Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Beth and .... thanks for posting to our group. I can relate to . I don't seem to have much progression (I was dx Mar 2006) but with exertion have difficulty with breathing. This is getting worse. You both are in a good place on this b oard. Welcome. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Clubbing Hi, I am married to a PF patient but was allowed to join this group because he won't join any online support group, and I want to gain and share info for him here. But I have not been sharing lately -- sorry about that, very strapped for time. He () and I went to Denver's National Jewish Health center in Sept., and I specifically asked Dr. Fernandez if clubbing can reverse, and he said unequivocally, no, it cannot. was diagnosed with IPF in 2006, which was confirmed after he got a lot worse and had an open lung biopsy done in May of this year. His doctor said he wanted to go to NJH for a second opinion. We were there for 4 days, and like everyone says, they were wonderful. They did loads of tests and came up with good news and bad news. The good news is that his fibrosis seems to have stabilized (based on comparisons of high resolution CT scans); Dr. Fernandez said the scarring is not progressing. Therefore, his is not a classical case of IPF. The bad news is that in spite of this, his ability to convey oxygen to his blood is getting much, much worse. The doctor is mystified by this and wants to do more tests. It is possible there is pulmonary hypertension, but none of their tests were able to confirm this. Next thing is to get a right-heart catheterization to measure the pressure in the right side of the heart. This factor scares the hell out of me (not the catheterization, he's had several of those -- the decreasing blood-gas results). While we were at NJH, we met someone from this group who was also there for an appt. -- Joyce Rudy. That was wonderful! We went to dinner together. Thanks for all your support, everyone -- we have learned so much here! You all know so much more than many so-called pulmonologists in this country.~BethHusband Kane, age 68, IPF dx 2006Tucson, ArizonaMultiple chemical insults to lungs over his lifetime, mostly occupational Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Miranda you have an excellent question have you joined the lung transplant support group that leanne has maybe someone on that site who has already has a transplant can answer you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: ClubbingTo: Breathe-Support Date: Tuesday, October 6, 2009, 11:10 AM Ok so no one answered me....Does no one Know ? Or is it just a stupid question ? Its a serious problem for me. My clubbing is real bad. I have asked the doctors and they dont really give me a straight answer. I was just wondering if anyone here had any input. Thanks.>> Hi Group,> > Can anyone tell me, does clubbing on your fingers go away or get better after transplant ? Mine is real bad and I hope to have the transplant soon. Just wondering... .> > Thanks.> Miranda> LA/28yrs old> IPF 05> Quote Link to comment Share on other sites More sharing options...
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