Aa
I cant get TX only option is to see if can have a transplant?
has anyone been here before, i am sure theres plenty of tests some regular, idk what they are Im 33 i was told i cant have treatment for Hepatitis C, I can have a transplant or die
I dont drink or smoke i do all the good stuff like for 2 yrs im not yellow. will i go yellow? idk anyway they said you have about 5 years if you dont have the operation. So now im seeing people about an operation I know about only from reading. I just wanted to hear of a personal experience if you know someone who's been there done that what it was all like are they still good cause after I have it I will have to have treatment if I am able to have the transplant or if I survive the Transplant.
So in all I just would like to know a timeline for how this might go down if you can help. anything else you wanna add feel free...
ta.
A33
I dont drink or smoke i do all the good stuff like for 2 yrs im not yellow. will i go yellow? idk anyway they said you have about 5 years if you dont have the operation. So now im seeing people about an operation I know about only from reading. I just wanted to hear of a personal experience if you know someone who's been there done that what it was all like are they still good cause after I have it I will have to have treatment if I am able to have the transplant or if I survive the Transplant.
So in all I just would like to know a timeline for how this might go down if you can help. anything else you wanna add feel free...
ta.
A33
Hi.
See the link to "A Patients Guide tor Liver Transplant" that will tell you about the entire process from start to finish with liver transplant.
"Cirrhosis is a long-term condition where normal liver cells are damaged and begin to die. This causes the liver to not function as it should. In the early stages of cirrhosis you may not know it is happening. Eventually, cirrhosis can cause complete liver failure where the liver completely stops working. Cirrhosis can be caused by drinking too much alcohol, hepatitis, certain diseases, medications, and changes in the area around the liver itself causing blockage of the biliary tract (the tube the carries bile). Cirrhosis can eventually lead to symptoms like ascites (fluid build up in the belly) and jaundice (yellowing of the skin). Cirrhosis is a serious medical condition that will require a great deal of attention by your doctor."
Questions:
What is my current health status?
What is my MELD score?
What is my prognosis?
I have stopped drinking alcohol will my cirrhosis get better?
What additional tests do I need and how do I do them?
What changes should I make to my diet or lifestyle?
What medications, vitamins, supplement, etc. should I avoid?
Additional Questions You May Consider Asking
Am I a candidate for a liver transplant?
What other options do I have besides transplantation?
What are the risks of transplantation?
What are the benefits of transplantation?
What are the transplant success rates at this hospital?
How many transplants do you perform at this hospital each year?
How long has this hospital been doing transplants?
What does the evaluation and testing process include? How does it affect whether I am put on the list?
How do my test results affect whether or not I am put on the list?
How long is the waiting list? At what MELD score are you transplanting at?
Do I need to stay close to the transplant hospital while I am put on the waiting list?
Will the transplant center team advise my local health care providers of my care requirements?
Here is a very good "A Patients Guide tor Liver Transplant" that describes the full process from getting listed to living post transplant.
http://www.universitytransplantcenter.com/files/Liver_Guide.pdf
Hope this helps.
Good luck to you.
Hector
See the link to "A Patients Guide tor Liver Transplant" that will tell you about the entire process from start to finish with liver transplant.
"Cirrhosis is a long-term condition where normal liver cells are damaged and begin to die. This causes the liver to not function as it should. In the early stages of cirrhosis you may not know it is happening. Eventually, cirrhosis can cause complete liver failure where the liver completely stops working. Cirrhosis can be caused by drinking too much alcohol, hepatitis, certain diseases, medications, and changes in the area around the liver itself causing blockage of the biliary tract (the tube the carries bile). Cirrhosis can eventually lead to symptoms like ascites (fluid build up in the belly) and jaundice (yellowing of the skin). Cirrhosis is a serious medical condition that will require a great deal of attention by your doctor."
Questions:
What is my current health status?
What is my MELD score?
What is my prognosis?
I have stopped drinking alcohol will my cirrhosis get better?
What additional tests do I need and how do I do them?
What changes should I make to my diet or lifestyle?
What medications, vitamins, supplement, etc. should I avoid?
Additional Questions You May Consider Asking
Am I a candidate for a liver transplant?
What other options do I have besides transplantation?
What are the risks of transplantation?
What are the benefits of transplantation?
What are the transplant success rates at this hospital?
How many transplants do you perform at this hospital each year?
How long has this hospital been doing transplants?
What does the evaluation and testing process include? How does it affect whether I am put on the list?
How do my test results affect whether or not I am put on the list?
How long is the waiting list? At what MELD score are you transplanting at?
Do I need to stay close to the transplant hospital while I am put on the waiting list?
Will the transplant center team advise my local health care providers of my care requirements?
Here is a very good "A Patients Guide tor Liver Transplant" that describes the full process from getting listed to living post transplant.
http://www.universitytransplantcenter.com/files/Liver_Guide.pdf
Hope this helps.
Good luck to you.
Hector
PS: If the TP team doesn't put you in touch with a dietician during the visit, you should ask if they might refer you to one in consideration of your history.
Considering that your family is still in denial, I would highly recommend that you bring them along with you to your Transplant appointments. As your condition is serious, it's important to have someone with you at appointments whenever possible -- maybe it will help your family have a better understanding of what your situation is as well.
When you go to the appointments, keep a notebook, jot down things to help you remember what is discussed, and also take a list of questions with you... things you think of between now and the appointment. Make sure you list all your symptoms, whatever they may be so that you can ask your doctors if they can address any concerns for you... often times we get in the office and forget what we wanted to ask, so having things written down always helps. Keep the list in priority order, so you have the most important questions first in case you run out of time with the doctor.
When the doctor is examining you, you should feel free to ask what he's looking for, why he is checking different areas, and what his findings are. Remember too, to always ask for copies of all your reports before leaving your doctor's visits. It's a good way to help track your own progress and have things to refer to later as you get a better understanding of what all the testing means.
You may want to ask your TP team what your MELD is, and what the current transplant MELD is in your region. Transplantation listing currently is based on a patient's MELD number, a calculation of based on lab results of bilirubin, INR, and creatnine (blood tests), and ask them if they see any reason why you would not be a candidate for transplantation based on their findings.
Having hemochromatosis in addition to hep C makes it especially essential that you reduce your iron: NO iron in your diet. That means no iron-fortified breakfast cereals, no multi-vitamins with iron in them, no red meat, no spinach or broccoli, and NO cooking in iron skillets. Start reading labels for both sodium AND iron content... veno sections may be a necessary evil with high iron and cirrhosis, but there's a lot you can do to avoid them being done as frequently.
I hope the visit with the TP team goes well for you. Good luck and keep us posted. ~eureka
When you go to the appointments, keep a notebook, jot down things to help you remember what is discussed, and also take a list of questions with you... things you think of between now and the appointment. Make sure you list all your symptoms, whatever they may be so that you can ask your doctors if they can address any concerns for you... often times we get in the office and forget what we wanted to ask, so having things written down always helps. Keep the list in priority order, so you have the most important questions first in case you run out of time with the doctor.
When the doctor is examining you, you should feel free to ask what he's looking for, why he is checking different areas, and what his findings are. Remember too, to always ask for copies of all your reports before leaving your doctor's visits. It's a good way to help track your own progress and have things to refer to later as you get a better understanding of what all the testing means.
You may want to ask your TP team what your MELD is, and what the current transplant MELD is in your region. Transplantation listing currently is based on a patient's MELD number, a calculation of based on lab results of bilirubin, INR, and creatnine (blood tests), and ask them if they see any reason why you would not be a candidate for transplantation based on their findings.
Having hemochromatosis in addition to hep C makes it especially essential that you reduce your iron: NO iron in your diet. That means no iron-fortified breakfast cereals, no multi-vitamins with iron in them, no red meat, no spinach or broccoli, and NO cooking in iron skillets. Start reading labels for both sodium AND iron content... veno sections may be a necessary evil with high iron and cirrhosis, but there's a lot you can do to avoid them being done as frequently.
I hope the visit with the TP team goes well for you. Good luck and keep us posted. ~eureka
I'm such a mush head these days from doing treatment.
I'm sure I could come up with some questions but instead I emailed HectorSF to see if he would answer your question.
He is currently on the transplant list and has a wealth of knowledge.
Good luck
OH
I'm sure I could come up with some questions but instead I emailed HectorSF to see if he would answer your question.
He is currently on the transplant list and has a wealth of knowledge.
Good luck
OH
can you suggest some Questions I might ask the Transplant team in case they forget to mention it? I see them this week so ill let you know how it goes.
Instead of 50 pages of material, maybe your parents can digest a page or two of clearly explained information.
On the other hand, they may not be able to handle the truth about your situation.
You may need to progress forward whether they can understand or accept your situation of not.
Best of luck,
OH
On the other hand, they may not be able to handle the truth about your situation.
You may need to progress forward whether they can understand or accept your situation of not.
Best of luck,
OH
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Exercise is very important with progressing cirrhosis, as well as good diet: of course no alcohol, but low fat, high protein, low iron, and low salt are essential (especially with the edema, cut out the sodium in your diet and work up a sweat if you can). Hope that helps, and know you're not alone ... welcome to the forum. ~eureka