On set of WG & more

Hi Steve,

I had kidney and lung issues and my kidney function is 40%. I am 36. I have a 10 month old and a nearly 5 year old and I was fit too. I was diagnosed in Jan and I have returned to work. I work for Aberdeenshire Council and my line Manager felt obliged to send me to Occupational Health. I was on Maternity leave and not off sick but as I had bulit a house I wanted to return early for financial reasons. The Officer had worked in the renal ward and was sympathetic to my illness she recommended a phased return which I am at the moment carrying out and on my first 3 nightshifts they have an extra member of staff on duty. I work part time but dont get too much sleep as I have to balance being a mum and housewife. I did this before Wegeners and Ill be damded if It changes the way I have plaaned things in my life to go .I have been lucky but I feel for you. It would have done your self esteem and positivity much good. With me I have a puffed face due to the Steroids but once that settles We look normal as If nothing is wrong so I think people cant feel sympathetic as they dont understand. As for Information regarding Disability and benefits contact Paul Pegg at the Stuart Strange Trust. Look it up online. The Man is an Angel and Was a great lifeline for me post diagnosis. . Best wishes Debbie

Hi Debbie

Thanks for your reply. I know Aberdeen very well, in fact I have been in the Council Offices, I was Project Manager for the City CCTV installation. I dealt with a great man called Alistar Gunn.

As to WG, as you say, I also do not belive the illness is seen for it's full implication. I also went into Kidney failure and then suddenly my fuction returned to 90%. This confused me and my Consultant told me that the nature of WG is to \"act like\" all types of illness-when in fact it is not the exact illness-yes, I am still confused.

I now mainly have nose, ear and eye problems day to day. I had a \"T piece\" fitted in my ear, in fact twice, it keeps falling out. My eyes water all the time and I have developed a blocked tear duct, I am told this requires another opperation!

My reason for the mentioning Works and Pensions is I was on benfit after coming out of Hospital, which in short have now been withdrawn as the State does not think I am ill anymore. Has anybody else come across this?

All we can do is battle on.

All the very best Debbie and all the best to your family.

Regards

Steve

I was diagnosed in Nov 2005 and my employers were brilliant with me, I had 4 months off work and when I went back it was done slowly and allowed me to get myself back to fulltime. Over the last year I have changed my job within the company and they are very understanding about my illness, they even asked for some information on it so that they could understand it better. I have off days when I'm tired but they are good.

Hi Steve

I got diagnosed in Oct 2008. I had been made redundant in the June and was supposed to be taking on the running of our pub, which unfortunately we had to give up because of my illness i was just too tired and i could see my partner getting more and more bogged under, so we sold our lease. I have since been on the benefits (Incapacity) and so far everything has been great although we have had to adjust our spending habits. I have only been on them since december last year though. worked from a week after leaving school till last june, im 33 now, never had to make a claim for benefits so that was strange. the forms felt like they were never ending.

Lisa

Hi Lisa

So I am not the only person in Manchester with WG. I was told I had WG in 2007 and I think I have come to terms with it. Funny thing is people think you look OK so therfore you must be OK. This I belive is a standard WG image.

With regard to the DWP I have been asked to attend a medical on the 9th September which I belive is to give them prof that I really have a condition. Not easy to explain WG so my Consultants have back me up with letters. Should be an intresting day out!!!!!!

I did attempt,in 2008, to get back to work as a Project Manager and had to be told by my family that it was effecting me-I could not see it. Like all of us we do not want the condition but we are stuck with it.

By the way which Hospital looks after you? If it is Hope Hospital do you know Peter Turkington the Respiratory Consultant?

Cheers for now

Steve

Hi Steve,

Lisa an I have made contact by telephone. She managed to give me a private message with her details. If you want to for me to call you for a chat just drop me a line. Debbie

hi steve

yes i am with hope but under the renal side my consultant is dr uthappa, but when i was first admitted in oct last year i did see some lung doctor but not sure of his name. i did meet someone on the miu ward with wegeners when i was having my chemo just after christmas. last week i had a doctor come to my house to see me from medical services i have been awarded dla, but do have pain in my knees and ankles still and find it difficult to walk somedays and get out of breath very easily, but when i applied i put that i had been ill from 2009 instead of 2008 so they say u have to be ill for 3 months prior to recieving dla so i have only just started getting it but i have asked them to reconsider the claim with the new date of 2008 i have sent in my discharge notes from nov last year so they have evidence but they wanted to send a doctor out as well to see if i had been ill for last 3 months, great isnt it yet just sent a sick note to incapacity for 6 months dwp are great no department liaises with any other. hope you r ok i look ok from the outside also but my kidneys only work at 30% and i cant do half as much as i want to do but people cant see the insides so assume u r now ok. we have moved out of our pub in apr this year because of my illness but i really was starting to get fed up with hi lisa u look great r u better now, when they all new i was on chemo and prob will be for next 2 years and i got fed up of explaining it wasnt how i looked, it was what u couldnt see and how i felt didnt mirror how i looked.

hope to hear from u soon

lisa

Hi Lisa

As you point out \"we look fine\" from the outside so when I am asked what the condition is I find people look at me with a blank expression and I am sure they think I am making it up!

I went for the medical this week quite intresting really because the Doctor (I assume he was a Doctor could have been a Plumber for all I know) he could not find a box to fit me in, for example he rattled off some conditions and WG did not fit one of them but,in fact, many of them.

As for the result of the examination I will not know for about 10 days should be intresting as the DLA stopped all my benfits last year as they said I could now walk and feed myself-how did you get on DLA?

May be it would be better if we make contact on private email, Debbie has sent me her phone number using a private path on this site. If you wany let me know your email or even phone number and we can compare notes.

Cheers

Steve

[quote:42e2f39cde=\"Steve.Manchester \"]Hi to you all.

I am 55 years old and up to the \"on set\" had always been healthy.I was diagnosed with WG in Feb07. When told my first remarks where \"what the heck is that\" (or words that express the same point!) I actually have a stammer so not only was I given an illness I could not spell-I could not say it either.

I went through and am still on the standard WG drug range. As with the described symptoms I had the whole thing, nose,eyes,lungs,kidneys etc. As luck has it my Kidneys recovered and my lungs regained some strength.

I still \"run out of steam\". I am deaf in one ear and have constant nose problems. However I always try to remain positive.

Have any of you returned to full time employment? have you told your employeer about WG?I had a very good well paid postion as a Project Manager but was pushed out due to the illness.

Anybody else had similar employment problems and has anybody had any dealings with the Works and Pension office?

In closing are we with WG considered disabled? I ask because the illness is so rare I feel WG is looked upon as a \"made up condition\" and is not considred serious as we all know it is.

Comments would be appreciated.

Cheers

Steve[/quote:42e2f39cde]

Hi Steve

As you know WG's is still considered to be very rare and is a serious illness that needs to be treated with respect (e.g always take your medication). However it is still misunderstood by many health professionals as my farther-in- law who was a GP for many years (but is now retired) had never heard of it when I was diagnosed. It is something that fourth year medical students study from text books but perhaps may go through their whole career never actually seeing a case. Therefore it is unlikely that many employers and including the general public to have heard of it (some might have but few I think). So I guess it is up to the likes of us to make them more aware of it.

So having worked as occupational health nurse for many years I would say that WG's would be covered under the DDA (Disability Discrimination Act) and perhaps this is something you may consider looking into. In Scotland we have something called Access to Work which is financial assistance to help employers and employees with getting a workplace assessment and depending on the outcome of that perhaps some extra aids/help for the employee. However it very much depends on how \"enlightened\" your employer it with regard to supporting its workforce.

Hope this helps and if you want to discuss further we can always make contact via the personal message system.

Take care Steve

Mo

Hello

In some ways I feel like an \"old boy\". I am 49 but was diagnosed with WG back in1997! This was when my children were 5, 7 and 9.

I came through the ENT department at the local hospital after having trouble sleeping at night - they performed an operation on my nose.Then I \"seemed\" to get an infection after the op they admitted me back -filled me with steroids and didnt have a clue what was going on. They eventually gave me an ANCA test and I was admitted to St Helier Hospital Renal Unit just as my kidneys failed.

I was then on HD, plasma transfers, blood transfusions and tons of meds. I was lucky that my kidneys eventually recovered. I hated HD.

It took about 6 moths to go into remission and about another 6 to get back to work full time.

So I have been lucky for about 10 years. Taking only frusimide and a high blood preasure med.

However I was diagnosed with active WG again at the end of August. Its come as a great shock starting with nose bleeds and non-productive coughs and general fatigue. I was/am very depressed with it all.

But what I have to remember is I got through this once and am getting more advanced treatment this time around - and perhaps more importantly there is life after WG.

My experience of Frusemide is that of a fluid retention. 10 years of no toxic and steriod side affects is good. Did you think that Wegeners would not return after all that time? Was the return picked up via regular checks or did you fall sick. I was terribly shocked after my diagnosis and I can understand how a reappearance of WG would get you down. I feel so well but now I cant stand anyone physically treating me . i.e Smear test or the dentist giving me a filling so I think I must be traumatised after the probing and needles. I feel in denial half the time as I feel great but a huge blood blister appeared in my mouth and I freaked out thinking It was WG. So in reality I am frightened. Much love Debbie

Hi Stevehope you are ok i can see you have had a flare up hope they have caught it early enough and you r feeling well again soon. If you need to talk u know where I am, Take care, Love lisax

Hi Debbie

My husband has just been diagnosed with wegeners after having an unecessary lobectomy - wrongly diagnosed lung cancer! We are Aberdeenshire and would welcome support!

Cheers

Lobby[/b]

Hi Lobby

Sorry to hear about your husband being diagnosed with Wegener's, but if he gets rhe right treatment, he will feel better within days. All of us on this site wish your husband well and tell him that its going to be a long job before this disease is brought to remission.

Tell your husband to think positive and keep his chin up.

Regards to you both - Mo Grant