Capabayan (Elizabeth)

[capabayan]

Hi all - newbie here
Just a little about me, unrelated to the disease.... I graduated from college a few years ago, and just got married last July (07/07/07) to the most wonderful man, one who has never once complained about my sickness or my inability to help pay all the medical bills that have piled up (we were without insurance during the one month that I needed emergency surgery). We live in South Carolina, USA, and absolutely love being married - that and my relationship with God have been the 2 things that have gotten me through the roughest times with Wegener's. He is an EMT and a member of the Army National Guard (in boot camp right now!), and working his way through seminary. I stay at home and take care of him and the house... and hopefully soon, a dog or two.
I just finished reading over the "Weggie Stories" that are posted, and must say that, even with the difficulties I have, I am blessed to have been diagnosed fairly early and to have some great doctors. I was diagnosed just over a year ago (April 2007) and am still on meds - 200 mg Cytoxan and an inconsistent dosage of Prednisone. Just went down to 20 mg daily, and desperately hoping my body can handle that, because the side effects (not sleeping, gaining weight) were starting to really get under my skin, which is rare for me. But God has been good and I am far better today than I was a year ago, though I still have a ways to go. So here's my story...

Pre-Diagnosis
It all started in August 2006, when I suddenly lost hearing in one ear. I have bad pollen allergies and thought it was related to that, so it took me a month or two before I went to the doctor. When I did, he thought it was just a bad ear infection and gave me antibiotics - which did nothing. This went on for a few months, trying one drug and then another; meanwhile, the hearing loss remained and I started having ringing in that ear. Then in March 2007, I started missing work (which I NEVER did) because of fever, nausea, fatigue, swollen joints... you all know what I'm talking about. They thought it was mono, strep, tonsilitis, rheumatoid arthritis... you name it, they suggested it. I wasn't eating because I couldn't keep anything down (and wasn't hungry anyway) and could barely get out of bed to walk over to the sofa for the day. It finally got so bad that my then-fiance, an EMT, called my parents to fly down to be with me (Massachusetts to South Carolina). This decline all occurred over a period of about 2-3 weeks. I had made one trip to the ER, but the doctor dismissed it as dehydration (b/c of the nausea), gave me an IV, and let me go home. Finally by the end of the month James (then-fiance, now my husband) and my parents decided I was going to the hospital. I was way too out of it to really know what was going on or even care...

Diagnosis
When we got to the ER, and they finally admitted me, I got 3 liters of blood & IV and the team of doctors started working - first thinking of Lyme's disease or lupus, but finally doing the lung biopsy and settling on Wegener's. At that point, besides the aforementioned symptoms, I also had a skin rash, constant productive cough, and probably other symptoms that I don't remember now. I was so bad James was scared he was going to lose me! The one huge blessing in it all was that they caught it before it reached my kidneys. God has protected me so far from having any major kidney problems, though once or twice my proteins were a little elevated, but that cleared up quickly. I was able to get out of the hospital within a week, although I was so weak I couldn't go up or down stairs at all, and I needed someone's arm to help me walk even just a few steps.

Post Diagnosis
I started off the treatment with 100 mg cytoxan & prednisone (don't remember the dosage). Things were consistently improving for the most part, expect for the fatigue - which the cytoxan will do to me after a few months on it. Just when I hit the 6 month mark, I couldn't get the cytoxan anymore so we switched to imuran... then problems started coming. That was just before Thanksgiving - and I was overjoyed that I could stop drinking 3 liters of water every day, just in time for the holidays! Well, by December my breathing was starting to get labored on random occasions, and by January it was noticeable to everyone around me. My good ear also started having problems, with the hearing going in and out and occasionally having the ringing sound. In February I had chest x-rays and they decided my breathing trouble was in my airway, so sent me to specialist at MUSC in Charleston (I would highly recommend Dr Lucinda Halstead to anyone with subglottal stenosis!). She decided it was so critical that she was doing emergency surgery that night! My airway had closed to the size of a 6-month-old (and I'm 24), and was filled with granulomas. At first she told me I would need a trach and they prepped me completely for that... but when she operated, she was able to successfully dilate it and scrape out a lot of the granulomas. And I felt like a new person the next day after the anesthesia wore off!! I hadn't even been sleeping at night because I was focusing so much on trying to breathe. Unfortunately, at that point we started seeing elevated protein levels, so between those two problems I had to go back on 200 mg Cytoxan and 30 mg Pred. I know that my pred levels are a lot lower than some of yours... but the side effects are really starting to get to me!!

Now I am still on the Cytoxan, though we will hopefully be switching to methotextrate within the next 2-3 months. At my appointment last week, we started tapering off the pred (finally, more sleep, and less weight gain!!!). And I went to Dr Halstead a month ago and she said my airway looked fabulous. However, I have noticed some labored breathing the past few days, and am desperately hoping that it's not a result of lowering the pred (since that happened last time we tried to lower it). After all, I have pollen allergies and it's pollen season, and hot outside, and I'm out of shape... but I have a bad feeling I'm only trying to convince myself and I will need surgery again. So, of course, it's a day-to-day battle of the mind as well as the body. I have been blessed with very supportive parents and parents-in-law, and an absolutely wonderful husband who do anything for me, not to mention a few really good friends who I can call on if he's at work. I did have to stop working, and sometimes I think I'm going to go crazy with nothing to do, but then typically I'll have a bad spell and be thankful that I don't have to get up and out to a job every day. I love taking care of my husband and my home, and most days now (since the airway surgery) I have the energy to do whatever needs to be done, which is a huge change from a year ago or even around Christmas time. And I have God; I would never have made it through this past year without having Him to lean on and glean from!

Well I'm sure I forgot to mention one or two things, but that's the gist of my story... did I mention that I'm only 24? I get tired of hearing the nurses exclaim that "You're too young to be in here!" AHHHHH I know they don't understand.... But it's one day at a time, one person at a time.

Prayers for you all, and thanks in advance for the mutual support!!