Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Hi friends - I was in the hospital at Kaiser South SF from Thursday to yesterday. I had surgery to put in a feeding tube, which was complicated by a bad cold, the thickening of the mucus from the radiation, and so on. Since I was released Monday afternoon, I have spent literally every minute at either UCSF for radiation and associated treatments, the last at 7:30 this morning, followed by seven hours of chemo back at Kaiser. This is the first time I've sat at my computer since I last posted in the group, and I am attached to a feeding pump which is feeding me through the tube to my stomach. I still cannot eat, although as I heal from the surgery and get over the cold that may improve a little. I have to be on the feeding pump 18 hours a day (obviously impossible for the last two days, but from tomorrow it should be OK), and I pretty much just get off it to go to radiation or other doctor appts. Dr. Li did my feeding tube surgery, and I think he is pretty terrific and very reassuring. And, of course, since he is not Osama bin Laden or Zacarias Moussaoui, he is much more likable than Dr. Umbach! It actually makes me feel better to get to know Dr. Li because so many of my new friends here are going to have him do their bariatric surgery. Everyone here has rooted for me and it makes me feel good to root for you too. I must cut this short as my sister and my girlfriend are here to help me. As I said last time, I don't think I'll be bale to respond personally to all your good wishes, but I will be able to post more from time to time. Thanks - Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 Randy I am just so thankful to read your post. You are still in prayers and with all the possitive thoughts being sent your way. Take care. Donna J.jackpoint_94401 wrote: Hi friends - I was in the hospital at Kaiser South SF from Thursday to yesterday. I had surgery to put in a feeding tube, which was complicated by a bad cold, the thickening of the mucus from the radiation, and so on. Since I was released Monday afternoon, I have spent literally every minute at either UCSF for radiation and associated treatments, the last at 7:30 this morning, followed by seven hours of chemo back at Kaiser. This is the first time I've sat at my computer since I last posted in the group, and I am attached to a feeding pump which is feeding me through the tube to my stomach. I still cannot eat, although as I heal from the surgery and get over the cold that may improve a little. I have to be on the feeding pump 18 hours a day (obviously impossible for the last two days, but from tomorrow it should be OK), and I pretty much just get off it to go to radiation or other doctor appts. Dr. Li did my feeding tube surgery, and I think he is pretty terrific and very reassuring. And, of course, since he is not Osama bin Laden or Zacarias Moussaoui, he is much more likable than Dr. Umbach! It actually makes me feel better to get to know Dr. Li because so many of my new friends here are going to have him do their bariatric surgery. Everyone here has rooted for me and it makes me feel good to root for you too. I must cut this short as my sister and my girlfriend are here to help me. As I said last time, I don't think I'll be bale to respond personally to all your good wishes, but I will be able to post more from time to time. Thanks -RandyDonna JordonDSJordon@... New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Hi Randy. Thank you for the update. All of our prayers and good wishes are going your way. We do understand about not being able to write more on a personal note. I am glad that you do take time to keep us posted on how you are doing. You have become an important part of our family extended here. We do think about you and ask about you when it has been a while since we have hear from you. Ramona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Nice hearing from you Randy..take care of yourself > > Hi friends - > > I was in the hospital at Kaiser South SF from Thursday to yesterday. > I had surgery to put in a feeding tube, which was complicated by a > bad cold, the thickening of the mucus from the radiation, and so on. > Since I was released Monday afternoon, I have spent literally every > minute at either UCSF for radiation and associated treatments, the > last at 7:30 this morning, followed by seven hours of chemo back at > Kaiser. This is the first time I've sat at my computer since I last > posted in the group, and I am attached to a feeding pump which is > feeding me through the tube to my stomach. I still cannot eat, > although as I heal from the surgery and get over the cold that may > improve a little. I have to be on the feeding pump 18 hours a day > (obviously impossible for the last two days, but from tomorrow it > should be OK), and I pretty much just get off it to go to radiation > or other doctor appts. > > Dr. Li did my feeding tube surgery, and I think he is pretty > terrific and very reassuring. And, of course, since he is not Osama > bin Laden or Zacarias Moussaoui, he is much more likable than Dr. > Umbach! It actually makes me feel better to get to know Dr. Li > because so many of my new friends here are going to have him do > their bariatric surgery. Everyone here has rooted for me and it > makes me feel good to root for you too. > > I must cut this short as my sister and my girlfriend are here to > help me. As I said last time, I don't think I'll be bale to respond > personally to all your good wishes, but I will be able to post more > from time to time. > > Thanks - > > Randy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Hi Randy, I'm in awe of your courage and tenacity. That you would even think to post after your recent medical ordeal boggles the mind. You are in my prayers. Love, Sherri jackpoint_94401 wrote: Hi friends - I was in the hospital at Kaiser South SF from Thursday to yesterday. I had surgery to put in a feeding tube, which was complicated by a bad cold, the thickening of the mucus from the radiation, and so on. Since I was released Monday afternoon, I have spent literally every minute at either UCSF for radiation and associated treatments, the last at 7:30 this morning, followed by seven hours of chemo back at Kaiser. This is the first time I've sat at my computer since I last posted in the group, and I am attached to a feeding pump which is feeding me through the tube to my stomach. I still cannot eat, although as I heal from the surgery and get over the cold that may improve a little. I have to be on the feeding pump 18 hours a day (obviously impossible for the last two days, but from tomorrow it should be OK), and I pretty much just get off it to go to radiation or other doctor appts. Dr. Li did my feeding tube surgery, and I think he is pretty terrific and very reassuring. And, of course, since he is not Osama bin Laden or Zacarias Moussaoui, he is much more likable than Dr. Umbach! It actually makes me feel better to get to know Dr. Li because so many of my new friends here are going to have him do their bariatric surgery. Everyone here has rooted for me and it makes me feel good to root for you too. I must cut this short as my sister and my girlfriend are here to help me. As I said last time, I don't think I'll be bale to respond personally to all your good wishes, but I will be able to post more from time to time. Thanks -Randy Get amazing travel prices for air and hotel in one click on Yahoo! FareChase Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 stay positive Krumdawg!! Sounds like your getting back on track and that is truly exciting Subject: UpdateTo: Neurosarcoidosis Date: Wednesday, February 3, 2010, 9:42 AM PC still having issues. My balance is greatly improved. Memory is still tore up. Still fighting depression. O good news almost a year nicotine free. I am weaning off Prednisone the med I love to hate. Through diet I have lost almost 70 lbs of the 100 lbs I gained in the Hospital. adding more cardio but is is hard the combo of Humira, Imuran, and Prednisone sure saps my energy level down. Sorry I have not been on much. I am fightinf to get this PC working properly. May need to save up and buy a new one. I hope to see my North Texas Sarc friends at the Support Group meeting on Feb 6. I hope and pray all my friends out there will be blessed with health and wellness.Greg aka Krumdawg"Now where did I bury that Bone....mmmm? ?" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2010 Report Share Posted February 25, 2010 I asked my kids if they needed to use the " potty " . By the time they were in college they had had enough. " MOM, it's a bathroom " As a mom, it will always be a " potty " to me and the pee pee and poops..... PJ > > > In what way is the sodium/potassium unbalanced? Which one is higher/ > > lower then it should be with adrenal insufficiency? > > I'm not sure, she didn't really specify. Generally when I go to > doctors, they treat me like a kid since I'm still technically in > pediatrics, and I don't get too many in-depth explanations unless I > really dig for them. Instead I get asked if I need to go 'pee-pee' or > if I'm still having 'loose poops.' =) > > > Also Alyssa, did you doc mention using any non-big-gun meds, like > > Lialda, Sulfasalzine, or Rowasa? > > I asked her about that. She said that when inflammation goes on for so > long uncontrolled it can be much harder to bring under control, and > that she didn't think those would be strong enough for me. > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Quote Link to comment Share on other sites More sharing options...
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