Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 Hi Sunny, I'm sorry your swelling hasn't gone down. It sometimes takes a few days for diuretics like furosemide to start working. Be sure in the mean time try to only drink when you are thirsty and stay away from salt, sodium, and sodas as much as possible. Being the doctor feels it is heart related it is very important to take it seriously. When you retain fluids this way it can be very rough on your heart. And the swelling ain't fun. I've had swelling like this many times and haven't been diagnosed with an auto immune disease as of yet.The drug he prescribed is a diuretic commonly used to treat " congestive heart failure. " There are many other things that could have caused the swelling but anytime you are retaining fluid like this it usually leads back to the heart whether it be the cause of fluid retention or the result of the fluid retention. Sometime if I get so swollen that I'm in pain I will get my O2 and walk on the treadmill to work up a sweat. It actually worked for me. Keep in mind that although you've been on prednisone for a while with little negative side effects it is possible to develope them long after starting the medication. Also, keep in mind your body went through quite an ordeal when you were without prednisone last weekend. I don't mean to scare you but, as to PF being a slowly progressive disease: It truely depends on the patient. I do pray you have a slow progression. There are some of us whom experience much faster progression than others. About Your Heart: Our heart and lungs work together to deliver oxygen to our blood and on to our other organs. When our lungs are scarred like this the right side of our heart works harder and faster to make up for the work our lungs are unable to do. It is never " too early " for the heart to be effected by PF. This is why it is so important for us to use our oxygen and medcications as they are prescribed. By keeping our O2 saturation up helps to take some of the burden off our lungs and our heart. I'll keep you in my prayers! 33 FL IPF dx 1/06 > > Good day to everyone in my " Air Family " , > > I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts. > Sunny PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN " 09, Idaho > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2009 Report Share Posted May 16, 2009 Hi Sunny, I'm sorry your swelling hasn't gone down. It sometimes takes a few days for diuretics like furosemide to start working. Be sure in the mean time try to only drink when you are thirsty and stay away from salt, sodium, and sodas as much as possible. Being the doctor feels it is heart related it is very important to take it seriously. When you retain fluids this way it can be very rough on your heart. And the swelling ain't fun. I've had swelling like this many times and haven't been diagnosed with an auto immune disease as of yet.The drug he prescribed is a diuretic commonly used to treat " congestive heart failure. " There are many other things that could have caused the swelling but anytime you are retaining fluid like this it usually leads back to the heart whether it be the cause of fluid retention or the result of the fluid retention. Sometime if I get so swollen that I'm in pain I will get my O2 and walk on the treadmill to work up a sweat. It actually worked for me. Keep in mind that although you've been on prednisone for a while with little negative side effects it is possible to develope them long after starting the medication. Also, keep in mind your body went through quite an ordeal when you were without prednisone last weekend. I don't mean to scare you but, as to PF being a slowly progressive disease: It truely depends on the patient. I do pray you have a slow progression. There are some of us whom experience much faster progression than others. About Your Heart: Our heart and lungs work together to deliver oxygen to our blood and on to our other organs. When our lungs are scarred like this the right side of our heart works harder and faster to make up for the work our lungs are unable to do. It is never " too early " for the heart to be effected by PF. This is why it is so important for us to use our oxygen and medcications as they are prescribed. By keeping our O2 saturation up helps to take some of the burden off our lungs and our heart. I'll keep you in my prayers! 33 FL IPF dx 1/06 > > Good day to everyone in my " Air Family " , > > I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts. > Sunny PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN " 09, Idaho > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Sunny, I understand your frustration and most certainly your fear. You are having so much thrown at you at one time and just can't process it all. The sweating is your body's way of getting rid of all this fluid that has built up in your system. There were times when I was going through it that I showered sometimes 3 times a day. My fingers still look like sausages. I'm 33 and my feet are wrinkled beyond belief from how swollen I used to get. There were days I couldn't bare to walk from all the pain. I remember giving up my Diet Coke. You would have thought I lost my best friend. I started drinking Diet Right sodas. They certainly aren't Diet Coke or Dr. Pepper but they do help with the cravings with out the caffine and sodium. Honey, I know all these changes suck. You probably wonder 100 times a day how you're going to make it through all the stress and chaos. It seems like the moment you feel you can't take another blow you get hit with yet another. I finally had to ask for an anti-depressant. I had hit rock bottom and couldn't control the crying and mood changes or anything else for that matter. When I wanted to understand the labwork or other tests being ran I went to Google and searched " blood work " and the code used on the form. Dont feel bad for having waited to do the blood work. I used to have to go once a week and sometimes I would wait an extra day or so just because I couldn't bare to hurt anymore than I was in even the smallest of ways. And Sunny, just know it's perfectly natural to be scared and even pissed off right now. We all do at some point. 33 FL IPF dx 1/06 > > > > Good day to everyone in my " Air Family " , > > > > I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts. > > Sunny PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN " 09, Idaho > > > > > > > > > B > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Sunny the swollen feet might not have anything to do with pulmonary fibrosis it might be a completely different disease causing the edema Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Fat feet and handsTo: Breathe-Support Date: Saturday, May 16, 2009, 6:44 PM Good day to everyone in my "Air Family", I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts. Sunny PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 very well said excellent explanation thank you Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Fat feet and handsTo: Breathe-Support Date: Saturday, May 16, 2009, 9:42 PM Hi Sunny,I'm sorry your swelling hasn't gone down. It sometimes takes a few days for diuretics like furosemide to start working. Be sure in the mean time try to only drink when you are thirsty and stay away from salt, sodium, and sodas as much as possible. Being the doctor feels it is heart related it is very important to take it seriously. When you retain fluids this way it can be very rough on your heart. And the swelling ain't fun. I've had swelling like this many times and haven't been diagnosed with an auto immune disease as of yet.The drug he prescribed is a diuretic commonly used to treat "congestive heart failure." There are many other things that could have caused the swelling but anytime you are retaining fluid like this it usually leads back to the heart whether it be the cause of fluid retention or the result of the fluid retention. Sometime if I get so swollen that I'm in pain I will get my O2 and walk on the treadmill to work up a sweat. It actually worked for me. Keep in mind that although you've been on prednisone for a while with little negative side effects it is possible to develope them long after starting the medication. Also, keep in mind your body went through quite an ordeal when you were without prednisone last weekend. I don't mean to scare you but, as to PF being a slowly progressive disease: It truely depends on the patient. I do pray you have a slow progression. There are some of us whom experience much faster progression than others. About Your Heart: Our heart and lungs work together to deliver oxygen to our blood and on to our other organs. When our lungs are scarred like this the right side of our heart works harder and faster to make up for the work our lungs are unable to do. It is never "too early" for the heart to be effected by PF. This is why it is so important for us to use our oxygen and medcications as they are prescribed. By keeping our O2 saturation up helps to take some of the burden off our lungs and our heart. I'll keep you in my prayers! 33 FLIPF dx 1/06>> Good day to everyone in my "Air Family",> > I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts.> Sunny PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 , I am sitting here bawling like a baby. I feel like someone understands exactly how I feel and doesn't think I'm stupid, a coward or anything. You understand! Everything you said is so true. Thank you, Thank you, God Bless you. Sunny PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Idaho From: hunnybunnybinky Sent: Monday, May 18, 2009 6:51 AM To: Breathe-Support Subject: Re: Fat feet and hands Sunny, I understand your frustration and most certainly your fear. You are having so much thrown at you at one time and just can't process it all. The sweating is your body's way of getting rid of all this fluid that has built up in your system. There were times when I was going through it that I showered sometimes 3 times a day. My fingers still look like sausages. I'm 33 and my feet are wrinkled beyond belief from how swollen I used to get. There were days I couldn't bare to walk from all the pain.I remember giving up my Diet Coke. You would have thought I lost my best friend. I started drinking Diet Right sodas. They certainly aren't Diet Coke or Dr. Pepper but they do help with the cravings with out the caffine and sodium. Honey, I know all these changes suck. You probably wonder 100 times a day how you're going to make it through all the stress and chaos. It seems like the moment you feel you can't take another blow you get hit with yet another. I finally had to ask for an anti-depressant. I had hit rock bottom and couldn't control the crying and mood changes or anything else for that matter. When I wanted to understand the labwork or other tests being ran I went to Google and searched "blood work" and the code used on the form. Dont feel bad for having waited to do the blood work. I used to have to go once a week and sometimes I would wait an extra day or so just because I couldn't bare to hurt anymore than I was in even the smallest of ways.And Sunny, just know it's perfectly natural to be scared and even pissed off right now. We all do at some point. 33 FLIPF dx 1/06> >> > Good day to everyone in my "Air Family",> > > > I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts.> > Sunny PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Idaho> >> > > > > > > B> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Sunny, All that diaphoretic means is that you are sweating profusely. It's just a descriptive term, not a diagosis. So though it may sound scary and like something serious, all it means by itself is that you are sweaty. There are literally thousands of things that can cause this. From eating spicy food to having a heart attack, to exercising alot. I know I sound like a broken record but only your doctor can give you a diagnosis. The individual you spoke to gave you further symptoms to look for. Those are mostly cardiac symptoms so he/she was telling you to be aware of what to look for. Heart problems can go hand in hand with lung disease. There is no real timetable for when or if an individual will develop heart problems if they have lung disease. Some never do, sometimes they develop together. There are many factors involved and only your doctor can tell you what is happening to you and perhaps why. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, May 17, 2009 10:44:52 PMSubject: Re: Re: Fat feet and hands , to be honest this is all so scary and everything is happening so fast now. For the past two days I have had horrible sweats even when sitting still. I just suddenly start sweating profusely. My pulse hits 186 and my O2 drops below 86. The on call person at the local urgency care center said I was diaphoretic and if it continued or I felt nauseous or had chest pain arm pain or shoulder pain???? to go directly to the ER. So far it's just the disgusting sweating but I feel like I can't take one more kick right now. Am I the only one who feels that way? Having all of the different diseases that have developed over the last four years was scary enough now they are acting like my heart could go whacko because my pulse rate is so high because my heart is trying to distribute oxygen because my lungs are 60% scarred because my stomach acid is going into my lungs because, because because.... Sorry, I guess I am as cranky as a 10 month pregnant woman. That is the funny thing. I never had edema when I was pregnant with any of our kids but now my feet, ankles and hands look like cartoon figures. I keep praying for a breather. Just a few days with no new symptoms or scary news. I got it! I won't go to the doctor and he won't be able to tell be bad news!? Nuts! I know all of you are saying WHAT? I'm kidding. If I didn't spend thousands of my insurance companies dollars at specialist every week what would they do with all that money. I am having blood work done tomorrow. Doc gave it to me last week but I was scared to have it done because I didn't want any more bad news. The test is Beta Naturetic Peptide and a whole slew of other things I don't know what are like lipid, cmpa, ld , phos, ric, cbcp2,t4,t6, tsh, inw17, igec, ediol, proges, testot, dheas. I wish it wasn't all code so I would a least know what he's looking for. Hmmm, does anyone know of a web site where you can look up lab codes. If you do please let me know as I am tired of being in the dark and being a passive observer when it comes to my medical care. Yes, I do know that it can move very fast and I also know that it took 2 years for pulmo jerk to figure it out so I am sure I have had IPF for at least that amount of time. I do appreciate your suggestions and your care. If anyone has any thoughts on how I can stay healthier longer I am wide open to suggestions. But shoot, I hate giving up my Dr. Pepper. Choices: clown shoes and soda pop or regular shoes and water? I vote water. Sunny PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Idaho From: hunnybunnybinky Sent: Saturday, May 16, 2009 6:42 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Fat feet and hands Hi Sunny,I'm sorry your swelling hasn't gone down. It sometimes takes a few days for diuretics like furosemide to start working. Be sure in the mean time try to only drink when you are thirsty and stay away from salt, sodium, and sodas as much as possible. Being the doctor feels it is heart related it is very important to take it seriously. When you retain fluids this way it can be very rough on your heart. And the swelling ain't fun. I've had swelling like this many times and haven't been diagnosed with an auto immune disease as of yet.The drug he prescribed is a diuretic commonly used to treat "congestive heart failure." There are many other things that could have caused the swelling but anytime you are retaining fluid like this it usually leads back to the heart whether it be the cause of fluid retention or the result of the fluid retention. Sometime if I get so swollen that I'm in pain I will get my O2 and walk on the treadmill to work up a sweat. It actually worked for me. Keep in mind that although you've been on prednisone for a while with little negative side effects it is possible to develope them long after starting the medication. Also, keep in mind your body went through quite an ordeal when you were without prednisone last weekend. I don't mean to scare you but, as to PF being a slowly progressive disease: It truely depends on the patient. I do pray you have a slow progression. There are some of us whom experience much faster progression than others. About Your Heart: Our heart and lungs work together to deliver oxygen to our blood and on to our other organs. When our lungs are scarred like this the right side of our heart works harder and faster to make up for the work our lungs are unable to do. It is never "too early" for the heart to be effected by PF. This is why it is so important for us to use our oxygen and medcications as they are prescribed. By keeping our O2 saturation up helps to take some of the burden off our lungs and our heart. I'll keep you in my prayers! 33 FLIPF dx 1/06>> Good day to everyone in my "Air Family",> > I am finally feeling a little better now that I am back on my prednisone. The lfurosemide doesn't seem to be taking the much of the swelling out of my feet or hands but maybe it takes a while to start working. I have only been on it a few days. Primary seems pretty confident that this is heart related and didn't want to guess further than that. Wondered if any of you knew any other reason a PF person with autoimmune diseases would swell up like this. Since I was only recently diagnosed and it appears that pulmonary fibrosis is a slow moving disease I am having a hard time believing that it is already affecting the right side of my heart. Anybody, ideas, please. As always you are all in my prayers and thoughts.> Sunny PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, Barrett's Disease '08, Hyperthyroid '08, CAN "09, Idaho> B Quote Link to comment Share on other sites More sharing options...
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