Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Joyce you are a mess... LOL sleep well Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." May,Yes, I will keep using Flolan after the hospital stay. One of the things that they will do is another heart cath to measure pressures to see if it is down from the current dosage. They will then decide whether to increase dosage or not. They are going to insert a Hickman Catheter in my chest to replace the picc line in my arm. I will be glad to get that thing out of my arm. It is so sore because I sleep on that side. I have been on antibiotics because it was looking infected. It has been in there too long. Past time to move it. I am not looking forward to that or any of it! Yes, it will good to get a break from mixing meds, etc. Not hardly worth the trade off, however.I love your daughter's name. So pretty. Don't be surprised if you have a little depression after the wedding is over. I had some trouble with that. It was a year of excitement, then pouf....over. Such a let down. They didn't want me to go on the honeymoon....can you imagine?!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 > > >> > >> > > joyce> > > wishing you the best of luck for the 14th.> > > i will be crossing my fingers and praying> > > that it all goes smoothly without incident.> > >> > > may> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi Joyce, All the Best! Irene ---- Original Message ---- To: Breathe-Support Sent: Sun, 13 Apr 2008 12:02 am Subject: Re: Re: joyce - good luck Joyce you are a mess... LOL sleep well Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." May, Yes, I will keep using Flolan after the hospital stay. One of the things that they will do is another heart cath to measure pressures to see if it is down from the current dosage. They will then decide whether to increase dosage or not. They are going to insert a Hickman Catheter in my chest to replace the picc line in my arm. I will be glad to get that thing out of my arm. It is so sore because I sleep on that side. I have been on antibiotics because it was looking infected. It has been in there too long. Past time to move it. I am not looking forward to that or any of it! Yes, it will good to get a break from mixing meds, etc. Not hardly worth the trade off, however. I love your daughter's name. So pretty. Don't be surprised if you have a little depression after the wedding is over. I had some trouble with that. It was a year of excitement, then pouf....over. Such a let down. They didn't want me to go on the honeymoon....can you imagine?! 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 > > > > > > > > > joyce > > > wishing you the best of luck for the 14th. > > > i will be crossing my fingers and praying > > > that it all goes smoothly without incident. > > > > > > may > > > > > > Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Joyce...God speed friend, you are in my prayers but especially tomorrow! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck May, How sweet of you to remember. I am nervous, even a little scared....o.k. a lot scared! I have to be ready at 9:00 a.m. Monday, but they will call me when they have my room ready. Don't know when surgeries, etc. are going to be. They have to get my blood at the right levels before they can do anythng. That means lots of sticks, you know. I have not been sleeping well. Keep playing every scenerio over in my head. I am enjoying hearing about the wedding. It is such a special time. Enjoy! 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>> > joyce> wishing you the best of luck for the 14th.> i will be crossing my fingers and praying > that it all goes smoothly without incident.> > may> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Joyce...butting in here with you and May...... WHEN do you ever (is qualify the word? or accept?) in home nursing to help w/ Flolan? Of course I only know what you write about the problems....but surely a nurse could help! I WANT HELP FOR YOU...DAMNIT! You will go through this ok, I feel it in my bones. Love ya Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck May, Yes, I will keep using Flolan after the hospital stay. One of the things that they will do is another heart cath to measure pressures to see if it is down from the current dosage. They will then decide whether to increase dosage or not. They are going to insert a Hickman Catheter in my chest to replace the picc line in my arm. I will be glad to get that thing out of my arm. It is so sore because I sleep on that side. I have been on antibiotics because it was looking infected. It has been in there too long. Past time to move it. I am not looking forward to that or any of it! Yes, it will good to get a break from mixing meds, etc. Not hardly worth the trade off, however. I love your daughter's name. So pretty. Don't be surprised if you have a little depression after the wedding is over. I had some trouble with that. It was a year of excitement, then pouf....over. Such a let down. They didn't want me to go on the honeymoon....can you imagine?! 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 > > >> > >> > > joyce> > > wishing you the best of luck for the 14th.> > > i will be crossing my fingers and praying> > > that it all goes smoothly without incident.> > >> > > may> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hello Joyce, all my best wishes for your new treatment. I also have a hickman line it was no problem putting it in. I had tried Floland but a nurse was slow in changing the line and i had a bad reaction, so they switched to Remodulin, which has a longer 1/2 life. I have 30 minutes before withdrawal kicks in. We have to change ever other day and the procedure can be overwhelming, but you do get better at it as time goes on. I have been on Remodulin since Jan08. It is in for life. (sigh) But it helps a little and every bit helps. I am sorry you had trouble with Flolan, is that the hickman you are getting tomorrow?My most positive thoughts are with you!! Re: joyce - good luck Sher, As far as we have been told, there is no nurse help approved to assist in the treatment with Flolan. They told us that they had patients as young as 15 and old as 82 doing it themselves. Well, it is not that easy, let me tell you. Insurance paid for a home health nurse to train us to do sterile dressings, but that was 3 visits. Nurses came several times to train us to mix and administer the medicine. Then we were on our own. Hasn't been fool proof! It is just by the grace of God that I am still alive. It has been a fiasco at times. 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 > > > >> > > >> > > > joyce> > > > wishing you the best of luck for the 14th.> > > > i will be crossing my fingers and praying> > > > that it all goes smoothly without incident.> > > >> > > > may> > > >> > >> >> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Joyce, I just feel sick that you are going through this, can you never get a break? I hope that there is something they can do to get this bleeding under control. Please know that I am praying as is everyone I could think of to ask! Love and hugs, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: joyce - good luck Sher, I appreciate your prayers and your help along the way. Your advice about "letting go" has had to become my very close friend. If I had not learned to do that, I would have grieved myself to death. Thank you for that. I am having an awful day today. Nose bleeding, nonstop..... even have an eye bleeding. I can't imagine what will happen when they get out thier sharp instruments. This is miserable. I am having to wear the mask and breathe through my mouth because both nostrils are stuffed with toilet paper. Hey, at least it is not my panties, like Lou! 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 > >> > > > joyce> > wishing you the best of luck for the 14th.> > i will be crossing my fingers and praying > > that it all goes smoothly without incident.> > > > may> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi, How ya doing today ? we've been on the porch watching the humming birds. Wish you could see them. Right now they are trying to run each other off. Funny. Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Joyce,I just feel sick that you are going through this, can you never get a break? I hope that there is something they can do to get this bleeding under control.Please know that I am praying as is everyone I could think of to ask!Love and hugs, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: joyce - good luckSher,I appreciate your prayers and your help along the way. Your advice about "letting go" has had to become my very close friend. If I had not learned to do that, I would have grieved myself to death. Thank you for that. I am having an awful day today. Nose bleeding, nonstop..... even have an eye bleeding. I can't imagine what will happen when they get out thier sharp instruments. This is miserable. I am having to wear the mask and breathe through my mouth because both nostrils are stuffed with toilet paper. Hey, at least it is not my panties, like Lou! 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 > >> > > > joyce> > wishing you the best of luck for the 14th.> > i will be crossing my fingers and praying > > that it all goes smoothly without incident.> > > > may> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi Joyce, I Hope you'll feel better soon and a Speedy Recovery! I Hope they'll be able to bring the bleeding under control. I'll be thinking of you, as you know I'm going in the big house for 10 days. Irene ---- Original Message ---- To: Breathe-Support Sent: Sun, 13 Apr 2008 5:09 pm Subject: Re: Re: joyce - good luck Hi, How ya doing today ? we've been on the porch watching the humming birds. Wish you could see them. Right now they are trying to run each other off. Funny. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Joyce, I just feel sick that you are going through this, can you never get a break? I hope that there is something they can do to get this bleeding under control. Please know that I am praying as is everyone I could think of to ask! Love and hugs, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: joyce - good luck Sher, I appreciate your prayers and your help along the way. Your advice about "letting go" has had to become my very close friend. If I had not learned to do that, I would have grieved myself to death. Thank you for that. I am having an awful day today. Nose bleeding, nonstop..... even have an eye bleeding. I can't imagine what will happen when they get out thier sharp instruments. This is miserable. I am having to wear the mask and breathe through my mouth because both nostrils are stuffed with toilet paper. Hey, at least it is not my panties, like Lou! 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 > > > > > > joyce > > wishing you the best of luck for the 14th. > > i will be crossing my fingers and praying > > that it all goes smoothly without incident. > > > > may > > > Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Joyce...yes, I remember reading about what you write here. It's hard for me to imagine how you/Lucian can just "be on your own" with no home help! I know you must dread going back to it after your hospital stay. I wish it would go away... It's for certain sure that God isn't ready for you yet! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck Sher, As far as we have been told, there is no nurse help approved to assist in the treatment with Flolan. They told us that they had patients as young as 15 and old as 82 doing it themselves. Well, it is not that easy, let me tell you. Insurance paid for a home health nurse to train us to do sterile dressings, but that was 3 visits. Nurses came several times to train us to mix and administer the medicine. Then we were on our own. Hasn't been fool proof! It is just by the grace of God that I am still alive. It has been a fiasco at times. 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 > > > >> > > >> > > > joyce> > > > wishing you the best of luck for the 14th.> > > > i will be crossing my fingers and praying> > > > that it all goes smoothly without incident.> > > >> > > > may> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Oh Joyce! DAMNIT! DAMNIT! I don't know how you even have the energy to post to us but so glad you do. Do you know what's causing the bleeding? Have you called the Dr? It sounds so serious Joyce. Bleeding like that and from an eye too is not a common place from which we bleed! Oh go ahead...wrap those new panties around your head and tuck them into your nostrils. I'll bet you get a good laugh. Dare you to go to the hospital like that. lol I cannot tell you how I regret this day being so poopie for you. I for one will be glad when you are in the hospital...you need hospital care!! Love and hugs. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck Sher, I appreciate your prayers and your help along the way. Your advice about "letting go" has had to become my very close friend. If I had not learned to do that, I would have grieved myself to death. Thank you for that. I am having an awful day today. Nose bleeding, nonstop.....even have an eye bleeding. I can't imagine what will happen when they get out thier sharp instruments. This is miserable. I am having to wear the mask and breathe through my mouth because both nostrils are stuffed with toilet paper. Hey, at least it is not my panties, like Lou! 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 > >> > > > joyce> > wishing you the best of luck for the 14th.> > i will be crossing my fingers and praying > > that it all goes smoothly without incident.> > > > may> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Oh, Joyce. I am so sorry to hear you are not well. I so hope you are better soon. You certainly deserve a break!! I will definitely be praying for you, too, and hoping for a super speedy gonzales recovery!! CaroJoyce wrote: Sher, I appreciate your prayers and your help along the way. Your advice about "letting go" has had to become my very close friend. If I had not learned to do that, I would have grieved myself to death. Thank you for that. I am having an awful day today. Nose bleeding, nonstop.....even have an eye bleeding. I can't imagine what will happen when they get out thier sharp instruments. This is miserable. I am having to wear the mask and breathe through my mouth because both nostrils are stuffed with toilet paper. Hey, at least it is not my panties, like Lou! 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 > >> > > > joyce> > wishing you the best of luck for the 14th.> > i will be crossing my fingers and praying > > that it all goes smoothly without incident.> > > > may> >> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Joyce, you will also be in my prayers especially tomorrow. Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: joyce - good luckDate: Sun, 13 Apr 2008 15:39:39 -0000 Good luck for tomorrow Love Ze xx> >> > > > joyce> > wishing you the best of luck for the 14th.> > i will be crossing my fingers and praying > > that it all goes smoothly without incident.> > > > may> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Joyce, I am so very sorry that you can't stop the bleeding. I know you must be worried sick ( not to mention inconvenienced and miserable). I am holding you up in prayer and fasting for the next two days and asking God to give you equal measures of comfort and strength. Gwynne was our first miracle this month, I know you will be our second. God bless and keep you- Sarcoid/PF 3/2006 California Re: joyce - good luck Sher, I appreciate your prayers and your help along the way. Your advice about "letting go" has had to become my very close friend. If I had not learned to do that, I would have grieved myself to death. Thank you for that. I am having an awful day today. Nose bleeding, nonstop..... even have an eye bleeding. I can't imagine what will happen when they get out thier sharp instruments. This is miserable. I am having to wear the mask and breathe through my mouth because both nostrils are stuffed with toilet paper. Hey, at least it is not my panties, like Lou! 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 > >> > > > joyce> > wishing you the best of luck for the 14th.> > i will be crossing my fingers and praying > > that it all goes smoothly without incident.> > > > may> >>__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Ok, I'm still digging through the emails and I can't find what exactly happened to Joyce and how she is doing. I was deleteing the trash and inadvertantly deleted some of the inbox, so if someone could catch me up to speed, I'd appreciate it. K central Il.Sher Bauman wrote: Joyce...God speed friend, you are in my prayers but especially tomorrow! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck May, How sweet of you to remember. I am nervous, even a little scared....o.k. a lot scared! I have to be ready at 9:00 a.m. Monday, but they will call me when they have my room ready. Don't know when surgeries, etc. are going to be. They have to get my blood at the right levels before they can do anythng. That means lots of sticks, you know. I have not been sleeping well. Keep playing every scenerio over in my head. I am enjoying hearing about the wedding. It is such a special time. Enjoy! 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>> > joyce> wishing you the best of luck for the 14th.> i will be crossing my fingers and praying > that it all goes smoothly without incident.> > may> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 between 0000-00-00 and 9999-99-99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 K. Joyce is in the hospital for the work she knew had to be done....haven't heard if her surgery went today or will be tomorrow. RE: POSTS..... if you start from the bottom (newest) you will pick up the entire thread....what is in that thread will be up in the oldest posts too. Sometimes I read from oldest to see 'what I missed' anyway... You have a ton of posts to get through. I personally don't have the patience for that many. I'm more familiar w/people/subjects so I go through fairly quickly. But if I'm gone a few days, boy oh boy I'm buried again! Be sure and tell us when you post how Don is, what he's dealing with, what Dr says...etc. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck May, How sweet of you to remember. I am nervous, even a little scared....o.k. a lot scared! I have to be ready at 9:00 a.m. Monday, but they will call me when they have my room ready. Don't know when surgeries, etc. are going to be. They have to get my blood at the right levels before they can do anythng. That means lots of sticks, you know. I have not been sleeping well. Keep playing every scenerio over in my head. I am enjoying hearing about the wedding. It is such a special time. Enjoy! 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>> > joyce> wishing you the best of luck for the 14th.> i will be crossing my fingers and praying > that it all goes smoothly without incident.> > may> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 between 0000-00-00 and 9999-99-99 Quote Link to comment Share on other sites More sharing options...
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