CT scans

[Mendy]

Hi, has any of you seen your lung CT scans? I would like to know the difference of lung ct scans between the patients of IPF and hypersensitivity pneumonitis. Google says the fibrosis of lungs on ct scan of patients with ipf start from the base of the lungs, but on ct of patients with hypersensitive pneumanitos fibrosis is located on top and middle of the lungs. The same time google says its difficult sometimes to find out what the patient got IPF or HPF so need a biopsy. I wonder why if ct scans show fibrosis on different locations.

[Hidden]

According to my lung doctor most lung dieases are basicly the same he said .. it's destruction of lung matrial and time it takes is more important.

Most doctors when the see shadow mass on lungs throw antibiotics at it and wait to see if it go's if it's still there the call in Granuloma if it's not killed ya.

In my experience lung doctors gp treat us like lemons .. So I would always ask for copy of radiolargest ct scan report as it cuts threw toff doctors only think we need to know.

If ya chasing asbestos claim fact you have fibrosis should be enough 

[Mendy in reply to Hidden]

I noticed that UK doctors dont give neither blood tests results nor copies of ct scans to the patients. They just say, everything is fine or not fine and u got like this disease. That was very unusual to me when i first went to the uk. Here i can go to hospital and do a ct scan and everything i want without gp sending me. The problem is we dont have good doctors, they arent well trained, most of them are stuck in 1960ss medicine and dont want to learn anything new. So thats why for every disease we have to read a lot then compare what doctor says, and then to think to trust him or change for another one.Plus all pharmacies here sell u any drugs without prescription. I cant understand that people in uk have to wait for gp to give him antibiotics after a week( because need to wait for appointment) when disease is worsening more, in here i just ll go to pharmacy and they ll give any of them.

[Hidden in reply to Mendy]

You not wrong about GP's Doctors stuck in old frame of mined seems commen ... a lot of new thinking developments are comeing from third world countries SO all is not lost.

Just have to beat the drum till they take note .. Subject of antibiotics this new thinking as to use and immunity and use of alternative medicine.

Less shaking of beads and more use of gut bactria and vitamins seem's to hold few promising leads.

Currant I am on maintenance antibiotic's for constant infections and sufferd few bouts antibiotic resistance BUT since trying bit of my own researched alternative medicine have not been doing to bad.    

[Billiejean_2 in reply to Mendy]

Where do you live Mendy ? 

On the subject of how conditions present differently on scans and X-rays, I can only tell you that when there's fibrosis present it's very easy to see and presents as a white area.

[Mendy in reply to Billiejean_2]

Hi Billiejean_2, i live in Russia. Yes, you are right the fibrosis is seen like white area on CT, but each doctor says different seing CT. Local doctors say its a) ipf b) its nothing dont pay attention everyone has it.

[Hidden in reply to Mendy]

Granuloma is fibrosis but unlike ipf its self isolating where as ipf is like a wild fire on scan.

Think thats why the call it other stuff even tho same.

That why ipf as p## poor prognosis 

[Mendy in reply to Hidden]

Well on ct, fibrosis is located on top of the lungs Google says ipf starts from bottom of the lung. 

[Hidden in reply to Mendy]

Hi i have load crap on my right lung upper nodulaty graunuloma took 3 years to find out what gp meant with o your one with cancer Guess she was wrong about cancer 3 years ago.

Thats why i say the throw antibiotcs at it an see what happens.

Not like the tell patient ITs guessing game.

But as is the right lung is biggest and by all accounts when you breath that is first perfused.

I have been fighting asbestos asbestos cement claim for three years unaware i was suffering silicosis.

But am sure i will have my day with em as dieases progresses is harder for them to hide stuff from us.

Well thats my opinion from asbestos fibers been coughing up.

 

[Mendy in reply to Hidden]

Whats your diagnosis? Can you ask to be referred to lung specialist? I think gp cant treat all disease because they dont know everything, its really dangerous to play with people s lives and can be too late when a real diagnosis ll be found. For me gp is something like a reseption, they should reffer people to specialists and they know a bit of everything, which is not enough.

[Hidden in reply to Mendy]

Had few S### jobs in my time and think my lungs reflect it.

Have emphysema central palpetal think is also bronchitiasas.

Scan results talk of honeycombing I think and Granuloma.

The told me I have obstructive and restrictive lung diease. 

But yer am under lung doctor ... All from smoking so the say NOTHING on jobs or occuption.

All of which I find amazing as never started smoking till mid 20's  

[Mendy in reply to Hidden]

So yours is not IPF. Honeycombing goes together with scarring, right? Has your scarring stopped now? R u on any drugs? U know, i know many people with good lungs but they are smokers(my friend is one of them with clean lung xrays but smoking for 30 years), and people who never smoked. Most people with ling disease as i see are the ones who never smoked.

[Hidden in reply to Mendy]

That's why I had such trouble with diagnosis as I say am suffering from fibrosis caused by asbestos and silica but my doctors find it easy to blame smoking.

Me personally I think becouse I proved was school source of my issues the trying to keep it quite.

Like the say it's who's due due is greater

[jenss]

Dear Mendy,

Please have a look at the quick pocket guide done by ATS in 2013 based on the 2011 guidelines: nxtbook.com/nxtbooks/md_con...

Particularly Tables 4 and 7 as well as Figure 3 may help you with your questions.    Best wishesxx 

[Mendy in reply to jenss]

Thank you very much jenss!

[Hidden]

G'day Mendy

Susan's first x'ray showed fibrosis in the lower lobe, second scan revealed honeycombing in middle lobe and scarring increasing in the lower lobe

Third scan  12 months on, Honeycombing spreading thru the lungs and scarring right around outside of lungs and spreading inwards. 

I cannot speak for anyone else, but once we found a GOOD lung Dr everything was explained,even pointing out the honeycombing and scarring on the x'rays and CT scans.

Both our Lung Dr and the hospital Dr were very firm in their opinion re biopsy.

"Do not have it, especially with fibrosis", and yet we hear of many Dr's who recommend it. Strange!! Maybe they are living in the 70's.  No Dr  we are not lemons thanks to sites such as Health Unlocked.

The biggest problem we have encountered is that a "sleep" Dr suddenly becomes a fibrosis specialist, based on what?? 

 Unless your Dr is actually involved in the lung disease area full time how can he/she  better understand and identify the disease.

Our first lung Dr told us  "Yes you have IPF and then 2 weeks later  "No you don't", but after Susan spent a week in hospital, of the SIX doctors who examined Susan,  3 confirmed fibrosis and 3 said "No Fibrosis"  but all six agreed  "Do not have a lung biopsy it is too dangerous."

And yet we are asked to put our faith in them!!

Someday,somewhere we will be able to look at a list of Dr's who have successfully performed lung transplantation, and those who know what they are talking about with respect to lung disease.

Until then we may well be lemons or I would rather have it Guinea pigs!!!!

Will (Australia)

[Mendy in reply to Hidden]

Hi BurraboyEasty, thank you very much for a helpful information. So IPF does start from lover lobe then. Thank u, u were very helpful!

[Hidden]

G'day Mendy,

Cannot say if all IPF starts as described in my earlier reply. It did with Susan.

A friend had COPD and the Dr's performed a partial removal of her left lung (lower Lobe). Incidentally she had the other lung removed and was transplanted with a replacement at a different time..

Re the honeycombing.

This is an extract from a medical report

Honeycomb lung" is the radiological appearance seen with widespread fibrosis and is defined by the presence of small cystic spaces with irregularly thickened walls composed of fibrous tissue. Dilated and thickened terminal and respiratory bronchioles produce cystic airspaces, giving honeycomb appearance on chest x-ray. Honeycomb cysts often predominate in the peripheral and pleural/subpleural lung regions regardless of their cause.

Hope this may help you.

Will

[Mendy in reply to Hidden]

Thank you lots.How is Susan feeling now?

[montymillie]

hi I have IPF and have sceen my scans/x-rays and the whole of my lungs are covered in

[Mendy in reply to montymillie]

Hi montymillie,the whole lung covered by fibrose is when the disease is progressed too much.what i really dont understand WHY u got IPF, because a) you are young b) you are a female.

The same i still dont understand why Susan got it, because in most medical sites i read IPF is mainly diagnosed at people after 60th and they are males mainly

[montymillie in reply to Mendy]

oh I see what you mean, they were very interested in me when I first got diagnosed, mystery being so young, but they soon got bored of that, mine might genetic, biological family have lung problems or they think it might be years on certain mediciations, which they took me off a long time ago. I just thought it was one of those things, any body can get any thing at any age, luck of the draw!!  MM  xxx

[Mendy in reply to montymillie]

U know, i noticed that ipf is more northern countries people disease, or the people who lived in cold countries whenever.

[jenss in reply to Mendy]

Hi Mendy that is an interesting and maybe quite correct observation of yours.   There are more and more diseases linked to a lack of Vit D and often correlations between disease incidence and sun-exposure can be made:  those living close the equator having lower disease incidence.   It is also recommended by some drs that those with lung diseases should have a Vit D status at the higher end of the recommended level.   Best wishesxxx

[Hidden in reply to Mendy]

G'day Mendy & Martine,

Not good here tonight,Susan has been feeling pretty poorly for 2 days and we had to go to the Hospital today for our yearly check up (mandatory when on o2),the company will not continue to supply you unless it is done. My wife is in bed( 7.30pm) trying to get some sleep.

This has really knocked Susan around,trying to walk for 6 mins without o2 ,ridiculous,  she only lasted 4 mins and had to have a 20 min rest (sats dropped to 75),before doing it with o2.

Mendy this "Beast" does not target just the  over 60s, we know of a 34 yr old mother here near us who has been diagnosed 12 months ago,

 Melissa in S.Africa is only 33 and has 3 young children,her DLCO is 33%

Carol in Australia is only 52,    you know Martine's age.

A 38 year old father has just had his 4th bilateral lung Tx at the Alfred hospital. We believe it is the first time in the world.

The form of fibrosis.

It is called Idiopathic = No known cause, but I am becoming more and more suspicious that bit could be genetic, I have read of so many testimonials where family members also have it.

Will (Down under)

[montymillie in reply to Hidden]

hi will and susan, so sorry will that's susans so ill at the moment, it must cause you so much concern.  I hope she gets a good nights sleep, I find it helps me a bit the next day if I do, but it don't happen much now a days I get a few hours at a time. tell susan i'm sending her good vibes all the way from London just to her and you, of course!!

love martine  xxx

[jenss in reply to montymillie]

Hi Martine, you may be interested in the suggested health benefits of citrus please the my message below to Will.   Best wishesxxx

[Mendy in reply to Hidden]

Please tell Susan, i am worried and wish her to get very good news from transplant center very soon. 

[jenss in reply to Mendy]

pls see my reply below to Will.  Best xx

[montymillie in reply to jenss]

hi thanks janss, I've got nothing to lose, eh darlin'!!  I might give it a go. thanks for thinking of me.  best wishes martine  xxx

[jenss in reply to montymillie]

My pleasure dear Martine.   If you google "frozen lemon and health" you will find ideas on how to use it....I saw a video where someone grated an entire lemon and then kept the gratings in a container in the freezer and sprinkled onto food to taste.   I have not tried it yet as I just found out about it but I am sure it will taste great .... and I have a feeling it is good for us too.  Obviously one would not use a whole lemon at once just maybe a teaspoon of the grated lemon.  Take care, talk soon xxx

[jenss in reply to Hidden]

Hi Will,   saw you talking earlier of lemons and it reminded me of a couple of articles I came across earlier.   Was in response to someone suggesting we wash and freeze lemons and then grate them (rind and all) onto our daily food (eg cereal, pasta).   Apparently full of good stuff to ensure our health.  The second is an exiting brand new article on the potential of citrus amines in treating/preventing IPF.   Seems a harmless and tasty way to try something as drs cannot really help....

the various health benefits of citrus compounds ncbi.nlm.nih.gov/pubmed/267... (click on PMC free article to read the entire article)

IPF and citrus amines (brand NEW research)

ncbi.nlm.nih.gov/pmc/articl...

Hope Susan will feel better soon.  Best wishesxx

[Hidden in reply to jenss]

G'day Martine, Mendy and Jenss

Many thanks for you concerns re Susan. Worst night we have had since diagnosis two years ago.  It is 7.30am here and I have just staggered out of bed and passed Susan climbing back in. Poor dear, looks exhausted.

I am removing our inground fibreglass swimming pool at present (Ever started a job and then wished you hadn't),luckily I finished with the jack hammer and angle grinder yesterday, so it should be reasonably quiet here today. I will send you a couple of pics,but can only do this as a new post (Today) as pics cannot be done in a reply.

Jenss :: Lemons, When I wore a younger man's clothes I had a hot lemon drink every night before bed and also cold lemon drinks during the day, ruined my esophagus,now little tolerance to citrus,come to think of it also my passion for a hot curry,now it is either bland or mild. 

Martine, You are still in my prayers for the 11th, I am sure you will do well during your assessment

Mendy Thanks for your words, I guess it is up to the LORD now,same as with all iPF sufferers, a real sadness to think that in our case, a young person is going to have to pass in order for Susan to have an extension to hers.

The likelihood of an adult 4'8" tall being a donor (A type blood) is beyond the normal possibilities.

Talk soon ladies

Will

p.s Sorry    If when reading my messages you find a letter missing or an odd one added, it is not me, I am having issues with the keypad. Methinks someone has spilled something into it!!

Might have to wash it in the dish water!!

[montymillie in reply to montymillie]

sorry computer would not respond!       thin long white worm lines, squigley not straight, there every where, covering all , both the lungs, they look really strange. but appalently that's what IPF looks like, they have said that's mine is advanced now.  best of luck for getting your information about your self.

take care Montymillie  xxx