Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 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...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Miranda, I don't know of anyone here with transplant long enough to know. Most here are just dealing with this disease orwaiting for Tx. Best of everything for you. Take care of you. There aren't any stupid questions. Sometimes just no answers.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 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...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Miranda, Sorry noone answered yet, I know nothing about it but, sometimes people are out or busy and don't get to the board every day, patience will pay off keep watching and reading and I am someone more knoledgable than me will reply. Hope its positive because I noticed my Nails seem to have more of a curve in them. Maybe its the start or maybe they were always that way and im just getting paranoid. Bob IPF 1/09 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...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Miranda... it happens sometimes that a post gets overlooked or we think someone else will answer... I don't think clubbing goes away. I don't know about transplant. You did the right thing, come back and shake the 'family tree'. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Clubbing 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...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Beth You say his blood gas so I'm assuming you're referring to the results of an ABG? Is it one or multiple tests they've done that so decreases? How is his oxygen requirement, if he's on oxygen? How is his saturation doing per an oximeter? Are his PFT's also worsening? The reason for all those questions is that ABG's, like most tests, can give poor readings. They're very dependent on those administering them. So, trends and other confirming information should either verify or refute. Certainly for PH, he does need the catheter. Also, I would hope he's had a VQ to check for any possibility of blood clots. Maybe even a Cardiac MRI after the catheter would be appropriate. While PH is bad news, the good news about it is that there are meds to treat it and they are often effective, especially in the early stages. Thanks for the clubbing answer. It makes sense that reversing a physical circumstance like clubbing wouldn't happen, but I don't put anything beyond the human body. Lucky you, meeting Joyce. She's one of National Jewish's official cheerleaders now. Funny, I was talking to a doctor today about them and thought of her and others here who have had such good treatment there. > > > > 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. > > ~Beth > Husband Kane, age 68, IPF dx 2006 > Tucson, Arizona > Multiple chemical insults to lungs over his lifetime, mostly occupational > Quote Link to comment Share on other sites More sharing options...
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