Slow process...

[Guest guest]

Hi There,

I have not been in touch much lately. We are still

working towards a lung transplant. This is a slow

process. My family doctor did order the pre-transplant

blood work last week. Finally received an appointment

with him after waiting to get in for about a month. He

has a large practice and it is very difficult to get

in. I wrote several letters to him about getting going

on the transplant tests and it worked. YAY!

Had a follow up appointment with thoracic surgeon

yesterday that was a big waste of time. He never

actually went over the actual biopsy report with me

and I had gone so far to bring my own copy. In

January, he said that my chest CTs looked terrible. He

wondered why I was not yet listed for lungs give low

PFTs and progressively worsening CT scans. Well,

yesterday he took a 180-degree turn and tried to say

that my lungs were not so bad after all. He briefly

looked at one of the CT-scans for maybe two quick

minutes. I am just throwing my hands up in the air. He

did not believe that my FEV1 could be so low. It is

26% and FVC 27%. He said, well you have something

funny happening to your lungs. D-oh! Other doctors

have told me that a VATS biopsy only looks at a small

portion of the lung and it is generally the outside.

He did not explain why my lungs have so much fibrosis.

I also found the first letter from the lung transplant

respirologist in Toronto. As far, back, as July 2000

ad significant fibrosis, ground-glass opacities, and

atelectasis. Lungs also had regular bronchiectasis.

Most prominent are the fibrosis and ground-glass

opacities. In July 2000, a Toronto General radiologist

wrote on the report that this could be due to

idiopathic pulmonary fibrosis or collagen vascular

disease, because my pulmonary artery was also

dominant. Interestingly, the pulmonary artery was also

enlarged according to the biopsy. Both of the above

noted diseases can be quite serious and yet none of

the repirologists are really watching them closely and

none have referred me to someone with more expertise

in these diseases. Really quite disgusted with this

medical situation and the run around. To top it off

frequent infections and possible atypical CF or

CF-like illness according to the specialist who also

can not agree upon this is a factor. ARGH! Anyhow, I

am hoping to have time to speak with my GP about all

this and perhaps may need another appointment. My

lungs are not being taken seriously and each CT-scan

shows increasing damage, but because know one knows

what to do they are not doing anything. GP is upset

with the specialists, because they are not even trying

to get a treatment plan together likely because they

are not providing the necessary follow up care.

Honestly, I do not know what we would do without Dr.

Haase, my infectious disease specialist. He is

the best and only specialist that seems to care.

The good news coming out of all this is that many

people are on my side. Even my dentist is upset. He

says that he had hoped that I had been accepted to the

transplant list and one day wants to see me walk in

minus the 02 tank. Mom and Dad’s church minister said

it is maddening. I hope that this support will carry

through in the fund-raising process. If the Boston

Hospital will just say, yes one problem is solved.

than the fund-raising gets underway. Does anyone have

experience with planning fund-raising campaigns?

Obviously will need some key people in charge who are

great with organising these events. Have no idea were

to even began. Whenever, I have volunteered for a

fund-raiser the legwork has always been done. This

will be a crash course in fund-raising 101. I wish

that I just had alkl the funds to pay the hospital

bills myself. Will approach the Nobva Scotia

government, but I trhink they will say that lung

transplants can be done in Canada, so probably will

not fully fund the care. Reality is that transplnts

can be done in Canada, but if one cannot get listed

here your hands are tied.

Thanks in advance for letting me vent and for any

suggestions about getting people together. Family and

friends do want to help. It's getting organised that's

the problem. Who does what? We need someone in charge.

Hugs:0)

) " 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/ )

The Child Health Site: http://www.thechildhealthsite.com/

Care2's Race for Children in Need: http://children.care2.com/

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca