Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Yayyyy! Sunny! Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Monday, May 11, 2009 6:00:31 PMSubject: DUH Sunny I had a rough weekend because Wal-Mart said my doctor wouldn't refill my pred until he saw me and I had just seen him the day before. That all happened on Thursday and my doc is off on Friday. Well, all I talked to was Wal-Mart that first time on Thursday after 5pm when Rich took me to pick up the refill and they didn't have it. I had a miserable weekend with a itchy rash, vomiting, headache or more. I asked someone I trust that is a nurse and she told me that what I was experiencing was probably prednisone withdrawal and I should (drum roll) go to the ER. Went to the ER Sunday night because the symptoms worsened and new ones kicked in. Like: heart beating a zillion miles a minute, could barely walk, felt all confused, so tired I could barely stand, shills all over. I thought I was surely dying. ER doc said that I had a flu bug and he wasn't comfortable giving me prednisone if my primary didn't want to renew the prescription. They did some extensive blood work but I didn't get the results because being the stubborn fool that I am as soon as he gave me the spiel about flu and not comfortable I walked out crying. Rich was not happy with anyone at that point including me and he wanted to go to a different ER but I told him they are all computer connected so they would all say the same thing. Anyway Rich called my doctor this morning and insisted on talking to the doctor. Rich is the kind of guy who usually gets his way. He is a big quiet man but when it comes to my health he has had it up to here and let my primary have it. Told him all I had gone through over the past 4 days and how much pain I had been in. Poor doctor, he was so confused. He had indeed talked with his assistant on Thursday and told her to call in my refill and make it a 90 day supply because he didn't want me waiting until the last minute to refill then missing a dose. That conversation and her subsequent call to Wal-Mart with the order happened after he had seen his last patient, done the evening wrap up with the nurses and whatever else docs do after the patients leave and before they go home. Doctor's nurse faxed or called (can't remember what Rich said) the order to refill in Thursday evening sometime after 5pm when I was there. DUH! Why didn't I check back with Wal-Mart? I just thought that it was after 5pm so doc was gone no refill order given and I was up a creek in a leaky boat with no paddle and piranhas in the water. I just never thought they would get the order so late. I guess Rich called and gave Wal-Mart an earful too but their stance is that with thousands of refills they can not call each person even in special circumstances because there are a lot of those as well. So, now I have my prednisone back with enough for 90 days and refills for the 90 script. I won't be running out again. And miracles do happen, the doctor's office called a little while ago to see how I was doing and explained exactly what to watch for over the next 24 hours (pred doesn't kick in immediately I guess) hours that would mean ER and she had already called the ER supervisor and gave her "what for" and told them to put it in the computer that if I come in with anything even remotely related to pred withdrawal tonight to make sure whoever treats me knows exactly what is going on. I guess everyone's ears are full now! I am still very miserable but knowing that it is going to get better makes it easier to deal with. I blame my "Air Family" for it getting straightened out. You guys have given both Rich and myself the support we needed to start demanding that I get the right care when it is needed. You all ROCK! I was a big chicken when facing doctor's. They always made me feel foolish and inferior. Now, I am keeping my own records and beginning to stand up for myself. AND someone on this site evidently told that when I was really bad he should put his foot down and not let me jeopardize my life over money or anything else. Whoever you are (Sher, MB?) your words planted themselves in his heart and he has put his foot down on all my excuses and reasons for not taking things like this pred withdrawal as an ER situation. Also, he has NEVER called my doctor and let loose before. He is such a big teddy bear but you guys somehow helped him see that if I wouldn't stand up and be counted, he'd prop me up while he stood up. You cannot imagine how wonderful that makes me feel. But still, I am going to continue to become more aggressive (in the nicest possible way) and more responsible about the care of feeding of all my various illness'. So guys, it seems redundant to keep saying it but thank you and Rich says thank you too. HUGS and then pats on the back all around. Sunny, PF '09, Lupus/Sjogrens/ Arthritis '04, Chronic Aspiration Ph. '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Thank You, Thank you Sunny takes a bow but is discombobulated when her teeth fall out. I would like to thank the academy, my fans - no wait that's a different speech I wrote in my head. God is in the house, everybody say AMEN! From: Barbara McD Sent: Monday, May 11, 2009 4:08 PM To: Breathe-Support Subject: Re: DUH Sunny Yayyyy! Sunny! Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Monday, May 11, 2009 6:00:31 PMSubject: DUH Sunny I had a rough weekend because Wal-Mart said my doctor wouldn't refill my pred until he saw me and I had just seen him the day before. That all happened on Thursday and my doc is off on Friday. Well, all I talked to was Wal-Mart that first time on Thursday after 5pm when Rich took me to pick up the refill and they didn't have it. I had a miserable weekend with a itchy rash, vomiting, headache or more. I asked someone I trust that is a nurse and she told me that what I was experiencing was probably prednisone withdrawal and I should (drum roll) go to the ER. Went to the ER Sunday night because the symptoms worsened and new ones kicked in. Like: heart beating a zillion miles a minute, could barely walk, felt all confused, so tired I could barely stand, shills all over. I thought I was surely dying. ER doc said that I had a flu bug and he wasn't comfortable giving me prednisone if my primary didn't want to renew the prescription. They did some extensive blood work but I didn't get the results because being the stubborn fool that I am as soon as he gave me the spiel about flu and not comfortable I walked out crying. Rich was not happy with anyone at that point including me and he wanted to go to a different ER but I told him they are all computer connected so they would all say the same thing. Anyway Rich called my doctor this morning and insisted on talking to the doctor. Rich is the kind of guy who usually gets his way. He is a big quiet man but when it comes to my health he has had it up to here and let my primary have it. Told him all I had gone through over the past 4 days and how much pain I had been in. Poor doctor, he was so confused. He had indeed talked with his assistant on Thursday and told her to call in my refill and make it a 90 day supply because he didn't want me waiting until the last minute to refill then missing a dose. That conversation and her subsequent call to Wal-Mart with the order happened after he had seen his last patient, done the evening wrap up with the nurses and whatever else docs do after the patients leave and before they go home. Doctor's nurse faxed or called (can't remember what Rich said) the order to refill in Thursday evening sometime after 5pm when I was there. DUH! Why didn't I check back with Wal-Mart? I just thought that it was after 5pm so doc was gone no refill order given and I was up a creek in a leaky boat with no paddle and piranhas in the water. I just never thought they would get the order so late. I guess Rich called and gave Wal-Mart an earful too but their stance is that with thousands of refills they can not call each person even in special circumstances because there are a lot of those as well. So, now I have my prednisone back with enough for 90 days and refills for the 90 script. I won't be running out again. And miracles do happen, the doctor's office called a little while ago to see how I was doing and explained exactly what to watch for over the next 24 hours (pred doesn't kick in immediately I guess) hours that would mean ER and she had already called the ER supervisor and gave her "what for" and told them to put it in the computer that if I come in with anything even remotely related to pred withdrawal tonight to make sure whoever treats me knows exactly what is going on. I guess everyone's ears are full now! I am still very miserable but knowing that it is going to get better makes it easier to deal with. I blame my "Air Family" for it getting straightened out. You guys have given both Rich and myself the support we needed to start demanding that I get the right care when it is needed. You all ROCK! I was a big chicken when facing doctor's. They always made me feel foolish and inferior. Now, I am keeping my own records and beginning to stand up for myself. AND someone on this site evidently told that when I was really bad he should put his foot down and not let me jeopardize my life over money or anything else. Whoever you are (Sher, MB?) your words planted themselves in his heart and he has put his foot down on all my excuses and reasons for not taking things like this pred withdrawal as an ER situation. Also, he has NEVER called my doctor and let loose before. He is such a big teddy bear but you guys somehow helped him see that if I wouldn't stand up and be counted, he'd prop me up while he stood up. You cannot imagine how wonderful that makes me feel. But still, I am going to continue to become more aggressive (in the nicest possible way) and more responsible about the care of feeding of all my various illness'. So guys, it seems redundant to keep saying it but thank you and Rich says thank you too. HUGS and then pats on the back all around. Sunny, PF '09, Lupus/Sjogrens/ Arthritis '04, Chronic Aspiration Ph. '09, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Sunny, You are one lucky lady! I had never heard too much about pred withdrawal until I read about your experience. It is a shame that we all have to yell, scream, holler, cuss, spit, etc to get our medical needs explained to the professional world and then we try to get exactly what we need. I have had some experiences that have definitely taught me buckets of info that is now helping me. I bet that your doctor will roll out the red carpet at your next appointment. You go, girl! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> I had a rough weekend because Wal-Mart said my doctor wouldn't refill my pred until he saw me and I had just seen him the day before. That all happened on Thursday and my doc is off on Friday. Well, all I talked to was Wal-Mart that first time on Thursday after 5pm when Rich took me to pick up the refill and they didn't have it. I had a miserable weekend with a itchy rash, vomiting, headache or more. I asked someone I trust that is a nurse and she told me that what I was experiencing was probably prednisone withdrawal and I should (drum roll) go to the ER. Went to the ER Sunday night because the symptoms worsened and new ones kicked in. Like: heart beating a zillion miles a minute, could barely walk, felt all confused, so tired I could barely stand, shills all over. I thought I was surely dying. ER doc said that I had a flu bug and he wasn't comfortable giving me prednisone if my primary didn't want to renew the prescription. They did some extensive blood work but I didn't get the results because being the stubborn fool that I am as soon as he gave me the spiel about flu and not comfortable I walked out crying. Rich was not happy with anyone at that point including me and he wanted to go to a different ER but I told him they are all computer connected so they would all say the same thing. Anyway Rich called my doctor this morning and insisted on talking to the doctor. Rich is the kind of guy who usually gets his way. He is a big quiet man but when it comes to my health he has had it up to here and let my primary have it. Told him all I had gone through over the past 4 days and how much pain I had been in. Poor doctor, he was so confused. He had indeed talked with his assistant on Thursday and told her to call in my refill and make it a 90 day supply because he didn't want me waiting until the last minute to refill then missing a dose. That conversation and her subsequent call to Wal-Mart with the order happened after he had seen his last patient, done the evening wrap up with the nurses and whatever else docs do after the patients leave and before they go home. Doctor's nurse faxed or called (can't remember what Rich said) the order to refill in Thursday evening sometime after 5pm when I was there. DUH! Why didn't I check back with Wal-Mart? I just thought that it was after 5pm so doc was gone no refill order given and I was up a creek in a leaky boat with no paddle and piranhas in the water. I just never thought they would get the order so late. I guess Rich called and gave Wal-Mart an earful too but their stance is that with thousands of refills they can not call each person even in special circumstances because there are a lot of those as well. So, now I have my prednisone back with enough for 90 days and refills for the 90 script. I won't be running out again. And miracles do happen, the doctor's office called a little while ago to see how I was doing and explained exactly what to watch for over the next 24 hours (pred doesn't kick in immediately I guess) hours that would mean ER and she had already called the ER supervisor and gave her "what for" and told them to put it in the computer that if I come in with anything even remotely related to pred withdrawal tonight to make sure whoever treats me knows exactly what is going on. I guess everyone's ears are full now! I am still very miserable but knowing that it is going to get better makes it easier to deal with. I blame my "Air Family" for it getting straightened out. You guys have given both Rich and myself the support we needed to start demanding that I get the right care when it is needed. You all ROCK! I was a big chicken when facing doctor's. They always made me feel foolish and inferior. Now, I am keeping my own records and beginning to stand up for myself. AND someone on this site evidently told that when I was really bad he should put his foot down and not let me jeopardize my life over money or anything else. Whoever you are (Sher, MB?) your words planted themselves in his heart and he has put his foot down on all my excuses and reasons for not taking things like this pred withdrawal as an ER situation. Also, he has NEVER called my doctor and let loose before. He is such a big teddy bear but you guys somehow helped him see that if I wouldn't stand up and be counted, he'd prop me up while he stood up. You cannot imagine how wonderful that makes me feel. But still, I am going to continue to become more aggressive (in the nicest possible way) and more responsible about the care of feeding of all my various illness'. So guys, it seems redundant to keep saying it but thank you and Rich says thank you too. HUGS and then pats on the back all around.> > Sunny, PF '09, Lupus/Sjogrens/Arthritis '04, Chronic Aspiration Ph. '09, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@... Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Sunny, I just thought I'd mention that Furosemide (which is the generic form of Lasix) is available at Walmart in the 20, 40 and 80mg dosages at $4 for a 30 day supply and $10 for a 90 day supply. It's a very inexpensive diuretic so hopefully that helps. Please don't substitute a "cheap OTC water pill". You would be taking chances with your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 13, 2009 8:32:36 PMSubject: Re: DUH Sunny Hi Air Family - I pray that everyone is doing well today. Praying for all of you helps keep my spirits up and right now I am having to pray real hard. The doctor's visit did not go well. My blood pressure, normally 110/70 was 150/98. Doctor put me on Lasik which is probably another med I can't afford to get but I know there are cheap OTC water pills. He is concerned because my urine indicates that I am dehydrated even though I am retaining all this water. He called it edema. I have to have blood work done tomorrow and will be seeing the cardiologist. My primary was reluctant to specifically say what he thought was going on by he believes it is cardiovascular related. I know people with IPF can have heart trouble but this all seems so sudden. Can I be honest with you guys? I am sitting here shaking, crying and scared to death. I had a heart attack before or an MI but I weighed almost 445 pounds then and I smoked heavily. Now I weigh 175 and don't smoke. My heart workup in 2006 was nearly perfect. I just feel like everything is happening at once. I can't wear regular shoes instead I have to wear Rich's flip flops because of the swelling. The one good news I thought I had was that my weight loss stopped but doc thinks I weigh the same as last week because of all the water retention. I thought IPF was a slow disease and I feel like I'm spinning out of control. Well, it helps to have you guys. I don't want to fall apart with Rich because he has enough stress. Oh, just thought of some good news, kidney infection much improved so there you go a ray of sunshine on my cloudy day. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, you name it I'll get it '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 13, 2009 5:04 PM To: Breathe-Support@ yahoogroups. com Subject: Re: DUH Sunny Sunny good idea to take pictures of your legs Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 3:45 PM Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@ yahoo.com Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support@ yahoogroups. com Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Sunny, I just thought I'd mention that Furosemide (which is the generic form of Lasix) is available at Walmart in the 20, 40 and 80mg dosages at $4 for a 30 day supply and $10 for a 90 day supply. It's a very inexpensive diuretic so hopefully that helps. Please don't substitute a "cheap OTC water pill". You would be taking chances with your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 13, 2009 8:32:36 PMSubject: Re: DUH Sunny Hi Air Family - I pray that everyone is doing well today. Praying for all of you helps keep my spirits up and right now I am having to pray real hard. The doctor's visit did not go well. My blood pressure, normally 110/70 was 150/98. Doctor put me on Lasik which is probably another med I can't afford to get but I know there are cheap OTC water pills. He is concerned because my urine indicates that I am dehydrated even though I am retaining all this water. He called it edema. I have to have blood work done tomorrow and will be seeing the cardiologist. My primary was reluctant to specifically say what he thought was going on by he believes it is cardiovascular related. I know people with IPF can have heart trouble but this all seems so sudden. Can I be honest with you guys? I am sitting here shaking, crying and scared to death. I had a heart attack before or an MI but I weighed almost 445 pounds then and I smoked heavily. Now I weigh 175 and don't smoke. My heart workup in 2006 was nearly perfect. I just feel like everything is happening at once. I can't wear regular shoes instead I have to wear Rich's flip flops because of the swelling. The one good news I thought I had was that my weight loss stopped but doc thinks I weigh the same as last week because of all the water retention. I thought IPF was a slow disease and I feel like I'm spinning out of control. Well, it helps to have you guys. I don't want to fall apart with Rich because he has enough stress. Oh, just thought of some good news, kidney infection much improved so there you go a ray of sunshine on my cloudy day. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, you name it I'll get it '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 13, 2009 5:04 PM To: Breathe-Support@ yahoogroups. com Subject: Re: DUH Sunny Sunny good idea to take pictures of your legs Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 3:45 PM Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@ yahoo.com Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support@ yahoogroups. com Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 From: Beth Sent: Wednesday, May 13, 2009 5:45 PM To: Breathe-Support Subject: Re: DUH Sunny Sunny, I just thought I'd mention that Furosemide (which is the generic form of Lasix) is available at Walmart in the 20, 40 and 80mg dosages at $4 for a 30 day supply and $10 for a 90 day supply. It's a very inexpensive diuretic so hopefully that helps. Please don't substitute a "cheap OTC water pill". You would be taking chances with your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Wednesday, May 13, 2009 8:32:36 PMSubject: Re: DUH Sunny Hi Air Family - I pray that everyone is doing well today. Praying for all of you helps keep my spirits up and right now I am having to pray real hard. The doctor's visit did not go well. My blood pressure, normally 110/70 was 150/98. Doctor put me on Lasik which is probably another med I can't afford to get but I know there are cheap OTC water pills. He is concerned because my urine indicates that I am dehydrated even though I am retaining all this water. He called it edema. I have to have blood work done tomorrow and will be seeing the cardiologist. My primary was reluctant to specifically say what he thought was going on by he believes it is cardiovascular related. I know people with IPF can have heart trouble but this all seems so sudden. Can I be honest with you guys? I am sitting here shaking, crying and scared to death. I had a heart attack before or an MI but I weighed almost 445 pounds then and I smoked heavily. Now I weigh 175 and don't smoke. My heart workup in 2006 was nearly perfect. I just feel like everything is happening at once. I can't wear regular shoes instead I have to wear Rich's flip flops because of the swelling. The one good news I thought I had was that my weight loss stopped but doc thinks I weigh the same as last week because of all the water retention. I thought IPF was a slow disease and I feel like I'm spinning out of control. Well, it helps to have you guys. I don't want to fall apart with Rich because he has enough stress. Oh, just thought of some good news, kidney infection much improved so there you go a ray of sunshine on my cloudy day. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, you name it I'll get it '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 13, 2009 5:04 PM To: Breathe-Support@ yahoogroups. com Subject: Re: DUH Sunny Sunny good idea to take pictures of your legs Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 3:45 PM Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@ yahoo.com Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support@ yahoogroups. com Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. Marcia Messages in this topic (9) Reply (via web post) | Start a new topic MARKETPLACE I Got Fired But now make $350/day online!. I'm happy I lost my Job. Now I make $12,000/mo online! See how I do it: WealthResource.org. Mom Power: Discover the community of moms doing more for their families, for the world and for each other .. __,_ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 From: Beth Sent: Wednesday, May 13, 2009 5:45 PM To: Breathe-Support Subject: Re: DUH Sunny Sunny, I just thought I'd mention that Furosemide (which is the generic form of Lasix) is available at Walmart in the 20, 40 and 80mg dosages at $4 for a 30 day supply and $10 for a 90 day supply. It's a very inexpensive diuretic so hopefully that helps. Please don't substitute a "cheap OTC water pill". You would be taking chances with your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Wednesday, May 13, 2009 8:32:36 PMSubject: Re: DUH Sunny Hi Air Family - I pray that everyone is doing well today. Praying for all of you helps keep my spirits up and right now I am having to pray real hard. The doctor's visit did not go well. My blood pressure, normally 110/70 was 150/98. Doctor put me on Lasik which is probably another med I can't afford to get but I know there are cheap OTC water pills. He is concerned because my urine indicates that I am dehydrated even though I am retaining all this water. He called it edema. I have to have blood work done tomorrow and will be seeing the cardiologist. My primary was reluctant to specifically say what he thought was going on by he believes it is cardiovascular related. I know people with IPF can have heart trouble but this all seems so sudden. Can I be honest with you guys? I am sitting here shaking, crying and scared to death. I had a heart attack before or an MI but I weighed almost 445 pounds then and I smoked heavily. Now I weigh 175 and don't smoke. My heart workup in 2006 was nearly perfect. I just feel like everything is happening at once. I can't wear regular shoes instead I have to wear Rich's flip flops because of the swelling. The one good news I thought I had was that my weight loss stopped but doc thinks I weigh the same as last week because of all the water retention. I thought IPF was a slow disease and I feel like I'm spinning out of control. Well, it helps to have you guys. I don't want to fall apart with Rich because he has enough stress. Oh, just thought of some good news, kidney infection much improved so there you go a ray of sunshine on my cloudy day. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, you name it I'll get it '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 13, 2009 5:04 PM To: Breathe-Support@ yahoogroups. com Subject: Re: DUH Sunny Sunny good idea to take pictures of your legs Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 3:45 PM Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@ yahoo.com Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support@ yahoogroups. com Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. Marcia Messages in this topic (9) Reply (via web post) | Start a new topic MARKETPLACE I Got Fired But now make $350/day online!. I'm happy I lost my Job. Now I make $12,000/mo online! See how I do it: WealthResource.org. Mom Power: Discover the community of moms doing more for their families, for the world and for each other .. __,_ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 sunny you can't afford not to get the prescription filled obviously you have multiple diseases that may or may not be related the swollen feet i am familar with are usually edema and related to cardiovascular issues however, i am not a medical professional so i am reluctant to say anything else listen to the docs and get the prescriptions, in my opinion, the cheap otc water pills will not be as effective my dad had chf--congestive heart failure--he used to get lasix injections when necessary and end up in the hospital -- usually ICU or CCU if i remember correctly, i could be mistaken, you had a bladder infection, the antibiotic was too expensive, so you ended up with a kidney infection i wonder if the kidney infection had anything to do with the edema it may or may not have anything to do with pulmonary fibrosis, that could be a different issue entirely Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: DUH SunnyTo: Breathe-Support Date: Wednesday, May 13, 2009, 8:32 PM Hi Air Family - I pray that everyone is doing well today. Praying for all of you helps keep my spirits up and right now I am having to pray real hard. The doctor's visit did not go well. My blood pressure, normally 110/70 was 150/98. Doctor put me on Lasik which is probably another med I can't afford to get but I know there are cheap OTC water pills. He is concerned because my urine indicates that I am dehydrated even though I am retaining all this water. He called it edema. I have to have blood work done tomorrow and will be seeing the cardiologist. My primary was reluctant to specifically say what he thought was going on by he believes it is cardiovascular related. I know people with IPF can have heart trouble but this all seems so sudden. Can I be honest with you guys? I am sitting here shaking, crying and scared to death. I had a heart attack before or an MI but I weighed almost 445 pounds then and I smoked heavily. Now I weigh 175 and don't smoke. My heart workup in 2006 was nearly perfect. I just feel like everything is happening at once. I can't wear regular shoes instead I have to wear Rich's flip flops because of the swelling. The one good news I thought I had was that my weight loss stopped but doc thinks I weigh the same as last week because of all the water retention. I thought IPF was a slow disease and I feel like I'm spinning out of control. Well, it helps to have you guys. I don't want to fall apart with Rich because he has enough stress. Oh, just thought of some good news, kidney infection much improved so there you go a ray of sunshine on my cloudy day. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, you name it I'll get it '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 13, 2009 5:04 PM To: Breathe-Support@ yahoogroups. com Subject: Re: DUH Sunny Sunny good idea to take pictures of your legs Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 3:45 PM Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@ yahoo.com Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support@ yahoogroups. com Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. 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Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 thanks Beth i should have read your response before writing my response by the way have a wonderful and safe trip to New York we are going to visit Jill, and Davin in Manhatten on Saturday, it's a 1 1/2 to 2 hour drive for us Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: DUH SunnyTo: Breathe-Support Date: Wednesday, May 13, 2009, 8:45 PM Sunny, I just thought I'd mention that Furosemide (which is the generic form of Lasix) is available at Walmart in the 20, 40 and 80mg dosages at $4 for a 30 day supply and $10 for a 90 day supply. It's a very inexpensive diuretic so hopefully that helps. Please don't substitute a "cheap OTC water pill". You would be taking chances with your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, May 13, 2009 8:32:36 PMSubject: Re: DUH Sunny Hi Air Family - I pray that everyone is doing well today. Praying for all of you helps keep my spirits up and right now I am having to pray real hard. The doctor's visit did not go well. My blood pressure, normally 110/70 was 150/98. Doctor put me on Lasik which is probably another med I can't afford to get but I know there are cheap OTC water pills. He is concerned because my urine indicates that I am dehydrated even though I am retaining all this water. He called it edema. I have to have blood work done tomorrow and will be seeing the cardiologist. My primary was reluctant to specifically say what he thought was going on by he believes it is cardiovascular related. I know people with IPF can have heart trouble but this all seems so sudden. Can I be honest with you guys? I am sitting here shaking, crying and scared to death. I had a heart attack before or an MI but I weighed almost 445 pounds then and I smoked heavily. Now I weigh 175 and don't smoke. My heart workup in 2006 was nearly perfect. I just feel like everything is happening at once. I can't wear regular shoes instead I have to wear Rich's flip flops because of the swelling. The one good news I thought I had was that my weight loss stopped but doc thinks I weigh the same as last week because of all the water retention. I thought IPF was a slow disease and I feel like I'm spinning out of control. Well, it helps to have you guys. I don't want to fall apart with Rich because he has enough stress. Oh, just thought of some good news, kidney infection much improved so there you go a ray of sunshine on my cloudy day. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, you name it I'll get it '09, Idaho From: Joyce T Rosenberg Sent: Wednesday, May 13, 2009 5:04 PM To: Breathe-Support@ yahoogroups. com Subject: Re: DUH Sunny Sunny good idea to take pictures of your legs Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund. org From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 3:45 PM Thank you Marcia for your compassion. It has been a rough few days. I finally have my meds back but after being back on them for two days I have had the worst morning I have ever had. I woke up and sometime in the night had pulled off my oxygen. I could barely get any breath in and coughed for at least 30 minutes. When I checked my O2 (with the meter that the nicest guy in the world sent me. Hi Saint Jack) it was 74%. That was 3 hours ago and just sitting I can't get it above 90. The swelling in my feet has gone down quite a bit. In a way I wish it hadn't so doc could have seen exactly how swollen they were but I smart now. I took digital pictures so I can show him. It is sad when you feel like if the doc doesn't see it with his own eyes he doesn't believe you. When I called him yesterday he said it couldn't be a side effect of pred withdrawal but I think he's wrong and being with the pred let my Lupus go nuts and it was a Lupus flare that gave me the strange rash and swelling. I am assuming that it is going to take another day or so for the pred to build up enough for me to be back to my normal (abbynormal) self. It was a scary time but we have measures in place now that will insure it doesn't happen again. Whoa, I just realized that this morning I was probably having an asthma attack and didn't even think to grab my inhaler because I thought it was PF related. OH! The duh Sunny strikes again. I am going to go get my puffer right now and I bet my O2 comes up. Thanks Marcia you may have eased my mind considerably. Sunny, PF'09, Lupus/Sjogrens/ Arthritis '04, Asthma '07 Oh shoot I can't even get remember this stuff!, Idaho (remember that I don't live in Oregon - step up I think) From: Chatty_katt3@ yahoo.com Sent: Wednesday, May 13, 2009 12:56 AM To: Breathe-Support@ yahoogroups. com Subject: DUH Sunny Sunny, I am sorry you had such trouble with pred. It can be a real disaster. When my husband had asthma and had been told he was dependant on prednisone. One doctor,( I hate to give him that title, I still wonder if he got his license out of a cracker jack box.) told my husband that he should go off prednisone cold turkey. Four houses to the corner then a straight shot about a mile to the hospital. We had made the trip many times, however, this was the first time I ever had to call the parametics, as I felt he needed someone working on him immediately. I thought I was going to lose him. 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