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 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 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--- On Wed, 5/13/09, rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com> wrote: From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: DUH SunnyTo: Breathe-Support Date: 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...
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