Hello!- 21 yr old with WG

[Lauren]

Hello! My name is Lauren and I am a 21 yr old college student. I was diagnosed with WG last September right as it was about to take my life.
Last summer I was sick with sinus issues and an ear infection in both ears that would not go away after about 5 different antibiotics. On Sept. 1, I had surgery because my ENT said I had "polyps" lining my sinuses. He did a balloon sinuplasty, septum reconstruction, and controlled ruptures on both ear drums. A week later, I ended up going in for sugary again to have tubes put in. A few mornings later, I woke up vomiting/coughing up blood. My boyfriend rushed me to the ER where they did a CT of my chest and found "spots". I was admitted to the hospital immediately.
I was at that hospital for a week, and I remember barely anything because I was on so much pain medicine. The doctors weren't coming up with any answers and finally transferred me after almost letting me die. I could barely breathe at this point and was literally blue.
I was transferred to a research hospital, put on life support because I could no longer breathe on my own, and put in a medically-induced coma.
My lungs were bleeding, my left lung collapsed and needed two chest tubes, and I had a hole in my lung that air was leaking through from the ventilator and causing me to blow up like a balloon. They could not move my bed a single degree without my vitals freaking out, so it was literally impossible to take me to CT to get a look inside. The doctors were basically working blind and just hooking up everything they could to me to see if I would improve.
At the time, I had a rash developing all over my feet and legs. I dermatologist did a biopsy of the rash and finally got a confirmation of WG. They started me on IV cytoxan and pred and I slowly began to improve.
I woke up from my coma after almost a month, completely paralyzed. I relearned how to walk, talk, eat, everything… After four months of hospitalization, I am home. I have returned twice for week long stays, once after getting a serious case of shingles.
Sorry for such a long story, but it has been a long journey so far. I am now on oral cytoxan and 20 mg of prednisone. Doctors are talking about Imuran within the next week, just waiting on my a blood test to come back. I am very excited to join this forum as I have been having a very difficult time remaining positive and really need the support. I look forward to chatting with many of you! Thanks in advance!

[Geoff]

Hi Lauren,

Welcome to this forum where I am sure you will find plenty of positive help and support. It sounds like you have had a rough time of it but hopefully getting back on the right track.

Everyone will rightly stress the importance of getting a proper Wegs Team around you, and as I have no knowledge of the area you come from I'll leave it to them to make the recommendations!!

Keep us informed as to your progress and good luck!

[renidrag]

Glad you are here, this is a wonderful group of people. What part of Texas are you from? Many folks will follow for a hello and talk (nag) about getting a WG specialist. There is a thread here about what the newly diagnosed should know, you may want to read that. Good luck and we are here for you.
Dale

[LisaMarie]

Lauren
We all have been where you are at one time or another...staying positive on this roller coaster disease is hard...try to keep your chin up...we are here for ya....this is a safe place to rant and rave laugh and joke as well as get valuable insite and information....if you skim thru some of the threads you will see we all have WG but it effects all a little different....please find a WG specialist...one with alot of experience and willing to listen to you...it s better to ask and be told it is not related to WG then ignore it and have a hugh flare......I had a near death experience last september but I was already dx with WG so they had a little heads up.....I am going to Mayo In Rochester , MN.
I needed a second opinion and now plan to see if Dr Specks will take over my care and use my Doctors here as his helping hands...I have several specialist now.....and being a nurse does not help all the time...you know the saying alittle knowledge can be dangerous....also listen to the WG here ...they will not miss lead you...they know I was sicker than I thought I was and I ignored their "nagging" as they call it to go to the ER and almost died.
As I was told you can Live with WG...you just have to accept your New life...not easily done but true none the less

[JanW]

Welcome Lauren:

I will absolutely say that as a young person, it's important for you to get a specialist on your team if you are going to survive and thrive with these disease for decades. I am assuming that you don't have kids yet, and if that is important to you, you are going to want to do as much as possible to protect your fertility. Also, because you will be/are on pred for probably a few times in your life, you want to minimize your exposure to that drug if at all possible -- again, I am looking at this from the point of view of someone who has more than 20 years on you (I'm 46 and was dx 2010). There are major vasculitis clinics at Boston U., Johns Hopkins University, Mayo Clinic and Cleveland Clinic and you will find members here that go to all of them. I myself go to the Hospital for Special Surgery in NYC and see an ENT who trained at NIH with the team that is now in Cleveland. Ask any questions you want; you will find that we are a friendly group!

[WeggieParent]

Welcome Lauren - what a beautiful picture in your profile!!
You definitely had a worse case scenario with WG. I'm glad they finally diagnosed you before it was too late. How scary! My daughter (16yrs old) had a very similar experience to yours last year spending 2 weeks on life support and having holes in her lungs caused by WG. I hope it will encourage you to know that today she is living a happy teenage life! She is vigilant about taking her meds and watches for symptoms that could indicate a flare but she is able to hang out with her friends and be a normal teenager. We don't have as many years experience as many on this forum but I relate our experience and tell you that getting a WG specialist is worth it. We drove to the Cleveland Clinic (16 hrs away) and now those doctors conference call with our doctors in Little Rock when needed. There is a wealth of information on this forum. Best wishes to you and I'm glad you finally have your diagnosis and can begin feeling better!!

[NicShaf]

Welcome to the site Lauren. Wow, you went through a lot before dx, but I'm glad to hear that you're doing better now. There is so much great information on this site, I'm glad you found us.
Best of luck, and keep us informed on how you're doing.

[Lauren]

Wow... Thank you for all of your replies! I live a few hours from Dallas, TX and make the drive several times a month to visit my team. I have a pretty great team of 3... 2 Pulmonary guys and a Rheumy. My main Pulmonary actually had an aunt pass away from WG several years ago, so my case has become really close to him.
It is so hard to find a decent ENT! All of my ENTs over the summer had a chip on their shoulders which is a big reason why I almost died. Nobody would listen to me then. I met with one guy a couple of months ago, and I really like him so far. I have a follow-up next month, so we will see how that goes.
I have started meeting with the OB to talk about fertility. Unfortunately, there is not much I can do until I am off the Cytoxan. They had to start it while I was in my coma. Since it was the only option, there was no time to talk about harvesting eggs.
So my fiance and I are talking about all of our options in regards to children in the future. We realize that adoption may be the path we take. Does Prednisone affect fertility? I knew that Cytoxan definitely does.

[Sangye]

Hi Lauren, welcome to the group. I'm so sorry for what you've gone through already and I hope you improve quickly from this point on.

Here's the thread for you to check out:
What the Newly-Diagnosed Need to Know

Pred doesn't directly affect fertility like ctx, but it does cause widespread endocrine disruption. Any time you alter one hormone, it alters all of them via feedback loops.

[Chris G]

Welcome Lauren. My gosh what an ordeal you went through! I was literally holding my breath while reading your story. I'm so glad that you are healthy enough now, that you're almost ready to step down off of cytoxan.

Yes, it is difficult to remain positive, but look how far you've come!! When you feel down, maybe focusing on that will help. And you will find lots of support here!!