Re: Re: Janet about lung transplants

[Guest guest]

My doctor said bronchiectasis does not go away because it is an anatomical

change in the lungs.

Marsha

[Guest guest]

Dear Janet,

Our medical system in Canada is really not the

wonderful system it once was in the 1980s and early

1990s (Hoping, one day it will be better once again)

.... before all the cutbacks to medical schools,

schools of nursing, hospital bed reductions and

closing of hospitals, etc. Decisions taken on by the

government even though many health care professionals

and the public were opposed. I find the system is

covering fewer things as time goes on (This is

unfortunate, as many with lower incomes are caught in

the middle.) and even portable 02 is not covered and

must be paid out of pocket unless one is fortunate

enough to have insurance. Although, some people are

fortunate to receive excellent care at least mine has

been a nightmare for my family and me.

I was recently admitted to hospital after being sent

there by my GP. My father had to argue with the ER

doctor just to get me admitted. Our hospital was under

a code purple (meaning no available hospital beds, so

people are often being kicked out too soon to make

room for the next patient). I was running high 103 +

temperatures, had low 02 levels, etc and the ER doctor

was going to send me home with out the benefit of IV

or any antibiotics (none) and this would have been a

bad move. This after my family doctor had spoken to

one of the ER doctors who did not apparently inform

the other doctor. There were I guess no notes taken

about my GPs call, and my family doctor was angry when

he found out that the ER ignored him. The ER doctor

never even ordered a chest x-ray, and in general

quality of care has been some of the worst its ever

been including having to fight to get chestphysio. A

radiologist had to see me on Friday because my

port-a-cath was not working properly. It had grown a

fibrin sheath essentially a membrane that interferes

with the working of the port-a-cath. It has since been

removed, but radiologist noticed my lungs looked

poorly, as he was assessing the fibrin sheath. He

ordered the actual chest x-ray.

Rarely saw a physiotherapist during this recent

hospital stay, which annoyed me greatly, as

chestphysio as so helpful.

I'm currently, not be followed by respiratory

specialist, because he was never ordering PFTs, etc

..... He was well paid by our government, but did

nothing. Have heard from some of his other former

patients that they were equally displeased. Other lung

specialists in Nova Scotia refuse to see me. In the

past, they thought I was faking my CF/bronchiectasis,

so they will not treat me. I have been blackballed

because my lungs have never followed the usual course

medical students learn about in medical school and

from textbooks. Fortunately, a wonderful and kind

infectious disease specialist is following me. He has

a background in treating CF and bronchiectasis, and

has worked with patients in the CF clinic. He works

with my family doctor to treat my infections. I have

had various GPs, because one moved away and another

left family practice to pursue emergency medicine

another was not doing to trick. Was fortunate to find

a new GP to take on my care. He is a wonderful doctor.

As for lung transplant, ... Canada only has 5 centres.

Toronto has already turned me done. Montreal never

gave me a chance and did not do a lung transplant

evaluation. Hoping to relocate to Alberta after

Christmas. Edmonton has an excellent transplant centre

and I have heard there is also a good cystic fibrosis

team. I am hoping to be followed by the adult CF

doctor. I have made four trips to Toronto without

success. Travelling back and forth is a significant

expense. Frustrating when specialists “promise” to

provide follow up and than turn around and change

their mind once I am back in Nova Scotia. Anyhow, its

not easy finding good care, and we must fight for it

tooth and nail. Our lives are worth fighting for and

I’m not ready to give up on transplant. Will keep

pushing until another door opens.

Hugs:0)

Liz

e-mail:maryholt12@... or lungsformary@...

Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

carepages.com name:maryelizabethholt

) " Miracles happen with love..... " ..... Please support your local children's

hospital.... and " Give with all your might! "

http://iwkfoundation.org/

)Visit.... Children's Miracle Network.... http://www.cmn.org/ )

" I don't give in, I don't give up, and I don't take no for an answer. "

~Doris ~

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[Guest guest]

Liz..can you tell me what med you're infused with and why?

Being A1ATD, I'm infused weekly with Prolastin.

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up