Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 Here is a list of the questions I took to my new hepatologist a few weeks ago. I am sorry to hear that you all are going through this Questions for Hepatologist: 1) Do I have PSC? 2) What stage am I in? 3) What medications should I be on? 4) Are any of my current medications problematic? 5) What is my MELD score? 6) How often should I see you? 7) Can I have a copy of my blood and diagnostic test results? 8) Should I have another CA-19-9 test conducted and if so when or how often the test should be conducted? 9) Can I have my blood drawn BEFORE I see you next time, so we can discuss the results? 10) Will you perform Brushings with FISH analysis if needed, and if so will they be performed her or will they be sent out to Mayo? 11) What do you anticipate the timeframe/course of my PSC to be? 12) When I get the pain in my side what should I do? 13) Vitamin def – please check and how often should they be checked? 14) Chances of my daughter developing this? 15) Should I have another DEXA Scan ? Dawn > > What are some questions we should be prepared to ask the doctor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 Here is a list of the questions I took to my new hepatologist a few weeks ago. I am sorry to hear that you all are going through this Questions for Hepatologist: 1) Do I have PSC? 2) What stage am I in? 3) What medications should I be on? 4) Are any of my current medications problematic? 5) What is my MELD score? 6) How often should I see you? 7) Can I have a copy of my blood and diagnostic test results? 8) Should I have another CA-19-9 test conducted and if so when or how often the test should be conducted? 9) Can I have my blood drawn BEFORE I see you next time, so we can discuss the results? 10) Will you perform Brushings with FISH analysis if needed, and if so will they be performed her or will they be sent out to Mayo? 11) What do you anticipate the timeframe/course of my PSC to be? 12) When I get the pain in my side what should I do? 13) Vitamin def – please check and how often should they be checked? 14) Chances of my daughter developing this? 15) Should I have another DEXA Scan ? Dawn > > What are some questions we should be prepared to ask the doctor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 Here is a list of the questions I took to my new hepatologist a few weeks ago. I am sorry to hear that you all are going through this Questions for Hepatologist: 1) Do I have PSC? 2) What stage am I in? 3) What medications should I be on? 4) Are any of my current medications problematic? 5) What is my MELD score? 6) How often should I see you? 7) Can I have a copy of my blood and diagnostic test results? 8) Should I have another CA-19-9 test conducted and if so when or how often the test should be conducted? 9) Can I have my blood drawn BEFORE I see you next time, so we can discuss the results? 10) Will you perform Brushings with FISH analysis if needed, and if so will they be performed her or will they be sent out to Mayo? 11) What do you anticipate the timeframe/course of my PSC to be? 12) When I get the pain in my side what should I do? 13) Vitamin def – please check and how often should they be checked? 14) Chances of my daughter developing this? 15) Should I have another DEXA Scan ? Dawn > > What are some questions we should be prepared to ask the doctor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 I am sorry for all that you and your husband are dealing with. please know that you are in our prayers. - rachel and alex > > Hi everyone! I used to be a member here a while back. I left and now am back. > > My husband has PSC and was pretty much asymptomatic until last year. He had his > gallbladder removed in May '07. He developed an infection afterwards and ended up with > fluid in his abdomen. He spent 5 days in the hospital recovering. > > Things were going ok until a week ago. He just started seeing a new hepatologist at IU > Med Center and he sent him for a bunch of tests. He had a colonoscopy a few weeks ago > which showed some precancerous cells. His GI doctor is referring him to someone at IU > and recommended a colectomy. > > He also had an ERCP last Thursday. They cut one of the bile ducts and flushed out some > stones. Last Friday evening he started passing blood whenever he'd go to the bathroom. I > took him to the ER Saturday morning and we spent another 5 days in the hospital. His > hemoglobin kept dropping so they gave him 2 units of blood. They did another endoscopy > which showed there was no bleeding in the upper GI tract but the bile duct that had been > cut was infected. They did another colonoscopy the next day thinking that was where the > bleeding was coming from. There was no new blood but he does have internal hemroids > that were inflamed. > > Long story short, his hemoglobin finally stabilized but his white blood cells, red blood > cells & platelets were all low. The doctors explained that it was because his spleen is > enlarged (21 cm) which is apparently because his liver is not functioning well. His blood > levels finally stabilized enough that they felt it was ok to send him home. Now that he's up > walking around, his abdomen is again filling with fluid. They gave him Lasiks before we > left the hospital yesterday but wouldn't send him home with a script because he already > has low blood pressure. > > We are aware that he is likely getting closer to being listed and although I'd be lying if I > said it wasn't scary, we've made peace with it. He's only 33 and he told me the other day > while lying in the hospital bed " I don't want the next few years of my life to be like this. I'm > ready. " We see his hepatologist October 22 so we'll know the results of all of his tests and > blood work then. > > What are some questions we should be prepared to ask the doctor? I began keeping a > journal so I can keep track of any new symptoms or really anything. One of his nurses at > the hospital asked if I was in the medical field because I was asking a lot of questions and > writing everything down. I told her no, just a concerned wife. I'm sure like many of you, we > probably know as much, if not more about this disease than most medical professionals. > > Anyway, it's good to be among people who I know understand what we're going through. > > Bobbi > Quote Link to comment Share on other sites More sharing options...
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