Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 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 12, 2008 Report Share Posted April 12, 2008 joyce i suppose one good thing at being in the hospital is that someone else will be doing the flolan for a few days. will you still need this treatment after the surgeries? isn't the description of brave 'being afraid and doing it anyway'. i know you'd rather not have to be brave but i'm sure it will be sooo worth it. i would think a bit of insomnia at this point is totally understandable. the sorest stick i have had so far was from my consultant (pulmonologist) right after i refused her pred. i remember saying to her that it felt like she twisted it. i am starting to look forward to the wedding now. i have been a bit uptight about it. rosanna has been very much in control and not wanting anybody's suggestions and i have learned to let her ask me for what she wants my input into. i have laid awake at night visualising the table plan. surprisingly she said she is interested in seeing what i have come up with. 62 of the people going are just mine and andy's family - mothers, siblings, partners and neices and newphews. the groom has one brother and two aunts. may uip 0606 glasgow, scotland > > > > > > 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 12, 2008 Report Share Posted April 12, 2008 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 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 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 Gayleen/Joyce Flolan was considered medically to be a huge breakthrough and so the researchers were inspired and have been working to find ways to improve it. Flolan was developed by Gilead, which is a pharmaceutical with only 11 products. Here is a bit about them: Gilead seeks to develop products that represent significant advancements over current treatments by offering enhanced modes of delivery; more convenient treatment regimens; improved resistance profiles; reduced side effects; and greater efficacy. Through our own internal research and partnerships with universities, medical research institutions and global pharmaceutical leaders, Gilead is rapidly and efficiently making scientific and clinical advancements that raise the standard for new therapeutics that treat life-threatening diseases. Gilead's primary areas of focus include: antivirals (such as HIV/AIDS and chronic hepatitis), cardiovascular conditions (such as pulmonary arterial hypertension and resistant hypertension) and respiratory diseases (such as influenza and cystic fibrosis). Letairis is also a Gilead product. Remodulin is the first product developed attempting to improve the delivery methods of Flolan. Others are underway and in trials. Remodulin is not as proven through use as Flolan yet but could be a great improvement. Its improvement over Flolan in delivery is as Gayleen described so still not where researchers want to go. However, one thing that seems to have been found is that some who can't tolerate Flolan can tolerate Remodulin and the other way around even though in many ways the medications are quite similar. It is also developed by a small pharmaceutical, United Therapeutics. With both products subcutaneous infusion is preferred over intravenous if used long term. They are both Prostacyclins. Now, of course, I asked what in the world is that and so found out a bit: Prostacyclin is one of the most ubiquitous hormones in the human body. Prostacyclin is produced throughout the body, via an interaction between the endothelial cells that line blood vessel walls and the platelets that float through the blood vessels. Prostacyclin also has an effect throughout the body, principally upon smooth muscle cells that surround blood vessels but also on other endothelial cells and platelets. I guess we all should thank some of the smaller pharmaceuticals who are pursuing specialty products a bit out of the mainstream. Also know that their very existence depends on these products and that means they are working to refine and improve them. Last, it makes the price tag understandable and reasonable. These are companies that spent millions on speculative development and don't have a huge base of other profitable medications to support that development. Personally, I'm so very greatful for these products and for both of you sharing your experiences. We all know we may ultimately need the same. I also look for future improvements that could benefit both of you as some may not be all that far away. There are 31 clinical trials in total underway regarding Prostacyclin in one way or another. Will treatments for PF come from similar research by smaller pharmaceuticals trying to hit their home run? May very well. Who knows. I know for both of you the means of treatment is very difficult to tolerate but I'm sure glad there was some answer out there to help when the milder approaches just weren't enough. We haven't seen you as you've benefitted, Gayleen, but we've all seen Joyce as she went through the initial horror and has had some nightmarish events but more as she has improved. I'm doubt I would have ever had the courage to try. But seeing the two of you makes me think differently toward it, while still knowing its a lousy way to have to get medication. > > > > >> > > > >> > > > > 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 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 Joyce Sorry you're having such an awful day. I know so much emphasis has been on your PAH and the Flolan but I hope you can get some help on the nose bleeding as I know that has to be horrible. Make sure the doctors address it and just because there may be medically more severe issues to deal with don't overlook something like it. I think you best keep your panties where they belong rather than use them like Lou. We don't want a repeat of last time in the big house. I know this will be an awful week but I'm equally convinced you'll return home better with the change in delivery systems on the Flolan and the other things done. > > > > > > > > > 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 Dearest Joyce, I'm so sorry you're having yet another miserable day & here was me hoping you'd be having a right ROYAL lounge-about in preparation for the Big House. I'm trying to think up something for your right ROYAL amusement....maybe a Court Jester or 2 ...a spot of Dame Nellie perhaps... .....hoswe about .....I reckon 'BRAVEHEART" fits the BILL for such a courageous woman as you, HRH, THinking of you for tomorrow, lotsa love n' hugs, GIO> > >> > >> > > 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 Good luck tomorrow Joyce. May God bless you and keep you in the palm of His wonderful healing hand. S > > > > > > > > > > > > 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 > > > > > > > > > > > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml? partner=ZSzeb114_Z\ > SYYYYYYYYAU & utm_id=7922> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Dearest Joyce, all the best for Monday! Geeta Quote Link to comment Share on other sites More sharing options...
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