W.G. and Microscopic Polyangitis

[watersedge]

Hello all,
Just had a couple of questions. Before my dad was diagnosed the doctor said she was almost sure daddy had w.g. but was just waiting for the results of the kidney biopsy. When the results came back I asked her if it was w.g.
She said it was overlapping with symptoms of microscopic polyangitis. I never heard her say that he had granulomas, (if that is correct) on the kidneys, he had acute kidney failure with no scar tissue, the name she used was acute tubular necrosis and that in time she expected him to recover full kidney function. On dad's death certificate it said he had "ANCA associated small vessel vasculitis with renal failure", other, "recent bacterial pneumonia, ischemic stroke." I was surpised it didn't state w.g.
Has anyone else had a cross diagnosis with m.polyangitis, I've read that the symptoms and treatments are very similar. Just trying to get through all these thoughts going around in my head, why when they say there is a 90% survival rate and things looked promising when he was first diagnosed even though I know he was very ill, did things go horribly wrong and he was in the 10%?
Thank you all and hope you are all doing o.k. I read all your stories but don't post very often as I am not really in the know about a lot of your questions relating to doses and different meds and stuff so am not of much use but you are all in my thoughts.
Bye for now and thank you

[Sangye]

It can be very difficult to tell Wegs from MPA. The treatment and prognosis is the same so when there is confusion around the exact diagnosis doctors don't seem to be too upset.

Having had a lot of complications right from the start, I can see how easy it is to fall into the 10%. I nearly did. On my 3rd day after diagnosis I developed uncountable numbers of blood clots throughout my legs and lungs. It took them 3 weeks to discover them. I had immediate symptoms but the leg ultrasound was normal. By the 3rd week I was much worse and demanded help. My oxygen sats were normal, my lungs sounded clear. However, I knew something was very wrong and refused to leave my doctor's office. He finally humored me and sent me to the hospital for a chest CT. The next thing I knew he was standing outside the CT room looking pale as a ghost, telling me not to move an inch. One tiny blood clot can kill or cause a stroke. Just one of my clots was the length of my thigh and as thick as my little finger. Though my doctors early on made some major mistakes, they were not to blame for this since all my tests had been normal.

So it easily could have been me in that 10%. Many other times, too. Given how sneaky and destructive Wegs is, I'm actually amazed it isn't higher than 10%. I hope this helps you make some sense of what happened to your dad.

[watersedge]

Thank you Sangye,
It has helped, it probably comes across like I am trying to blame the doctors but really I am not, they were very good, always made time to meet with me and mam and answer any questions, I know they did all they could for him but despite everything sometimes things just don't work out. I suppose at the time he was diagnosed I had never heard of w.g. and within 6 weeks he was taken from us so a lot of my questions are cropping up now. I know nothing will bring him back, I just miss him. I know I should let go of all of this and just remember him but I am not ready to go there yet, it is too painful, in time I will. I just find that this forum really helps me, I suppose all of this distracts me from the reality of what has really happened so for now I'll just have to let it run its course.
You are right Sangye, it is a sneaky disease, you have had your fair share of suffering.

[Thakator]

Sangye - - Just want to say that yours was a very nicely worded response to Watersedge; I'm sure it will help her to come to an understanding as to how such a devestation could have happened to her father. And as to how quickly.
Watersedge - - I can add nothing to what Sangye has already written, but I too will attest from personal experience as to how frightenly quickly this disease (or MPA, likely) can ravage one's body. And to the fact that what you read on this forum can help you come to an understanding as to what happened and thus help in finding some closure, leaving you more free to deal with the grief of your loss and less held back by the questions of why and how. Bless you, Ron

[Chris G]

Watersedge: I hadn't read of your father's passing. I'm very sorry for your loss. I hope you can find some peace.

[watersedge]

Thank you Ron,

I have to say this forum has really helped me come to some sort of understanding of what happened, slowly eliminating each question I have, the problem at the start was I knew so little and thought well it's not cancer or anything, he'll be o.k.

My dad used to always say "meet me by the waters edge" hence my username. I know some day I will, that he is waiting for me and when my time comes he will come for me and I will see him again.

The compassion that Sangye and all the members on this forum show to not just me but to each other and new members that are in a scary place is heartwarming. The advice, support and kind words help and touch so many people and it makes a real difference whether you are grieving, have been newly diagnosed and have a lot of questions or have been living with the disease for a long time.

[Thakator]

Watersedge - - - what an absolutey wonderful and beautiful username and lifelong tie to your Dad that will be. That name, in and of itself, will give you strength each and every time you use it. And, please know that through your father you have become a member of the Wegs family as represented by this forum - - and that you shall remain so ever after as is the family way. So please do as you have done today and never hesitate to contact us with questions or concerns. Ron

[watersedge]

Thank you Ron, you are a gentleman, and thank you also Chris G.

[JanW]

Watersedge - I am very sorry to learn of your loss.

[Sangye]

Thank you Sangye,
It has helped, it probably comes across like I am trying to blame the doctors but really I am not, they were very good, always made time to meet with me and mam and answer any questions, I know they did all they could for him but despite everything sometimes things just don't work out. I suppose at the time he was diagnosed I had never heard of w.g. and within 6 weeks he was taken from us so a lot of my questions are cropping up now. I know nothing will bring him back, I just miss him. I know I should let go of all of this and just remember him but I am not ready to go there yet, it is too painful, in time I will. I just find that this forum really helps me, I suppose all of this distracts me from the reality of what has really happened so for now I'll just have to let it run its course.
You are right Sangye, it is a sneaky disease, you have had your fair share of suffering.
(My internet was down for 2 days so I couldn't reply sooner!)
Grief is very complicated and takes a long time. I think it's entirely normal to have questions arise and try to process them. I know you're not trying to blame the doctors. They can and do mess up sometimes. In my own case some doctors were not to blame for certain complications while others were clearly to blame for other complications. It's okay to acknowledge that if that happened. You will find your way through this pain. It takes a long time and there's no rushing it.

I love that you honor your dad by using "Water's Edge." That brought a smile to my face, which I bet would make both of you happy.