Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 , You should be so proud of your daughter - she sounds like such a brave, strong, caring young lady. It's so wonderful that she reaches out to others the way she does. I am the wife of a man waiting for his 1st (and hopefully only) new liver and I have begun getting involved with organ donation awareness in my area (New England). Sometimes it seems like such a hard thing to convince people to do, but, then you get a couple of people to sign up and it feels so wonderful! I hope she has a healthy road from now on. Thanks for sharing your story with us, Gracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 , That message made an impact on me so very much and, of course, made me cry. Going through all of that pain and suffering and probably not ever having one moment of just being child. This young lady is an inspiration to me definitely and probably everyone who has read your post. There is something I feel I should say, but I am, for the first time, speechless. Hugs, Biddy introduction >Hi my name is my daughter Barbara and I would like to introduce >ourselves.We live in Winnipeg, Manitoba Canada. Barb is 17 yr old. When >Barb was 14 months old she started having bloody diarrhea, at 2yrs old >during a routine check up the Dr found her liver to be very enlarged. At >that point we were hospitalized for 3 weeks. After many tests, scopes >etc. to rule out many possibilities i.e.; spina bifida, aids and cancer >we left the hospital with a diagnosis of some type of bowel disease and >some type of liver disease. Over the next 2 years she was on an >assortment of drugs which did nothing to help the bowel or liver, >prednisone, steroid enemas, imuran, asacol etc.(she ended up constantly >on prednisone for 9 yrs) At 4 yrs old we were sent to Sick Kids >hospital in Toronto for hope of a diagnosis. PSC and some kind of bowel >disease was what we were told.6 years of bloody diarrhea 10 - 12 times a >day and the Docs tellus they are pretty sure it is Ulcerative colitis >and that she is at risk of Colon Cancer and or perforation of the >bowel.Brarb is 101/2 when she goes through 4 surgeries to have her colon >removed and a pelvic pouch made out of small intestine and then attached >back to her rectum.Other than some bouts with pouchitis Barb has her >best quality of life for the next4 yrs. Now she is 14yrs and starting to >vomit great amounts of blood after many surgeries and hospital stays for >bleeding from the varicies in her esophagus, we are sent to University >hospital in London, Ontario for an assessment for a liver Transplant. >She is ABpos and is put on the list Aug 96. After 1 dry run she gets her >first liver in March97. She is their star patient , off the respirator >and out of ICU in 14 hours, Out of the hospital in under a week.4months >later back at home she gets very ill, they treat her with mega doses of >gancyclover thinking its CMV that wont respond to Meds. After 1 month in >hospital we are sent back to University Hospital in London. Within a day >they diagnose her with hepatic Artery Thrombosis and tell her she needs >a second transoplant.(if you think its bad being told you need a liver >TX the first time try hearing it the second time) at 15 yrs old Barb >again has to make a life and death decision. She decides to be listed >again. Barb is very ill and depressed for the next few months.On Dec 1st >1997 Barb gets her second Liver, again I am by myself in london sending >her off to the operating room not knowing if I will see her again. After >a slower recovery we come home in time for the New Year. It is now >almost 2 yrs later and Barb has had her ups and downs (cmv , kidney >damage etc.) but we have not had any hospital stays. Barb has managed to >make it through only 1 semester of school and working for Mcs for >3 months because she is always catching viruses that wipe her out .She >has had terrible sinus infections that send her to bed for weeks they >finally did surgery and drained them a couple of weeks ago. Barb has >gotten very involved with the organ donor office here. She has spoken to >High School classes about signing their donor cards, she has spoken on >the radio and TV and just finished helping make some Public Service >announcements with our local cable co. Sorry for making this intro so >long, I did not even get to emotions. Barb is a very loving , mature >wonderful young woman whom I have the utmost respect and love for. >Transplantation is a treatment not a cure and as long as we keep that in >mind Barb and I will continue to get through life . Barb would like me >to share her private email add with any kids, or young adults that would >like some support or someone their own age to ask questions to or just >for a new pen pal. Her ADD is barbiesocute@.... Barb has a very >positive attitude and has already supported other teenagers in their >facing a transplant. Thanks for listening. > > >------------------------------------------------------------------------ >Get A 0% Intro APR Visa with Instant Approval right now a >GetSmart.com at http://clickhere./click/1270 > > >-- Check out your eGroup's private Chat room >-- /ChatPage?listName= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 , That message made an impact on me so very much and, of course, made me cry. Going through all of that pain and suffering and probably not ever having one moment of just being child. This young lady is an inspiration to me definitely and probably everyone who has read your post. There is something I feel I should say, but I am, for the first time, speechless. Hugs, Biddy introduction >Hi my name is my daughter Barbara and I would like to introduce >ourselves.We live in Winnipeg, Manitoba Canada. Barb is 17 yr old. When >Barb was 14 months old she started having bloody diarrhea, at 2yrs old >during a routine check up the Dr found her liver to be very enlarged. At >that point we were hospitalized for 3 weeks. After many tests, scopes >etc. to rule out many possibilities i.e.; spina bifida, aids and cancer >we left the hospital with a diagnosis of some type of bowel disease and >some type of liver disease. Over the next 2 years she was on an >assortment of drugs which did nothing to help the bowel or liver, >prednisone, steroid enemas, imuran, asacol etc.(she ended up constantly >on prednisone for 9 yrs) At 4 yrs old we were sent to Sick Kids >hospital in Toronto for hope of a diagnosis. PSC and some kind of bowel >disease was what we were told.6 years of bloody diarrhea 10 - 12 times a >day and the Docs tellus they are pretty sure it is Ulcerative colitis >and that she is at risk of Colon Cancer and or perforation of the >bowel.Brarb is 101/2 when she goes through 4 surgeries to have her colon >removed and a pelvic pouch made out of small intestine and then attached >back to her rectum.Other than some bouts with pouchitis Barb has her >best quality of life for the next4 yrs. Now she is 14yrs and starting to >vomit great amounts of blood after many surgeries and hospital stays for >bleeding from the varicies in her esophagus, we are sent to University >hospital in London, Ontario for an assessment for a liver Transplant. >She is ABpos and is put on the list Aug 96. After 1 dry run she gets her >first liver in March97. She is their star patient , off the respirator >and out of ICU in 14 hours, Out of the hospital in under a week.4months >later back at home she gets very ill, they treat her with mega doses of >gancyclover thinking its CMV that wont respond to Meds. After 1 month in >hospital we are sent back to University Hospital in London. Within a day >they diagnose her with hepatic Artery Thrombosis and tell her she needs >a second transoplant.(if you think its bad being told you need a liver >TX the first time try hearing it the second time) at 15 yrs old Barb >again has to make a life and death decision. She decides to be listed >again. Barb is very ill and depressed for the next few months.On Dec 1st >1997 Barb gets her second Liver, again I am by myself in london sending >her off to the operating room not knowing if I will see her again. After >a slower recovery we come home in time for the New Year. It is now >almost 2 yrs later and Barb has had her ups and downs (cmv , kidney >damage etc.) but we have not had any hospital stays. Barb has managed to >make it through only 1 semester of school and working for Mcs for >3 months because she is always catching viruses that wipe her out .She >has had terrible sinus infections that send her to bed for weeks they >finally did surgery and drained them a couple of weeks ago. Barb has >gotten very involved with the organ donor office here. She has spoken to >High School classes about signing their donor cards, she has spoken on >the radio and TV and just finished helping make some Public Service >announcements with our local cable co. Sorry for making this intro so >long, I did not even get to emotions. Barb is a very loving , mature >wonderful young woman whom I have the utmost respect and love for. >Transplantation is a treatment not a cure and as long as we keep that in >mind Barb and I will continue to get through life . Barb would like me >to share her private email add with any kids, or young adults that would >like some support or someone their own age to ask questions to or just >for a new pen pal. Her ADD is barbiesocute@.... Barb has a very >positive attitude and has already supported other teenagers in their >facing a transplant. Thanks for listening. > > >------------------------------------------------------------------------ >Get A 0% Intro APR Visa with Instant Approval right now a >GetSmart.com at http://clickhere./click/1270 > > >-- Check out your eGroup's private Chat room >-- /ChatPage?listName= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 1999 Report Share Posted November 9, 1999 , That message made an impact on me so very much and, of course, made me cry. Going through all of that pain and suffering and probably not ever having one moment of just being child. This young lady is an inspiration to me definitely and probably everyone who has read your post. There is something I feel I should say, but I am, for the first time, speechless. Hugs, Biddy introduction >Hi my name is my daughter Barbara and I would like to introduce >ourselves.We live in Winnipeg, Manitoba Canada. Barb is 17 yr old. When >Barb was 14 months old she started having bloody diarrhea, at 2yrs old >during a routine check up the Dr found her liver to be very enlarged. At >that point we were hospitalized for 3 weeks. After many tests, scopes >etc. to rule out many possibilities i.e.; spina bifida, aids and cancer >we left the hospital with a diagnosis of some type of bowel disease and >some type of liver disease. Over the next 2 years she was on an >assortment of drugs which did nothing to help the bowel or liver, >prednisone, steroid enemas, imuran, asacol etc.(she ended up constantly >on prednisone for 9 yrs) At 4 yrs old we were sent to Sick Kids >hospital in Toronto for hope of a diagnosis. PSC and some kind of bowel >disease was what we were told.6 years of bloody diarrhea 10 - 12 times a >day and the Docs tellus they are pretty sure it is Ulcerative colitis >and that she is at risk of Colon Cancer and or perforation of the >bowel.Brarb is 101/2 when she goes through 4 surgeries to have her colon >removed and a pelvic pouch made out of small intestine and then attached >back to her rectum.Other than some bouts with pouchitis Barb has her >best quality of life for the next4 yrs. Now she is 14yrs and starting to >vomit great amounts of blood after many surgeries and hospital stays for >bleeding from the varicies in her esophagus, we are sent to University >hospital in London, Ontario for an assessment for a liver Transplant. >She is ABpos and is put on the list Aug 96. After 1 dry run she gets her >first liver in March97. She is their star patient , off the respirator >and out of ICU in 14 hours, Out of the hospital in under a week.4months >later back at home she gets very ill, they treat her with mega doses of >gancyclover thinking its CMV that wont respond to Meds. After 1 month in >hospital we are sent back to University Hospital in London. Within a day >they diagnose her with hepatic Artery Thrombosis and tell her she needs >a second transoplant.(if you think its bad being told you need a liver >TX the first time try hearing it the second time) at 15 yrs old Barb >again has to make a life and death decision. She decides to be listed >again. Barb is very ill and depressed for the next few months.On Dec 1st >1997 Barb gets her second Liver, again I am by myself in london sending >her off to the operating room not knowing if I will see her again. After >a slower recovery we come home in time for the New Year. It is now >almost 2 yrs later and Barb has had her ups and downs (cmv , kidney >damage etc.) but we have not had any hospital stays. Barb has managed to >make it through only 1 semester of school and working for Mcs for >3 months because she is always catching viruses that wipe her out .She >has had terrible sinus infections that send her to bed for weeks they >finally did surgery and drained them a couple of weeks ago. Barb has >gotten very involved with the organ donor office here. She has spoken to >High School classes about signing their donor cards, she has spoken on >the radio and TV and just finished helping make some Public Service >announcements with our local cable co. Sorry for making this intro so >long, I did not even get to emotions. Barb is a very loving , mature >wonderful young woman whom I have the utmost respect and love for. >Transplantation is a treatment not a cure and as long as we keep that in >mind Barb and I will continue to get through life . Barb would like me >to share her private email add with any kids, or young adults that would >like some support or someone their own age to ask questions to or just >for a new pen pal. Her ADD is barbiesocute@.... Barb has a very >positive attitude and has already supported other teenagers in their >facing a transplant. Thanks for listening. > > >------------------------------------------------------------------------ >Get A 0% Intro APR Visa with Instant Approval right now a >GetSmart.com at http://clickhere./click/1270 > > >-- Check out your eGroup's private Chat room >-- /ChatPage?listName= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Aubrey, Thank you so much, it's always nice to hear from those that have already been through this. It gives all of us something to look forward to. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Hi Aubrey, welcome to our group and congratulations on your successful transplant. Hope you enjoy the group as much as I do. Liz (husband Jim, dx PSC '98) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Hi Aubrey, welcome to our group and congratulations on your successful transplant. Hope you enjoy the group as much as I do. Liz (husband Jim, dx PSC '98) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 The blessing is, you have realized you need this space at a young age. I kept trying and trying, thinking it would get better. As one of my friends put it, it was like Lucy and Charlie Brown. I was Charlie Brown always thinking that this time I am gonna kick that football. I think we all hit our breaking point and finally realize that we can't do this anymore. I felt like you did - I had to get out for my mental health. I am a reasonably stable and happy person in every aspect of my life but when it comes to her, I constantly feel like the scared little 10 year old whose mother is threatening to kill herself because I don't appreciate her enough. It won't be easy to put the distance between the two of you --they have such a great way of pulling us back in. So, be strong and know that you're not alone! > > I am a 27 yr old female who has just come to the realization that in > order for me to have my own life I have to stop trying to help or save > my borderline mother. I have spent the last 5 years of my life trying > to help her in one way shape or form and for what to be told I am > controlling and that everything is my fault. > > I have recently chosen to take back my life and put distance and > boundaries between me and my mother. For my health and sanity! I am > doing okay with it some days are worse than others and of course my > mother thinks I have completely abandoned her and turned into a cold > individual. > > I am hoping to connect to others who are dealing with the same trials > and issues that I am dealing with a Borderline parent. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 The blessing is, you have realized you need this space at a young age. I kept trying and trying, thinking it would get better. As one of my friends put it, it was like Lucy and Charlie Brown. I was Charlie Brown always thinking that this time I am gonna kick that football. I think we all hit our breaking point and finally realize that we can't do this anymore. I felt like you did - I had to get out for my mental health. I am a reasonably stable and happy person in every aspect of my life but when it comes to her, I constantly feel like the scared little 10 year old whose mother is threatening to kill herself because I don't appreciate her enough. It won't be easy to put the distance between the two of you --they have such a great way of pulling us back in. So, be strong and know that you're not alone! > > I am a 27 yr old female who has just come to the realization that in > order for me to have my own life I have to stop trying to help or save > my borderline mother. I have spent the last 5 years of my life trying > to help her in one way shape or form and for what to be told I am > controlling and that everything is my fault. > > I have recently chosen to take back my life and put distance and > boundaries between me and my mother. For my health and sanity! I am > doing okay with it some days are worse than others and of course my > mother thinks I have completely abandoned her and turned into a cold > individual. > > I am hoping to connect to others who are dealing with the same trials > and issues that I am dealing with a Borderline parent. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 The blessing is, you have realized you need this space at a young age. I kept trying and trying, thinking it would get better. As one of my friends put it, it was like Lucy and Charlie Brown. I was Charlie Brown always thinking that this time I am gonna kick that football. I think we all hit our breaking point and finally realize that we can't do this anymore. I felt like you did - I had to get out for my mental health. I am a reasonably stable and happy person in every aspect of my life but when it comes to her, I constantly feel like the scared little 10 year old whose mother is threatening to kill herself because I don't appreciate her enough. It won't be easy to put the distance between the two of you --they have such a great way of pulling us back in. So, be strong and know that you're not alone! > > I am a 27 yr old female who has just come to the realization that in > order for me to have my own life I have to stop trying to help or save > my borderline mother. I have spent the last 5 years of my life trying > to help her in one way shape or form and for what to be told I am > controlling and that everything is my fault. > > I have recently chosen to take back my life and put distance and > boundaries between me and my mother. For my health and sanity! I am > doing okay with it some days are worse than others and of course my > mother thinks I have completely abandoned her and turned into a cold > individual. > > I am hoping to connect to others who are dealing with the same trials > and issues that I am dealing with a Borderline parent. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 good for you, and at such a young age to find this out !! Jackie I am a 27 yr old female who has just come to the realization that in order for me to have my own life I have to stop trying to help or save my borderline mother. I have spent the last 5 years of my life trying to help her in one way shape or form and for what to be told I am controlling and that everything is my fault. I have recently chosen to take back my life and put distance and boundaries between me and my mother. For my health and sanity! I am doing okay with it some days are worse than others and of course my mother thinks I have completely abandoned her and turned into a cold individual. I am hoping to connect to others who are dealing with the same trials and issues that I am dealing with a Borderline parent. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 good for you, and at such a young age to find this out !! Jackie I am a 27 yr old female who has just come to the realization that in order for me to have my own life I have to stop trying to help or save my borderline mother. I have spent the last 5 years of my life trying to help her in one way shape or form and for what to be told I am controlling and that everything is my fault. I have recently chosen to take back my life and put distance and boundaries between me and my mother. For my health and sanity! I am doing okay with it some days are worse than others and of course my mother thinks I have completely abandoned her and turned into a cold individual. I am hoping to connect to others who are dealing with the same trials and issues that I am dealing with a Borderline parent. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 good for you, and at such a young age to find this out !! Jackie I am a 27 yr old female who has just come to the realization that in order for me to have my own life I have to stop trying to help or save my borderline mother. I have spent the last 5 years of my life trying to help her in one way shape or form and for what to be told I am controlling and that everything is my fault. I have recently chosen to take back my life and put distance and boundaries between me and my mother. For my health and sanity! I am doing okay with it some days are worse than others and of course my mother thinks I have completely abandoned her and turned into a cold individual. I am hoping to connect to others who are dealing with the same trials and issues that I am dealing with a Borderline parent. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2012 Report Share Posted August 16, 2012 Hey sorry so I did things a little backwards.. heh My name is Marissa Mack aka MJ or mjays My father was recently diagnosed with Stills [official date August 1st 2012] His rash started in may and they treated it with a prednisone pack because they thought it was poison ivy or other ivy. When it came back again they gave him another zip pack of prednisone.On the morning of July 3rd my dad's left foot hurt, bruised like.. but not enough to stop him from going to work. Mid-morning his foot pained him more and he stopped work and iced it. After 20 minutes of resting the pain didn't let up so he went into the clinic at his work. The dr there did not see anything but decided to take X-rays. The X-rays showed nothing and they sent him home to rest. The next morning when he woke he felt like he was buried in sand and could not move. After several minutes of figuring out if he was dreaming/hallucinating he woke my mother to help him get out of bed. That day he spent in pain while we continued with the Fourth of July festivities. At 7am July 5th, he felt that the amount of pain and the inability to walk was merit to go to the ER. He was admitted and they immediately started him on Hydrocodon and very high doses of prednazone. They did several blood tests and sent him home on Tuesday July 10th with pain medication and prednisone. On Thursday July 12th, He saw a rheumatologist for the first time and it was at that time that they took 17 vials of blood to run 30 different tests to rule out everything. He spent the weekend at home suffering with a lot of pain and finally decided to go back in to the hospital Sunday July 15th at 10pm. This time they took a CT scan and spinal tap, they also took a skin sample on a bug bite and some fluid from his knee but nothing came back positive. During this whole time he argued that Prednisone was making his symptoms worse though the drs disagreed. At some point they all agreed overall his problem fit Adult Onset Stills and started daily Kineret. So thats pretty much where we are now... working on figuring out if his liver problem is a result from all the medication or from Stills. Currently he is only on a daily shot of Kineret and over the counter Ibuprofen for his on going headaches. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2012 Report Share Posted August 16, 2012 MJ (I have a cousin I call the same thing!) I have had Stills for at least the majority of the past 10 years, but may have had it since 1990, but my military medical records did the vanishing act. I also am on Kineret which has given me back some of what I lost and also have high liver functions. I never did drugs and although I love a good beer I rarely drink. My liver Dr has me on 2000 units of prescription Vitamin E and my counts have come way down. I hope the best for your Dad. As a Father I know how brutal this can be to a family. Luckily for me I have a great, strong wife, 2 outstanding sons (oldest turns 14 tomorrow (Chris) and the youngest just turned 11 (on) and great parents and in-laws. Find the best Dr's you can get and be aggressive with this monster of a disease! Best of luck, Kirk. > ** > > > Hey sorry so I did things a little backwards.. heh > My name is Marissa Mack aka MJ or mjays My father was recently diagnosed > with Stills [official date August 1st 2012] His rash started in may and > they treated it with a prednisone pack because they thought it was > poison ivy or other ivy. When it came back again they gave him another > zip pack of prednisone.On the morning of July 3rd my dad's left foot > hurt, bruised like.. but not enough to stop him from going to work. > Mid-morning his foot pained him more and he stopped work and iced it. > After 20 minutes of resting the pain didn't let up so he went into the > clinic at his work. The dr there did not see anything but decided to > take X-rays. The X-rays showed nothing and they sent him home to rest. > The next morning when he woke he felt like he was buried in sand and > could not move. After several minutes of figuring out if he was > dreaming/hallucinating he woke my mother to help him get out of bed. > That day he spent in pain while we continued with the Fourth of July > festivities. At 7am July 5th, he felt that the amount of pain and the > inability to walk was merit to go to the ER. He was admitted and they > immediately started him on Hydrocodon and very high doses of prednazone. > They did several blood tests and sent him home on Tuesday July 10th with > pain medication and prednisone. On Thursday July 12th, He saw a > rheumatologist for the first time and it was at that time that they took > 17 vials of blood to run 30 different tests to rule out everything. He > spent the weekend at home suffering with a lot of pain and finally > decided to go back in to the hospital Sunday July 15th at 10pm. This > time they took a CT scan and spinal tap, they also took a skin sample on > a bug bite and some fluid from his knee but nothing came back positive. > During this whole time he argued that Prednisone was making his symptoms > worse though the drs disagreed. At some point they all agreed overall > his problem fit Adult Onset Stills and started daily Kineret. > So thats pretty much where we are now... working on figuring out if his > liver problem is a result from all the medication or from Stills. > Currently he is only on a daily shot of Kineret and over the counter > Ibuprofen for his on going headaches. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2012 Report Share Posted August 17, 2012 Welcome, MJ. This story sounds familiar...to many here, I am sure. Sent from my Verizon Wireless Droid Introduction Hey sorry so I did things a little backwards.. heh My name is Marissa Mack aka MJ or mjays My father was recently diagnosed with Stills [official date August 1st 2012] His rash started in may and they treated it with a prednisone pack because they thought it was poison ivy or other ivy. When it came back again they gave him another zip pack of prednisone.On the morning of July 3rd my dad's left foot hurt, bruised like.. but not enough to stop him from going to work. Mid-morning his foot pained him more and he stopped work and iced it. After 20 minutes of resting the pain didn't let up so he went into the clinic at his work. The dr there did not see anything but decided to take X-rays. The X-rays showed nothing and they sent him home to rest. The next morning when he woke he felt like he was buried in sand and could not move. After several minutes of figuring out if he was dreaming/hallucinating he woke my mother to help him get out of bed. That day he spent in pain while we continued with the Fourth of July festivities. At 7am July 5th, he felt that the amount of pain and the inability to walk was merit to go to the ER. He was admitted and they immediately started him on Hydrocodon and very high doses of prednazone. They did several blood tests and sent him home on Tuesday July 10th with pain medication and prednisone. On Thursday July 12th, He saw a rheumatologist for the first time and it was at that time that they took 17 vials of blood to run 30 different tests to rule out everything. He spent the weekend at home suffering with a lot of pain and finally decided to go back in to the hospital Sunday July 15th at 10pm. This time they took a CT scan and spinal tap, they also took a skin sample on a bug bite and some fluid from his knee but nothing came back positive. During this whole time he argued that Prednisone was making his symptoms worse though the drs disagreed. At some point they all agreed overall his problem fit Adult Onset Stills and started daily Kineret. So thats pretty much where we are now... working on figuring out if his liver problem is a result from all the medication or from Stills. Currently he is only on a daily shot of Kineret and over the counter Ibuprofen for his on going headaches. Quote Link to comment Share on other sites More sharing options...
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