Hi , my name name is Mik This all new to me this year, and I am scared as hell. I wanted to know if anyone had experience with treating at Jefferson Hospital and Dr. Finkel at the liver center? I have my first appointment and don't know what to expect. Do you get lost in the shuffle at a large city hospital or am I better off staying local. I don't know where i'm at as far as my liver but i've lost a lot of weight and never feel well. Thanks. Mik59
"Do you get lost in the shuffle at a large city hospital or am I better off staying local."
If you should have advanced liver disease only a liver transplant center can help you. Local hospitals know next to nothing about liver disease and can unknowingly harm a patient because of lack of knowledge.
I don't see Dr. Finkel listed. Is he a hepatologist? That is the type of doctor you need to see.
I sounds like you are need to be evaluated and have the proper tests to determine the extent of your liver disease. Biopsy, scans, physical etc.
"i've lost a lot of weight and never feel well" could all be signs of cirrhosis. The sooner you get diagnosed and treated the better.
Evaluation, Education And Consent
Step 1: Evaluation by Hepatologist
The first step is to be referred to one of the Jefferson hepatologists (liver specialists). A hepatologist reviews each patient's medical history and previous diagnostic tests and procedures and then examines and interviews the patient. From there, the hepatologist will determine if there are any alternative treatments for the patient and, if not, if the timing is right to refer the patient for a transplant evaluation.
Step 2: Preapproval for Transplant Evaluation
There are several steps that must be completed before a patient can be evaluated by Jefferson's Liver Transplant Program. First, the patient's referring physician(s) sends medical information to the transplant office. Meanwhile, the Liver Transplant Program's financial coordinator contacts the patient's payer(s) to ensure Jefferson has the necessary authorizations before the evaluation.
Once the financial coordinator has obtained the necessary authorization, a Liver Transplant Program social worker (a professional who evaluates readiness for transplantation and helps support your psychosocial needs) reaches out to the patient to set up the first appointment.
Step 3: Education and Consent for Transplant Evaluation
Patients should plan to spend about half a day for the education and consent process. At this appointment, patients meet with a variety of professionals from the Liver Transplant Program and spend an hour with a social worker.
That session is followed by a two-hour education and consent session with a transplant coordinator (a nurse who serves as the patient's point of contact throughout the process). During this session, patients receive a thorough overview of liver disease, as well as an overview of Jefferson's Program and personnel.
The transplant coordinator also reviews the in-depth Consent for Evaluation for Liver Transplant, which patients must understand and sign before they can proceed with a transplant evaluation.
Finally, the transplant coordinator outlines the medical tests and consultations that must be performed as part of the evaluation process.
Step 4: Evaluation for Liver Transplant
After completion of the first three steps, a pretransplant coordinator will reach out to the patient to introduce him- or herself and to reiterate the tests and consultations that must be completed as part of the transplant evaluation process. Each patient's requirements vary depending on his or her condition and/or circumstances. The testing and consultations typically take two or three days to complete.
Toward the end of the transplant evaluation process, the patient views a presentation about the Model for End-Stage Liver Disease (MELD) system, as well as the process for listing patients and allocating organs in our region and across the United States.
Once all of the testing and consultations are complete, the Liver Transplant Program's multidisciplinary committee reviews the patient's case to determine that no other treatment options are available and that the patient has no contraindications (such as heart disease or lung disease). Following that review and approval, the patient is listed for a liver.
Getting Listed And Staying Ready
Step 5: Being Listed
If approved for a transplant, the patient receives a phone call from the transplant coordinator, as well as a written letter in the mail confirming placement on the United Network for Organ Sharing (UNOS) transplant list. At this time, we will also provide instructions for what to do next.
Step 6: Staying Ready
Whether they wait years or are fortunate to be matched earlier, patients have an important role to play in the transplantation process. During the wait, it is critically important that patients:
Provide blood samples on a monthly basis for the Jefferson tissue-typing lab
Keep all studies up to date, as indicated in the instructions we provide
Keep us informed of any health changes; these changes (such as recently diagnosed conditions or other surgeries) can affect a patient's ability to receive a transplant
Ensure that we always have the latest insurance information so that we can stay on top of any changes in the financial situation
Contact us with any changes to phone numbers and/or address; just as important, patients must leave their phones on around the clock so they can be reached if and when a potential organ becomes available
If we can't reach a patient, if tests or blood work aren't up to date or if insurance coverage has changed, it could mean the difference between receiving an organ – and continuing to wait.
Transplantation And Ongoing Follow-Up
Step 7: Transplantation
Once a suitable organ is identified, the patient undergoes the actual transplantation surgery. Some patients receive a few hours of notice; in other cases, patients must drop everything and head to the Emergency Room right away. If the organ is from a live donor, surgery will be scheduled in advance.
Depending on each patient's history and circumstances, liver transplant surgery can take as little as seven or eight hours or as long as 12 to 24 hours. Following surgery, patients typically remain in the hospital for seven to 10 days. Jefferson discharges liver transplant patients only when they are medically and surgically stable. Visiting nurses perform home visits to ensure that patients are monitored and that they're taking medications properly. These nurses also address any questions from patients and their families.
Step 8: Ongoing Follow-Up
The work isn't over after the transplant. We develop a tailored follow-up program for each liver transplant patient. In general, though, patients can expect to be seen in the clinic and have lab work weekly for the first month after the transplant. From there, patients receive follow-up care from transplant hepatologists and surgeons.
Welcome to the forum! I'm in California and don't know anything about your physician or that hospital, but I wanted to say that in general, if you have hep c you are probably better off with a doctor who is part of a large hospital clinic, especially if you either have significant liver damage or are going to try treating the virus. Current treatments are much more effective than earlier treatment options, so hep c is by and large a curable disease now. However, the drugs used are pretty heavy-hitting and can cause many side effects. It is way better to have a highly experienced hepatologist in charge when you are treating. You didn't say what tests you've had done yet, but they will want to determine the genotype of your virus, as treatments vary for different genotypes. They will run additional blood tests, probably an abdominal ultrasound and a liver biopsy. The biopsy is the best method of determining how much damage has already been done by the virus. It measures fibrosis on a scale of 0 to 4, with 0 being no damage and 4 being cirrhosis. The number is very important in determining urgency and length of treatment. Look around on this website as much as you can before seeing the doctor, as it is really important to educate yourself to be sure you ask the right questions and make the best decisions. People on the forum are quite knowledgeable and can help a lot with interpreting stuff when you have specific questions. Good luck!
I found Dr. Fenkel so if this is the doctor you will see, he is the correct type of doctor, a Hepatologist. (different spelling so not sure this is your doc)
Jonathan M. Fenkel, MD
Jefferson University Hospital
Gastroenterology - Hepatology
Gastroenterology - Liver Disease/Cancer
Gastroenterology - Liver Transplantation
Gastroenterology - Endoscopy
Just know that we were all frightened when we were diagnosed. The more you know about Hep C and the more you learn, the less frightened you will be.
Get hard copies of all lab reports and lab tests, other tests such as biopsy reports, CT scan, Ultrasound, etc. Don't get summaries, get the actual copy of the report. This is very important as you go along, especially when you start treatment, but also all of the time, so that you know what is going on with your body and the tests.
Here are some questions you may wish to ask when you see the Hepatologist:
guestions for doctor for newbies to tx
May 05, 2012 - 4 comments
It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.
Questions for the doctor:
How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?
Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?
Mik59 it's normal to be scared when you are just waiting to know what will happen next with appointments and you must have lots of questions to ask as well. Write them down and take them with you. They will determine the best treatment for you. You are in good hands. Try not to worry. This is a waiting game to get started but it will be worth it.....take care
My husband is starting treatment next week. We were at Jefferson with dr. Rossi but she left with the head of Jefferson's hep dept to go to Einstein. That is where we are now. The nurses and office staff are amazing, easy to get in touch with quick response ti e ans appts. and I'm happy that we transferred over. Dr. Simona Rossi at Einstein in Philly is really a wonderful physician and do down to earth.
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