Hello from forum newbie but not a wegeners newbie!

[kmac14]

Hi all I have just discovered this site having lived with wegeners for 23 years. Never even talked to anyone who has had wegeners before!

[Rose]

Hi Kim

Welcome. It must have been a very lonely 23 years with our very special disease and with all its twist and turns you must have felt at times you were going crazy. There are many here who are going to be very happy to chat to you about WG. Sure you are going to feel at home here very quickly. Please share your journey with us at some point.

Rose

[kmac14]

Hi Rose, thank you. I didn't feel sure about boring people with my long story but here goes. Firstly, I was asking some advice about my lungs and was directed here. I was diagnosed in 1987 aged 17. A long time passed before diagnosis; they had some ideas at that time about lupus but it was early days with wegeners. They had just devised the anca and eventually they got me mainly because a man in the renal unit which I was eventually sent to had just died of it. ( very reassuring to a teenage girl).

Aanyway, I responded very well to treatment but the damage had been done to kidneys and lungs. They absolutely bombarded me with immunosuppression back in those days - much less harsh nowadays. I didn't seem to get another flare up - never another positive anca but one doc who is a vasculitis specialist did ponder whether it was slow burning in the background. I didn't feel that it was. So at 27 my kidneys eventually did give up the ghost and I was very abruptly told that I'd be going on dialysis. No support, just deal with it. So I did and I dialysed for 3 years and then had first transplant. Meanwhile lungs were always an issue but were overshadowed by renal issues. Chest infections and such have added to existing damage and now I am quite stenosed. I'd say I have around 3 lobes left total. Being optimistic. But I swim most days and I do everything I can to keep lungs as open as possible.

I had had my second transplant around 2 years ago and all went extremely well and is still all excellent in renal terms. As for lungs, I worry and I do not get good - well any support or managenment or anything from pulmonary function dept where I now live. They are awful. So I am about to yet again enter into battle with this poor dept which seem to still live in Victorian times - in order to try to get some kind of management for my lungs.

There is much, much more to the long, winding and mountainous road of my wegeners story but that is the short version. I am in Scotland.

[Rose]

Hi Kim

When I saw your name I thought do I know this person but I think it was /is because it is so Scottish. I am Scottish, born and bred there but moved away in my early twenties. I live in South Africa and have been here for the past 36 years.

To get back to business. You have had a difficult journey to say the least and to go through all that alone without the support that we have on this forum is hard for me to imagine. Did you go into remission and come off treatment? Were you on medication when you relapsed at 27? Although my lungs and kidneys are affected, I have been in remission for 6 years and to date still doing OK although I have had a few minor flares. Keeping my fingers crossed it remains this way but who knows. My doctor wants me to stay on immune suppressants for life as he is of the opinion it would prevent the possibility of a major relapse. This might still happen whilst on medication but there is less chance of it,
I am sure some of the people here with lung issues will be able to respond to any questions you might have, Are you aware that the Aberdeen royal Infirmary has a Vasculitis Department? Also there is an excellent and very active support group in Scotland with its headquarters in Glasgow......www.laurencurrietwilightfoundation.or g (http://www.laurencurrietwilightfoundation.org).

I hope you do hang around here but I think that this group will know of the best hospitals, doctors etc in Scotland who will be able to help you with your problems.

Wishing you all the best

Rose

See that link does not work so just 'google' Lauren Currie twilight Foundation.

[kmac14]

Hi Rose good to hear from you. I did move to aberdeen at 18 and studied there. They kept me on heavy immunosuppression for three years despite me being fully in remission. I had a crisis because they virtually wiped out my immune system eventually and so then they pulled me completely off any immunosuppression except prednisolone. This gave me another crisis but it sorted out in the end and I was maintained always on low dose pred and mmf. But the damage was connective tissue so eventually the kidney function fell off the plateau if you see what I mean. Ten years in though so I have had a pretty full life and I forced and willed that it would not hold me back from what I wanted to do. It never has. Even on dialysis I worked full time. So the dialysis was really just a natural eventuality following the initial damage. First kidney lasted over 13 years. The lungs are my problem just now because I really feel that Something is going on and I need assistance which is just not there. They are horrendous to try to deal with. I have heard of that vasculitis unit in Aberdeen and that might be a good idea to try to get over to be seen in. Thank you for the links also - I will be looking at them. I feel that I shouldn't have to fight tooth and nail just for that pulmonary function dept to even see me. I feel that after all I've been through and all the good care, this bad dept are going to be the end of me.

[Jayne 14]

Welcome Kim
Glad you've found us
Xx


Sent from my iPad using Tapatalk

[kmac14]

Thanks Jayne, just reading through all the stories. So many familiar experiences. Feeling quite weepy about all these people and their stories.

[Rose]

. Thank you for the links also - I will be looking at them. I feel that I shouldn't have to fight tooth and nail just for that pulmonary function dept to even see me. I feel that after all I've been through and all the good care, this bad dept are going to be the end of me.[/QUOTE]

You MUST check out this link. I know that through them you will find the help that you need. The foundation is run by the parents of a 15 year old girl who died of the disease in Kilmarnock around 2010. They have made it their life's mission to raise awareness of the disease, to raise funds for research and to help others stricken by WG They will be able to direct you to somewhere where you will get good treatment.

If possible stay with us also as i am sure there would be benefits for all of us here and for you.

My daughter is studying in Aberdeen at the moment. RGU

Rose

[kmac14]

Thanks so much Rose. I am from Ayrshire and reading Lauren's story is so close to home for me. I don't really know how I actually did live back when I first developed the wg. It was months and months of symptoms and then acute kidney failure and months of rural hospital with no clue. Finally went to glasgow and they were on it but said that I was only the second ever that they had diagnosed. I was a case study back in 1987 so why did this happen to Lauren so recently? Heartbreaking and I am a teacher so if I had by some chance been teaching Lauren I'd have known. I would have spotted it. I will talk to them.

[mishb]

Hi Kim and welcome to the forum.

You certainly can teach all of us, in regards to living with WG.
I can't believe that you have lived with it all of this time and not spoken to anyone else - and now, here you are with hundreds of us from all over the world. Thank goodness for the internet.

We look forward to hearing more from you - thankyou for being here :biggrin1:

[kmac14]

RGU is a great uni, Rose and Aberdeen is a great city for student life. What is your daughter studying? Could I ask your story? Sorry not sure of the ways of the forum yet.

Hi Michelle, thankyou. yes, it is quite bizarre. Met plenty lupus and loads of renal tx of course, but no Wegeners. Reading some on another thread, yes it is true that the fallout from Wegeners does come back and come back. There are big blocks of time in my life when I pretty much could get on with it without health interfering too much.

[kmac14]

Is it possible to change username once registered?

[Rose]

RGU is a great uni, Rose and Aberdeen is a great city for student life. What is your daughter studying? Could I ask your story? Sorry not sure of the ways of the forum yet.


She is doing MSc Physiotherapy. She is almost finished, got one last placement which she will be doing ion England before returning home to SA for Christmas. Yes, she has really enjoyed her time there and of course going back to her roots.

If you click on my name and choose to go to my profile you will see my posts. I think if you go to my very early posts you will find my story. I got sick in 1989 but went undiagnosed for 17 years. It attacked my GI system but it was not before it spread in 2007 and then attacked my lungs, kidneys etc that I got diagnosed which for me was a good thing as I was not mad!!!! and the treatment gave me relief from my, at times, severe debilitating GI issues.

Rose

[Rose]

Is it possible to change username once registered?

I dont know. I think you should send Andrew a message. He is the boss and runs the forum. I dont think he reads every post so you should just contact him directly.

Click on FORUM then on COMMUNITY..then on MEMBERS LIST and you will find him there under A

Rose

[kmac14]

Thanks Rose, I will do and I will read your story. Great talking to you tonight.

[Rose]

I dont know. I think you should send Andrew a message. He is the boss and runs the forum. I dont think he reads every post so you should just contact him directly.

Click on FORUM then on COMMUNITY..then on MEMBERS LIST and you will find him there under A

Rose

Hi Kim

There is actually a thread for questions etc you may have about the site. You will find it when you click on FORUM. It is in the 'Off Topic' category.

Rose

[Donna-from-Philly]

Welcome to the site. It has been a huge source of info for me. I just recently realized how rare of a disease this is. Your story is amazing. My son is 17 and I can't imagine having him be diagnosed with the disease. I was 42 when I first started having symptoms and 45 when the diagnosis was confirmed.
If I may ask a question? How do you think the disease has changed you because you were diagnosed as a teenager.
FYI....In the states all things Scottish is very popular. A young friend of mine is of German and Italian decent and is planning a Celtic wedding.
Anyway welcome and I'm glad you found us.

[kmac14]

Hi Donna, lovely to hear from you. Yes I think that it has made my life something different from what I would have been. I feel very strongly that I did what I wanted to do and did not let anyone tell me or decide for me whether or not I could have done all the things like college and career, etc. I did it and I would get annoyed when health interfered but largely I kept health at bay. I did not have kids so that would have been different. I think that it is always important to forget what you can't do and push push push on what you can do. In many ways I have been extremely fortunate. I always think of the health thing as a small room in a big house full of rooms. The big house is all of what makes up the sum of who I am. I keep out of the small room unless absolutely necessary. If that makes sense.

[annekat]

Kim, I've already replied to some of your posts, but need to welcome you to the forum! It is the greatest. I don't know how I'd have gotten along without it these last 3.5 years, and you did it for 23! You will be one of our old hands at WG here, as there are few who've had it that long. How nice it must be for this community to open up for you after all those years alone and in the dark! Feeling like you were the only Weggie in the world. As Michelle said, thank goodness for the internet. Congratulations on finding us.

[chris.wg]

Hi Kim. Wow I thought my 2 years without this site was a long time. 23.... Again welcome.