It feels nice to share:

[Orpheus]

Been lurking on these forums since Mayish (I signed up while I was still in the hospital) and been reading a lot of stories between now and then. I guess it is time to share my story to those who are interested.

For me things started to get really bad on Sunday May 10. I work on the weekends and my Saturday shift was brutal because I developed a nagging dry cough. Up until Saturday my only symptoms resembled a sinus infection that wouldn't go away (in fact I can pinpoint the exact day the symptoms started. On April 22nd I was awoken by an extreme nasal pain located right between the eyes). For 3 weeks I went to doctors including my family doctor, ER doctor (the pain was so bad I was not able to sleep) and a ENT, all of whom thought it was just a simple case of sinusitis.

On Sunday things started to get really, really bad. I was tired leading up to that point but I was able to force myself to get though the day. Sunday morning, not a chance and for the first time I had to call in sick to work. By Sunday evening I was bringing up blood and that's when I went to the hospital.

Getting to the hospital we (my mom drove me to the hospital) noticed it was PACKED, patients were even waiting outside. Not to jump ahead but 3 things saved my life that evening and this was the first one (side note, I had an appointment with my ENT doctor that Monday morning). I didn't want to stay because while I was coughing up blood I didn't feel at the time it was so bad but my mom insisted that since we were here that we step in and quickly see the trauma nurse. (I am Canadian, free medical care and all that so it wouldn't cost a thing just to step in and get a nurse opinion of the situation).

As I said before there were 3 things that saved my life that evening, the first was my mom insisting to see the nurse, the 2nd was the trauma nurse. Since I had an appointment with my ENT the following morning and with so many patients waiting in the ER I didn't think it was necessary to spend the entire night waiting to see the doctor when I was going to see one at 8am the following morning. The nurse too thought since I was seeing a doctor on Monday waiting around in the ER wasn't necessary, however, as I was getting up she quickly sat me down and said while I was here I should get my blood pressure checked. It was the first real sign something was wrong, my blood pressure was drastically low (during my whole ordeal I never once had a fever). Once she saw my blood pressure she had one more look at me, got up and went to talk to someone in the back, returned and I was immediately admitted and I saw a doctor 30min later and had my first chest xray 20min after seeing the doctor.

If I went home that evening I probably would have died either by drowning in my own blood (my lungs were filled of my own blood by Monday morning) or through kidney failure, the disease was hitting me that hard that fast Sunday. The ER doctor had no idea what was going on, my chest xray showed these HUGE white masses on both sides of my lungs and a huge unknown mass on the left upper side. Her best guess was what she called double pneumonia or possibly Tuberculosis, so I was sent to isolation were things got REALLY scary.

While in isolation I started bringing up buckets of this thick, dark red blood and I will never forget the shear terror in both the nurse and my dads eyes as both looked at me helplessly. The only thing the nurse could do was run around finding things for me vomit into (not to gross people out but I cannot over exaggerate just how much blood I brought up and how long I was vomitting).

It is now 2am Monday morning and the 3rd and final thing that saved my life will occur, I saw my doctor for the first time. He walked in, without a mask (remember people thought I had TB) and looked me right in the eyes and said "Mike, you don't have TB. I have seen this before, you most likely have a rare vascular disease called Wegeners. I am going to start treatment right away but we will not have confirmation of the disease for sometime." I was immediately taken to the ICU where I was given Prednisone and Procytox and thats when things started to get better. Monday afternoon I had my lungs drained of blood (they took over 1L out) and by Tuesday morning I started my first treatment of Plasmapheresis. Between Monday and Tuesday there were some close calls, I almost need a blood transfusion and was almost placed on dialysis. If that doctor was not on call, or if that doctor was not confident enough to begin treatment before getting a confirmation of diagnosis I would have most likely died.

It is now 3 months later and things are looking...better. I spent 16 days in the hospital (left May 26) and while I am not in remission yet disease wise things are looking really good. However, my body has/is taking a beating. Between the disease and the medication to treat the disease I have the following,

Impaired kidney function (it is improving and I am up to 50% function with a creatin level of 150, norm is 100)
DVT in my left leg that I am treating with warfarin (what is freaking me out, I may be on this medication for the rest of my life and I am only 30)
Avascular necrosis in both knees
Blown out ear drum - there is no nerve damage but I am pretty much deaf in my left ear

My lungs however have made a full recovery and the mass on my lung was not cancer.

So in a rather long nut shell that is my story. I moved back in with my parents and I am taking things day by day. The Prednisone is absolutely kicking my ass and I cannot wait to get off of it. I am down to only 15mg (started at 150 I believe in hospital) and my attitude is starting to return to normal. I started at 250mg of Procytox and am now down to 150mg, there was a scary 2 weeks where my WBC was less then 1 (he said .8, I don't know the units but the normal for a adult male is 4).

On a personal note the thing I am most scared of is relapsing. I now know what to look for but just how fast the disease almost killed me the first time I am very afraid. Right now the doctor told me if even I get a fever I should go right to ER and call/text him (both my vascular doctor and my family doctor gave me their cellphone number so I can reach them at anytime. While really nice it kind of freaks me out because it is a reminder of just how sick I am). Because of the Avascular necrosis I am bedridden, I should as much as possible stay off my legs (my friends bought me a Nintendo 3DS to keep me busy and the 3D is a lot of fun fyi) and I maybe bedridden for a long time because I will require surgery to repair the damage. And because I am on blood thinners and everything else that is going on with me the surgeon does not feel surgery is a good idea at this time.

Anyways thank-you for listening, I know it was a long read.

[Birdie]

I was tired leading up to that point but I was able to force myself to get though the day. Sunday morning, not a chance and for the first time I had to call in sick to work. By Sunday evening I was bringing up blood and that's when I went to the hospital.

I can pinpoint the exact day the symptoms started. On April 22nd

That's an awful story told well. Looks like you're in recovery and should do much better over the next few months. My DVT's were severe and took over a year to heal well enough to no longer cause a major problem.

You obviously know how important it is to monitor the effects of warfarin. Like prednisone it's an evil you need to appreciate. I doubt you'll be on it for years but if the DVT's are bad it might be a year. Another year before they stop causing pain. I had a couple bad ones that put the hospital ultrasound woman into a cold sweat, running for a doctor to look at it in real time.

Seems Wegeners goes one of two ways, hard and fast or smoldering over time. Since you know the date it started I'd like to ask a question. Did you have a health issue related to infection or antibiotics which triggered Wegeners?

Now about that fear of remission... you now know how to spot it and they now know how to treat your case of it. Any remission won't be nearly as big an issue as the first time.

Take care,
Gary

[Pete]

Welcome to the "club", Orpheus!! Sounds like you've had a really wild ride with our dumb disease. The good news is that the disease is treatable. It may take awhile to get to a stable state, but you will achieve a "new normal". I hope that new normal allows you to lead a fulfilling life.

Keep fighting, and let us know it's going.

[Orpheus]

That's an awful story told well. Looks like you're in recovery and should do much better over the next few months. My DVT's were severe and took over a year to heal well enough to no longer cause a major problem.

You obviously know how important it is to monitor the effects of warfarin. Like prednisone it's an evil you need to appreciate. I doubt you'll be on it for years but if the DVT's are bad it might be a year. Another year before they stop causing pain. I had a couple bad ones that put the hospital ultrasound woman into a cold sweat, running for a doctor to look at it in real time.

Seems Wegeners goes one of two ways, hard and fast or smoldering over time. Since you know the date it started I'd like to ask a question. Did you have a health issue related to infection or antibiotics which triggered Wegeners?

Now about that fear of remission... you now know how to spot it and they now know how to treat your case of it. Any remission won't be nearly as big an issue as the first time.

Take care,
Gary

Before this I was a very healthy person, the only time I would go to hospital were from physical injuries from playing Football or Hockey. Actually, that is not true. Back in Nov 2014 I had to go to hospital because I was severely dehydrated and the doctors thought I had bronchitis. I was given an IV in hospital and a prescription to clear up the infection (I cannot remember what the prescription was and I cannot remember if I was given an antibiotic in the hospital). Totally forgot about that. But it cleared up and I was back to 100% within a couple of days.

Also, what I didn't say was before the April 22nd pain I had a really bad runny nose. I would go through an entire roll of toilet paper in 2-3 days, it was really gross. My runny nose is still an on-going issue, but not nearly as bad as it was. The crusting wont stop and from time to time I would get this rather weird smell in my nose (god I hate that smell, it really only went away 2 weeks ago).

[drz]

You sound like a younger person which will aid in you recovering more and faster than you might a few decades later. Most people with Wegs relapse or at least have significant fluctuations in their residual symptoms that increase their discomfort. But once you are diagnosed, and usually on some maintenance meds, you will get treated again more quickly and your symptoms will seldom be as serious or life threatening as the initial event when the correct treatment is unknown and delayed since the diagnosis is uncertain. Wegs is usually a roller coaster ride with ups and downs so enjoy the good times and remember the bad times usually don't last forever.

Often some of the losses from serious Wegs like hearing loss tend to be permanent and it can be hard to adjust to "your New Normal" but after time you will come to terms and adjust. Some people here though have had remarkable recoveries and done super human things after their diagnosis and many return to a rather normal full life so don't write anything off too soon. The future is uncertain for everyone and will eventually sort itself so work toward having the best life you can and enjoy it.

[Birdie]

Back in Nov 2014 I had to go to hospital because I was severely dehydrated and the doctors thought I had bronchitis. I was given an IV in hospital and a prescription to clear up the infection (I cannot remember what the prescription was and I cannot remember if I was given an antibiotic in the hospital).

My bet is... drum roll... that infection is what triggered your immune system to do the Wegeners dance. November to May is a good time frame for a hard & fast case of WG to have caused that much damage. My belief in this as the cause of Wegeners is seldom held by anyone in the medical profession. Buncha chickens won't stick their necks out far enough to say it.

[annekat]

Welcome, Orpheus. You got hit hard and fast, unlike some of us whose symptoms dragged on for years in a less dramatic way, until things suddenly worsened, and we got diagnosed. The hard and fast way could be a lot scarier. While the slow and smoldering way leads to a delayed diagnosis and more chance for damage to occur, unnoticed, over time. Your blown out ear drum could heal, and you could regain hearing there; that happened in both of my ears and they healed and hearing improved, but not all the way or permanently. Even during treatment, the damage underway to my sinuses and ears continued to progress, but is now pretty well stabilized... I have found my new normal and am living it one day at a time. True what Pete said that this is a treatable disease, and though the possibility of relapse never goes away, your young age, as drz said, gives hope for faster and better recovery and return to your former life, and possibly many years or even a lifetime of remission. I'm glad you joined the forum and told your story.... since each one is different, we learn from all of them. And on here, long is OK. The more info the better. Keep us updated on how it goes for you!

[woz]

Hi Orpheus, I'm glad you got diagnosed quickly, and didn't have to suffer months of missed diagnosis, being young you should bounce back quickly.
Don't over read all the doom and gloom pictures, and information you find on the web, everybody has different disease problems and complications,
some people will get over it reasonably quickly, others will have to battle on. This is a great place to answer most of your questions, as there is a
wealth of information and support, from some fantastic people, and the more you know, the easier it will be to talk to your doctors.

Regards Woz......

[LCL2013]

Hi, Orpheus. Welcome to the forum. My goodness, that's is one scary tale. I'm so glad you are doing better and blessings to your doctor for diagnosing you so quickly. I still feel deep gratitude to the ENT that took one look at my sinuses and throat and told me he thought I had Wegener's. There are so many others here who had to go months and even years seeking a diagnosis.

Please keep us updated on your progress.

[LCL2013]

Orpheus - it's interesting you mentioned a 'smell'. I noticed the winter and spring before my symptoms started in earnest that if I was running and playing with my daughter I would get short of breath - almost asthmatic - and then I would experience a dusty-musty kind of smell. It would go away after a while and didn't happen often, but I never forgot it. In all of the posts I've read I haven't seen anyone else mentioned something similar.

Birdie - I often wonder if the Shingles virus (or the anti-viral meds I had to take for a year afterwards) might have triggered my WGs. I came down with a nasty case of Shingles in September 2012 and started experiencing the shortness of breath (when running) and dusty-musty smell that winter. The full on WGs symptoms started in June 2013.

I've also wondered if my migraine medication may have had something to do with it as well. I was taking Sumatriptan for a number of years and I asked my doctor if there was another medication available because when I took the Sumatriptan my migraine would go away but I would experience terrible joint pain afterwards - especially in my elbows (why there I don't know). My skin would also be super-sensitive for a while after taking the med. She switched me to Rizatriptan, I believe around April 2013 (but I'd need to confirm that date), and I didn't experience the same side effects. But, it was only a couple of months later that my WGs symptoms surfaced. I was also under great stress at work during time frame, so who knows.

[Birdie]

Birdie - I often wonder if the Shingles virus (or the anti-viral meds I had to take for a year afterwards) might have triggered my WGs

I'm gonna start a new thread instead of hijacking this one. I'd really like to know who knows what triggered their WG.

[csjknits]

Orpheus,
I am glad you found the forum! Your story is sadly quite similar to mine. Like you, I feel lucky that a great doctor quickly figured out what was happening and treated quickly. I also had quickly progressing lung and kidney involvement, and I am happy to report that four months out my kidney function has returned almost to normal (by the second day in the hospital, before beginning prednisone, my kidney function was at 3% and my creatinine at 7.8), and my lungs are recovered. I had already most of my hearing in one ear and the second ear, which was declining, is back to where it was before. I also share your concerns about it happening again; in fact, I just posted about this the other day in the general forum. You're not alone, and I think you'll find great comfort in reading people's success stories.

[txrepub4God]

You mentioned a couple of things that I've also experienced. I've noticed for years - maybe 15 years or more - that I would get an extremely sharp pain inside my nose that felt like someone was taking an icepick to one single nerve and repeatedly stabbing it. I will get this stabbing sharp pain out of nowhere & it'll continue for a few days, then vanish. It is always on the same nerve as well. It is so painful that my eyes water & the only thing I can do is push on the "nerve" on the outside of my nose to try & relieve the pain, although nothing really helps. I've never known why I get this.

I also began noticing about 2 years ago that I was losing my hearing. The mid-range tones that most conversation is held in was sounding very muddled to me; I was getting extremely frustrated trying to understand TV shows or others talking around me. My husband realized I was listening to the TV way too loud. I was finally diagnosed with Wegs in March after a 2-year battle of testing/doctor hell, and decided to get the hearing loss looked at. After my hearing tests, I found out I have a severe hearing loss and needed hearing aids. Luckily, our insurance covered the cost of the hearing aids & I've been wearing them a couple of weeks now. It's amazing to hear everything; it makes you realize how much you weren't hearing before. I'm 42 & it's weird to be wearing them, but I'm getting used to it.

So sorry that you've had to join our group of Weggies. I'm new to this as well & learning right along with you. Hang in there & God bless you'

[Orpheus]

Thanks for all the support, sorry I haven't responded. I am fighting an infection and had to spend a night in hospital. I am recovering now but I am still pretty weak.

As I've always said I am taking this one day at a time but I am getting really frustrated with the lack of progress. My symptoms started up in early August (runny nose, weak feeling) which means I have been feeling sick everyday for the past 5 months. It's been so long I am not sure if I remember what feeling well is like.

[Birdie]

[QUOTE=Orpheus;99740]I am fighting an infection and had to spend a night in hospital.QUOTE]

I've been there many times, always at least three days in the hospital and once it was ten days just for infections. I was only able to stop that cycle by learning to spot an infection before it got a good hold on me. Learn to be aware of the signs and get to your doctor immediately. You'll be much better off if you get infections treated before they can run amuck.

Gary

[annekat]

Thanks for all the support, sorry I haven't responded. I am fighting an infection and had to spend a night in hospital. I am recovering now but I am still pretty weak.

As I've always said I am taking this one day at a time but I am getting really frustrated with the lack of progress. My symptoms started up in early August (runny nose, weak feeling) which means I have been feeling sick everyday for the past 5 months. It's been so long I am not sure if I remember what feeling well is like. If your symptoms started in August it has not really been that long. It takes awhile for the meds to start working, or for you to be able to feel the difference. I was dx'd in Apr. 2011 and am still not out of the woods, though I feel I may be in medicated remission. But I did feel noticeably better by about 2 months, though there was still a ways to go. Take heart, you are young, and it probably will take you less time to get this under control than it has for many of us. As for infections, I haven't had one, but hang in there and I'm sure you can beat that.

[Debbie C]

Hi Orpheus,glad you decided to stop lurking and join in on the fun here ! Wow what a time you had of it. Your right, thank God those people were working the night you went to the hosp. And that your mom made you stay ( they know best ! ) I think if I was coughing up that much blood by anxiety would have kicked in and I would have died of heart failure !! Sorry to hear that you had to go back to the hosp.Being on these drugs you need to be careful about your surroundings...other sick people coughing or sneezing.Make sure you wash your hands often,I always carry hand sanitizer with me. When I was first sick and around sick people I would always cover my face or wear a mask in the er.
I have never heard of DVT's.... I don't know what that is and why you are bedridden. But I hope you get to feeling more like your "new" self soon
It sounds like you have a couple of good drs. but I am sure you will be seeing different types so make SURE they are experienced with wg. Good luck to you and keep us posted.

[Orpheus]

Hi Orpheus,glad you decided to stop lurking and join in on the fun here ! Wow what a time you had of it. Your right, thank God those people were working the night you went to the hosp. And that your mom made you stay ( they know best ! ) I think if I was coughing up that much blood by anxiety would have kicked in and I would have died of heart failure !! Sorry to hear that you had to go back to the hosp.Being on these drugs you need to be careful about your surroundings...other sick people coughing or sneezing.Make sure you wash your hands often,I always carry hand sanitizer with me. When I was first sick and around sick people I would always cover my face or wear a mask in the er.
I have never heard of DVT's.... I don't know what that is and why you are bedridden. But I hope you get to feeling more like your "new" self soon
It sounds like you have a couple of good drs. but I am sure you will be seeing different types so make SURE they are experienced with wg. Good luck to you and keep us posted.

DVT is Deep Vein Thrombosis aka blood clot.

I do wash my hands but I think I need to be more vigilant when it comes to that.

[annekat]

DVT is Deep Vein Thrombosis aka blood clot.

I do wash my hands but I think I need to be more vigilant when it comes to that. And like Debra says, keep hand sanitizer nearby and use it when you can't wash hands, after handling money or shaking hands with people..... it has helped keep me from catching anything for 4 and a half years since dx, while taking immunosuppressants the whole time. I've had one cold during that time and that was it.

[woz]

As mentioned above, you must have the best hand hygiene practices, similar to nurses. Try to prepare most of you meals, take away is a lottery, wash all your fruit and veg, educate friends and family to not bring over any colds or flu, (MOST IMPORTANT) before you eat or prepare food, wash you hands well, with soap and water. I know it sounds over the top, but I have only had one cold in almost 3 years.

Regards Woz....

[mishb]

Hi Orpheus (Mike) and welcome to the forum.

Lurking is good, we all did it :tongue1:

Everyone has said everything that needs to be said, I just wanted to make mention of that smell - yuck :sad:

I lost my sense of smell many years ago however I will never forget that smell that was in the back of the nose. It wasn't a smell that anyone else good smell because it was coming from the inside. Like dirty socks and a rotten garbage truck, all rolled in to one.
Thanks for bringing back a memory that I was trying so hard to forget - Lol :razz:

Take care and let us know how you are getting along, now that you are back out of hospital

[Birdie]

I just wanted to make mention of that smell - yuck

Like dirty socks and a rotten garbage truck, all rolled in to one.

Awwww... I forgot about it till the garbage truck and dirty socks combination. Did you also have an endless taste of salt? It didn't matter what I tried to eat it all tasted like a block of salt and nothing else.

[Orpheus]

Awwww... I forgot about it till the garbage truck and dirty socks combination. Did you also have an endless taste of salt? It didn't matter what I tried to eat it all tasted like a block of salt and nothing else.

No, but what I like and don't like has changed (I think because of the Kemo drugs I am on). Water has a very strong metallic taste to it, I don't like chocolate anymore and it appears that I like fish now (before, even the smell of fish would make me sick).

[Birdie]

No, but what I like and don't like has changed (I think because of the Kemo drugs I am on). Water has a very strong metallic taste to it, I don't like chocolate anymore and it appears that I like fish now (before, even the smell of fish would make me sick).

For me metalic taste in water was caused by an infection, wish I could remember which infection, I've had so many.

[Allisonquast]

Hi. Glad you were diagnosed. I'm curious as to which hospital you were diagnosed in? Which province? We too were fortunate to have had ER docs who had seen wegs before.