You may remember a couple of weeks ago I posted I was having a chest xray. I thought everything was ok cos I hadn't heard anything 'urgent' from my GP. I had a telephone consultation today with her and she told me I had a little fibrosis in the lower lobes but no nodules or fluid and my heart was the right size. Lots of positives but I asked her about the fibrosis. She said that they need to do lung function tests and take another xray in 6 months time but gave me no more info. I asked her twice but got no further.
Being in the age of the www and wanting to know, I looked it up.....how stupid am I? It ain't all that good. I can't believe what it says. I am not short of breath (particularly) and I don't have a dry cough. It's not the worst news but pulmonary fibrosis doesn't have the best prognosis either. Can't believe she told me this over the phone. I have been trying to find out if a person can have it without it being that bad. Anybody know about this that can help?
I know I probably deserve everything I get because I smoked but I am so upset right now.
Rozi, I understand how concerned you must be. Perhaps it might pay you to go see your doctor and get them to explain properly. Otherwise if you have a consultant at the hospital. Sorry I cant help much.
Thanks Jillygirl
All I have booked in is the lung function at the surgery. Going to wait to see how that turns out and then insist on seeing her.
Hi Rozi, did you have a read on patient.co.uk? Was a bit technical on there but it sounds like the lung function test will give your doc more detailed info about your condition so try not to worry too much. Doctors try not to alarm you too much until they have all the facts so maybe that was why she was a bit vague? Perhaps you should wait til you've had the lung function test first as it would appear there are many different forms of the condition as well as causes so it may be far more manageable than you're thinking. Fingers crossed for you and try not to worry too much, though easier said than done.
Thanks sinfree
I am feeling a bit better about it as I found some information that says it can be a mild condition and doesn't always progress. I really appreciate the support.
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Aww that's good. I'd stop looking now and stick with that. no point alarming yourself unnecessarily.
Please try not to worry too much.When I first had my poorly back I had one consultant telling me that the problem was so bad that I could be paralysed at any second & the spinal consultant saying 'what's the problem' and that I had very little to worry about.The great God www can be really helpful at times,as can Mr Google, but at other times maybe not so helpful.Problem.is,unless you have some medical knowledge you'll pick up ONLY on the bad bits like 'progressive' or 'terminal (doesn't apply here I promise) instead of seeing the broader picture.If your G.P was REALLY worried they would a) Have been in touch before now and b) referred you for further treatment immediately as opposed to an X-Ray in 6 months & an appointment for lung function tests. Do what you plan,have your tests then go see your G.P. to discuss the results.Trust me,I used to be a nurse !!!! Don't worry hugs heading your way.H x
Thanks H. The voice of calm and reason as usual. I really appreciate your support, and everyone's on here.
I was feeling so pleased with myself and was beginning to appreciate and celebrate the benefits of quitting. Then this came along. For a fleeting second I wanted a fag....stress....can you believe that? Trouble is I have never been sick and, like all smokers, persuaded myself for a long time that I would get away with it. Well none of us really get away with it do we?
I have decided the best thing to do is to become the healthiest I can be and stop worrying. I'll worry if they tell me I should.
Aaaaahhhh,Beth,you've really made my day XX I'm looking for a job(or I will be once this back malarkey is over) anyone need a,sympathetic ear,I promise I'm cheap !!!!!!!!!! xx
I'm with the others Rozi, try not to worry and we're all here for you. Don't forget that the body can do amazing things to heal itself. Hugs coming your way. Andi. xxx
hi rozi cant add much as dont know much. just wanted to say hello, keep positive and i am with you. we all are. ps dont have that fag! it will just make you feel worse about yourself. hugs comin your way. x
Made a resolution to get it as healthy as I can. You're right, the body is a wonderful thing and deserves a bit of respect. Shame it's taken me so long to get to that opinion. It's great having you guys to talk to!
Off to bed now! Better day tomorrow. Night all.
G'day Rozi,
I am the husband / carer of my darling wife (aged 64) who was diagnosed in May 2014 with IPF.
We live in Australia, so the procedures over there may be different.
I pray that my comments may assist you.
As you have asked for help I offer the following Information. Not advice, but merely what has transpired on our journey.
The things we have learned and have learned from.
After the x'ray the Gp gave us a piece of paper with 3 words written on it (Idiopathic Pulmonary Fibrosis) and told us to go home and look it up. This seems to be common practice.
We used Dr Google NEVER AGAIN. If you seek info on this disease, ask your Dr or use this site to converse with others who are on this rocky road. You will get much better advice/Information from someone who is suffering with it.
Next sent to a lung Dr who advised that it was NOT fibrosis only to change his opinion 3 weeks later. Susan spent a week in hospital undergoing tests.
We spent the next 3 months having chemo each fortnight,without any success. Susan is now on Mycophenolate (Pill) along with numerous other medication.
If you are not happy with your Dr's ideas Get a second opinion. We wasted 3 months with the first lung Dr before finding a good one.
If it is confirmed that you have lung fibrosis then you will need a regime in place.
Susan is 5'3'' and weighed 78K's) The medical staff told her that she needed to reduce her weight. It took 7 weeks for Susan's weight to drop to 63K's due to a good diet and exercise.
Susan attends Rehab clinic (Exercises) twice weekly and uses a treadmill at home on a daily basis.
We purchased an oxymeter,found on ebay for about $15 AUD. This has been invaluable to us as we can monitor Susan's heart rate and her oxygen levels both at rest and walking around the house.
My wife is on oxygen for most of the day but not in bed at night.
This disease is of a type that, what works for one patient may not work for another,so,if you are advised that someone is taking XXX and it works, it may not help you. Before trialing any medication consult with your Dr and be guided by Him/Her.
The lung function test is non invasive,usually you blow into a tube and this will give the Dr the amount of air you can take into your lungs in a quick breath/blow (Fev1) (FVC) and they should do a (TLCO) test to determine the amount of o2 that passes thru your lungs and into the blood stream, also ditto for leaving the blood stream.
Susan has been on the Tx (Transplant) list for 8 months now, at the Alfred Hospital in Melbourne.
If you would like any further info on our journey please advise.
I apologise if my words cause you any duress, but I can only tell it as it is,without glossing it over.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
WEEK 9 DONE DONE DONE😊😊😊😊
JillyGirl
3 months free.
Day 13 of the rest of my life.
So I guess here I go......
