Re: Lately sort of diagnosed - travel to USA?

[Guest guest]

Mike,

Welcome to the group!! I'm so sorry you had reason to come looking for a group like this but since you did I'm glad you found us.

How long have you been living in Finland? It is one of the places I've always wanted to visit. I can appreciate your difficulties in getting a firm diagnosis. If it's possible for you to fly safely to the US, it might be your best bet to get a handle on what is going on in your lungs. My only concern would be making certain you have adequate oxygenation during a long flight. I would suggest discussing this with your doctors there and contacting whatever airline you will be using to find out how much they will charge you to supply you with O2 during your flight. Domestically most major airlines in the US will supply you with O2 for a fee of $100 per flight segment. Additionally most airlines will allow you to bring a portable O2 concentrator on board but I'm thinking it might just be easier for you to arrange directly with the airline to supply you with O2 for your flight.

Mayo is an excellent facility and since you have Medicare you can be evaluated without incurring a huge expense (aside from your travel expenses of course). You will get a much clearer picture of what is happening in your lungs once they do a complete workup.

Please ask whatever questions you have and again welcome to the group.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, June 21, 2009 9:25:11 AMSubject: Lately sort of diagnosed - travel to USA?

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 biopsyThen 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

[Guest guest]

Mike... there are lots of files and info. on bios here on the board. Don't be too anxious to have a bio until you research completely. Some have little to no complications and some members have severe complications.

There is no guarantee of identifying what strain (over 200) you may have even after bio.

I opt not to have one. I'm too old to take the chance on complications and if I KNEW there still is no effective treatment. Prednisone is often used but that too has severe side effects.

Many here have had bios. There is no way of knowing how each one will tolerate the surgery.

Good luck as you do your research...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Lately sort of diagnosed - travel to USA?

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 biopsyThen 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