Living in Fear

[Beck]

Hi my name is Rebecca, I live in Perth Western Australia. I was diagnosed with Wegeners 11 years ago when I was 18 years old. My symptoms started in June 2002 as severe joint pain, followed by a cough and blood nose. I was referred to a Rheumatologist who took some blood samples. My symptoms then became worse over a matter of weeks with kidney pain and vomiting. By mid July 2002 I was contacted by the doctor who told me to go to the ER immediately, it was then I was told I had Wegeners. I commenced treatment straight away but the doctors were unsure if they had caught the disease in time. They told me it had caused kidney failure and had damaged my lungs and upper airways and at best I had a week or two left. I commenced dialysis and plasma exchange, along with two blood transfusions. I was also told that the treatment could affect my ovaries and may cause infertility, which at that point I didn't really care I just wanted to survive. The treatment did eventually begin to work and I continued dialysis for 6 months until my kidneys could function on their own. Over the years my medication has been decreased and am now only on blood pressure medication and attend check ups once a year. The doctors believe that although I had an aggressive form of the disease, it was a one off and I have been in remission since. Although, this still is little comfort to me because of my traumatic experience I still live in fear that one day it will return. The reason I am writing this is that I did not realise how much this fear had taken over my life until recently when I had to come home from an overseas holiday as I had joint pain and a cough and believed the Wegeners had returned. It had not (thankfully), but however the psychological scars are still there to a point that they are paralysing. I am relieved to find this support group, as although I can talk to family and friends, they cannot fully understand what it is like to live with the disease. It is comforting to know that there are others out there like me.
Thank you, and I look forward to talking with you all.

[Pete]

G'day Rebecca,

The best advice I can pass along is what the doc who diagnosed me: Take your meds and live the best life you can. Sometimes this dumb disease jumps up to bite you in the butt at inopportune times. I hope you have many more good days ahead of you!

[annekat]

Welcome, Rebecca. I can only echo Pete's sentiments. But it sounds like you were made extraordinarily fearful by what they said when you first were treated for Wegs, about maybe having a week or two left. That was obviously untrue... I do imagine that that kind of language was thrown around a little more 11 years ago than it is now, but I think it was unjustified. I don't blame you for being afraid the disease may return, but if it does, it could be a minor flare and you have a good chance of pulling out of it with proper treatment. It may not be anything like what you went through before. I'm glad you found the forum, and I think it will put you at some ease to read the different experiences and scenarios we are having with Wegs; you will see how variable the disease is, how many of us are doing very well and in a medicated or drug free remission, and most of all, you will feel a lot less alone with this, and perhaps less fearful due to that. By the way, there are quite a few Aussies in the group, so you might check the Wegs Map link at top of page and see if any who have added themselves there might be near you. It can be very special to meet another Weggie in person. And please do check in often and keep us posted on how you are doing.

[Debbie C]

Hi Beck and welcome to the "family". I am also glad you found us because you are right, no one knows what it is like until you are going thru it. You will find alot of knowledgable and friendly people on here.So anytime you feel afraid or just want to vent,jump on board ! Like Anne said things were alot different when you first got diagnosed and if you were have a flare again I'm sure your docs would know what to do.You can't go on living your life in fear that this will return, just live your life and be thankful you can after what you went thru. Take care and keep posting:hug2:

[Beck]

Thanks Pete, yeah some days I focus more on the negatives rather than the positives, but as you said need to live the best life I can :)

[Beck]

Thanks Anne, reading other peoples experiences has helped me feel alot less alone, and I will check out the Wegs map

[Beck]

Thanks Debra, I probably will be on here often venting :razz: as I get frustrated with what it has done to me physically and mentally, not to mention the nightmare my family went through too.

[Pete]

Thanks Debra, I probably will be on here often venting :razz: as I get frustrated with what it has done to me physically and mentally, not to mention the nightmare my family went through too.

Vent away!! It's safe here.

[drz]

G'day Rebecca,

The best advice I can pass along is what the doc who diagnosed me: Take your meds and live the best life you can. Sometimes this dumb disease jumps up to bite you in the butt at inopportune times. I hope you have many more good days ahead of you!

The flares seem to happen usually at most unexpected times or inconvenient times it seems too. Doesn't it?

[Rose]

Hi Beck and welcome

I can feel your fear, we all can. But the fact you know you have the disease, have educated yourself (and you will learn a lot more on this forum) you will be aware of your body and flares will be picked up quicker. Many years have passed since your diagnosis and medical knowledge of this disease has come a long way since then. I know of a young man here in SA who at the age of 28 contracted the disease and his first symptom was peeing frank blood. He was in total renal failure and was on dialysis and not expected to survive. So very much what you went through. He is 36 now, married , has a young family and is so fit he participates in the annual Iron Man Competition here in SA. He lives his life to the full, tells me he really does not have any residual symptoms of WG though I believe he still takes medication. He just lives his life and if WG returns he will deal with it then.

[Alysia]

Hi Beck, welcome to the forum and thanks for sharing.
I have similar fears, of wg attacking without cure, of collapsing, of breakdown, and other horrors. I am not afraid of dying but I am afraid of suffering beyond my ability and of being helpless and dependent.
I am going twice a week to my psychologist and she is helping me very much.
I am coming here, to this amazing weggie family, which I couldn't mentally survive without it.
you had a trauma of the begginnig of wg, and it is still "alive". I think that it can help you to go to psychotherapy to process all you have being through, because the fears are coming not only about the future but also and mainly from the past.
please, continuce to write. we are holding your hand. if you are not alone, and now you are not alone anymore, the fears will go away :hug1:

[annekat]

Beck, I like very much what Rose said a couple of posts ago. And it is so true that this forum is such a benefit to us.... I really can't imagine trying to get along without it. I see on the map that there is someone else from Perth in the group (as you have most likely already discovered). It is Col 23, and I have not seen him (or her?) posting on here for awhile so probably doesn't know yet that you are here. You could always send this person a private message. You can also search his or her past posts. I have met a Weggie on the forum who lives near me and has posted on here quite a bit... it was a fun and enlightening experience. Another way of feeling a lot less alone....

[Geoff]

Hi Beck,
Let me echo all of the above sentiments and welcome to this very special family! You should never take WG for granted and pretend that you have "beaten" it, however it is possible to get out there and enjoy life.
Just last November I was fortunate to travel from the UK to Perth to visit my brother in Edgewater and then go on to see my Mum in Busselton, yes its a small world!
When I travelled it was with some trepidation as I had been off work all year but the docs gave me the go ahead. To assist you in the future I made it a point to wear a decent biological mask to help fight off infection on the plane and also a strict hand washing regime.
I also adopted a positive attitude as I felt as tho I was taking the fight to the Wegs (yes I am a bit loopy) Oh Well.
Wishing you all the best and maybe next time I fly south we could meet up!

[Beck]

Thanks Alysia, I have started to see a counsellor, it is helping but I feel that talking to people that have been through the same thing is more healing for me as well.

[Beck]

Thanks Anne, I will get in contact with Col 23 and see if they would like to meet

[Beck]

Hi Geoff, it is a small world! I grew up in Edgewater and my mum still lives there!

[gilders]

Hi Beck and welcome.
I was 17 when WG first attacked me. I was also told that I would not leave hospital alive.
I hope your doctor is correct in thinking it was a one off. Although the relapse rates are extraordinarily high, there is a small amount of people that do have a one off event. The fact that you have been off the main meds for such a long time is very promising and it's great to hear from people like you, it will give other newly diagnosed people hope that it will not be a life-long condition.
I am hopeful that there are many people who have a one off event, but we just don't hear from them because fortunately they just get on with a normal, happy life and have never felt the need to look for a support forum!

Having said all that. You do need to keep in tune with your body and act upon anything that might suggest a flare/relapse.
Do remember that if the worse happens and you have a relapse that WG almost always responds to treatment. It is obviously at it's deadliest when it's not being treated (usually down to mis-diagnosis). Now you know about WG you should never be in a situation where it won't be treated until too late.

The fact that it attacked your kidneys is the main worry. IF you have a relapse then prompt treatment will be required and even with it there's a good chance some further damage will be done to your kidneys. Over the last 19 years various relapses have damaged my kidneys more and more, that has been the main lasting effect of this disease for me.

Even if you don't post often, please come back at least once a year to let us know there's still been no relapse, we really do love hearing about WG that doesn't constantly attack year after year!