Aa
prepping for my First Hepatologist appt
Ok...finally got through some of the red tape and have my first appointment with a Hepatologist on Friday (not the transplant hospital but University of SA), so want to make sure I ask all the "right" questions....succinct and to the point...basically...Early Cirrhosis (regenerative nodules found on CT scan), still compensated (good blood work, feeling good) but have arthritic hip disease for which I have refused pain meds for til I consult with the specialist (this affects my daily life and sleep) but liver needs trump my comfort needs at the moment...so I need to ask ? 1) about liver biopsy? or alternative method to stage cirrhosis? 2) nutrition guidelines? 3) recommended supplements? 4) pain meds?.....what else? thanks for ya'lls help
Bev
Bev
ok...not perfect appt but ok for now...never saw a "doctor" but a PA who's been working in the Hepatology clinic for 13 years...mainly an information gathering appt (glad I brought my labs...he said they didn't have them!), personal and family history and a quick physical including an abdomen exam..next appt set for April with my labs to be run two weeks before...these tests include
1)AFP Tumor Marker Serum 2) Anti-Mitochondrian Antibody 3) Anti-Nuclear Anibody 4) Anti-Smooth Muscle 5) Bilirubin Direct Serum 6) Ceruloplasmin 7) CBC 8) Comprehensive Metabolic Profile 9)Ferritin Level 10) GGT 11) Hep A antibody total 12) Hep B Surface Antibody and Antigen 13) INR 14) Iron Serum 15) Lipid Profile 16) partial Thromboplastin 17)Thyroid Stimulating Hormone and 18) Total Iron Binding Capacity
He said he would evaluate, and based on results, proceed to next ?...said he was going to schedule a endoscopy shortly thereafter. Recommended (upon significant probing from me) to follow all the nutrition points I have read on this site....the only thing he dismissed entirely was my request for testing for ammonia levels....also said liver biopsy wasn't necessary since I was still compensated and cirrhosis already established.....also said to avoid all supplements w/possible exception of milk thistle (i could tell he wasn't convinced of any good it would do, but rather was giving me a "bone" and said to take it if it made me feel better to do so....not a great attitude...patronizing) and when asked about pain meds for hip...he said 2g of Tylenol would be ok, but said i could approach pcp about Tramadol? if needed...cut salt/no iron supplements but ok iron rich veggies..i guess that's about it....i've been a little concerned about fatique lately, esp since I've been trying hard to shut down earlier now, and since I haven't drank since Oct just kind of surprised that I'm not feeling more energetic...maybe its my active imagination but it seems after I eat, I get a "buzz" going on...kind of thick woozy feeling...he dismissed it, so maybe i'm being overly analytical...well any thoughts, questions, then please share....thanks for "listening'
Bev
1)AFP Tumor Marker Serum 2) Anti-Mitochondrian Antibody 3) Anti-Nuclear Anibody 4) Anti-Smooth Muscle 5) Bilirubin Direct Serum 6) Ceruloplasmin 7) CBC 8) Comprehensive Metabolic Profile 9)Ferritin Level 10) GGT 11) Hep A antibody total 12) Hep B Surface Antibody and Antigen 13) INR 14) Iron Serum 15) Lipid Profile 16) partial Thromboplastin 17)Thyroid Stimulating Hormone and 18) Total Iron Binding Capacity
He said he would evaluate, and based on results, proceed to next ?...said he was going to schedule a endoscopy shortly thereafter. Recommended (upon significant probing from me) to follow all the nutrition points I have read on this site....the only thing he dismissed entirely was my request for testing for ammonia levels....also said liver biopsy wasn't necessary since I was still compensated and cirrhosis already established.....also said to avoid all supplements w/possible exception of milk thistle (i could tell he wasn't convinced of any good it would do, but rather was giving me a "bone" and said to take it if it made me feel better to do so....not a great attitude...patronizing) and when asked about pain meds for hip...he said 2g of Tylenol would be ok, but said i could approach pcp about Tramadol? if needed...cut salt/no iron supplements but ok iron rich veggies..i guess that's about it....i've been a little concerned about fatique lately, esp since I've been trying hard to shut down earlier now, and since I haven't drank since Oct just kind of surprised that I'm not feeling more energetic...maybe its my active imagination but it seems after I eat, I get a "buzz" going on...kind of thick woozy feeling...he dismissed it, so maybe i'm being overly analytical...well any thoughts, questions, then please share....thanks for "listening'
Bev
Oh, I forgot to give credit to Hector SF for the tips for the appt. along wit OH for the questions.
Advocate1955
Advocate1955
Perfect! Just what I was looking for....I think I caused the cirrhosis by NSAID's, alcohol, and being overweight (but didn't think I did any of them excessively but obviously not)...ND on my RNA for Hep C...ready for a plan :)
Here are some questions that I modified from a journal post by OrphanedHawk, another forum member. I don't know if any of these apply to your specific situation, because I can't recall the specific cause of your Cirrhosis:
Questions for the Hepatologist:
1. How experienced are you in dealing with Hep C and Cirrhosis?
2. How advanced is my Cirrhosis ?
3. How likely is it that I will develop liver cancer?
4. Please check my ammonia levels and let me know if I have encephalopathy.
5. What labs do I need and how often should I have them done ?
6. What tests do I need and how often should I have them done?
7. Do I need a biopsy?
8. Do you suggest I take any supplements and if so what?
9. Do you suggest any dietary restrictions ?
10. Who do I contact in an emergency?
11. Will I be able to have copies of all my labs and tests?
12. Will you be available via phone or email to answer my questions?
13. Do you recommend treatment for Hep C?
a. If treating for Hep C, what treatment would it be? Are there any clinical trials?
b. What is your protocol for dealing with low white blood count or red blood count during treatment?
c. How do you manage other side effects?
d. How will this treatment interact with my other medications?
e. How often would I be seeing you during treatment?
14. How can I protect the people around me from hepatitis C?
15. How often should I see a hepatologist? Primary care physician?
Tips for Appointments with the Hepatologist:
1. Be prepared. Don’t be nervous. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue.
2. Before your appointment, write down your questions and prioritize them.
3. Maintain copies of your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.
4. Make eye contact before speaking to your medical provider. Once you begin speaking, your provider may take notes. This does not mean s/he is not listening.
5. Before you start with your list of questions, ask how much time the provider has for questions. Respect these limits, and you will benefit in the long run.
6. Prioritize your health issues. Be brief but clear. Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them.
7. When describing your symptoms, begin with the general picture and end with the specifics. Example: My stomach hurts. I feel nauseous in the morning.
8. Ask for clarification. If your doctor uses words or explanations you do not understand, ask him/her to clarify or simplify words.
9. If you plan to record, be sure to ask the doctor for permission first. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby.
10. Take a friend, loved one, or an advocate to your appointment. This is especially important for appointments that may be long, complicated, or not routine. Ask your companion to take notes for you. If it’s alright with your provider, you can also record the appointment.
11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.
12. Express any fears or reservations you may have. If your doctor suggests a treatment plan that you have some concerns about, let him/her know. Sometimes these concerns can be easily addressed.
13. If your doctor makes a treatment suggestion and you have fears or reservations about it, ask about other options.
14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near what they imagined.
15. Ask the physician if there are resources or support groups he/she would recommend.
16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. Ask if there are any possible symptoms that might become an emergency, and if so, what should you do? If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results. Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.
17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports. You should always keep copies of your records filed and in a place where you can review them easily. It also makes it easier to give copies to other health practitioners.
18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule. Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame. Or can they email you with answers to any remaining questions?
19. Try to get to know other providers in the hepatologist’s office: Nurses, Nurse Practitioners, Appointment Coordinators, Technicians, etc. They can be very helpful and supportive.
Questions for the Hepatologist:
1. How experienced are you in dealing with Hep C and Cirrhosis?
2. How advanced is my Cirrhosis ?
3. How likely is it that I will develop liver cancer?
4. Please check my ammonia levels and let me know if I have encephalopathy.
5. What labs do I need and how often should I have them done ?
6. What tests do I need and how often should I have them done?
7. Do I need a biopsy?
8. Do you suggest I take any supplements and if so what?
9. Do you suggest any dietary restrictions ?
10. Who do I contact in an emergency?
11. Will I be able to have copies of all my labs and tests?
12. Will you be available via phone or email to answer my questions?
13. Do you recommend treatment for Hep C?
a. If treating for Hep C, what treatment would it be? Are there any clinical trials?
b. What is your protocol for dealing with low white blood count or red blood count during treatment?
c. How do you manage other side effects?
d. How will this treatment interact with my other medications?
e. How often would I be seeing you during treatment?
14. How can I protect the people around me from hepatitis C?
15. How often should I see a hepatologist? Primary care physician?
Tips for Appointments with the Hepatologist:
1. Be prepared. Don’t be nervous. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue.
2. Before your appointment, write down your questions and prioritize them.
3. Maintain copies of your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.
4. Make eye contact before speaking to your medical provider. Once you begin speaking, your provider may take notes. This does not mean s/he is not listening.
5. Before you start with your list of questions, ask how much time the provider has for questions. Respect these limits, and you will benefit in the long run.
6. Prioritize your health issues. Be brief but clear. Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them.
7. When describing your symptoms, begin with the general picture and end with the specifics. Example: My stomach hurts. I feel nauseous in the morning.
8. Ask for clarification. If your doctor uses words or explanations you do not understand, ask him/her to clarify or simplify words.
9. If you plan to record, be sure to ask the doctor for permission first. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby.
10. Take a friend, loved one, or an advocate to your appointment. This is especially important for appointments that may be long, complicated, or not routine. Ask your companion to take notes for you. If it’s alright with your provider, you can also record the appointment.
11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.
12. Express any fears or reservations you may have. If your doctor suggests a treatment plan that you have some concerns about, let him/her know. Sometimes these concerns can be easily addressed.
13. If your doctor makes a treatment suggestion and you have fears or reservations about it, ask about other options.
14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near what they imagined.
15. Ask the physician if there are resources or support groups he/she would recommend.
16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. Ask if there are any possible symptoms that might become an emergency, and if so, what should you do? If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results. Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.
17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports. You should always keep copies of your records filed and in a place where you can review them easily. It also makes it easier to give copies to other health practitioners.
18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule. Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame. Or can they email you with answers to any remaining questions?
19. Try to get to know other providers in the hepatologist’s office: Nurses, Nurse Practitioners, Appointment Coordinators, Technicians, etc. They can be very helpful and supportive.
Thanks Randy...thanks to "ya'll" I am definitely better prepared now than before....though last time I thought I had Hep C...but since I've been cleared of that and since that posting, I have stopped all supplements, pain meds, eating better, etc.....I know Hector is fervent about having care at a transplant hospital so I thought I would tackle that after this inital consult, based on what they say....not sure how to just walk in if I have limited funds and no insurance though...I have a sponsor who will pay for a private hepatologist consult so will keep that in mind after Friday....once again, thanks for "being there" as ya'll are for so many of us "newbies" on this board
You take care as well,
Bev
You take care as well,
Bev
COMMUNITY LEADER
It sounds like you are very well prepared, you may talk to him/her about vaccinations for Hep A and B. Take copies of any medical files you may have for reference. Write down your questions if you haven't already, once you get in there and start talking it's easy to forget something.
This was very well covered I thought back in December so you may take a look through that post again just to make sure.
http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/CT-Scan-Early-Cirrhosis/show/1862304#post_8669099
You stay on top of everything as well as you have and I think you will be just fine, the best of luck to you on Friday Bev! Please let us know how everything goes :)
Randy
This was very well covered I thought back in December so you may take a look through that post again just to make sure.
http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/CT-Scan-Early-Cirrhosis/show/1862304#post_8669099
You stay on top of everything as well as you have and I think you will be just fine, the best of luck to you on Friday Bev! Please let us know how everything goes :)
Randy
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