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Discussion:
so many questions
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I am new to all this and have many questions. I am a 61 year old female, new dx. and not sure what to expect, I know it is a progressive disease and each person is different in their journey. Is transplant the only sure treatment? Do most people end up on a bipap machine? Prognosis seems anywhere from 2-5 years? Correct or not?

Sue
Posted on 02/06/11, 10:41 pm
13 Replies | Most Recent Add Your Reply
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Reply #11 - 04/18/11  9:37pm
" I just returned from Toronto and doing the assessment for transplant. I will hear from them in about 4 or 5 weeks if I am accepted. I was dx 2years ago. "
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Reply #12 - 01/27/12  3:32pm
" Hi Everyone, I too am new to this and felt a sense of relief when I came accross this forum. Im 30yrs old and care for my 68 yr old mother who was DX in March of 2011. My mother had gone through open heart surgery in 1988 to replace a heart valve so allot of her symptoms to us were related to the angina that it left her with. She had been getting chest infections and had the worst cough for around 4 yrs! Her Gp always sent her for chest xrays and gave out antibiotics over the phone each time a chest infection took hold. I got too a point when she kept turning blue that I contacted the Dr and said that I wanted an oppintment in person and not over the phone for the both of us as I wasnt happy with the treatment she was getting. She was sent for yet another chest xray prior to the appointment. We were then told that my mother had PLF and was given a choose and book letter to make an appointmet at our local private wing as they could give the earliest appointment. When I got home and started to go through all the bits of paper that he gave us to make the appointment, I came accross an xray report that states "Pulmary Lung Fibrosis, progressive since 2008"!!! I have spoken to a consultant friend of mine and asked, "for something to be classes as progressive, does that mean it needed to be noticed from that date" and he confirmmed this!
So my mother had gone three years already strugling without treatment or support. We were given oxygen at home for a minimum or 20hrs a day and portable ones for in the community. She's put on so much weight, her legs and ankles are swelling and her knees and ankles fusing. This all adds preasure to her already weakened heart and has left side hypertension of the heart.
She looks so sad all the time and only yesterday after nearly a year have we got to the top of the list for an exercise class. I give her leg and foot massage everyday to help her legs and hand massage to relive the arthoritis pain. Help her with her chest physio besides help in the bath as she cant reach her feet and wash her hair as she has been told that reaching above her head causes too much strain on her heart which seems to be showing sugnificant swelling with each xray. Im sure you all know how this feels but I feel so useless and would happily take this from her just to see her smile again. Im sure when I talk to people at work they think I make it up (work full time as a support worker).
So now dont talk to anyone about it. Have lost contact with most my friends as am scared to leave her for too long. Im not sure why ive put all this it all seems like winging and moaning and rambling. maybe i just needed to get it off my chest.

I love my mum so very much and I guess I took it for granted when I was younger that she would be there for ever.

I love spending time with her and we talk for ages, well i do as some days talking makes her so tired so she just listens.

I hate to hear her say shes sorry when she has to ask me to do something shes struggling with.

Thanks for reading this.

Much love and thoughts to you all from my heart xxx "
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Reply #13 - 01/29/12  4:47pm
" Wow, I just read your post and felt that I needed to tell you that you are an amazing person and daughter. I am sorry that you're Mom is suffering so much and it is maddening that the Doctor's would allow her to suffer without treatment. I was diagnosed last year but so far, I have no progression and really have trouble getting Dr.s to answer my questions about the next stages. It is very frustrating but my advice to you is to keep putting pressure on them to help you keep her comfortable and even look into a lung transplant if it is an option for her. I will be thinking of you and hope that I have someone as caring as you when I get to that point. Hugs. "

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