really fresh in my mind, I can tell you that - in my experience anyways - this first little while is totally surreal and I was just trying to figure out the crazyness going around me. I would let it sink in slowly at night while I couldn't really sleep in the hospital... but I still get soggy eyes when I think of all the love and support and positive energy around me while I was horizontal, and after of course... so good on you and good on your friend.

Stay strong, and stay positive. I honestly think that this has been a blessing in so many ways in my life. It also could have been a much nastier diagnosis. There are other things out there that we can't fight, this one we have a good chance at beating down anyways. I guess it's all relative, right. Depends on what you compare the situation to - my own theory of relativity...

[marta]

Thanks Jolanta,

I told my 'Dream Team' that I would be biking by the end of summer and definitely skiing this winter. Ignorance is bliss sometimes. I'm using the mental game you use when you bike and ski... you know, 'don't look at the trees, look at the path through the trees instead', so my ignorance and sheer stubborness is what's driving me right now. I've always been amazed at how much the brain can help in sports and I'm sure that it can do similar things with the body.

I'm sorry to hear about the complications that are preventing you from rippin' it up. If you can move your foot now more than before, does that mean there is hope that it'll come back enough for some slipping action on the slopes?

If you're ever in this neck of the woods again while travelling through, please don't hesitate to look me up (this goes for the other people on this forum) - we live in a tourist destination, so it's a beautiful place to soak in some of the good stuff that life has to offer. Just send me an email here and I'll give you my contact info. Here's me soaking it in....it's a bit like a mini Whistler
IMG_0891_2.jpg
By the way, I love your profile pic, I can totally relate to the little dude.

[Cubby]

Thank you Marta,

BTW I love your name. I'm from the Chicago area but was able to visit Canada once. Went to BC, the Burnaby area. I would love to go again and am more interested in visiting Manitoba for some odd reason. Being from Chicago, it is like been to one big city they are almost all the same, so I prefer smaller non vacation type area's which I guess is why Manitoba sounds attractive to me.

My friend who was just dx'd is my best friend. We are as close as family. I was her maid of honor. She is my sons godmother and was my labor coach. Was there with me when I gave birth via c-section. She didn't eat all day as she was frantic she'd miss something. The nurses joked she was going to pass out from not eating, but when would it happen? I remember right after they took my son out, the anesthialogist (sp) said help help, and she was passed out on my left shoulder. They wheeled us both out of there in wheel chairs. We have that fun tease each other kind of friendship and there is nothing either of us would not do for the other if we can.


We spend every holiday together except easter. She went to all my court dates with me for child support.

I just want to be a sense of support and knowledge for her and her family. I know her husband and children will have a hard time with this. The unknowns of Weggies is scary. It really is since there are no answers.

Even her husband and daughters have been so good to my son and I. We are all like family.