What is Pulmonary Fibrosis
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothe...
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Hi all
I am 26 and was dx with lung fibrosis in 2007. Since then I have got worse and now have to have oxygen most of the time. I have had a cycle of cyclophosphamide (which gave me an extra 5% yay!) and am now taking azathiophrine. I am hopeful there will be some improvement or at least no decline anyway! Both me and my husband are struggling at the moment with things mainly because we have a 2 year old son (my lung problems started during pregnancy). Just wondering if anyone can offer any advice or feedback for ways in which i can help myself etc Thanks guys - I have been reading other posts and find these really helpful. Posted on 06/15/09, 06:06 am |
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Hello and allow me be the first to welcome you. I wish I could offer some helpful advice; I'm sure there are others here with much more knowledge than me...but do understand that people do care and wish you the very best. 
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hello baby head and welcome a 2 year old can be quite a handfull sometimes,i should know i have 6 my youngest is 9 my eldest is 21 and they all live at home sitill,well sending you my warm wishes
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Thank you for the welcomes.
Yes - he is a handfull especially as he knows that sometimes I can't pick him up etc. You must have a busy household with 6!!
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Hi
Iam sorry that you have to deal with this terrible disease. I have a few recommnedations for you. 1. find a center of excellence for ipf and find a compassioante doctor there. they do many clinicla trials and they are very familiar withthe disease. 3. there is a website called breath support that helped me a lot.4. you wnat to explore transplant and want to get on the list. they have improved a lot and that should give you an option for treatment. I dont know where you live but you can find out where are the closest centers that do transplant so you can get evaluated. I wish you the best of luck.if you have any questions you can contact my email address directly and I will be more than happy to share any information I have with you. I have a 3 year old and I feel your exhaustion. I also take care of my dad who has the disease. Take care, Nazy
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Nazy. Thank you for your advice.
I am going to speak to my docs about transplant when I go next time. It is a scary thought though! I hope your dad is well
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