Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Blimey I hope your getting over it now xx>> > So...I will start with the ending. 1 sick me, 1 distraught, totally> falling apart husband, 1 capable daughter (thank God), 3 teenagers and 5> (yes five) EMTs all in my small room.> > Reason: A mishap while changing tubing on the picc line for Flolan> delivery. I have dual lumen caps on the access to the tubing. One is> for the medication and one is a flush line. When we change tubing, we> hold onto the cap, sanitize it and then hook the tubing on. Well,> Lucian was shaky and I was so tired that I was not being alert. He> dropped the tubing and let go of the cap to try to catch it. Then we> realized we had no way of knowing which lumen was the Flolan access line> and which was the flush line.> > We called the emergency number and was told there were no nurses> available to help us, but to stay on the line till one did become> available.> > Keep in mind that Flolan has a half life of 3-5 minutes in your body,> then symptoms return.....in a big way. It is life threatening.> > I won't go through all the details, but it was 30 minutes getting me> hooked up and back on medication. It was such a jolt that I turned beet> red and felt like I was on fire. My heart felt a lot of pressure.> > My not medically trained daughter has to draw blood up into a syringe,> then replace it with either Flolan or solium chloride. We had to make> the determination whether we had the correct lines. Turns out we did> not. But, at the end of it all, I called the doc and the charge nurse> in the unit at the hosptal where I stayed....they assured me that once I> had survived the ordeal that it did not matter which tubing because both> went to the same place. It is just that the Flolan delivery is never> supposed to be interrupted....especially for 30 minutes.> > The EMTs had recieved the Flolan information packet. One out of the 5> had even read it. None were allowed to touch the picc line. All they> did was take my vitals and offer me a ride to the Big House. I> declined.> > Whew!!!! All I can say is that I must be part cat!> > 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 palm of> my hands. Isaiah 49: 15-16> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Joyce, You are definitely a cat, but I think a cat with a double helping of lives!! The scenario you described scared the bejeebers out of me!! I'm so thankful you were able to get things going again, even after 30 minutes. Obviously God has His hand on you and he's not done with you yet either. I am sorry that you will have to go back to the hospital but the good news is they wouldn't be inserting the Hickman if the Flolan wasn't working. Hopefully they will get you in and out quickly and back home where you belong! Here's to an UNEVENTFUL Tuesday! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." What an ordeal.... So...I will start with the ending. 1 sick me, 1 distraught, totally falling apart husband, 1 capable daughter (thank God), 3 teenagers and 5 (yes five) EMTs all in my small room. Reason: A mishap while changing tubing on the picc line for Flolan delivery. I have dual lumen caps on the access to the tubing. One is for the medication and one is a flush line. When we change tubing, we hold onto the cap, sanitize it and then hook the tubing on. Well, Lucian was shaky and I was so tired that I was not being alert. He dropped the tubing and let go of the cap to try to catch it. Then we realized we had no way of knowing which lumen was the Flolan access line and which was the flush line. We called the emergency number and was told there were no nurses available to help us, but to stay on the line till one did become available. Keep in mind that Flolan has a half life of 3-5 minutes in your body, then symptoms return.....in a big way. It is life threatening. I won't go through all the details, but it was 30 minutes getting me hooked up and back on medication. It was such a jolt that I turned beet red and felt like I was on fire. My heart felt a lot of pressure. My not medically trained daughter has to draw blood up into a syringe, then replace it with either Flolan or solium chloride. We had to make the determination whether we had the correct lines. Turns out we did not. But, at the end of it all, I called the doc and the charge nurse in the unit at the hosptal where I stayed....they assured me that once I had survived the ordeal that it did not matter which tubing because both went to the same place. It is just that the Flolan delivery is never supposed to be interrupted. ...especially for 30 minutes. The EMTs had recieved the Flolan information packet. One out of the 5 had even read it. None were allowed to touch the picc line. All they did was take my vitals and offer me a ride to the Big House. I declined. Whew!!!! All I can say is that I must be part cat! 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 palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Joyce So sorry to hear the latest struggle. Is it at all possible where you are to have a home health care nurse to come in daily and do the Flolan, check your oxygen, even your vitals and promote Lucian to director and safety in case they struggle or don't show? It would provide double protection and allow him to be there to comfort while they did it and to help if they needed it. I would think any insurance would cover this as its certainly something requiring nursing skills. > > > So...I will start with the ending. 1 sick me, 1 distraught, totally > falling apart husband, 1 capable daughter (thank God), 3 teenagers and 5 > (yes five) EMTs all in my small room. > > Reason: A mishap while changing tubing on the picc line for Flolan > delivery. I have dual lumen caps on the access to the tubing. One is > for the medication and one is a flush line. When we change tubing, we > hold onto the cap, sanitize it and then hook the tubing on. Well, > Lucian was shaky and I was so tired that I was not being alert. He > dropped the tubing and let go of the cap to try to catch it. Then we > realized we had no way of knowing which lumen was the Flolan access line > and which was the flush line. > > We called the emergency number and was told there were no nurses > available to help us, but to stay on the line till one did become > available. > > Keep in mind that Flolan has a half life of 3-5 minutes in your body, > then symptoms return.....in a big way. It is life threatening. > > I won't go through all the details, but it was 30 minutes getting me > hooked up and back on medication. It was such a jolt that I turned beet > red and felt like I was on fire. My heart felt a lot of pressure. > > My not medically trained daughter has to draw blood up into a syringe, > then replace it with either Flolan or solium chloride. We had to make > the determination whether we had the correct lines. Turns out we did > not. But, at the end of it all, I called the doc and the charge nurse > in the unit at the hosptal where I stayed....they assured me that once I > had survived the ordeal that it did not matter which tubing because both > went to the same place. It is just that the Flolan delivery is never > supposed to be interrupted....especially for 30 minutes. > > The EMTs had recieved the Flolan information packet. One out of the 5 > had even read it. None were allowed to touch the picc line. All they > did was take my vitals and offer me a ride to the Big House. I > declined. > > Whew!!!! All I can say is that I must be part cat! > > 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 palm of > my hands. Isaiah 49: 15-16 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Joyce So sorry to hear the latest struggle. Is it at all possible where you are to have a home health care nurse to come in daily and do the Flolan, check your oxygen, even your vitals and promote Lucian to director and safety in case they struggle or don't show? It would provide double protection and allow him to be there to comfort while they did it and to help if they needed it. I would think any insurance would cover this as its certainly something requiring nursing skills. > > > So...I will start with the ending. 1 sick me, 1 distraught, totally > falling apart husband, 1 capable daughter (thank God), 3 teenagers and 5 > (yes five) EMTs all in my small room. > > Reason: A mishap while changing tubing on the picc line for Flolan > delivery. I have dual lumen caps on the access to the tubing. One is > for the medication and one is a flush line. When we change tubing, we > hold onto the cap, sanitize it and then hook the tubing on. Well, > Lucian was shaky and I was so tired that I was not being alert. He > dropped the tubing and let go of the cap to try to catch it. Then we > realized we had no way of knowing which lumen was the Flolan access line > and which was the flush line. > > We called the emergency number and was told there were no nurses > available to help us, but to stay on the line till one did become > available. > > Keep in mind that Flolan has a half life of 3-5 minutes in your body, > then symptoms return.....in a big way. It is life threatening. > > I won't go through all the details, but it was 30 minutes getting me > hooked up and back on medication. It was such a jolt that I turned beet > red and felt like I was on fire. My heart felt a lot of pressure. > > My not medically trained daughter has to draw blood up into a syringe, > then replace it with either Flolan or solium chloride. We had to make > the determination whether we had the correct lines. Turns out we did > not. But, at the end of it all, I called the doc and the charge nurse > in the unit at the hosptal where I stayed....they assured me that once I > had survived the ordeal that it did not matter which tubing because both > went to the same place. It is just that the Flolan delivery is never > supposed to be interrupted....especially for 30 minutes. > > The EMTs had recieved the Flolan information packet. One out of the 5 > had even read it. None were allowed to touch the picc line. All they > did was take my vitals and offer me a ride to the Big House. I > declined. > > Whew!!!! All I can say is that I must be part cat! > > 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 palm of > my hands. Isaiah 49: 15-16 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Bruce, Nope, insurance will not cover a home health nurse for Flolan support. They have you assert up front that there is someone to assist you. They trained us ( you can see what good students we were). Most days are fine, but some are not. They paid for 3 days of home health to train my daughter to do the sterile dressing. It is a very prescise procedure and in my opinion should be done by a professional nurse. But, not! I feel like I have been run over with a Mack truck today. Whew! 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 palm of my hands. Isaiah 49: 15-16> >> >> > So...I will start with the ending. 1 sick me, 1 distraught, totally> > falling apart husband, 1 capable daughter (thank God), 3 teenagers and> 5> > (yes five) EMTs all in my small room.> >> > Reason: A mishap while changing tubing on the picc line for Flolan> > delivery. I have dual lumen caps on the access to the tubing. One is> > for the medication and one is a flush line. When we change tubing, we> > hold onto the cap, sanitize it and then hook the tubing on. Well,> > Lucian was shaky and I was so tired that I was not being alert. He> > dropped the tubing and let go of the cap to try to catch it. Then we> > realized we had no way of knowing which lumen was the Flolan access> line> > and which was the flush line.> >> > We called the emergency number and was told there were no nurses> > available to help us, but to stay on the line till one did become> > available.> >> > Keep in mind that Flolan has a half life of 3-5 minutes in your body,> > then symptoms return.....in a big way. It is life threatening.> >> > I won't go through all the details, but it was 30 minutes getting me> > hooked up and back on medication. It was such a jolt that I turned> beet> > red and felt like I was on fire. My heart felt a lot of pressure.> >> > My not medically trained daughter has to draw blood up into a syringe,> > then replace it with either Flolan or solium chloride. We had to make> > the determination whether we had the correct lines. Turns out we did> > not. But, at the end of it all, I called the doc and the charge nurse> > in the unit at the hosptal where I stayed....they assured me that once> I> > had survived the ordeal that it did not matter which tubing because> both> > went to the same place. It is just that the Flolan delivery is never> > supposed to be interrupted....especially for 30 minutes.> >> > The EMTs had recieved the Flolan information packet. One out of the 5> > had even read it. None were allowed to touch the picc line. All they> > did was take my vitals and offer me a ride to the Big House. I> > declined.> >> > Whew!!!! All I can say is that I must be part cat!> >> > 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 palm of> > my hands. Isaiah 49: 15-16> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 That sucks....sorry But for them to assume you have someone there or force you to have to get someone is ridiculous. I couldn't possibly do it myself as I have neither the vision nor the finger dexterity. I'd make Lucian look like the best medic in history by comparison. So if I needed Flolan, I would not be entitled since I live alone, per your insurance company? > > > > > > > > > So...I will start with the ending. 1 sick me, 1 distraught, totally > > > falling apart husband, 1 capable daughter (thank God), 3 teenagers > and > > 5 > > > (yes five) EMTs all in my small room. > > > > > > Reason: A mishap while changing tubing on the picc line for Flolan > > > delivery. I have dual lumen caps on the access to the tubing. One is > > > for the medication and one is a flush line. When we change tubing, > we > > > hold onto the cap, sanitize it and then hook the tubing on. Well, > > > Lucian was shaky and I was so tired that I was not being alert. He > > > dropped the tubing and let go of the cap to try to catch it. Then we > > > realized we had no way of knowing which lumen was the Flolan access > > line > > > and which was the flush line. > > > > > > We called the emergency number and was told there were no nurses > > > available to help us, but to stay on the line till one did become > > > available. > > > > > > Keep in mind that Flolan has a half life of 3-5 minutes in your > body, > > > then symptoms return.....in a big way. It is life threatening. > > > > > > I won't go through all the details, but it was 30 minutes getting me > > > hooked up and back on medication. It was such a jolt that I turned > > beet > > > red and felt like I was on fire. My heart felt a lot of pressure. > > > > > > My not medically trained daughter has to draw blood up into a > syringe, > > > then replace it with either Flolan or solium chloride. We had to > make > > > the determination whether we had the correct lines. Turns out we did > > > not. But, at the end of it all, I called the doc and the charge > nurse > > > in the unit at the hosptal where I stayed....they assured me that > once > > I > > > had survived the ordeal that it did not matter which tubing because > > both > > > went to the same place. It is just that the Flolan delivery is never > > > supposed to be interrupted....especially for 30 minutes. > > > > > > The EMTs had recieved the Flolan information packet. One out of the > 5 > > > had even read it. None were allowed to touch the picc line. All they > > > did was take my vitals and offer me a ride to the Big House. I > > > declined. > > > > > > Whew!!!! All I can say is that I must be part cat! > > > > > > 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 palm > of > > > my hands. Isaiah 49: 15-16 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 My sweet Joyce, As I sit here crying for you, I just keep thinking, I hate this disease!!!!!!!!!!!!!!!!! Bless your heart you have been thru so much and yet, you dont give up. I admire you. I'm so sorry for whatyou had to endure, your whole family, prayers are always going up for you. Love you, Vicky81856 ••••••••••••• Original Message ••••••••••••• So...I will start with the ending. 1 sick me, 1 distraught, totally falling apart husband, 1 capable daughter (thank God), 3 teenagers and 5 (yes five) EMTs all in my small room. Reason: A mishap while changing tubing on the picc line for Flolan delivery. I have dual lumen caps on the access to the tubing. One is for the medication and one is a flush line. When we change tubing, we hold onto the cap, sanitize it and then hook the tubing on. Well, Lucian was shaky and I was so tired that I was not being alert. He dropped the tubing and let go of the cap to try to catch it. Then we realized we had no way of knowing which lumen was the Flolan access line and which was the flush line. We called the emergency number and was told there were no nurses available to help us, but to stay on the line till one did become available. Keep in mind that Flolan has a half life of 3-5 minutes in your body, then symptoms return.....in a big way. It is life threatening. I won't go through all the details, but it was 30 minutes getting me hooked up and back on medication. It was such a jolt that I turned beet red and felt like I was on fire. My heart felt a lot of pressure. My not medically trained daughter has to draw blood up into a syringe, then replace it with either Flolan or solium chloride. We had to make the determination whether we had the correct lines. Turns out we did not. But, at the end of it all, I called the doc and the charge nurse in the unit at the hosptal where I stayed....they assured me that once I had survived the ordeal that it did not matter which tubing because both went to the same place. It is just that the Flolan delivery is never supposed to be interrupted....especially for 30 minutes. The EMTs had recieved the Flolan information packet. One out of the 5 had even read it. None were allowed to touch the picc line. All they did was take my vitals and offer me a ride to the Big House. I declined. Whew!!!! All I can say is that I must be part cat! 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 palm of my hands. Isaiah 49: 15-16 Create a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Joyce, I just read this post. You went through such an ordeal and yet you posted to me!!! You are indeed the Queen!! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Joyce wrote: So...I will start with the ending. 1 sick me, 1 distraught, totally falling apart husband, 1 capable daughter (thank God), 3 teenagers and 5 (yes five) EMTs all in my small room. Reason: A mishap while changing tubing on the picc line for Flolan delivery. I have dual lumen caps on the access to the tubing. One is for the medication and one is a flush line. When we change tubing, we hold onto the cap, sanitize it and then hook the tubing on. Well, Lucian was shaky and I was so tired that I was not being alert. He dropped the tubing and let go of the cap to try to catch it. Then we realized we had no way of knowing which lumen was the Flolan access line and which was the flush line. We called the emergency number and was told there were no nurses available to help us, but to stay on the line till one did become available. Keep in mind that Flolan has a half life of 3-5 minutes in your body, then symptoms return.....in a big way. It is life threatening. I won't go through all the details, but it was 30 minutes getting me hooked up and back on medication. It was such a jolt that I turned beet red and felt like I was on fire. My heart felt a lot of pressure. My not medically trained daughter has to draw blood up into a syringe, then replace it with either Flolan or solium chloride. We had to make the determination whether we had the correct lines. Turns out we did not. But, at the end of it all, I called the doc and the charge nurse in the unit at the hosptal where I stayed....they assured me that once I had survived the ordeal that it did not matter which tubing because both went to the same place. It is just that the Flolan delivery is never supposed to be interrupted....especially for 30 minutes. The EMTs had recieved the Flolan information packet. One out of the 5 had even read it. None were allowed to touch the picc line. All they did was take my vitals and offer me a ride to the Big House. I declined. Whew!!!! All I can say is that I must be part cat! 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 palm of my hands. Isaiah 49: 15-16 No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 , My daughter's best friend from college is a perky and wonderful young woman. She was so excited about having her first baby. When he came, she changed completely. She slid into a depth of despair. She did not want the baby, could not stand to even be around him. She lost all interest in everything. She was able to get help and has been a great mom. But, to see her, the happiest girl ever, go through this syndrome was an eye opener. She has chosen not to have more babies. It really scared her. I am praying for your family. I'm proud of all the parents involved, that they understand and are helping. There was a time that it was misunderstood. 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 palm of my hands. Isaiah 49: 15-16 > > > So...I will start with the ending. 1 sick me, 1 distraught, totally > > falling apart husband, 1 capable daughter (thank God), 3 teenagers and > > 5 (yes five) EMTs all in my small room. > >> > Reason: A mishap while changing tubing on the picc line for Flolan > > delivery. I have dual lumen caps on the access to the tubing. One is > > for the medication and one is a flush line. When we change tubing, we > > hold onto the cap, sanitize it and then hook the tubing on. Well, > > Lucian was shaky and I was so tired that I was not being alert. He > > dropped the tubing and let go of the cap to try to catch it. Then we > > realized we had no way of knowing which lumen was the Flolan access > > line and which was the flush line. > >> > We called the emergency number and was told there were no nurses > > available to help us, but to stay on the line till one did become > > available.> >> > Keep in mind that Flolan has a half life of 3-5 minutes in your body, > > then symptoms return.....in a big way. It is life threatening. > >> > I won't go through all the details, but it was 30 minutes getting me > > hooked up and back on medication. It was such a jolt that I turned > > beet red and felt like I was on fire. My heart felt a lot of pressure. > >> > My *not* medically trained daughter has to draw blood up into a > > syringe, then replace it with either Flolan or solium chloride. We > > had to make the determination whether we had the correct lines. Turns > > out we did *not*. But, at the end of it all, I called the doc and the > > charge nurse in the unit at the hosptal where I stayed....they assured > > me that once I had survived the ordeal that it did not matter which > > tubing because both went to the same place. It is just that the > > Flolan delivery is never supposed to be interrupted....especially for > > 30 minutes. > >> > The EMTs had recieved the Flolan information packet. One out of the 5 > > had even read it. None were allowed to touch the picc line. All they > > did was take my vitals and offer me a ride to the Big House. I > > declined. > >> > Whew!!!! All I can say is that I must be part cat!> >> > 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 palm > > of my hands. Isaiah 49: 15-16> >> > > >> > > >> >------------------------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG. > >Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM> > > >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.