Lately sort of diagnosed - travel to USA?

June 21, 2009

Hi,

I was diagnosed with Pulmonary Fibrosis about a month ago here in Helsinki

Finland. I went to another Doctor for a second opinion, after looking at the

x-rays he said no my problem was my continuing COPD and scarring. I also was

shopping around for a biopsy

Then my regular lung Doctor contacted him she emailed me this:

====================

I phoned professor T***** yesterday and he said he did not look at the lab.

results, especially results of bronchoalveolar lavage. His advice was to

continue with Prednisolon and measure diffusion capasity to see what the results

are. I agree with him, and there are major problems getting the biopsy done

adequately and analyzed adequately in the private practice in Finland. There are

risks in the biopsy, and if it not made in a hospital where it is not normally

performed more risks are taken. After considering all the results and discussion

with prof. T***** , I recommend that you contiune Prednisolon 20 mg daily. The

diffusion capasity was so low, that treatment is needed - unfortunately I cannot

guarantee that this treatment is efficient - and only time will tell if it works

or not. The ground glass opacities were not extensive and there is also a l to

be honest, we have no good possibilities to get the lung biopsy done. You are

not able to fly at least not - yet due to low oxygen level in your blood. The

treatment given so far probably causes difficulties in interpreting the biopsy -

the biopsy may even be worth nothing. Lets not take the risks of the biopsy.

============================

I have been thinking of flying to the USA to look for a better diagnosis and

treatment. I am an American age 65 with Medicare parts A and B plus Blue Cross.

I have an older pickup (and houseboat) in LaCrosse Wisconsin so I thought after

looking at the IPFnet list Mayo Clinic. Before I saw that list I was considering

Hopkins because I have a friend to stay with a couple of hours a day.

My symptoms are shortness of breath after any exertion, though sitting or laying

still I'm almost normal.

Thanks,

Mike

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