Sad!!

[jtausan]

Hello All,

I read my local paper's Obituaries today and their was a 36 year old male who died of Wegeners!

The obit read- "he waged a brave and courageous battle against a rare disease known as Wegeners Granulomatosis, a form of Vasculitis".

I have never seen that in print before and it just hit me, hard! No one should die from this disease!
Thank goodness for all the awesome advice we get from each other. Thank You all!

God Speed to you Hud!

Jodi

[freakyschizogirl]

Wow, that is odd to name it. Tho i dont see why diseases shouldnt get as much press as any other condition.

[misskay]

I hate to hear that he lost the battle, but I'm sort of glad to see that they named Wegener's, I mean if someone dies of cancer they don't hesitate to say so. Maybe it will help raise awareness of the public AND health professionals...

[NicShaf]

That is so sad, and to die so young, sorry to hear that.

[Sangye]

How sad.... A lot of people do die from Wegs or complications from it. 36 is so young. :sad:

Personally I don't like calling it a "battle" or say I'm fighting Wegs. I know it's common to do that with serious illness, but to me it means that life is a war and dying means you lost. Our society thinks the only way we can show strength is to say we're fighting.

[freakyschizogirl]

You're right Sangye, and the truth is we arnt battling, we're living. And thats the most important thing.

[JanW]

I agree with Sangye on this one. I hate for life to be couched in terms of winning and losing.

I am happy, however, to see WG mentioned in the press at any time.

[misskay]

I DO think of it as a battle... not a war, but a battle. I'm one of those people that has to get mad at something to really fight it I guess. May not work for some, some may not agree... but it's what works for me.

[Geoff]

My thoughts go out to his family, it is hard to acknowledge the fact that you can die thru this disease. I have tried to live my life in denial of this fact but have realised that you have to face your demons. As for it being a 'battle' and fighting the disease, I try to avoid confrontation and getting agitated about issues. I abhor negativity and as such end up walking away from the TV set!! I rely on sunshine and trying to adopt a positive outlook, throw in a touch of humour and I'm sorted.

[Brooke]

That is horrible, I read his obituary. I live in South Dakota as well, and so does jtausan. Hud Benjamin Smith Obituary: View Hud Smith's Obituary by Rapid City Journal (http://www.legacy.com/obituaries/rapidcity/obituary.aspx?n=hud-benjamin-smith&pid=148122031&fhid=4896) Here is the link. I wonder if this came on right away or if he had some sort of other complication. Either way it is so sad to hear. (Jody) Jtausan, how have you been feeling? Did you make any appointments in Sioux Falls or at Mayo? Hope you are doing well.

[LisaMarie]

From the obtitary it leads that he was recently diagnosised or got really sick this last year...it is very sad ...but it goes to show how fragile life is and it could be any of us at anytime...harsh reality but true..guess i better get my tush in gear and get my will done ....I send my deepest sympathy to his family:sad:

[Psyborg]

Very sad...hits close to home on some points. He was a couple years younger than me...sometimes you almost forget how serious this can be if not well controlled. I wonder if he was getting the level of care he needed at Rapid City.? it's a pretty small city.

[Brooke]

I was wondering the same thing Psyborg, it is a small city.

[Sangye]

Stupid Wegener's. :sad:

[drz]

I was wondering the same thing Psyborg, it is a small city.

It is second largest city in SD. It is medical center for that area and for 100 miles in any direction. Once you leave the Mississippi there are no large cities in the northern states till you reach the Pacific Ocean so any "large city" becomes a medical treatment center. That doesn't mean they have specialists in Vasculitis but the care might be better than what you would get in a city of comparable size that was near a big metro area. Most of these medical centers are also used to contacting specialists around the country for assistance since they do not have all the local specialists they may need. Many locales have well developed video and tele-medicine centers to get such assistance. I don't know if quality of care was a factor in this person death or not but I would not assume it was poor just because of the location. When I was diagnosed last year my family was told 90 % of people survive initial treatment but that means some don't, usually from complications of infection (pneumonia) but sometimes from kidney failure and lung exhaustion. I don't personally know any one yet who has died from Wegener's but it does happen and is especially sad for some one so young.

[Sangye]

We have lost several members in this group--some young, some elderly.

[jola57]

It brings home two points: How devastating and lethal this disease can be, and How lucky we are to be alive

[jtausan]

Hello all,

I now carry Hud's Obit in my purse to remind me how devastating this disease can be. Rapid City is a small town and no we do not have a Vasculitis center. Most of the Doctors here will send you to Mayo in Rochester for treatment. I unfourtunately did not know Hud so I don't know what kind of treatment he was getting. I am sad he lost his life so young and to Wegeners.

Brooke-I am going back to Mayo soon so that I can be seen at the new Vasculitis center. I recently got a referral from Indian Health to help me with the costs of treatment. I can't wait to go again, Mayo is so amazing. I have been feeling pretty well tho, I had a Kidney infection that has cleared up.
I hope you are doing well too.
Jodi

[drz]

It brings home two points: How devastating and lethal this disease can be, and How lucky we are to be alive

AMEN!!
We are also lucky to be well enough to read these posts and to post our own messages cause a few months ago I was too sick to do so.

[drz]

Hello all,

I now carry Hud's Obit in my purse to remind me how devastating this disease can be. Rapid City is a small town and no we do not have a Vasculitis center. Most of the Doctors here will send you to Mayo in Rochester for treatment. I unfourtunately did not know Hud so I don't know what kind of treatment he was getting. I am sad he lost his life so young and to Wegeners.

Brooke-I am going back to Mayo soon so that I can be seen at the new Vasculitis center. I recently got a referral from Indian Health to help me with the costs of treatment. I can't wait to go again, Mayo is so amazing. I have been feeling pretty well tho, I had a Kidney infection that has cleared up.
I hope you are doing well too.
Jodi

Congratulation on the referral and getting rid of kidney infection. That must be a great relief to you.

[Brooke]

Drz, I wasn't assuming that because of the size of the town, he received improper or not the best care.

[Sangye]

Someone could be in Chicago and still receive improper care because they're not seeing a Wegs specialist. I was at Mayo Arizona and just because they didn't specialize in Wegs I was not getting the best advice.

[elephant]

Ditto to what Sangye stated, I was in one of the best Children's hospital in Chicago with a team of docs and they still couldn't figure out my diagnosis...which was Wegeners!

[freakyschizogirl]

Ditto to what Sangye stated, I was in one of the best Children's hospital in Chicago with a team of docs and they still couldn't figure out my diagnosis...which was Wegeners!

I find that odd in this day and age...if you googled your symptoms, as i did before diagnosis, you'd know you could have a auto immune disease, mine even narrowed it down to Wegs and Lupus, not that i think doctors should be googling symptoms...

[Sangye]

Diagnosis looks so easy in retrospect! I can tell you that it is extremely difficult because you have to merge a patient's signs and symptoms with hundreds of diseases and conditions.

That was a big reason why I didn't go to an MD for the year preceding my dx. I only had severe joint pain for months and my blood work looked great. No inflammation, etc.. I had done a basic AI panel which was (-). Even when I developed severe fatigue and anemia it wasn't at all clear that it was an AI disease. What else can cause those symptoms? Lyme's Disease, rickettsial diseases, parasites, toxins, to name a few. And each of those is very difficult to pin down.

I think the only people who have an easy diagnosis are the ones who present with overt sinus, lung and kidney symptoms or signs like a perforated septum, subglottal stenosis, or saddle nose.

[JanW]

I definitely agree that the rarer the WG symptom, the more likely you are to get a quick diagnosis, once you are seen by the right doctor. Once a rheumy saw my nose, he made a tentative diagnsosis, and I was seen by an ENT a day later. Blood work confirmed positive c-anca within a week and I started treatment. It still took a while before what led me to doctors in the first place (severe foot pain) was correctly attributed to the disease.

[Jack]

When I put my initial symptoms into an online diagnosis program, Wegener's comes up as possibility No 196!

[Sangye]

LOL And, few people go to a doctor and list every single symptom. So many of our members have said, "I didn't mention my sinus troubles to Dr Z because he was a kidney doctor."

[elephant]

Believe me, a couple of years ago I mentioned to the kidney doc about this and that ...including sinus issues, he just told me to take a Claritin!

[pberggren1]

My Wegs Specialist is Internal/Nephrology, so I tell him everything.

[Sangye]

Phil, I meant for initial diagnosis.

[drz]

Believe me, a couple of years ago I mentioned to the kidney doc about this and that ...including sinus issues, he just told me to take a Claritin!

I kept getting referrals from one specialist to another but none could find anything wrong to explain the symptoms. i think this is too common. I ended up in hospital before I got to the referral to a rheumatologist who might have figured it out.

[drz]

When I put my initial symptoms into an online diagnosis program, Wegener's comes up as possibility No 196!

How many of the other 195 did you have? :biggrin:

[bonadrag14]

I saw your posts when I was Googling Hud and wasn't familiar with the forum. We were together 8 years, have 2 beautiful dogs and truly enjoyed our life in Arizona. We didn't know he had this disease at all since it presented as an ongoing ear infection that got better then flared up, got better...
It's April now and I know for a fact that he's at peace and enjoying himself in his new life, he even still takes part of mine. What I took away from this was the need to spread awareness about Vasculitis and particularly Wegener's Granulomatosis. I've had to reassess life and what's truly important, and one of my main goals now, besides being with my family, is to Educate people about this disease. The fact that he saw an ENT doc 7 times in a month, went to the ER and an Urgent Care and no one could remotely diagnose something 99% have probably never seen. The outcome would not have been different and he was such a free spirit he really wouldn't have liked living a life with boundaries, especially when it came to food!
The Vasculitis Foundation and Joann's chapter in Aberdeen, South Dakota were extremely supportive in educating me about this disease and being there to listen. I keep asking myself how many people have Wegs and don't even know it and why the heck there isn't a Vasculitis center in EVERY state (another new goal). We lived in AZ and would have had to move to a location where there were physicians qualified enough to treat this complicated disease.
I admire all of your strength with the cards you've been dealt, and I know Hud would have wanted this to be a catalyst in helping others. He had and still HAS a heart of gold! If you have questions, feel free to email me offline and I can shed some light, this wasn't just his fight, it's yours too and knowledge is power. Thank you all for your thoughts, I felt somewhat odd about replying so late, but hopefully you'll see this. My email is [email protected]. Take care! Jen

[Sangye]

Jen, my heart goes out to you for losing your husband to Wegs. I admire that you are continuing to help bring awareness about Wegs--thank you for that. More money will go for research, fewer people will go undiagnosed and lives will be saved.

[NicShaf]

Jen,
I'm sorry for your loss. You have a huge heart to continue to work for Vasculitis and awareness for this disease. My thoughts and prayers are with you.

[Psyborg]

The story is heartbreaking. Thank you for continuing to work to help others.

[elephant]

Thanks for sharing your story, I am sorry for your loss. Thanks for you support.

[pberggren1]

You are a living saint Jen.

[DEE]

Thinking of you and thank you x

[Brooke]

Thank you for sharing your story. Feel free to post on here anytime!
I live in Sioux Falls, SD, so not too far.

[elsawind]

Back in Oct. 04 when my husband was diagnosed with vasculitis, I read the obituary of Janet Leigh and part said "after a long battle with vasculitis".
Those words stayed in my mind for all this years. At the beginning my husband's condition was mild and I could not understand; now I can. This is a horrible disease, I hope for more research on how the immune system works and ways to balance it with no such a harsh medicines.
Death it is always sad and it is worse in the younger years.
Best wishes for remission to everybody.

[marta]

Thank you Jen! I want to say more but the right words elude me. Your strength, love and spirit are inspirational.