I'm new here and Perhaps feeling a bit sorry for myself

[The-perfect-storm]

Hi,

Ive very recently (Dec 2019) been diagnosed with pulmonary fibrosis and have been cross referred to a lung specialist to discuss treatment.

The long and the short of it is that my last meeting wasn't very positive. Due to being type 2 diabetic (which is very well controlled) and having NAFLD (Liver disease also responding well to lifestyle changes); I am not suitable for either of the 2 drugs used to slow down the progression of the PF as they are liver dependant. I also asked about biopsies which can be useful in determining types of PF and treatments/outcomes and was told that I am not well enough to undergo the procedure.

I have no complaints about the honesty and openness of our consultation as I am a person who prefers to deal in facts and doesn't deal well with unkowns and uncertainty. But I was left a bit shocked that although I don't consider myself very ill and certainly apart from the cough tiredness and breathlessness I don't feel unwell, but I am rather more unwell than I acknowledge.

I am being booked in for a PET scan after which we will have a further consultation. I'm feeling a bit down feeling a bit scared about the future. I know I will deal with this and will bounce back, but I'm a bit scared that the future is bleak I'm as well as I will ever be, and am on a downhill slope. My wife doesn't like me talking like this and will only talk positively (I think perhaps burying her head in the sand) but I understand its hard for her and she's trying to cheer me up.

Sorry for the long post, guess I'm just looking for some encouragement but also want to put my thoughts into writing. Any way tomorrow's another day and Spring is coming and if I stop working I'll get to enjoy the weather this year

And on top of that, just had my employer on the phone to regretably tell me that due to long term sickness Im probably going to lose my job anyway......... its not their fault this has been going on for over a year now, and Im still not fit for work

Fred signing off before I rewrite War & Peace

[sassy59]

Hello Fred and welcome to the HU forum which is full of very kind, caring and knowledgeable people.

I do hope you get all the help necessary with the PF and other health issues and will receive more replies soon.

I’m carer for hubby Pete who has sarcoidosis, COPD, heart problems and continuing back problems.

Wishing you well. Xxxx

[Hidden]

Your story was more interesting, but just as traumatic as War and Peace would be (tried to read it once). I hope your PET scan and further consultation gives you some hope, and a brighter outlook. Let us know how it goes.

[Dilly2]

Welcome Fred I'm sure you will find plenty of help here best wishes

[Hidden]

My heart goes out to you, dont know what else to say...welcome and express as much as you like

[cofdrop-UK]

A very warm welcome to you Fred, although I am sorry to hear of your health issues. It’s understandable that your wife is reacting as she is. It is difficult for our loved ones. Please know you are welcome to share your struggles with us. We don’t all have the same condition but all have problematic lungs and so will understand.

I do hope the scan results in some options for you.

Cx

[The-perfect-storm]

Thank you for your kind thoughts today, just had a phone call and PET scan is set up and booked for Monday 20th at 5pm, I'm very happy with the speed (or should I be worried) no seriously though hopefully moving forward to a more definite footing

[Oshgosh]

Life’s really hard sometimes.your wife will be find it hard to face what’s happening.

I attend a group for people with life limiting disease. It’s peer support psychology/ psychotherapy etc. It does help.

There are people who will listen to my fears.Perhaps if you google,you may feel nd something in your area

[Izb1]

Hi Fred and welcome to the site. You sound a very positive and upbeat kind of guy and Im sure will bounce back from this. Great news that you have your pet scan booked for Monday, no matter the outcome you will deal with this and its not too long to wait. I think its normal to be scared, rest assured that you have plenty of people on here who have been through the same thing and we will be with you to help if we can. Please keep us updated and good luck for Monday x