Standard of Care question and my story (long) Jill question at end
01/18/04 06:43 PM
I have been a lurker here for a while... as background I am a 29 yr married mother of 18mo twin boys with left side U/C. I just finished Jills book about 15 min ago (thank you it made me feel less alone and was an excellent read). I am fresh out of my 3rd hospital stay for U/C. This time it was 17 days and in addition I was in for a week in November as well.
I have been through 4 GI Drs who didnt take my condition seriously enough over the years. For my last and current Dr I shopped around and choose someone highly recomended by several Drs and personal friends. When I interviewed him I explained that my disease is atypical and described why I had left my previous Dr. He promised to take me seriously.
After I had weaned my sons and was still in a flare I was put on 6MP. I had previously been on Imuran and had achieved remission as I have trouble weaning from steriods. On Dec 8th I began the drug and was told I would be sent for blood work in increments in the future I did not leave with any blood work paperwork. I began calling the Dr with problems and fevers right before the holidays(low grade 101). I was told this was normal for my inflamitory condition. I reminded him that I had been septic before and I was told that that was probably an isolated insident. Christmas eve I called at 2am with 103 fever and the begining of cigarette burn leasions on my legs. I had read the 6mp printout from my pharmacy and it said to call the DR IMEDIATELY if you had a high fever. I told him this He told me to calm down and get myself together and take some tylonal that it was probably the flu. He asked me repeatedly why I was upset and I told him I was in pain. He reiterated that he thinks I have IBS too and to calm down. I told him I had not been around anyone sick and had only IBD symptoms. He told me to calm down because I was making my pain worse and to call him in the morning. In the morning my fever had indeed gone down and he told me I was obsessive about taking my temp as I took it every hour. He said my leasions didnt sound U/C related as they were on the backs of my legs and not fronts and that they were probably viral. Christmas was horrible and I continued to have less bowel movements (considered good by GI) but felt horrible. December 27 I woke in a delirioum screaming blood and boils on my legs and butt. My husband was sleeping down stairs and didnt hear my screams. My fever I never took but I was dehydrated and shaking. I eventually passed out. My mom who knew I hadnt been feeling well came over that morning to help my DH with the kids. When I woke I felt completely mentally screwed up. I was in shock. After a trip to the bathroom that looked like a murder scene and me constantly telling my Dh not to leave me he called the GI and told him that something was not right and that I was acting like I was on a bad trip... Dr questioned him somemore but at my husbands insistance he was meeting him in the emergency room.
Here is the short of it the Dr came in to tell me I had the flu or something again until the inturn gave him my blood work and I had next to NO white cells. Then the GI ATE his words. Get this I had Aplastic anemia from the 6mp, My leasions grew to the size of my hands all 11 of them (like 3rd degree burns), I was in septic shock, dehydrated, and my piddly U/C as I am so often reminded because it is "only left sided" and doesnt look "that" inflamed on colonoscopy was in acute flare. My hemacrite was 3. and I had very little red blood cells as well.
During this time my family was on alert for a emergency bone marrow transplant... and I had a near death experiance. I had a miraculas recovery through what I believe was prayers of others. I didnt as of yet need the transplant even though my bone marrow all died (they actually went in my hip and got it). I was in intesive care and then sent to onocology since what I had was similar to lukimia and needed an onocoloc hematologist. My family went through hell and my mom had to quit her job to care for me. I was in horrible pain as between my colitis and the leasions would stick to the bedpan and the burns would reopen again and again. I was on morphine and adivan. I thankfully only remember flashbacks of pain during the first 2weeks. Three nurses who had cared for me came back during my 3rd week were shocked that I had made it and came back to see for themselves that I was ok. It was so bad I have post tramatic stress disorder now and am on medication.
The hematogist saved my who saved life and unfortuatly is very good friends with my GI and has been I think covering for him. He did let some things slip. My GI obvouisly is watching me like a hawk now. He was having a hard time as his office help was sick and he was doing everything himself. I was told that what happend to me between 12/8 and 12/27 was a 1 in 3 billion chance and that my GI is presenting my case to hopkins next year. Both Hematologist and GI were incontact with the heads of the field in my state to get things ok again. My mom worked for a surgin and checked the PDR on 6MP the book said I needed several blood draws and some in the first week. Jills book said that 6mp is monitered by blood work after the first week to keep an eye on counts. IF I would have had this blood work they would have caught this earlier and I believe I likely wouldnt have had to go through THAT extreme of an ordeal or come close to losing my life (My GI said I wouldnt have died that I just might have needed a bone marrow transplant... the hemetologist and other hospital staff said I almost died and the near death experiance was a clue too)... What is the standard of care for 6mp monitering? Now that I am getting adiquite care (I think) from my GI do I switch again? I have to go to another county to get another one... I am also facing the pred wean again and am terrified of getting sick now I cannot take most immune suppressives although they did talk about a blood test to see if I can still take Imuran again but with its similarities to 6mp I dont know. My next step is a week in the hospital with cyclosporine(sp) if I dont wean well from steriods this time. I am also concerned about possible liver damage from my ordeal as I read that can happen with the severe 6mp reaction. If I do have damage and hold my Dr liable will I ever get adiquate care from anyone else? Should I let it go? I do need anyones proticol for 6mp blood work but opinoins on the other stuff is welcome too.
Thanks for reading so far!
Standard of Care question and my story (long) Jill question at end