Any knowledge of this please?

[Guest guest]

Hi everyone, wondered if anyone has known other patients who have suffered with severe diarrhoea? Mum has had it for over 4 weeks and despite numerous phone calls to Docs and nurses it has taken this long before they decided to do a stool sample.

Mum had blood test yesterday and nurse came back today to do another seems possibly B12 problems. Guess this would be anaemia. She is getting weaker and has fallen twice in the last two days also getting more confused and also hearing voices. She is aware she is hearing voices but says they are very real. She is also sleeping most of the time but still manages to eat fairly well but not as much as a few weeks ago.

Are these typical signs of progression and does anyone know if it is how near the end are we? Think Mum would prefer to stay at home till the end but obviously worried it might not be possible.

I am going to phone the Hospice Macmillan nurse tomorrow to ask her to do an extra visit to our home as mum was too ill to attend day care at the hospice.

I am extremely worried at this latest stage of the illness but did notice someone earlier had anaemia but cant find too many references to it.

Thank you all so much for your support and advice,

love Ann (carer UK) mum diagnosed 2001 xxxxx

[Guest guest]

Thank you for your reply Joyce. Yes she has had a lot of antibiotics and has been taking some actimel to help the good bacteria but Doc said milk content might upset bowel. Hopefully stool sample and blood sample will tell us something more tomorrow but when I ask Docs why she has different ailments that might not be related to the fibrosis they seem to dismiss everything as 'well she has a terminal illness'. We know that but sometimes things might not be the fibrosis and may respond to intervention!!!!!

thank you again and God bless love Ann xxxxx (uk)

[Guest guest]

Thank you for your reply Joyce. Yes she has had a lot of antibiotics and has been taking some actimel to help the good bacteria but Doc said milk content might upset bowel. Hopefully stool sample and blood sample will tell us something more tomorrow but when I ask Docs why she has different ailments that might not be related to the fibrosis they seem to dismiss everything as 'well she has a terminal illness'. We know that but sometimes things might not be the fibrosis and may respond to intervention!!!!!

thank you again and God bless love Ann xxxxx (uk)

[Guest guest]

Thank you for your reply Joyce. Yes she has had a lot of antibiotics and has been taking some actimel to help the good bacteria but Doc said milk content might upset bowel. Hopefully stool sample and blood sample will tell us something more tomorrow but when I ask Docs why she has different ailments that might not be related to the fibrosis they seem to dismiss everything as 'well she has a terminal illness'. We know that but sometimes things might not be the fibrosis and may respond to intervention!!!!!

thank you again and God bless love Ann xxxxx (uk)

[Guest guest]

I think with any major illness or condition there is a tendency for

doctors to make assumptions which, although they may be valid, may

not be. We all have to manage our own medical care and insist. I'm

very fortunate in having a very good primary physician. When I report

that I think something is wrong (even before a lung issue), he always

tests regardless of whether he expects to find anything. In fact,

that attitude is what led to the initial trip to the pulmonologist. I

stated that three times I had encountered very severe breathing

problems beyond just being out of shape. While he believed that it

was probably just general lack of conditioning and overexertion, he

had me do a walk and then a couple of tests. He then said they were

not as he would have expected and sent me to the pulmonologist. One

such comment like " well she has a terminal illness " would lead me to

change doctors. We all know what we have. However, we also strive for

the best quality of life we can have. While the problem may be

related to the fibrosis or may otherwise not be treatable because of

the fibrosis, for doctors to dismiss it so quickly isn't acceptable.

ly, its like saying " we're dying anyway so why be bothered. "

Well, a simple example. While kidney problems can definitely be

caused by lack of oxygen, they could be a run of the mill urinary

tract infection too. A simple urine test would tell. I don't mean for

this to come across as angry, but just as a reminder to each of us to

manage our medical treatment or that of those we caretake. While

different ailments can all be related to lack of oxygen, to assume

such is not reasonable.

>

> Thank you for your reply Joyce. Yes she has had a lot of

antibiotics and

> has been taking some actimel to help the good bacteria but Doc said

milk

> content might upset bowel. Hopefully stool sample and blood sample

will tell us

> something more tomorrow but when I ask Docs why she has different

ailments that

> might not be related to the fibrosis they seem to dismiss

everything as

> 'well she has a terminal illness'. We know that but sometimes

things might not

> be the fibrosis and may respond to intervention!!!!!

>

> thank you again and God bless love Ann xxxxx (uk)

>

[Guest guest]

I think with any major illness or condition there is a tendency for

doctors to make assumptions which, although they may be valid, may

not be. We all have to manage our own medical care and insist. I'm

very fortunate in having a very good primary physician. When I report

that I think something is wrong (even before a lung issue), he always

tests regardless of whether he expects to find anything. In fact,

that attitude is what led to the initial trip to the pulmonologist. I

stated that three times I had encountered very severe breathing

problems beyond just being out of shape. While he believed that it

was probably just general lack of conditioning and overexertion, he

had me do a walk and then a couple of tests. He then said they were

not as he would have expected and sent me to the pulmonologist. One

such comment like " well she has a terminal illness " would lead me to

change doctors. We all know what we have. However, we also strive for

the best quality of life we can have. While the problem may be

related to the fibrosis or may otherwise not be treatable because of

the fibrosis, for doctors to dismiss it so quickly isn't acceptable.

ly, its like saying " we're dying anyway so why be bothered. "

Well, a simple example. While kidney problems can definitely be

caused by lack of oxygen, they could be a run of the mill urinary

tract infection too. A simple urine test would tell. I don't mean for

this to come across as angry, but just as a reminder to each of us to

manage our medical treatment or that of those we caretake. While

different ailments can all be related to lack of oxygen, to assume

such is not reasonable.

>

> Thank you for your reply Joyce. Yes she has had a lot of

antibiotics and

> has been taking some actimel to help the good bacteria but Doc said

milk

> content might upset bowel. Hopefully stool sample and blood sample

will tell us

> something more tomorrow but when I ask Docs why she has different

ailments that

> might not be related to the fibrosis they seem to dismiss

everything as

> 'well she has a terminal illness'. We know that but sometimes

things might not

> be the fibrosis and may respond to intervention!!!!!

>

> thank you again and God bless love Ann xxxxx (uk)

>

[Guest guest]

,

I agree with you that docs sometimes fail to treat when the patient has a terminal illness. I was asking my primary a question about my thyroid medication, etc. and he said to me, "you have way more serious issues to think about". Well, because this horrid disease lurks within in us does not mean we should not give attention to other medical issues or to pain control, etc.

I just believe there are a lot of lazy doctors out there. Like you, I manage my own health care.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > Thank you for your reply Joyce. Yes she has had a lot of > antibiotics and > > has been taking some actimel to help the good bacteria but Doc said > milk > > content might upset bowel. Hopefully stool sample and blood sample > will tell us > > something more tomorrow but when I ask Docs why she has different > ailments that > > might not be related to the fibrosis they seem to dismiss > everything as > > 'well she has a terminal illness'. We know that but sometimes > things might not > > be the fibrosis and may respond to intervention!!!!!> > > > thank you again and God bless love Ann xxxxx (uk)> >>

[Guest guest]

I think one thing they tend to do is simplify it all to science and

its almost like formula, you have this illness and this is what

you're suppose to do. Well, frankly, it's not their place to tell us

what to do. It's their place to diagnose, inform and educate, and

recommend. It's also their place to get to know us well enough to

tailor their recommendations to us. It's out choice then as to the

ultimate life and lifestyle decisions we make.

In your case, it would be reasonable if the doctor stated that he

could make a change or do tests, but, for certain reasons, wouldn't

see it as most productive at this time. He could educate you as to

the choices and his recommendations. However, its your life and you

have the right to make the ultimate choices.

I see some pulmonologists strongly recommending participating in

clinical trials and others discouraging. Largely those who are

younger and more recently came from teaching hospitals lean toward

the trials. I also see the same on transplants. Some who think

everyone who can get a transplant should while others discourage it

as trading one illness for another. I want my doctor to provide me

with as much objective information as he can, so I can make an

informed decision.

Many of us in the same situations and armed with the same knowledge

will make differing choices. For instance, quality of life is far

more important to me than is length. However, if I had children, I

can well imagine that regardless of the pain or condition I would

want to stay as long as possible to see them. Our values, religious

beliefs, emotional makeups, and family situations all influence us.

Also, we all retain the right to change our minds as our situations

change.

Our decisions in regard to one medical condition are not independent

of the others. I've had two very simple examples already. I have

swollen lymph nodes but not to the point that my oncologist

recommended a biopsy. Now, however, I'm having a VATS and they can be

done easily at the same time (just meant choosing the left lung), so

they will be. They could be unrelated or could be somehow related.

Going the opposite way, I was getting some second neurological

opinions of balance and peripheral neuropathy. For now, I've stopped

that process. If it is confirmed that I have IPF, I'll choose to not

continue as the hospital for that is a longer drive, whatever is

found out is not likely to matter at this point, and its just not the

way I want to spend the healthiest time I have left.

> > >

> > > Thank you for your reply Joyce. Yes she has had a lot of

> > antibiotics and

> > > has been taking some actimel to help the good bacteria but Doc

said

> > milk

> > > content might upset bowel. Hopefully stool sample and blood

sample

> > will tell us

> > > something more tomorrow but when I ask Docs why she has

different

> > ailments that

> > > might not be related to the fibrosis they seem to dismiss

> > everything as

> > > 'well she has a terminal illness'. We know that but sometimes

> > things might not

> > > be the fibrosis and may respond to intervention!!!!!

> > >

> > > thank you again and God bless love Ann xxxxx (uk)

> > >

> >

>