Sorry to say, one of my weggie friends, Phil Berggren, just died after many years battling Wegener’s granulomatosis/GPA. I’ve known him for five years, and made his acquaintance through Australian Andrew MacLean’s excellent support website, Wegener’s Granulomatosis Disease Support Forum, on which he was very active.
Phil was a survivor, with a strong will to live, a strong interest in knowing everything he could about this disease that just took his life. His body, in the end, was weakened by the disease, and even his strong will was unable to heal his lungs, his body.
He willingly shared his knowledge, often from hard-earned experience, with other weggies and members of their families, something that comes up in many of the comments posted on Facebook, where I learned he’d just died.
Knowledge is power when it comes to quieting the fears of a weggie. Or of helping a weggie to accept sometimes grim news about his or her prospects. I hope his knowledge helped him as much as his faith did when the end approached. He was a good person.
Phil, God bless, my prayers are for you, your family, your friend Alysia, and everyone who mourns your passing. We will miss you. You made a big impact in a too-short life, and inspired many people who needed a boost to the spirit when their doctors presented them more bad news about this disease we share with you.
I’ll return to posting things about my kitties tomorrow, but today is a day to honor the memory of Phil Berggren. His phone number’s on my cellphone, you know. Today, I wish I could call him in Heaven to say “Thanks! You inspired me, you answered questions I had, and you made a difference in my life in ways I never told you.”
So sorry you loose a friend. Young people died by ilniss. it’s so sad.
He had Wegener’s granulomatosis, a vascular disease that I have, too. In fact, “weggieboy” refers to that fact and is my way of poking the devil in the face. Each patient with WG approaches it differently and experiences different issues. He had a much tougher time and didn’t ever go into remission as far as I can remember, whereas I did. Of course, my end term kidney failure came about because the disease damaged the vascular system in my kidneys, making me the only person in dialysis who isn’t there because of diabetes.
So sorry to hear about Phil, but glad he was a good influence on your life.
Many people were, Peggy. Thanks!
Phil will be missed for sure. He helped many with questions of WG (including myself)
I was a regular on the forum until Jack passed and I sorta just drifted away and spent more time on the Face Book groups but I knew where to find Phil if I had a question.
He would tell me to come back to the forum and I still check in once in awhile but now I feel more like a stranger and without Phil there will be a void.
Like you, I’m happy that he no longer has to deal with any of this. May he be forever at peace!
I had a similar experience with the forum. I felt closer to Jack than Phil, actually, since he’d worked in the auto industry as an engineer and I worked in the hydraulic and industrial hose industry where my company worked with companies such as his developing hoses appropriate for their applications.
That said, I had private messages with both over the years, and appreciated their insights, comments, and willingness to share life as long term survivors of WG/GPA.
Phil was diagnosed with WG/GPA right around the time I developed the symptoms (April 2003), though I wouldn’t be diagnosed with it till December, when the disease advanced to the point I had to be taken by ambulance to the emergency room. (Looking back, I’m amazed to be alive! I was a mess for months before lung involvement finally brought me down to the point I couldn’t deny I needed medical help!)
I follow a few forum people on Facebook, but I can’t see going back to the forum at this point. I think it still remains a great place for people still adjusting to a new diagnosis who need some helpful suggestions and encouragement from long term weggies. Just don’t mention your faith as a source of your strength because the forum is inimical to Christians in particular.
I had a run in with Sangye on that early on on the matter of faith, something Phil, when he first came on wrote extensively about since he was a strong Roman Catholic. I actually sent him a private message warning him about my experience with Sangye, who was quite nasty with me about posting a prayer for an 8-year-old child just diagnosed with WG because I used the Christian format. Her point was that not all people on the forum were Christian, that the prayer was offensive to them and exclusionary.(Thank me for the no religion/ no politics rule, incidentally.)
Never mind, the child’s grandmother thanked me because the prayer had be helpful to her, as a Christian.
I had several very unfriendly remarks from non-Christians and people with no religious beliefs, so felt less part of the forum. In time, that made it easier to burn bridges when I felt one member in particular spread a bit too much religion in her comments (New Age-y Christian), yet there was no protest from Sangye or Andrew. Weggies don’t need drama!
So sorry for your loss.
Phil will be missed a lot in the weggie community. He was very active on the Wegener’s Granulomatosis Disease Support Forum, contributing well over 6000 posts in the five or so years he was on it.
I AM SO SORRY TO HEAR THIS…..MY THOUGHTS ARE WITH HIS FAMILY/FRIENDS AND OF COURSE YOU….DOUG…X….SO SO SORRY TO HEAR THIS
THANK YOU, LUCY. HE DIED PEACEFULLY IN HIS SLEEP, AND, FOR THE FIRST TIME IN YEARS, FINALLY WAS FREE OF PAIN AND CARE.
I’m terribly sorry about the loss of your friend, weggieboy. My heart goes out to you, his friends, and family.
Phil had a heavy load to bear, and the last days were especially rough for him because of a collapsed lung and issues related to diagnosis of what he was experiencing. (An infection or a flare of WG? One can be treated with antibiotics; the other doesn’t benefit from antibiotics….) He had experienced more of the severe effects of this disease than most, and dealt with poor health for many years. He had strong, deep faith, which was a great comfort to him.
I like everyone else am sorry for your loss and the world’s loss of an understanding and helpful person. There is not a lot of them out there. Yet, he is finally at peace with the pain and frustration gone. He will always remain in the memories of those who knew him.
All of us.
The shock is over, and I’m at the point, personally, of celebrating his life for the good he did. I feel good to have known Phil, if only by Internet. Those who knew him in person note the same qualities I did in my little tribute, suggestive of just how many people he touched in positive ways.
I’m glad you had such an inspiring good man in your life – sorry to hear he is no longer here, but by the sounds of it he made his mark on this plane in the finest of ways, which is the best we can ever hope for, and, as you say, to be relieved from daily, unrelenting pain can only ever be a good thing too. Such a life should be celebrated.
– sonmicloud
The Facebook comments follow that line of thought. I think those of us who had direct contact with Phil pretty much agree about his impact on our lives and the lives of others.
My deepest condolences for having lost this distinguished friend.
Phil was an upbeat person who dealt with a severe version of Wegener’s granulomatosis. Ultimately, his lungs gave out. As I mention elsewhere, I am sad for his loss, of course, but he left a legacy of support for others dealing with this disease. He didn’t have a long life, but he lived it intensely and to the degree he was able. WG didn’t stop him at first, it spurred him on.
I am very sorry to hear WB. You are right “knowledge is power” so keep spreading the word in memory of Phil and others.
I put a link to the Vasculitis Foundation at the end for that reason. Though Phil died at a young age, he survived for many years with this disease because of advances in treatment. His life wasn’t wasted by the disease. It inspired him to help others dealing with the disease through sharing what he knew (from brutal, personal experience), and to be very actively involved with his doctors in his own treatment.
I am so sorry for this loss of yours. He was far too young to be taken by this dreaded illness. You have my sincere condolences and prayers for comfort and peace. Blessings to you.
I am sad, of course, Tina, yet relieved for Phil, too. He suffered quite a bit because of Wegener’s granulomatosis, but he was a survivor in how he approached it. Many people with less spirit drew on his understandings and knowledge about this disease, gleaned from brutal personal experience, and that is the legacy of Phil Berggren.
Sadly, intense suffering is the only way to earn deep compassion and understanding. I wish there was another way but how could there be? I took care of my disabled mom for 37 years and she died in a great deal of pain; hence, I understand what you are saying. I was happy for my Mother when she passed on because her life was filled with so much pain. Gentle hugs to you.
I am fine. The report is he died quietly in his sleep. His suffering is done, and that alone is a cause for relief, if not joy, at his passing: His suffering is over. He was only 38 years old.
My condolences. He sounds like a very special person.
As I mentioned to John in another comment, I am sad, of course, to know Phil died, I also am glad for him because he suffered considerably from the effects of Wegener’s granulomatosis. How he handled it is his legacy.
A remarkable person.
That he was.
Dear Weggieboy:
I am heartily sorry to hear of this loss — my heart is with you — my prayers are with you.
Thanks, John. Though I am sad about Phil, I am glad he now has peace and freedom from suffering. His was a long, long ordeal of medical procedures, pain, but with spiritual growth. weggieboy AKA Doug