Guest guest Posted May 27, 2008 Report Share Posted May 27, 2008 our thoughts and prayers are with you and the entire family. rachel and alex > > Posted by B at http://bbfranson.blogspot.com/2008/05/gift.html> > 10:26 PM > > My standard reply to, " How's ? " has been, " He's breathing. " , but I > can't even say that anymore. They tried to take him off the ventilator, but > he requires so much pain medication he's not breathing on his own. It's best > that he's heavily sedated. I even prefer him that way for a while. > > It was as if a warm blanket was put around my shoulders, and toasted me from > the inside out. The feeling lasted for only a minute, but the imprint > lasted; I've been calm most of the day. > > The feeling right before was diagnosed with cancer was much stronger > than this morning's, but definitely along that same line. It's a warning; a > " Hold on to your panties; I'm in charge; it's going to be a rough ride. " > message from God. Most importantly, it's a strengthening; a " I love you, I'm > here, it will work out. " message; a precious gift before any crisis. > > So, what to expect? will likely be taken off the ventilator in the > morning. He'll have to deal with pain, and heaven only knows what else is > coming. I guess it doesn't matter if I know or not; we're strapped in tight > for the ride, and there's no sense in jumping out now...... as if we have > any choice. > > http://bbfranson.blogspot.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 , I looked up platlet count on the web they say " If platelet levels fall below 20,000 per microliter, spontaneous bleeding may occur and is considered a life-threatening risk " Was down as far as 6000? 's count must have at least rebounded to a much higher level if in August it dropped 25,000 in one week. Regardless we will be praying for him. Ian (52) PSC 89 Some of you may remember at the end of July, my husband, , was put in the hospital with a platelet count of 6000. He was diagnosed with another autoimmune disease called ITP (alongside his UC and PSC). They feel that is not related to the liver disease, however, Asacol--taken for UC--has a less than 1% chance of causing ITP. He was released with a steriod treatment to bring the platelets back up and removed from Asacol for good. and I went to the hematologist on Friday, 8/15. His platelet count has dropped 25,000 from the prior week. His steroid treatment had failed to work. On Friday, 8/22, for the next 3 weeks (last one is 9/12) he will be doing infusions of Rituxan.The medicine being used is also used as a chemotherapy drug in cancer patients—so in essence they call this an immuntheropy, since it is for his immune system. The treatments start first thing in the morning and will last around 6 hours. They come with a very high risk of allergic reactions during the infusion. They will treat those reactions as they come, but will continue to give the treatments.If these treatments are not effective, he will have to have his spleen removed. While this comes with a 70% success ratio, it is one of the last options he has. Please pray that these treatments work as this new disease has added a lot more stress on our family on top of being diagnosed with PSC in January and UC in April. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 , I looked up platlet count on the web they say " If platelet levels fall below 20,000 per microliter, spontaneous bleeding may occur and is considered a life-threatening risk " Was down as far as 6000? 's count must have at least rebounded to a much higher level if in August it dropped 25,000 in one week. Regardless we will be praying for him. Ian (52) PSC 89 Some of you may remember at the end of July, my husband, , was put in the hospital with a platelet count of 6000. He was diagnosed with another autoimmune disease called ITP (alongside his UC and PSC). They feel that is not related to the liver disease, however, Asacol--taken for UC--has a less than 1% chance of causing ITP. He was released with a steriod treatment to bring the platelets back up and removed from Asacol for good. and I went to the hematologist on Friday, 8/15. His platelet count has dropped 25,000 from the prior week. His steroid treatment had failed to work. On Friday, 8/22, for the next 3 weeks (last one is 9/12) he will be doing infusions of Rituxan.The medicine being used is also used as a chemotherapy drug in cancer patients—so in essence they call this an immuntheropy, since it is for his immune system. The treatments start first thing in the morning and will last around 6 hours. They come with a very high risk of allergic reactions during the infusion. They will treat those reactions as they come, but will continue to give the treatments.If these treatments are not effective, he will have to have his spleen removed. While this comes with a 70% success ratio, it is one of the last options he has. Please pray that these treatments work as this new disease has added a lot more stress on our family on top of being diagnosed with PSC in January and UC in April. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Good luck with the treatment. Tell him to drink lots of water beforehand. I used to get Remicade infusions and it helped them set it up when I was properly hydrated. I hope it helps and that he doesn't suffer an allergic reaction. Ruth UC - 2000, Colectomy - 2007, PSC - 2008 > > Some of you may remember at the end of July, my husband, , was > put in the hospital with a platelet count of 6000. He was diagnosed > with another autoimmune disease called ITP (alongside his UC and > PSC). They feel that is not related to the liver disease, however, > Asacol--taken for UC--has a less than 1% chance of causing ITP. He > was released with a steriod treatment to bring the platelets back up > and removed from Asacol for good. > > and I went to the hematologist on Friday, 8/15. His platelet > count has dropped 25,000 from the prior week. His steroid treatment > had failed to work. On Friday, 8/22, for the next 3 weeks (last one > is 9/12) he will be doing infusions of Rituxan. > > The medicine being used is also used as a chemotherapy drug in cancer > patients—so in essence they call this an immuntheropy, since it is > for his immune system. The treatments start first thing in the > morning and will last around 6 hours. They come with a very high > risk of allergic reactions during the infusion. They will treat > those reactions as they come, but will continue to give the > treatments. > > If these treatments are not effective, he will have to have his > spleen removed. While this comes with a 70% success ratio, it is one > of the last options he has. > > Please pray that these treatments work as this new disease has added > a lot more stress on our family on top of being diagnosed with PSC in > January and UC in April. > Quote Link to comment Share on other sites More sharing options...
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