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I was diagnosed with CFA on 1 Feb of 2005. I had an xra...

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I was diagnosed with CFA on 1 Feb of 2005. I had an xray, lungfunction, and CT scan. On 7 Feb 2005 I underwent an open lung biopsy upon which the final diagnosis was made. My reason for consulting a specialist was in Dec 2003, when doing long distance running I experienced shortness of breath that a short rest did not help. I could not continue. The local GP said I had "excercise induced Ashtma". Venteze pump did not help at all. I thus left it, and slowed my running programme, but continued with river and Sea paddling. However I was still experiencing difficulty on the longer distances. In May of 2004, I went back to the GP as I had another occassion when running when I was forced to stop after an hour. The medics on the route administered oxygen, however this also did nothing to help. the Doctor then did allergy tests and said I was very allergic to cats, dogs and dust. My home is exposed to all of the above, and as I am 43, non smoking, and love my pets, I took the medication. This did not change the position. I thus decided at the begining of this year to consult a specialist to see if there was a problem, or if it was "in my mind". I am now on predisone. I have been on Azathioprine 100mg since 1 April 2005. I am exercising but on a much lesser level than before, because I was having extreme tiredness and my blood pressure was raised whilst on the higher prednisone. Now my level of fitness is low, and I am struggling to get back to it. Due to the rareness of the disease, (I am South African and information is scarce) I can not find any support groups, Also I cannot find out much about what to expect in terms of the progression of the disease. I am a positive person by nature, and analytical. More information on the expected progression, and also some "good" stories where persons have survived, would be motivational. I do not mind if I am contacted, and if I can be of assistance to anyone else, I would feel honoured.

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  • Guest
    Guest

    Posted

    I do hope this offers hope to you. I was diagnosed with Fibrosing Alveolitis 9 years ago, I was 34 at the time. The medics were baffled as they had never come accross anyone in my age bracket with it, and I had non of the usual related symptoms known at the time other than increasing breathlessness,I was not a smoker but had been in the past it was diagnosed after multiple investigations and my GP faffing around with various inhalers including blood tests, a bronchoscopy etc over a 3 month period, and only finally confirmed when I was admitted to A & E in respiratory failure. I had lost 3 stones in weight due to the extreme breathlessness and related inflammation preventing me from eating much, I had to sit bolt upright in bed as was so uncomfortable and breathless when in a lying position this resulted in a sacral pressure sore. I was given o2 treatment along with high dose steriod injections and sent home after 2 weeks with reducing doses of predisolone and three monthly lung function tests, this went on for year.

    My lung function tests remained within normal ranges so I was discharged by the hospital as an outpatient and advised to be aware of my breathing and any changes. As the medics were still baffled they were really unsure about the future and whether there would be any further episodes - very encouraging at the time!

    As the specialists were unsure about what had actually happened to trigger the disease, I too had been advised that as there were allergens in my bood in particular bird proteins that I should remove any possible triggers and was advised to get rid of any pets we had and blitz clean my home.

    I did as advised as was so relieved to finally be able to breath when I moved, that I rallied the troops and returned home to a petless and pristine property.

    I have had no further breathing problems and the only reminders I have are when I go up stairs or walk up hills,or try and talk and walk at the same time I notice I am more breathless then peers some of who are smokers. I put this down to the degree of permanent scarring in the aveoli that will always be there.

    My advice to you is that if you have actually been told there are certain allergens that could be triggers then get rid of any pets. This may sound harsh but you may find your breathing improves - you could try it for 3 months blitz clean and if it works you know they act as a trigger. I am resigned to the fact I can't have pets but having been through the nightmare of 9 years ago relaise how lucky I am to be at home wihtout o2 and leading a normal life.

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  • Guest
    Guest

    Posted

    Hi this Cheryl, the South African Runner who was diagnosed at age 43 with CFA UIP. I have responded to the treatment of Prednisone, and Azathiaprene. My lung function has improved by 30% since at its worst (now normal), I have run two 21.1km races and a 32km race this year. My CT Scan had my specialist baffled as the honeycombing is completely gone, and the fibrosis is almost gone completely. WHO DOES NOT BELIEVE IN MIRACLES? Please anyone out there, never give up. Listen to your doctor, take your medicines, and take supplements to counteract the negative of the drugs. If anyone would like more info, please email me at **** I will be more than willing to motivate and give the \"bright side\".

    [i:27347be6db]This message was automatically imported from the original Patient Experience[/i:27347be6db]

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  • Guest
    Guest

    Posted

    Hello all,

    To the South African runner, I am 39 year old with UIP/Polymyositis

    I too have a positive attitude and deal with the "cards dealt" in that manner...I am on Imuran 200 mg and Prednisone down to 5 mg, I take a host of vitamins and Xango (mangosteen) as a supplement and my doctor precsribed Mucomyst (N-Acetylcysteine) 600 mg twice a day, UCSF has tested with some postive results, it won't stop the scrarring but slows it down...keeping the positive attitude is key and good support team family and friends...my life has changed drastically....I've learned to adjust...I had no choice...when your tired rest...don't push yourself...you'll hurt yourself...pacing is very important...I was glad to find this site....so feel free to e-mail me.. :D..each day brings something new just take it day by day like the other gentleman stated he's quite right...my UIP was also confirmed via lung biopsy VATS. Take care all.:cheers:

    [i:bd57c9641e]This message was automatically imported from the original Patient Experience[/i:bd57c9641e]

  • Guest
    Guest

    Posted

    South African Runner,

    Identifying your triggers are very important and where your symptoms seem to increase...mine was in my work place ..I can't have direct airlflow on me ...no sitting under ceiling fans ...my body doesn't like commercial HVAC units...I'll begin cough and keep enviromental mask in your car and home...those are the few things I found helpful....I know longer work...my lungs are sensitized I have multiple triggers...so protect yourself....by the way here's my e-mail address **** 8).

    [i:4cd6fae8bc]This message was automatically imported from the original Patient Experience[/i:4cd6fae8bc]

  • Guest
    Guest

    Posted

    Hi the South African runner,

    I am currently doing a presentation on UIP to my physiotherapist colleagues.. I would love to use your history as an example.. as it always add a bit of reality to the dry factual stuff. I know this is a bit last minute.. but if you (or anyone who's reading this) can reply this by this coming Sunday (10.9.06) that would be great.

    do u have noisy breathing or tightness in chest? what do u normally have this and what particular activity/environment/weather that makes it worse.

    do u normally cough? is it dry/moist? do u cough up anything? what color? what time of the day?

    what's your last blood gases results?

    that's all the info that i'd like to find out at the moment. thanks!

    [i:d9e00c23bd]This message was automatically imported from the original Patient Experience[/i:d9e00c23bd]

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