Hi Everyone!

[Alex]

I've been reading all of your stories and experiences for over a year now starting when I was in the hospital June 2012 when I was diagnosed myself. I wanted to say first off, you all are awesome. So many smart, supportive people post here it and has really helped me get through the craziness of it all.

I was diagnosed in June 2012 when I woke up unable to breathe coughing up lots of blood. Before that morning I had no real signs of the disease that I picked up on until I did a bit of research. As a child I had lots of unexplained severe joint pain that would come and go, high blood pressure and severe nosebleeds. I was first taken to Shady Grove Hospital in Rockville, Maryland and after 5 days of them attempting to treat me for pneumonia I became too critical, was put on a ventilator and into a medical propofol coma. I was then helicoptered to George Washington Univ. Hospital in Washington DC.

After a few hours at GW they had concluded that this definitely was not pneumonia. At the time Wegeners was the best guess ( And still is ). I most definitely would not have made it another day had it not been for the staff at GWUH. The immediately started me on pulse IV steroids, IV cytoxan, plasmapherisis, 3 blood transfusions and 11 days later I woke up from my propo-coma. Two weeks later I had a relapse of the lung hemorrhage and we repeated everything once more and another three weeks later I was released on higher doses of Cytoxan (225mg) and Prednisone (120mg/Day). At the time I had no involvement in my kidneys and my lungs were too critical both times to preform a biopsy, They did attempt a nasal biopsy but only "nonspecific inflammation" was shown.

Around thanksgiving 2012 I did Rituximab infusions and was mostly symptom free until a few months ago.

Almost two years later... I'm 22 now and getting ready to get back to college hopefully. Two months ago the doctors noticed small amounts of blood in my urine. We had an ultrasound done and nothing glaring showed up so I'll be seeing a Nephrologist soon to figure out exactly what is going on. The Prednisone caused very severe Avascular Necrosis (AVN) in both my knee's, ankles, hips as well as my right wrist and elbow (Who knows where else it is.. Seems as if it hit every bone in my body.) So I'm really hoping to avoid any more Prednisone because it will most certainly result in knee replacements at the very least.

:hug3:And that's me! I've really found alot of support in this forum just by reading other's stories. Hopefully mine can help someone else. Being young with Wegener's & AVN is no worse medically but it definitely comes with its own unique set of challenges to overcome as I'm sure is the same for any age bracket.

Thanks for reading,

Alex

[annekat]

Welcome, Alex, and glad to have you here if you have to have WG. You already know what a great group this is, so I'll just say thanks for sharing your story, and yes, I'm sure it will help someone who is trying to deal with WG and doesn't yet know much about it. I look forward to seeing more posts from you.

[SpaceflightAddict]

Welcome to the forums Alex! Sorry to hear about all the issues you've had, but hopefully they will get under control soon. I was only diagnosed this past August, but I definitely understand the some of the challenges of dealing with this at a young (well I still think i'm young) age. My active lifestyle has been on hold for a little too long now, and I am itching to get back to it.

Again, welcome, and I hope everything goes well for you in the future!

[Alex]

Thanks for the warm welcome! Yeah the worst part for me these days is dealing with the AVN pain from the prednisone. It's completely taken me off my feet for the most part. And all the narcotics just mess with everything from memory to personality. I'm seeing a doctor in Baltimore who specializes in AVN and so far we've done 3 rounds of core decompression on the knees and ankles. It has actually improved the pain in my ankles but no such luck in the knees so it's on to more invasive surgery options. Can't wait to put this behind me. But it's true.. It does get better everyone!! Just keep at it and listen to those docs :biggrin1:

[windchime]

Welcome Alex and thank you for sharing your story. You have been through much for someone so young, but you sound strong. I hope you continue to keep the Wegs under control and if you have to have joint replacements they've come a long way in streamlining the process. I've had bilateral hip replacements and it was the best decision I ever made. Please continue to share with us as we would love to hear from you. Good luck with the Nephrologist.

[Alex]

Welcome Alex and thank you for sharing your story. You have been through much for someone so young, but you sound strong. I hope you continue to keep the Wegs under control and if you have to have joint replacements they've come a long way in streamlining the process. I've had bilateral hip replacements and it was the best decision I ever made. Please continue to share with us as we would love to hear from you. Good luck with the Nephrologist.

Thanks, do you know what the average lifespan is for a knee replacement these days? I just don't want to have had 4 of them by time I'm 60. It's looking more and more like that's what I will need.

[annekat]

I can't answer that question, but I'm sorry about your knee problems and the AVN in other joints, too ... they seem a bit unusual on here, even among us middle aged folks. I didn't know that prednisone could do that kind of damage in two years, or at all, for that matter. I hope you will be able to avoid multiple knee replacements.

[Alex]

I can't answer that question, but I'm sorry about your knee problems and the AVN in other joints, too ... they seem a bit unusual on here, even among us middle aged folks. I didn't know that prednisone could do that kind of damage in two years, or at all, for that matter. I hope you will be able to avoid multiple knee replacements.
According to my Orthopedist it's extremely rare for it to happen at all, and even more so in multiple joints. Most people usually just get it in the hips. I have 5+ dead spots (infarcts) in each of my knees and ankles. I guess I'll be doing some research on modern knee replacements.

[Alysia]

Hi Alex,
welcome to our weggie family :hug1:
so young and already being through so much :sad:
but it seems that you remain positive and strong :thumbup:
I hope that your kidneys will not be affacted by wg and that you can soon get into long lasting remission.
good luck and continue to write.

[Dirty Don]

Welcome Alex...wanna race?!?! LOL! Anyway, I have a friend, 86, who is working on his 3rd knee replacement on one side, the other knee's replacement still works fine...take it for what it's worth at 22 years old! Best to you!

[pberggren1]

Neat, another Weggie from MD.

[Debbie C]

Welcome to the group Alex..sorry we had to meet this way but as you probably know by now there are alot of good people here with alot of knowledge and understanding. Sorry you have been thru so much in your life with this disease already but hopefully there will be no problem with your kidneys and you can concentrate on getting your other pain healed.Feel free to ask questions or just vent anytime...someone is usally here. Good Luck and keep us posted.

[windchime]

[QUOTE=Alex;77173]Thanks, do you know what the average lifespan is for a knee replacement these days? I just don't want to have had 4 of them by time I'm 60. It's looking more and more like that's what I will need.[/QUOTE

I'm not sure of the lifespan, but think they quote the minimum. I would guess 20 years minimum. They have new knee replacements that are especially for active people that hike and climb. The range of motion is increased over the standard replacement. I've seen them advertised but do not remember the name. You will most likely have to have more than one since you are so young, but compared to the pain of arthritis, at least in my case, it was worth it. Since I was only 56 when I had my first one done I may have to have another one some day. It is what it is, but I'm pain free now. Good luck.

[woz]

Hi Alex, glad you found this site, much more info here, than you will find anywhere else. All the best for the future.

Regards Woz

[mishb]

Hi Alex and welcome - I'm glad you finally decided to join

A friend of mine had a knee replacement 8 weeks ago. At her specialists suggestion, she had been putting the replacement off for many years, until it got to the point where she couldn't any longer.
- the reason for this, is because the specialist has told her, that the new replacements only last 10 to 15 years, so the longer she could wait, the less replacements she would need.

I also know a lady who has already had 2 hip replacements. As she is only 50 now, she will probably need it done a few more times, before her passing.

Good luck to you

[Alex]

Hi Alex and welcome - I'm glad you finally decided to join

A friend of mine had a knee replacement 8 weeks ago. At her specialists suggestion, she had been putting the replacement off for many years, until it got to the point where she couldn't any longer.
- the reason for this, is because the specialist has told her, that the new replacements only last 10 to 15 years, so the longer she could wait, the less replacements she would need.

I also know a lady who has already had 2 hip replacements. As she is only 50 now, she will probably need it done a few more times, before her passing.

Good luck to you
That's what I'm trying to do, is wait until I could maybe get by with 2 or 3 replacements tops as I've heard the loose effectiveness each additional replacement. At least I can walk (sort of). I usually use a cane and take breaks every 10min or so. It sucks, but it works for now with the help of some serious painkillers.

[NikkiNicole]

The cane is evil. When my hip is bothering me I use it to help me walk ... which I must do incorrectly because then my shoulder hates me for a week.

Hello again Alex!

[rebekah]

I just wanted to say welcome, Alex. I'm 22 and just graduated from college, so I understand how difficult balancing school and life and wegs can be, but it is doable. I wish you the best of luck in your studies! I hope the appointment with the nephrologist goes well and things improve for you.