Hi, welcome to the forum.
I have Dr. Fredericks at Sutter Pacific and I like him very much. He is kind and very smart.
However, my experience with specialists is that they are extremely busy and in demand and while they definitely meet or surpass the standard, the downside is we get less time with them. It is just the way it works, I believe.
My understanding is that Dr. F is leading a trial study as well.
Good luck to you and your boyfriend.
"Also is it a standard practice for a doc to suggest a spouse/longtime partner be tested for the virus?
Not once has a doctor suggested that my other half get tested for the virus. All my doctors knew I had one and never even brought it up. What is really interesting is they are a baby boomer (recommended by CDC to get a one time test for the virus. I called the doctors office and asked why they didn't get tested at their yearly physical. Opps we forgot was the answer. I got the
blood work slip and handed it to my partner to get tested. They are negative!
........and I have peace of mind. Yes is low chance that you could get this from your long time partner. Get test
Best to You
Thanks for your reply. I guess we just don't know if we are expecting too much from this GI or any specialist. We are okay with not having long, hand-holding office sessions with a specialist, but the calling repeatedly for labs and interpretations is what stresses us out most right now. (At different instances results were in and we were told to call for them only to get assistants or answering services or the promise of a call back.)
(to the forum~) Is this pretty much par for the course? I know we are reacting emotionally to the delays in communication ... are we getting too huffy over small potatoes? I just worry it doesn't bode well for the rest of the treatment plan if we can't reach the doc easily.
I'll look into Dr. F, thanks!
An assistant who is willing to fax or email the results is a good thing to have.
Hepatitis C like many other chronic long term illnesses places a huge burden on the person who has it. I learned obtaining copies of my labs and what the results mean is pretty much up to me ....if I do not want to wait until my next scheduled doctor appointment that is.
There are certain values on the CBC (complete blood count) that are indicators to how one is responding to certain meds. Knowing what they mean and what to look for rather than waiting for them to tank is a huge advantage.
The first time I treated I had the full attention of my GI for every visit. By the time my second treatment rolled around his practice had flourished and he was extensively involved in trials and research. I pretty much went through treatment with his PA. This worked out extremely well and never once did I feel blown off or discounted.
The thing is if there are other factors that indicate that you might be better served elsewhere than I would ask around. The GI I treated with was my 'third opinion' doctor.
My sister and close friend (both medical professionals) brought it up to me after I told them about BF's diagnosis. No doctor who saw my BF suggested I get tested or even asked about our risk behaviors. Just seems odd.
I tested negative. Like you, BF was immediately relieved.
Thanks for your response and be well.
Dr. F sends copies of everything to me by mail and his nurse makes follow up calls and is available and very friendly and professional. You would have her direct number.
I don't think you are asking too much. He likes a proactive patient and never talks down to his patients but being a top Hepa he is very sharp and is unlikely to miss anything in your labs.
I know UCSF also has very good Hepatologists
.I think with any Hepatologist at Sutter Pacific or UCSF you cannot go wrong.
All the best
Hi Horatio! If you don't feel comfortable with your current Dr. you might want to look into someone else. You don't want to switch in the middle of treatment.
Yes I think most would agree when you are first diagnosed its an emotional time for you and your partner. My husband suffered along side me, just as you are doing for your guy. Waiting for tests, just relax on that. You'll be waiting for different ones during treatment. Lol! So just know that's normal. On the other hand communication with Dr. Is very important.
You asked if its standard practice for a doc to ask the partner to get tested? I don't know if its standard or not. That's a good question, because it should be. My hubby was tested and it was negative. Agree with Happy you should get tested but chances are very low. And it will give you peace of mind.
Stick around you will get great support on here. Many of the senior members on here can handle some pretty heavy questions. No one is a Dr. but most have been through this. So welcome to you and your long term. Lol!!
I also see Dr. R Todd Frederick at CPMC Liver/Transplant center in San Francisco. I think he is great. Orphanhawk and I call him the wonderboy. He has been promoted to head the trials at CPMC since Dr Natalie Bzowej moved to New Orleans. He is still seeing patients like myself. One has to be ready with your questions when for having an appointment. He is thorough with testing and follow through.
UCSF Medical Liver and Transplant Center in San Francisco is also good.
My friend sees Dr Norah Terrault and loves her. www.ucsfhealth.org/norah.terrault
The most important is to go to a Hepatologist specialist attached to a speciality Liver Transplant hospital that stay on the forefront of treatment, technology and trials. San Francisco has two, CPMC or UCSF Medical Center.
here is a post from HectorSF regarding his hepatologist:
calisan may have got an answer as this post as it was awhile ago but I would like to add a recommendation for U.C.S.F. to anyone in the Bay Area looking for expertise especially those like myself with cirrhosis.
My doctor is Norah Terrault. She is one of the leading experts and top researchers in the field. You can google her name and find her credentials, teaching videos and more information. Not only is she one of the most well-known doctors nationally and internationally in the field of HCV and HBV, but one of the most compassionate, warm people you will ever meet.
If you have more advanced liver disease and want to get known at a transplant clinic U.C.S.F is a good place to get connected.
Dr. Norah Terrault is a hepatologist or liver specialist who is recognized internationally for the treatment of viral hepatitis and liver transplantation. Her research includes the study of viral hepatitis and its progression and treatment, especially in liver transplant patients. Her research includes several clinical trials related to preventing and treating chronic hepatitis C and B. Her studies in this area have been presented to the American Association for the Study of Liver Diseases, the leading organization for research in liver disease.
(415) 353-1888 Liver Transplant
(415) 353-2318 Gastroenterology
Thanks for you comments, Idyllic. I agree with you -- we will have to stay on top of what is being tested, the results, and what they mean about the effectiveness of the medications. We must continue to educate ourselves to stay ahead of the game.
The doc we are seeing now just has a receptionist/scheduler, no nurse or PA. And he doesn't use email. (GASP!) So I know which way we are leaning now...
Much obliged and good health to you. :-)
Thanks again, rivll. UCSF is looking like the place to find care.
Thanks, mzkity. Just read your profile - glad you have your hubby to take care of you. :-)
Thank you, purplecat. Many accolades for Dr. Frederick and Dr. Terrault.
Everyone's input has been very helpful.
Thank you for pulling an archived post from Hector_SF. Now we have two docs to inquire about taking new patients. The BF is not yet cirrhotic --fibrosis stage is F3 (bridging fibrosis with many septa) with a score of 0.61. I'm not sure if this is considered moderate or advanced liver disease.
Thanks again and best to you.
Since he is F3 he should get an opinion on his best options at this time so he should consult with a hepatologist although hepatologists usually work with cirrhotic patients in order to cure their hep C and prevent liver damage.
I am not sure what test he had which said he is F3. F3 is advanced liver disease. A liver biopsy should be done at a transplant center to make sure the diagnosis is accurate. If he has cirrhosis (F4) proper treatment will be even more critical as the odds of cure are lower in cirrhotics and side effects are usually more difficult.
Has he had an ultrasound of the abdomen?
What is his platelet count?
Does he have enlarged spleen?
I have been seeing Dr. Terrault at UCSF for 5 years now and was recently number 3 on the liver transplant waiting list for blood type O. Unfortunately my liver cancer has made me at least temporarily unable to have a transplant. Dr. Terrault is one of the leaders in the field of hepatitis (both B & C) and liver transplantation. She recently leading the updated version of the AASLD guidelines for taking care of patients post transplant. She is in heavy demand as many of her cases involve patients with life-threatening illness. UCSF has saved my life many times so I can only highly recommend the level of care provided there. I have had numerous hospitalizations including the ER and have always had first class care. UCSF also does many cutting edge work with patients like myself who other transplant center would give up on and say best to get your things in order as there is nothing we can do. UCSF has saved the lives of many people I know including two close friends who were more dead then alive when they got their donor organs. Dr. Terrault staff is excellent from Dr. Jennifer Lai (a young hepatologist) and Lisa Catalli, NP. There are all compassionate people I can't say enough about. I don't think you can find more knowledgeable and caring people.
Here is Norah's info.
If you want to write me a private message you can use me as a reference. They all know me. I will be at our Transplant Support Group meeting tomorrow at UCSF.
Hopefully your boyfriend will never need all of the resources that are available at UCSF but it is good to know they are prepared for all options. Dr. Terrault also leads of of the clinical hepatitis C trials at UCSF. I am in a trial myself. Over 36 weeks of Sofosbuvir + Ribavirin. I have been undetectable since week 2.
Best of luck to the both of you!
San Francisco, CA 94109
Sorry for the typos I am not feeling well right now but I wanted to provide you with information about Dr. Terrault and UCSF as it worries me when a doctor "no nurse or PA. And he doesn't use email." Is he even a gastroenterologist?
UCSF provides cutting edge if someone needs it as it is also one of the top medical schools in the country.
Blood test results are usually online the same day unless they are special tests that get sent out. So you will have a record online of all your blood draws over time.
If you want imaging studies just go to the Records room and fill out a HIPPA form and it is easy to get all your records including CDs of Ultrasounds, CT scans, MRIs, X-rays etc.
Thanks for writing, especially when you feel so poorly. I've been reading your history and appreciate you godfathering people through this illness. I know it wasn't fun to acquire all the specific knowledge you have, but you provide a steady arm for the new wobblies. I truly hope the Sofosbuvir is the golden ticket for you.
Good news - Dr. Terrault is a covered provider under our insurance (Dr. Frederick was not). I requested the required referral from our primary care physician over the weekend. It went through this morning, so I am giving the clinic a few minutes to process it before I call for an appt.
What I know (at work, not all labs with me):
F3 stage was provided by a FibroSURE test. Score 0.61. Described as "bridging with many septa".
Necroinflammatory Acitivity Grade 0.58, with A-2 moderate activity.
Alpha 2 Macroglobulins, __Qn 290 mg/dL
Haptoglobin __53 mg/dL
Apolipoprotein A-1 __85 mg/dL
Bilirubin, Total __0.3 mg/dL
GGT __22 IU/L
ALT (SGPT) P5P __78 IU/L
Hepatitis C Quantitation __2,045,220 IU/mL
HCV log10 __6.311 log10 IU/mL
The above were collected in mid-March and we got the results in early April. A biopsy was not requested by the GI. We were told that insurance would not approve the drug regimen unless the BF had a clear colonoscopy, so we scheduled that for April (all good, one small polyp). Early May we came back to the GI and he initiated paper for drug approval. Because of the virus genotype, we knew we'd be in for the 3-drug treatment. He said clinical trials probably wouldn't apply to us ... but the more I read about the Gilead trials, the more I want to know if this could be an option. Dr. Terrault sounds like the person to ask.
At that last appt, the GI told use to get an ultrasound to rule out liver cancer. We got one early last week and were left to hunt down the results ourselves - finally faxed to us on Friday. I don't have that paper in front of me, but I recall the liver being textured with scarring and other characteristics, no tumors, the spleen being enlarged to 12.7 cm, some renal calcification that was deemed normal. The GI did not know I has the imaging center send me the report -- he left a message early Sunday morning mentioning the scarring and confirming no tumors. He did not mention the spleen. He is a GI in private practice, and was referred to us by our old primary care physician who left the clinic just after we received the diagnosis. (We have a new one now, we see her for the first time at the end of the month. bah!)
The last platelet count I have is from January: __195 x10E3/uL.
Hemoglobin __15.1 g/dL
The drugs prescribed, awaiting approval:
Pegasys Interferon __syringe 180 mcg/0.5 mL
Ribavirin __1000mg (2x day)
Victrelis __ 200mg capsule (1x day?)
I'm calling the Liver Clinic at UCSF now.
Thanks again, Hector. I'll let you know if we can get in with Dr. T.
You asked if it's standard practice for a spouse or partner to be tested. I don't know if it's standard practice, but when my husband was diagnosed with Hep C in 2007, his doctor recommended that our two children and I be tested. He didn't indicate that he felt there was a high risk or anything, but did indicate that he felt that it would be good to be tested. Our children's pediatrician tested the kids (negative) and then re-tested them again in 6 months (negative) just for peace of mind. My primary care doctor tested me (negative), but didn't feel there was a need to re-test in 6 months, and I was fine with that. Obviously the risk of contracting Hep C within a family is low to nothing, generally speaking, but it relieved a lot of my husband's worries to know that we tested negative. It was a new diagnosis, and we didn't know very much at the time. Given what we know now, we may not feel the need to test, but it was fine to test and know that we didn't have Hep C as well.
Don't worry Dr, Terrault and her staff will evaluate you and find the most appropriate treatment for you. Make sure your GI sends all of your records to Dr. Terrault office. It doesn't hurt to get hard copies to bring on your first visit just in case. (it can take months to get an appointment with her office). There spend a lot of time trying to save us with End-stage disease who take a lot of resources. Sorry...
By the way it looks like you have a little portal hypertension but it is not too advanced which is great. (Enlarged spleen and platelets within norms).
Try to get an appointment as soon as possible (it count take a month or two). If I were you I would NOT start treatment before seeing Dr. Terrault. A few months makes no difference. You want to give yourself the best chance of cure possible. While it is good to have a gastro for routine testing and simple things I advise you to follow Dr. Terrault's hepatitis C strategy for yourself. If you start treatment you will be committed for 24 for 48 weeks and she will only be able to monitor your treatment even if it was not the most appropriated treatment for you. Also if you are treatment naive you will loose the best chance for sure.
Let me know if you have any questions, problems, etc. I can help you navigate the UCSF system. Since I have been going there for so many years and go there usually at least once a week.
Help is on the way! :-)
i just want to say that all though passing on the disease to family is rare, it does happen. my caretaker tested positive for antibodies to hep c at the end of my tx. we were lucky, his pcr was not det. dr said immune system kicked it out. barry
There are many great hepatologists in the SF bay area.
I found Dr Frederick at CPMC from a member here when my GI wanted to pull me off treatment. He arranged to see me within days, squeezing me in to an early morning appointment.
Dr. F is a good compassionate, knowledgeable and savvy doctor.
I loved being able to email him while I was very sick and get an answer within hours if not minutes.
Update: We were able to get an appt with Dr. Lai at UCSF in late June. It would be several months before Dr. Terrault could see us, so we felt better seeing someone sooner. The boyfriend will not start treatment until we have Dr. Lai's assessment. Thanks for the referral, Hector.
Thanks everyone for piping up about recommended hepatologists and family/spouse testing. My doc suggested getting tested again in 6 months, but I am not concerned.
Good holiday weekends to all. :-)