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Chicken and dumplings? Apple crisp? Yum Yum.... Beth wrote: Joyce, How I dearly wish there was a way to lift this burden from you. Flolan is such a difficult med...as someone who used to suffer from migraines I'm sorry about the headaches. They are so debilitating. You are in my thoughts and prayers continually, you and Lucian both actually. If I was close by

I'd bring a pot of chicken and dumplings over and some apple crisp. Consider yourself hugged anyway!! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." ----- Original

Message ----From: Joyce <janne5303>To: Breathe-Support Sent: Tuesday, February 12, 2008 9:21:53 PMSubject: Re: Why I HATE hospitals! 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>

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