Re: Can anyone help me here?

[Guest guest]

Oh Tina, you DO have a LOT on your plate! I would suggest that you and your

children all go to Mayo's for evaluation. This is all VERY complicated....

Suzanne

[Guest guest]

>

> Oh Tina, you DO have a LOT on your plate! I would suggest that you and your

children all go to Mayo's for evaluation. This is all VERY complicated....

>

> Suzanne

>

Suzanne I dont think the Mayo is an option we live in the UK.

Thanks for your care though.

Hugs

Tina

[Guest guest]

Oh Tina! WOW! The one thing that seems to be going your way is that you know WHAT is wrong w/ you and your family. My husband and I spent 4years trying to find out what was wrong w/ our young son, now 8 yrs old. Mayo diagnosed him last year w/ Bronchiectasis. Not an easy diagnosis, but @ least now we have one! That's a huge blessing.

Do you have hospitals/ clinics in the UK that are similar to the Cleveland Clinic or Mayo Clinic, in that they look at the WHOLE person and their symptoms/ complaints and make an educated attempt to diagnose and then TREAT and even CURE alot of diseases!

Have you ever thought to look into your house, itself? Are you able to find out if there is any type of mold (black mold destroys the respiratory systems of healthy people) or maybe some of the Chinese Drywall that we have found here in Florida. We have looked into all of this and I wonder how many people might be suffering needlessly, due to their own home!

Either way, you may find relief in doing any of these things, I really hope you can find some type of medical assistance in your area. I know what it's like to have to start your dr appt by flying 1/2 way around the country. Not easy, but SO worth it! Keep us posted! I am so sorry you are going through SO much! e

Subject: Re: Can anyone help me here?To: bronchiectasis Date: Saturday, February 26, 2011, 9:43 AM

>> Oh Tina, you DO have a LOT on your plate! I would suggest that you and your children all go to Mayo's for evaluation. This is all VERY complicated....> > Suzanne>Suzanne I dont think the Mayo is an option we live in the UK.Thanks for your care though.HugsTina

[Guest guest]

Hi e, It took many years for to be diagnosed, in fact even after

we knew something was seriously wrong lungwise it still took almost a year to

get a diagnosis. had several years of needing frequent IV anbtibiotics

before becoming more stable in the last four years.

My own health issues have been under serious review over the last 4+ years, I

was diagnosed with Lupus in 1995 following a still birth, but it was a fairly

stable situation apart form during and in the months following my pregnancies,

Then in January 2007 I started in a serious flare that has just flared and

flared. I was diagnosed in my late teens with bronchiectasis and again apart

form being prone to developing a chest infection whenever anyone else just had a

cold it has not been too troublesome, the constant cough is just a way of life a

nuisance at times but nothing more.

It is only because my Lupus cannot be brought under control and I am now

suspected of having Rheumatoid Arthritis on top of the Lupus that the need for

greater levels of immunosuppressants has arisen. To be honest I am not totally

convinced by the RA diagnosis but it was the specialist immunologist that

suggested that I was investigated for the extent of my lung disease before

deciding on the treatment for my lupus/RA.

My confusion now is over the decision of my Rheumatologist locally to go ahead

with the Anti TNF when the CT scan has shown no evidence of Bronch but evidence

of Emphysema.

Is there any less risk of infection with Emphysema than with bronch? Considering

I do get chest infections nearly every time I get a cold I would have thought

the infection risk was still fairly high?

Is there anyone on the Bronch group who has RA too? What treatments are you on?

Hugs

[Guest guest]

hi 'tdlhillier',

sorry you have such a mixed bag of conflicting conditions to deal

with - bronch on it's own carries enough in its own package...

I can't answer to much about RA or Lupus except to say that any '-

itis' is common with bronch, altho I believe osteoarthritis is more

common.

Could you ask your doc for a CT scan of lungs - that is really the

only way (that I'm aware of) to determine if bronch for sure.

Generally Emphysema doesn't have as much mucus, so not quite as prone

to infx as bronch (sheer volume of mucus is he main cause of infx in

bronch) but still more prone to infx than generally.

I was dx with widespread bronch 18 yrs old also & it certainly

affected my life a lot, having 2-3 infx every winter, losing work

from too much time off etc, hard to sustain long-term study,

anything, managed a good dose of pneumonia half-way thru Bach Ed eg.

I don't know how common it is for someone dx so young & without

intervention to not have much trouble from infx. Maybe others can

help you better on this one...

joy h

[Guest guest]

oops, should have read this one first Tina,

well, as a CT scan is the most definitive method of dx bronch/not I'd

say you don't have it. I belong to a support group on my town for

lung conditions, some are non-smoking Emphysema, one caused by RA

medications - her hands are very disfigured. As far as I know, the

cortisone would lessen the effects of the emphysema, but I'm really

straying off the areas i know best!

I'm sorry to hear your kids have lung problems too - wonder if

there's some genetic link here? I guess if one picks up an infx it's

hard to keep the others from catching it too... Does Eve have

bronch? (just the frequency of pneumonia makes me wonder...)

wish there was more I could say to help...

joy h

[Guest guest]

Joy Thank You for your response, no ther is no genetic link Rosie and

Eve are all adopted but all have complex disabilities, Eves chest issues are due

to a cobination of severe imobility, kyphoscoliosis and degeneration of the

brain stem from Leighs encephalopathy.

I spoke with Eve's respiratologist on Tuesday and asked her advice, she has

spoken to a colleague in adult resp who wants me to get a referal to him. I am

pleased I may have some answers and guidance on what to do next.

Thanks for your help.

Tina

>

> oops, should have read this one first Tina,

>

> well, as a CT scan is the most definitive method of dx bronch/not I'd

> say you don't have it. I belong to a support group on my town for

> lung conditions, some are non-smoking Emphysema, one caused by RA

> medications - her hands are very disfigured. As far as I know, the

> cortisone would lessen the effects of the emphysema, but I'm really

> straying off the areas i know best!

>

> I'm sorry to hear your kids have lung problems too - wonder if

> there's some genetic link here? I guess if one picks up an infx it's

> hard to keep the others from catching it too... Does Eve have

> bronch? (just the frequency of pneumonia makes me wonder...)

>

> wish there was more I could say to help...

>

> joy h

>

[Guest guest]

Tina, I just have to say that you sound like a wonderfully compassionate person to adopt children with such disabilities. How fortunate those kids are to have a loving mother to care for them. And, I'll bet they give you lots of love in return. It is so unfair when children cannot have a normal, fun life. Good luck and bless you.

Kay

Re: Can anyone help me here?

Joy Thank You for your response, no ther is no genetic link Rosie and Eve are all adopted but all have complex disabilities, Eves chest issues are due to a cobination of severe imobility, kyphoscoliosis and degeneration of the brain stem from Leighs encephalopathy. I spoke with Eve's respiratologist on Tuesday and asked her advice, she has spoken to a colleague in adult resp who wants me to get a referal to him. I am pleased I may have some answers and guidance on what to do next. Thanks for your help.Tina>> oops, should have read this one first Tina,> > well, as a CT scan is the most definitive method of dx bronch/not I'd > say you don't have it. I belong to a support group on my town for > lung conditions, some are non-smoking Emphysema, one caused by RA > medications - her hands are very disfigured. As far as I know, the > cortisone would lessen the effects of the emphysema, but I'm really > straying off the areas i know best!> > I'm sorry to hear your kids have lung problems too - wonder if > there's some genetic link here? I guess if one picks up an infx it's > hard to keep the others from catching it too... Does Eve have > bronch? (just the frequency of pneumonia makes me wonder...)> > wish there was more I could say to help...> > joy h>

[Guest guest]

hi Tina,

I'm so sorry to hear your children are so affected badly by health

issues, what a blessing they were adopted by a caring person such as

yourself. However, if you do have any health issues this is a first

priority, to maintain your health otherwise looking after the

children would be so much more difficult!

Please don't hesitate to ask us any respiratory related questions...

and maybe even not, as many of us have other problems that are

because of or even separate to our lung probs.

all the best,

joy h