Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Bruce, You know, you have made me think about how I have gotten into such a mess so fast. I have to take some responsibility for that. When I brought up the suggestion to my regular pulmonologist that it might be PAH, he thought that because I had been totally free from any sign of it during my heart cath 18 months before, that it was not a possibility. I should have insisted on an echo. I just trusted his judgement.....too much. My cardiologist (2 of them) just blew me off. I will not be seeing either of them again. This vicious disease of Pulmonary Fibrosis is so different for each of us that it must be mind boggling to treat. I know it boggles my mind. I was well enough, even in end stage, to walk 30 min. (slowly) on the dreadmill in July. By Christmas could barely get through my house. Now I am nearly bedfast! I should have been tested for PAH regardless of the negative test last year. I had all the symptoms. It moved really fast. I don't think that is normal. I agree with you. If there is anyway that your doc can get ins to pay or if you can pay.....check for PAH with an echo every six months. It is so common to PF, I think it should be part of the routine testing that we do. Wish I could step back a year and do some things differently. By my own experience, I would ask for echo testing regularly. Especially if you are having plummeting saturations upon exertion. No do over's unfortunatly. So, we just face that old enemy with the attitude that if it is going to get me, it is going to be one heck of a fight. I want to live. I will do whatever is necessary, including this treatment that I am doing (which is a giant pain in the hinney). Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > >> > > > At this point getting regular echocardiograms becomes more> critical> > > > than CT's for most of us. The progression of the PF is easily> known> > > > from the sats, oxygen requirements and PFT's. However, PAH really> > > needs> > > > to be watched for and at the first time there is an indication its> > > > appropriate a check by catheter. Also, serves as one more reminder> > of> > > > how critical to watch oxygen levels.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Joyce, I agree on the fight. I have promised my wife I will fight my last breath against this dreaded disease. I don't feel very many people understand it unless you have it. I truly did not know what ir was when the Dr. told me what i had. My wife even argued that it was not a terminal disease. I printed off several pages from several web sites until she agreed i have a tiger by the tail. Joe -- Re: pulmonary hypertension Bruce, You know, you have made me think about how I have gotten into such a mess so fast. I have to take some responsibility for that. When I brought up the suggestion to my regular pulmonologist that it might be PAH, he thought that because I had been totally free from any sign of it during my heart cath 18 months before, that it was not a possibility. I should have insisted on an echo. I just trusted his judgement.....too much. My cardiologist (2 of them) just blew me off. I will not be seeing either of them again. This vicious disease of Pulmonary Fibrosis is so different for each of us that it must be mind boggling to treat. I know it boggles my mind. I was well enough, even in end stage, to walk 30 min. (slowly) on the dreadmill in July. By Christmas could barely get through my house. Now I am nearly bedfast! I should have been tested for PAH regardless of the negative test last year. I had all the symptoms. It moved really fast. I don't think that is normal. I agree with you. If there is anyway that your doc can get ins to pay or if you can pay.....check for PAH with an echo every six months. It is so common to PF, I think it should be part of the routine testing that we do. Wish I could step back a year and do some things differently. By my own experience, I would ask for echo testing regularly. Especially if you are having plummeting saturations upon exertion. No do over's unfortunatly. So, we just face that old enemy with the attitude that if it is going to get me, it is going to be one heck of a fight. I want to live. I will do whatever is necessary, including this treatment that I am doing (which is a giant pain in the hinney). Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > >> > > > At this point getting regular echocardiograms becomes more> critical> > > > than CT's for most of us. The progression of the PF is easily> known> > > > from the sats, oxygen requirements and PFT's. However, PAH really> > > needs> > > > to be watched for and at the first time there is an indication its> > > > appropriate a check by catheter. Also, serves as one more reminder> > of> > > > how critical to watch oxygen levels.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Well, we never know what might have been different " if " on so many things. We can always look back and second guess and certainly thats not something I wanted to cause you to do. On the other hand we can learn from what others have experienced and, while I hate that you've been through the level of PAH, that certainly should serve as a warning to all of us. We all were conditioned to go to the doctor, he'd diagnose, he'd tell us what to do, we'd do it, and that was it. Unfortunately, most of us have learned with this disease thats not the way we can do things. I'm sure many doctors would be appalled hearing us tell people to get copies of all their charts and tests. However, every day I know more that importance and realize I should have done that earlier. I have one of the strangest reasons I guess that I'm not angry that I wasn't diagnosed the year or eighteen months earlier at least that I should have been. At that time, I probably could not have handled it emotionally. So, its like God was looking out for me by having my doctors ignore the signs. I still see your strength, your faith, your will to live, your love of others, every day. I'm inspired in the most positive ways. Meanwhile I consider myself warned about PAH. > > > > > > > > > > At this point getting regular echocardiograms becomes more > > critical > > > > > than CT's for most of us. The progression of the PF is easily > > known > > > > > from the sats, oxygen requirements and PFT's. However, PAH > really > > > > needs > > > > > to be watched for and at the first time there is an indication > its > > > > > appropriate a check by catheter. Also, serves as one more > reminder > > > of > > > > > how critical to watch oxygen levels. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Bruce...if it hits again I will call my regular doc right away. Thanks for your concern for me when you have your own concerns! Joy > > > > > > > > > > > > > > At this point getting regular echocardiograms becomes more > > > > critical > > > > > > > than CT's for most of us. The progression of the PF is > easily > > > > known > > > > > > > from the sats, oxygen requirements and PFT's. However, PAH > > > really > > > > > > needs > > > > > > > to be watched for and at the first time there is an > indication > > > its > > > > > > > appropriate a check by catheter. Also, serves as one more > > > reminder > > > > > of > > > > > > > how critical to watch oxygen levels. > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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.