Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Bruce, How do you know if you've got it? K IllinoisZena wrote: What Bruce says I was told by my doc that as my PF is caused by a connective tissue disease, this will also cause the PH. I was wondering how I managed to develop PH AFTER being put on the oxygen, I have had 3 echo's in the last 6 months since I've been on the O2. Now I know. The important thing with the echo is that they check out your right heart. Most heart problems occur in your left heart. This is the side that pumps the blood round the rest of your body. PH is very rare and my doc has to specifically say check for right heart failure as most of the echo techs are used to checking the left heart. There are a few external symptoms that you can look out for, and these include swelling of the ankles and arrythmia (feels like your hearts fluttering) The less helpful ones to look out for, considering we have PF are breathlessness and chest pains Mine was found after an echo I had as part of a tx evaluation. I feel no obvious symptoms, so I agree with Bruce that an echo should be done on us fairly regularly. Not everyone with PF will go on to develop PH, but it is something we need to be aware of. Love Ze xx> > > > >> > > > > I am new to the this forum and have never posted before. I am> > > > hoping> > > > > to see if my issues sound familiar and if others are> experiencing> > > > > what I am. I apologize up front for the coming long post.> > > > >> > > > > 14 years ago (I know its been a long time) I was diagnosed as> > > > having> > > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't> > > > > diagnosed until I was in the terminal stages with all my organs> > > > > failing. I spent a month on life support and had many many bad> > > > > things happen including a stroke, ARDS, septic shock, etc.. The> > > > list> > > > > is long.> > > > >> > > > > Somehow I experienced a miracle and survived this ordeal. Went> > > > thru> > > > > a traditional regiment of CHOP + Bleomycin for several rounds. I> > > > > went into complete remission after my 5th round.> > > > >> > > > > A year after this I was told that I had to have a Bone Marrow> > > > > Transplant to prevent my kind of lymphoma from coming back. So I> > > > > went ahead with this. Part of my treatment was total body> > > > > irradiation (TBI).> > > > >> > > > > So since then I have led a very normal life except for a couple> > > of> > > > > things. I don't have the long capacity that I used to and I have> > > > > this incredible recurring cough.> > > > >> > > > > I was diagnosed about 7 year ago as having moderate restrictive> > > > lung> > > > > disease. Not a lot was done then. Given what I had gone through> > > I> > > > > didn't pay much attention to this.> > > > >> > > > > The problems that I have is that A) when doing anything aerobic> I> > > > run> > > > > out of air fairly quickly. Cycling is a huge sport where I live> > > > and> > > > > I have tried to ride at lunch with the semi-serious group. I can> > > > > keep up well for 4-5 miles but I simply run out of air. I have> > > > come> > > > > to live with this and move on at my own pace. The more annoying> > > > > problem is this cough. I get this recurring dry cough that can> > > > last> > > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right> > > now.> > > > I> > > > > went to my doc at the beginning of this cycle to get the usual> > > > > narcotic cough syrup. I have since run out. I didn't sleep at> > > all> > > > > last night and right now doesn't look promising for tonight.> > > > >> > > > > I am so sick of this cycle that I can scream. I hate the normal> > > > > routine of cough syrup but hate the lack of sleep even more. It> > > > > seems like I cough hard every 30 seconds or so. I get> > > > > embarrassed going to the doc when this cycle starts. Seems like> > > > with> > > > > all the prescription abuse going on they seem to think anyone> who> > > > > shows up as often as I do must have a problem. I am epecially> > > > > annoyed with my current internal doc as I had to direct him to> do> > > > > some additional pulmonary testing to confirm that something> > > wasn't> > > > > right.> > > > >> > > > > If only they knew how much I HATE this cycle. It hurts all> > > aspects> > > > of> > > > > my life. I simply am sick of coughing.> > > > >> > > > > I know that many people here are fighing much worse issues than> I> > > > > am. I wish them the best.> > > > >> > > > > > > > > >> > > >> > >> >> >> >> >> >> >> > K> > Central Il> > Hubby ipf- 2006> > As for me and my house, we will serve the Lord> > 14> >> >> > ---------------------------------> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try> it now.> >> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 K Only sure way to know is catheter. However, echocardiogram can give good indication of likelihood, meaning it can tell you generally that you need to get checked further. But, once you are determined to have it they'll monitor through periodic catheter. It seems the popular thing is for pulmonologists to do CT's every six months and for you to get echocardiograms every year or two for PF'ers. However, I feel it should be the other way around. The CT isn't going to tell you anything you don't know in reality. The echocardiogram may save your life. As someone else mentioned the two key areas are your pulmonary artery and the right side of your heart. Again, this fits with my philosophy that I'm going to do everything I can for the rest of my body so that nothing else does go before my lungs. > > > > > > > > > > > > I am new to the this forum and have never posted before. I am > > > > > hoping > > > > > > to see if my issues sound familiar and if others are > > experiencing > > > > > > what I am. I apologize up front for the coming long post. > > > > > > > > > > > > 14 years ago (I know its been a long time) I was diagnosed as > > > > > having > > > > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > > > > > > diagnosed until I was in the terminal stages with all my organs > > > > > > failing. I spent a month on life support and had many many bad > > > > > > things happen including a stroke, ARDS, septic shock, etc.. The > > > > > list > > > > > > is long. > > > > > > > > > > > > Somehow I experienced a miracle and survived this ordeal. Went > > > > > thru > > > > > > a traditional regiment of CHOP + Bleomycin for several rounds. I > > > > > > went into complete remission after my 5th round. > > > > > > > > > > > > A year after this I was told that I had to have a Bone Marrow > > > > > > Transplant to prevent my kind of lymphoma from coming back. So I > > > > > > went ahead with this. Part of my treatment was total body > > > > > > irradiation (TBI). > > > > > > > > > > > > So since then I have led a very normal life except for a couple > > > > of > > > > > > things. I don't have the long capacity that I used to and I have > > > > > > this incredible recurring cough. > > > > > > > > > > > > I was diagnosed about 7 year ago as having moderate restrictive > > > > > lung > > > > > > disease. Not a lot was done then. Given what I had gone through > > > > I > > > > > > didn't pay much attention to this. > > > > > > > > > > > > The problems that I have is that A) when doing anything aerobic > > I > > > > > run > > > > > > out of air fairly quickly. Cycling is a huge sport where I live > > > > > and > > > > > > I have tried to ride at lunch with the semi-serious group. I can > > > > > > keep up well for 4-5 miles but I simply run out of air. I have > > > > > come > > > > > > to live with this and move on at my own pace. The more annoying > > > > > > problem is this cough. I get this recurring dry cough that can > > > > > last > > > > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right > > > > now. > > > > > I > > > > > > went to my doc at the beginning of this cycle to get the usual > > > > > > narcotic cough syrup. I have since run out. I didn't sleep at > > > > all > > > > > > last night and right now doesn't look promising for tonight. > > > > > > > > > > > > I am so sick of this cycle that I can scream. I hate the normal > > > > > > routine of cough syrup but hate the lack of sleep even more. It > > > > > > seems like I cough hard every 30 seconds or so. I get > > > > > > embarrassed going to the doc when this cycle starts. Seems like > > > > > with > > > > > > all the prescription abuse going on they seem to think anyone > > who > > > > > > shows up as often as I do must have a problem. I am epecially > > > > > > annoyed with my current internal doc as I had to direct him to > > do > > > > > > some additional pulmonary testing to confirm that something > > > > wasn't > > > > > > right. > > > > > > > > > > > > If only they knew how much I HATE this cycle. It hurts all > > > > aspects > > > > > of > > > > > > my life. I simply am sick of coughing. > > > > > > > > > > > > I know that many people here are fighing much worse issues than > > I > > > > > > am. I wish them the best. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > K > > > Central Il > > > Hubby ipf- 2006 > > > As for me and my house, we will serve the Lord > > > 14 > > > > > > > > > --------------------------------- > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try > > it now. > > > > > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.