Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 I had an ERCP about 2 weeks ago and my Dr. said its time to be seen at Mayo. They called today and said they can get me in to see either Dr. Lindor or Dr. LaRosso next Monday. I didn't think I would get in that quick and am in a panic. I could really use some help with what questions to ask and what to expect. Thanks for all your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 --I'm curious as to how many people here go to Mayo? My doctors are out at UCLA and I feel very comfortable with them but if Mayo is the best place to be in regards to PSC, maybe it is something I should consdider. Any suggestions? Thanks Serbrina - In , " " wrote: > > I had an ERCP about 2 weeks ago and my Dr. said its time to be seen at > Mayo. They called today and said they can get me in to see either Dr. > Lindor or Dr. LaRosso next Monday. I didn't think I would get in that > quick and am in a panic. I could really use some help with what > questions to ask and what to expect. Thanks for all your help. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 --I'm curious as to how many people here go to Mayo? My doctors are out at UCLA and I feel very comfortable with them but if Mayo is the best place to be in regards to PSC, maybe it is something I should consdider. Any suggestions? Thanks Serbrina - In , " " wrote: > > I had an ERCP about 2 weeks ago and my Dr. said its time to be seen at > Mayo. They called today and said they can get me in to see either Dr. > Lindor or Dr. LaRosso next Monday. I didn't think I would get in that > quick and am in a panic. I could really use some help with what > questions to ask and what to expect. Thanks for all your help. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 --I'm curious as to how many people here go to Mayo? My doctors are out at UCLA and I feel very comfortable with them but if Mayo is the best place to be in regards to PSC, maybe it is something I should consdider. Any suggestions? Thanks Serbrina - In , " " wrote: > > I had an ERCP about 2 weeks ago and my Dr. said its time to be seen at > Mayo. They called today and said they can get me in to see either Dr. > Lindor or Dr. LaRosso next Monday. I didn't think I would get in that > quick and am in a panic. I could really use some help with what > questions to ask and what to expect. Thanks for all your help. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 Here is a list of questions developed by Ross Heil. Some of the questions are controversial but they might help you develop a list you are comfortable with. Good luck with your appointment. Let us know about it after. PSC Questions for New Patients Should Ursodiol play a role in my management of PSC? If yes, what dosage? Should I consume alcohol containing products? If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try? Phototherapy with tanning beds? Is it safe to smoke Marijuana with known liver disease such as PSC? Are fish oils an acceptable supplement? If yes, what dosage would you recommend? How often should I follow up for an office visit? How many cases of PSC have you managed in the past and currently? What do you think about getting a second opinion? At what point would you want me to call regarding symptoms, and for which symptoms would you want me to go straight to an ER? Can I have my routine labs drawn before my appointments so that we may discuss the results in person? Are any of my current medications problematic? If I have a headache or musculoskeletal pain what over the counter medications would you recommend? What should I avoid? PSC Questions for follow up visits Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC? Does Ursodiol decrease the incidence of cholangiocarcinoma? What about decreasing the chance of colon cancer? If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining? How often do you recommend an ERCP or MRCP? How often should I have a colonoscopy? How often should I have an abdominal ultrasound? How did my gallbladder appear? Any evidence of ascities? Any specious lesions? How often should a CA 19-9 level be drawn? How often should my INR/PT, Albumin, AST, ALT, Alkaline Phosphatase, Total Bilirubin, and Direct Bilirubin be drawn? What is my MELD score? Can I have a copy of my blood and diagnostic test results? How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels? Should I take Fat Soluble vitamin supplements? If yes, what dosages? How often should a bone density test be done? What vaccinations are required since I have liver disease? I had an ERCP about 2 weeks ago and my Dr. said its time to be seen at Mayo. They called today and said they can get me in to see either Dr. Lindor or Dr. LaRosso next Monday. I didn't think I would get in that quick and am in a panic. I could really use some help with what questions to ask and what to expect. Thanks for all your help. -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 Here is a list of questions developed by Ross Heil. Some of the questions are controversial but they might help you develop a list you are comfortable with. Good luck with your appointment. Let us know about it after. PSC Questions for New Patients Should Ursodiol play a role in my management of PSC? If yes, what dosage? Should I consume alcohol containing products? If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try? Phototherapy with tanning beds? Is it safe to smoke Marijuana with known liver disease such as PSC? Are fish oils an acceptable supplement? If yes, what dosage would you recommend? How often should I follow up for an office visit? How many cases of PSC have you managed in the past and currently? What do you think about getting a second opinion? At what point would you want me to call regarding symptoms, and for which symptoms would you want me to go straight to an ER? Can I have my routine labs drawn before my appointments so that we may discuss the results in person? Are any of my current medications problematic? If I have a headache or musculoskeletal pain what over the counter medications would you recommend? What should I avoid? PSC Questions for follow up visits Upon average, when does bile duct cancer (cholangiocarcinoma, aka the Klatskin tumor) arise from the time diagnosed with PSC? Does Ursodiol decrease the incidence of cholangiocarcinoma? What about decreasing the chance of colon cancer? If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining? How often do you recommend an ERCP or MRCP? How often should I have a colonoscopy? How often should I have an abdominal ultrasound? How did my gallbladder appear? Any evidence of ascities? Any specious lesions? How often should a CA 19-9 level be drawn? How often should my INR/PT, Albumin, AST, ALT, Alkaline Phosphatase, Total Bilirubin, and Direct Bilirubin be drawn? What is my MELD score? Can I have a copy of my blood and diagnostic test results? How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels? Should I take Fat Soluble vitamin supplements? If yes, what dosages? How often should a bone density test be done? What vaccinations are required since I have liver disease? I had an ERCP about 2 weeks ago and my Dr. said its time to be seen at Mayo. They called today and said they can get me in to see either Dr. Lindor or Dr. LaRosso next Monday. I didn't think I would get in that quick and am in a panic. I could really use some help with what questions to ask and what to expect. Thanks for all your help. -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 , Hi! You had asked what to expect from your appointment at Mayo. I'm not entirely sure I can give you an answer that would be standard, but I'd be happy to share with you what happens with me when I go there and maybe that will help alleviate some of your anxiety or let you know a little bit of what you might expect. Generally, the first thing that I do when I arrive at Mayo is go to the labs and have some bloodwork taken. Thankfully, they have really good phlebotomists there and it's not as big of an ordeal for me as it is at many other places. I usually then go to meet with my PSC doctor. We do an examination (palpating the abdomen, feeling around the liver, listening to breath sounds, etc.). She usually also looks at my feet and legs to assess swelling. We talk about my symptoms, any previous labs that they've taken, etc. From that appointment, I am generally scheduled for several follow-up appointments to deal with the symptoms I have. Sometimes I will be referred to other departments (GI, Rheumatology, Neurology, etc.) and to other procedures. Some of the most common for me are ERCP, MRCP, Bone Scan, Ultrasound, Colonoscopy, Upper Endoscopy). The way it generally works for me is that as I meet with each doctor or get the results of each test/procedure, more things are added to my schedule. I usually meet with my PSC doctor one last time when everything is finished and discuss the results of all of the procedures/labs, etc. and when it is that I'll need to return, what medications to stay on/add/lose, etc. As to questions, I see that Ross's list was passed on to you. There are some great ideas there. My biggest advice in the question-asking area though is just ask. Don't worry if you think your question sounds silly or stupid. If you're wondering about it, ask it. Chances are, some other patient has asked it too and the doctors will be more than happy to answer it. The more open and communicative you are with your doctors, the better relationship you'll have as patient/caregiver in my opinion. Also, I can't remember if this is on Ross's list or not, but you may want to ask who you contact if you have a question that occurs to you later that you need to ask and how long you should expect to wait for an answer. Last, if at all possible, you may want to have somebody come in with you for the appointment. Sometimes an extra pair of ears and a second mouth to ask questions can be a godsend, especially if your head starts swimming. If you don't want the person there for the exam part, you can always ask if you can bring them in later when you start discussing what will happen next, etc. I hope this helps alleviate some nerves. If I can help with anything else or you just need somebody to talk to, feel free to contact me anytime! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 , Hi! You had asked what to expect from your appointment at Mayo. I'm not entirely sure I can give you an answer that would be standard, but I'd be happy to share with you what happens with me when I go there and maybe that will help alleviate some of your anxiety or let you know a little bit of what you might expect. Generally, the first thing that I do when I arrive at Mayo is go to the labs and have some bloodwork taken. Thankfully, they have really good phlebotomists there and it's not as big of an ordeal for me as it is at many other places. I usually then go to meet with my PSC doctor. We do an examination (palpating the abdomen, feeling around the liver, listening to breath sounds, etc.). She usually also looks at my feet and legs to assess swelling. We talk about my symptoms, any previous labs that they've taken, etc. From that appointment, I am generally scheduled for several follow-up appointments to deal with the symptoms I have. Sometimes I will be referred to other departments (GI, Rheumatology, Neurology, etc.) and to other procedures. Some of the most common for me are ERCP, MRCP, Bone Scan, Ultrasound, Colonoscopy, Upper Endoscopy). The way it generally works for me is that as I meet with each doctor or get the results of each test/procedure, more things are added to my schedule. I usually meet with my PSC doctor one last time when everything is finished and discuss the results of all of the procedures/labs, etc. and when it is that I'll need to return, what medications to stay on/add/lose, etc. As to questions, I see that Ross's list was passed on to you. There are some great ideas there. My biggest advice in the question-asking area though is just ask. Don't worry if you think your question sounds silly or stupid. If you're wondering about it, ask it. Chances are, some other patient has asked it too and the doctors will be more than happy to answer it. The more open and communicative you are with your doctors, the better relationship you'll have as patient/caregiver in my opinion. Also, I can't remember if this is on Ross's list or not, but you may want to ask who you contact if you have a question that occurs to you later that you need to ask and how long you should expect to wait for an answer. Last, if at all possible, you may want to have somebody come in with you for the appointment. Sometimes an extra pair of ears and a second mouth to ask questions can be a godsend, especially if your head starts swimming. If you don't want the person there for the exam part, you can always ask if you can bring them in later when you start discussing what will happen next, etc. I hope this helps alleviate some nerves. If I can help with anything else or you just need somebody to talk to, feel free to contact me anytime! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 , Hi! You had asked what to expect from your appointment at Mayo. I'm not entirely sure I can give you an answer that would be standard, but I'd be happy to share with you what happens with me when I go there and maybe that will help alleviate some of your anxiety or let you know a little bit of what you might expect. Generally, the first thing that I do when I arrive at Mayo is go to the labs and have some bloodwork taken. Thankfully, they have really good phlebotomists there and it's not as big of an ordeal for me as it is at many other places. I usually then go to meet with my PSC doctor. We do an examination (palpating the abdomen, feeling around the liver, listening to breath sounds, etc.). She usually also looks at my feet and legs to assess swelling. We talk about my symptoms, any previous labs that they've taken, etc. From that appointment, I am generally scheduled for several follow-up appointments to deal with the symptoms I have. Sometimes I will be referred to other departments (GI, Rheumatology, Neurology, etc.) and to other procedures. Some of the most common for me are ERCP, MRCP, Bone Scan, Ultrasound, Colonoscopy, Upper Endoscopy). The way it generally works for me is that as I meet with each doctor or get the results of each test/procedure, more things are added to my schedule. I usually meet with my PSC doctor one last time when everything is finished and discuss the results of all of the procedures/labs, etc. and when it is that I'll need to return, what medications to stay on/add/lose, etc. As to questions, I see that Ross's list was passed on to you. There are some great ideas there. My biggest advice in the question-asking area though is just ask. Don't worry if you think your question sounds silly or stupid. If you're wondering about it, ask it. Chances are, some other patient has asked it too and the doctors will be more than happy to answer it. The more open and communicative you are with your doctors, the better relationship you'll have as patient/caregiver in my opinion. Also, I can't remember if this is on Ross's list or not, but you may want to ask who you contact if you have a question that occurs to you later that you need to ask and how long you should expect to wait for an answer. Last, if at all possible, you may want to have somebody come in with you for the appointment. Sometimes an extra pair of ears and a second mouth to ask questions can be a godsend, especially if your head starts swimming. If you don't want the person there for the exam part, you can always ask if you can bring them in later when you start discussing what will happen next, etc. I hope this helps alleviate some nerves. If I can help with anything else or you just need somebody to talk to, feel free to contact me anytime! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 I’ve been to Mayo Rochester (twice). If you’re comfortable with your doctors, that’s pretty hard to beat. There’s nothing wrong with “pushing” them based on what you know. You probably have more time for “research” than they do. I’ve surprised my hep (who is NOT at Mayo) more than once with information I’ve heard here. Write down your questions and make sure they get answered. I’ve heard good things about UCLA, Pittsburg, Denver and Mayo (Rochester, sdale and ville), but only have experience with Mayo Rochester. Arne UC 1977, PSC 2000 Alive and well in Minnesota From: [mailto: ] On Behalf Of serbrinamv@... --I'm curious as to how many people here go to Mayo? My doctors are out at UCLA and I feel very comfortable with them but if Mayo is the best place to be in regards to PSC, maybe it is something I should consdider. Any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 I’ve been to Mayo Rochester (twice). If you’re comfortable with your doctors, that’s pretty hard to beat. There’s nothing wrong with “pushing” them based on what you know. You probably have more time for “research” than they do. I’ve surprised my hep (who is NOT at Mayo) more than once with information I’ve heard here. Write down your questions and make sure they get answered. I’ve heard good things about UCLA, Pittsburg, Denver and Mayo (Rochester, sdale and ville), but only have experience with Mayo Rochester. Arne UC 1977, PSC 2000 Alive and well in Minnesota From: [mailto: ] On Behalf Of serbrinamv@... --I'm curious as to how many people here go to Mayo? My doctors are out at UCLA and I feel very comfortable with them but if Mayo is the best place to be in regards to PSC, maybe it is something I should consdider. Any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 I’ve been to Mayo Rochester (twice). If you’re comfortable with your doctors, that’s pretty hard to beat. There’s nothing wrong with “pushing” them based on what you know. You probably have more time for “research” than they do. I’ve surprised my hep (who is NOT at Mayo) more than once with information I’ve heard here. Write down your questions and make sure they get answered. I’ve heard good things about UCLA, Pittsburg, Denver and Mayo (Rochester, sdale and ville), but only have experience with Mayo Rochester. Arne UC 1977, PSC 2000 Alive and well in Minnesota From: [mailto: ] On Behalf Of serbrinamv@... --I'm curious as to how many people here go to Mayo? My doctors are out at UCLA and I feel very comfortable with them but if Mayo is the best place to be in regards to PSC, maybe it is something I should consdider. Any suggestions? Quote Link to comment Share on other sites More sharing options...
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