My story is like most Weggies 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 three quarters if you ask her).
 |
| New Years Eve 2009/10. My last days as a normal person. |
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.
 |
10 Days before the tubes. I'm feeling sore and slightly des-
parate to get some resolution to my headaches and ear
problems.... but we're out at the hill with my peeps. |
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 euphoric trance, and it came back with a vengeance. 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 percacets 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 anomaly 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 from an amazing and very competent doctor, Dr. Hawkwood, and the doc is concerned that I've messed up my stomach with pain killers, my liver enzymes are up, and my kidneys ain't 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 ear drops 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.... and I haven't had a weekend bender for more than two decades.
|
May 03, 2010 - This is what pain in WG looks like before
diagnosis. Check out the bags under the eyes (right eye
especially - it still gets big and puffy when I'm feeling off.) Organs are failing at this point without us knowing. Lungs
are nasty and covered with granulomas, kidneys are not
functioning properly, liver enzymes high, pancreas enlarged,
sinuses are a mess and getting chewed up by the disease. Cool stuff. |
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. My joke was that I was only one good ear infection away from my ideal weight.
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.
 |
May 07, 2010. In the hospital - secondary emergency - waiting for a bed.
Morphine waggon has come in, as has my beautiful little goil. |
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 occasional 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 CT 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.
|
And now for the comic relief of the story. Here
I am after getting my hair washed with some crazy
shower cap contraption that allows you to wash
without water. What you can't see is the hose size
tube sticking out of my chest and draining lung
juice (whatever that is) which is why I couldn't
wash my hair. Results are astounding are they not? |
May 10, 2010. Start the cocktail. Re-boot the computer and start my new life.
 |
| Hanging with my bunny at mom and dad's house. |
Back home after a few weeks of recovering at mom and dad's house. Thank God for moms and dads. They took such good care of me when I couldn't walk, and spent all of my time in horizontal. I love those two. I'm back home now, hanging out with my little monkey and her beautiful daddy. 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 prednisone. 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 bizarre. 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. I'm also grateful to the wonderful people on the Wegener's forum who have inspired me, helped me out in my crazy panic times, and are so willing to share their experiences to help us newbies out. I say it alot on there but it's worth saying again. They are amazing.
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 of Marmot this winter.
I know I use a lot of superlatives when I talk about this but that is the only way to describe the people who've been there and the support I've received. It's all been UNREAL, in the best sense of the word.
 |
How's this for prednisone cheek action.
Bri and I going out for a bike ride a couple
months after the hospital. It was actually easier
to get on a bike (momentum and all) than to walk.
On a bike you could pedal - coast, coast, coast.
It's also great for the brain and the
recovery process to feel a little wind in your face. |
This picture above was taken mid summer. Things kept generally improving until I had an appointment mid October and my rheumy and I were about to switch from Cyclophosphamide to Methotrexate. A few days before going into the city for my appointment I went and got a flu vaccine - first one in my life, as instructed by my doctors at the hospital in May as I am now immunosupressed girl. I was unhappy to see that the H1N1 vaccine has been incorporated into the flu shot, but went ahead anyways. Two days later I started to get some of the old symptoms again, and within two weeks of getting the shot I was in the hospital with a full blown flare. Back on IV Solumedrol (1000mg the equivalent of more than 1500mg of prednisone) and then to 50mg of pred and having to go through the wean again. On again, off again with the cyclophosphamide as my liver enzymes went through the roof again and the concern was that it's the chemo setting them off. Although in my heart I knew that I'm one of those rare cases where there is liver involvement and at two points had to insist to be put on the chemo drugs again as I could feel very bad things (which could possibly cause permanent long term damage) happening inside my head as the disease went on without being treated. Since going back on my liver enzymes have stabilized but my inflammation markers are still way up there. I also have constant head pain, sinus pain, nose pain, I'm deaf in my left ear and going deaf in my right ear, there is crazy shooting pain in my right ear and my eyes are not feeling any better. Time to try something new.
 |
The height of the pred face grossness.
End of Nov, 2010. That's my beautiful
sister beside me. |
I was in the hospital in the beginning of November and I write this in February of 2011. I've been on cyclophosphamide now since May 10, 2010 - way too long and the possible side effects are NASTY. I have a new rheumatologist and we're about to switch treatment and try and break this thing and get into remission. I hope to add to this page with some positive news of 'spontaneous remission' or a drug induced one, but a remission nevertheless.
