Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 Oh God Bless You and Lucian with strength and knowledge to get this new medication down pat. I just hope and pray you get to the Dr without to much pain and exhaustion. If you have a MUMU ??? (Or fat dress I call them) just put it over your head and go. I know you worry about Lucian but I also know how much he loves you and is pleased to do all he can for you. I know you both must have been scared to pieces. Try to relax as much as possible. Is Lucian home with you during the day. I think of you all during my day so just know you are not alone. I am certain I am not the only one. I have thought about calling you but I am afraid you will be resting. I'll wait a few more days. Take care my friend. More (((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))) Love and Prayers, Peggy Peggy, I think they are going to have to cut my Flolan back. I am having awful headaches. Today my feet swelled. While I was having the catherization, they tested the various meds on the pressure. Flolan was the one that worked. It cut the pressure back 18%. The pressure was on the artery that has the 70% blockage. They said that if I could tolerate the Flolan they would probably add Trackleer or Revitio...or both. But, the pressure has to come down. I am just not bouncing back. I feel bad. They started Coumadin and I know that is a tough drug to get used to. So, who knows. I am just dragging around. I see my new doc on Monday. I just dread the thought of getting dressed to go anywhere. My sweet husband has worked like a dog to master this task of my medication. This is a very difficult med to administer and the mixing and all the sterile procedures are overwhelming. Then comes the computerized part, which is not his strong point. But, he is doing great. I just love him so much for taking such good care of me. Today was the first time we had mixed the medicine and the little pump started beeping and we couldn't figure out what to do next. We were both shaking. I only have 3 minutes to get changed over once it is unhooked. We called the nurse and she talked us through it. He flushes out the pic lines and everything. Tomorrow we change dressing. A health nurse will come the first couple of times. Then he will have to do it. Just keep praying. I am doing my part. God will do his. His will be done. 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 palms of my hands. Isaiah 49:15-16 > > > I never fail to face a calamity when I get to visit the Big House. I > just wanted to share this one with you. > > I was summoned to the BH on Tuesday. They did testing into the night > and did a heart catherization on Wednesday a.m. This cath was a much > better experience than the one at . They gave me lots of drugs > and all went well....except the findings. On Thursday morning, they > told me that I would have to be transferred to ICU to initiate the > Flolan treatments. So they took me to an ICU unit (they have 3). My > paperwork, however, went another direction. My girlfriend was with > me. They rolled me in the room and stuck my bed in a small corner. > The curtain was pulled, but I could tell that the rest of the room > was the actual room and this was like a holding place for me until > they found out who I was and where my papers were. They came in a > took my friend outside into the waiting area. She could never get > back in. It was around 10:00 a.m. > > They closed the doors, there was no air flow in the room. I was > having trouble breathing. At that point some respiratory girl came > in to tell me that she would have to turn my 02 down to 5L, which she > did. I can't remember why. So, I was in a panic. Then I heard the > voice of my room mate. It was a MAN. Now, I had no underwear on due > to the cath bandanges. I was in a room with a MAN and I had no > underwear on. And they were cutting my air out. I began to protest > and they ignored me. They told me that I could never get out of my > bed during the week that I would be there. I refused to use a > bedpan, so my bladder was about to burst. They told me that they had > no bathrooms in that unit that all the people there were confined to > thier bed. (turns out it was the place that they took the patients > who were dying). They were surprised to have someone rolled in who > could talk back to them. The nurses there were so angry that I was > there. They were extremely rude to me. Hateful. > > About 1:00 my friend and one of the elders from my church got back > in. I told him right away that I was in a room with a man and that I > had no panties on. I will never live that down. I was soaked in > sweat. Soon after, my daughter and grandson got in. At 2:30 my > husband came. had just called my doctor. Lucian in a not > so soft voice asked to talk with someone with half a brain. A nurse > management man came and he told him to unhook me that he was taking > me home. About that time my doc came. He was furious. No one knew > why I was there. Thank God, they didn't take me to the morgue. > > There WAS a bathroom, right in the room where I was. The male nurse > took me there. The poor man that was in the room was sitting in a > chair down by the bathroom and was not covered up. He didn't have > his panties on either. It was not pretty! Aaaargh! > > They decided that they had taken me to the wrong ICU. I begged my > doctor not to make me go to an ICU unit. They put me in the TMU in a > private room. They had never initiated Flolan outside of ICU, but > the docs did it a different way and I stayed in my nice private > room...with no men roomates. > > I filed reports while there, my doc filed a report, my friend who is > a nurse on that floor filed a report and as soon as I am up to it, a > letter will go out to everyone affiliated with that hospital. That > is one of the worst days of my life. Every other person that worked > there was super nice and caring. But that group of women in that one > unit were really mean and hateful. I know for certain that I do not > want to die in such a place. It was horrible. I did not get my > meds, my nebs, my lunch or even water. > > Were you all aware that they put men and women in rooms together in > ICU areas? That is unaccecptable! What happened to dignity? > > Maybe I am getting bettere, I am ranting! > > 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 palms of > my hands. Isaiah 49:15-16 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 Joyce.... One question just to ask. You mentioned a health nurse coming the first couple of times to change the dressing. Is there not a way to get one to keep coming? They can't make an assumption Lucian is there to do it, even though we know he is. But if it gave him just one less thing to do and one more minute to sit with you and just talk (or listen, which I imagine he does more of than he talks). This may not apply in some cases but for any of you who have a home caretaker, that does not change the responsibility for insurance to provide home health care. They can't assume that person is there or available. Even a task here and there can make things a bit easier. They really are required to provide services as if you've got no help there. > > > > > > I never fail to face a calamity when I get to visit the Big House. I > > just wanted to share this one with you. > > > > I was summoned to the BH on Tuesday. They did testing into the night > > and did a heart catherization on Wednesday a.m. This cath was a much > > better experience than the one at . They gave me lots of drugs > > and all went well....except the findings. On Thursday morning, they > > told me that I would have to be transferred to ICU to initiate the > > Flolan treatments. So they took me to an ICU unit (they have 3). My > > paperwork, however, went another direction. My girlfriend was with > > me. They rolled me in the room and stuck my bed in a small corner. > > The curtain was pulled, but I could tell that the rest of the room > > was the actual room and this was like a holding place for me until > > they found out who I was and where my papers were. They came in a > > took my friend outside into the waiting area. She could never get > > back in. It was around 10:00 a.m. > > > > They closed the doors, there was no air flow in the room. I was > > having trouble breathing. At that point some respiratory girl came > > in to tell me that she would have to turn my 02 down to 5L, which she > > did. I can't remember why. So, I was in a panic. Then I heard the > > voice of my room mate. It was a MAN. Now, I had no underwear on due > > to the cath bandanges. I was in a room with a MAN and I had no > > underwear on. And they were cutting my air out. I began to protest > > and they ignored me. They told me that I could never get out of my > > bed during the week that I would be there. I refused to use a > > bedpan, so my bladder was about to burst. They told me that they had > > no bathrooms in that unit that all the people there were confined to > > thier bed. (turns out it was the place that they took the patients > > who were dying). They were surprised to have someone rolled in who > > could talk back to them. The nurses there were so angry that I was > > there. They were extremely rude to me. Hateful. > > > > About 1:00 my friend and one of the elders from my church got back > > in. I told him right away that I was in a room with a man and that I > > had no panties on. I will never live that down. I was soaked in > > sweat. Soon after, my daughter and grandson got in. At 2:30 my > > husband came. had just called my doctor. Lucian in a not > > so soft voice asked to talk with someone with half a brain. A nurse > > management man came and he told him to unhook me that he was taking > > me home. About that time my doc came. He was furious. No one knew > > why I was there. Thank God, they didn't take me to the morgue. > > > > There WAS a bathroom, right in the room where I was. The male nurse > > took me there. The poor man that was in the room was sitting in a > > chair down by the bathroom and was not covered up. He didn't have > > his panties on either. It was not pretty! Aaaargh! > > > > They decided that they had taken me to the wrong ICU. I begged my > > doctor not to make me go to an ICU unit. They put me in the TMU in a > > private room. They had never initiated Flolan outside of ICU, but > > the docs did it a different way and I stayed in my nice private > > room...with no men roomates. > > > > I filed reports while there, my doc filed a report, my friend who is > > a nurse on that floor filed a report and as soon as I am up to it, a > > letter will go out to everyone affiliated with that hospital. That > > is one of the worst days of my life. Every other person that worked > > there was super nice and caring. But that group of women in that one > > unit were really mean and hateful. I know for certain that I do not > > want to die in such a place. It was horrible. I did not get my > > meds, my nebs, my lunch or even water. > > > > Were you all aware that they put men and women in rooms together in > > ICU areas? That is unaccecptable! What happened to dignity? > > > > Maybe I am getting bettere, I am ranting! > > > > 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 palms of > > my hands. Isaiah 49:15-16 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Bruce, My husband still works. Someone is always here with me when he is gone. I just hate that he has to come home, mix and administer medication and change dressing. He is is 63 and is just beat when he gets home. I will ask for extended care and see where it gets me. 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 palms of my hands. Isaiah 49:15-16 > > >> > >> > > I never fail to face a calamity when I get to visit the Big > House. I> > > just wanted to share this one with you.> > >> > > I was summoned to the BH on Tuesday. They did testing into the > night> > > and did a heart catherization on Wednesday a.m. This cath was a > much> > > better experience than the one at . They gave me lots of > drugs> > > and all went well....except the findings. On Thursday morning, > they> > > told me that I would have to be transferred to ICU to initiate > the> > > Flolan treatments. So they took me to an ICU unit (they have 3). > My> > > paperwork, however, went another direction. My girlfriend was > with> > > me. They rolled me in the room and stuck my bed in a small > corner.> > > The curtain was pulled, but I could tell that the rest of the > room> > > was the actual room and this was like a holding place for me > until> > > they found out who I was and where my papers were. They came in a> > > took my friend outside into the waiting area. She could never get> > > back in. It was around 10:00 a.m.> > >> > > They closed the doors, there was no air flow in the room. I was> > > having trouble breathing. At that point some respiratory girl > came> > > in to tell me that she would have to turn my 02 down to 5L, > which she> > > did. I can't remember why. So, I was in a panic. Then I heard the> > > voice of my room mate. It was a MAN. Now, I had no underwear on > due> > > to the cath bandanges. I was in a room with a MAN and I had no> > > underwear on. And they were cutting my air out. I began to > protest> > > and they ignored me. They told me that I could never get out of > my> > > bed during the week that I would be there. I refused to use a> > > bedpan, so my bladder was about to burst. They told me that they > had> > > no bathrooms in that unit that all the people there were > confined to> > > thier bed. (turns out it was the place that they took the > patients> > > who were dying). They were surprised to have someone rolled in > who> > > could talk back to them. The nurses there were so angry that I > was> > > there. They were extremely rude to me. Hateful.> > >> > > About 1:00 my friend and one of the elders from my church got > back> > > in. I told him right away that I was in a room with a man and > that I> > > had no panties on. I will never live that down. I was soaked in> > > sweat. Soon after, my daughter and grandson got in. At 2:30 my> > > husband came. had just called my doctor. Lucian in a > not> > > so soft voice asked to talk with someone with half a brain. A > nurse> > > management man came and he told him to unhook me that he was > taking> > > me home. About that time my doc came. He was furious. No one knew> > > why I was there. Thank God, they didn't take me to the morgue.> > >> > > There WAS a bathroom, right in the room where I was. The male > nurse> > > took me there. The poor man that was in the room was sitting in a> > > chair down by the bathroom and was not covered up. He didn't have> > > his panties on either. It was not pretty! Aaaargh!> > >> > > They decided that they had taken me to the wrong ICU. I begged my> > > doctor not to make me go to an ICU unit. They put me in the TMU > in a> > > private room. They had never initiated Flolan outside of ICU, but> > > the docs did it a different way and I stayed in my nice private> > > room...with no men roomates.> > >> > > I filed reports while there, my doc filed a report, my friend > who is> > > a nurse on that floor filed a report and as soon as I am up to > it, a> > > letter will go out to everyone affiliated with that hospital. > That> > > is one of the worst days of my life. Every other person that > worked> > > there was super nice and caring. But that group of women in that > one> > > unit were really mean and hateful. I know for certain that I do > not> > > want to die in such a place. It was horrible. I did not get my> > > meds, my nebs, my lunch or even water.> > >> > > Were you all aware that they put men and women in rooms together > in> > > ICU areas? That is unaccecptable! What happened to dignity?> > >> > > Maybe I am getting bettere, I am ranting!> > >> > > 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 palms > of> > > my hands. Isaiah 49:15-16> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 I live alone and I would obviously have to have home health care to give it. You have the same rights. Now getting someone trained to mix and administer the med may be a challenge, and I know Lucian will do anything in the world. But still any help for him as much as you seems it would be nice. Every five minutes he's not doing those things are five more he can just sit and hold you. > > > > > > > > > > > > I never fail to face a calamity when I get to visit the Big > > House. I > > > > just wanted to share this one with you. > > > > > > > > I was summoned to the BH on Tuesday. They did testing into the > > night > > > > and did a heart catherization on Wednesday a.m. This cath was a > > much > > > > better experience than the one at . They gave me lots of > > drugs > > > > and all went well....except the findings. On Thursday morning, > > they > > > > told me that I would have to be transferred to ICU to initiate > > the > > > > Flolan treatments. So they took me to an ICU unit (they have 3). > > My > > > > paperwork, however, went another direction. My girlfriend was > > with > > > > me. They rolled me in the room and stuck my bed in a small > > corner. > > > > The curtain was pulled, but I could tell that the rest of the > > room > > > > was the actual room and this was like a holding place for me > > until > > > > they found out who I was and where my papers were. They came in a > > > > took my friend outside into the waiting area. She could never get > > > > back in. It was around 10:00 a.m. > > > > > > > > They closed the doors, there was no air flow in the room. I was > > > > having trouble breathing. At that point some respiratory girl > > came > > > > in to tell me that she would have to turn my 02 down to 5L, > > which she > > > > did. I can't remember why. So, I was in a panic. Then I heard the > > > > voice of my room mate. It was a MAN. Now, I had no underwear on > > due > > > > to the cath bandanges. I was in a room with a MAN and I had no > > > > underwear on. And they were cutting my air out. I began to > > protest > > > > and they ignored me. They told me that I could never get out of > > my > > > > bed during the week that I would be there. I refused to use a > > > > bedpan, so my bladder was about to burst. They told me that they > > had > > > > no bathrooms in that unit that all the people there were > > confined to > > > > thier bed. (turns out it was the place that they took the > > patients > > > > who were dying). They were surprised to have someone rolled in > > who > > > > could talk back to them. The nurses there were so angry that I > > was > > > > there. They were extremely rude to me. Hateful. > > > > > > > > About 1:00 my friend and one of the elders from my church got > > back > > > > in. I told him right away that I was in a room with a man and > > that I > > > > had no panties on. I will never live that down. I was soaked in > > > > sweat. Soon after, my daughter and grandson got in. At 2:30 my > > > > husband came. had just called my doctor. Lucian in a > > not > > > > so soft voice asked to talk with someone with half a brain. A > > nurse > > > > management man came and he told him to unhook me that he was > > taking > > > > me home. About that time my doc came. He was furious. No one knew > > > > why I was there. Thank God, they didn't take me to the morgue. > > > > > > > > There WAS a bathroom, right in the room where I was. The male > > nurse > > > > took me there. The poor man that was in the room was sitting in a > > > > chair down by the bathroom and was not covered up. He didn't have > > > > his panties on either. It was not pretty! Aaaargh! > > > > > > > > They decided that they had taken me to the wrong ICU. I begged my > > > > doctor not to make me go to an ICU unit. They put me in the TMU > > in a > > > > private room. They had never initiated Flolan outside of ICU, but > > > > the docs did it a different way and I stayed in my nice private > > > > room...with no men roomates. > > > > > > > > I filed reports while there, my doc filed a report, my friend > > who is > > > > a nurse on that floor filed a report and as soon as I am up to > > it, a > > > > letter will go out to everyone affiliated with that hospital. > > That > > > > is one of the worst days of my life. Every other person that > > worked > > > > there was super nice and caring. But that group of women in that > > one > > > > unit were really mean and hateful. I know for certain that I do > > not > > > > want to die in such a place. It was horrible. I did not get my > > > > meds, my nebs, my lunch or even water. > > > > > > > > Were you all aware that they put men and women in rooms together > > in > > > > ICU areas? That is unaccecptable! What happened to dignity? > > > > > > > > Maybe I am getting bettere, I am ranting! > > > > > > > > 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 palms > > of > > > > my hands. Isaiah 49:15-16 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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