Aa
what day is this
sometimes the answer is worse than not knowing,I finally got in to see a specialist and his short answer was get pre-screened for a liver transplant. I was hoping to be told I could start treatment but apparantly they feel my liver is too damaged. I have known about hep c 1a for a few years but have not had any major illness untill now. It all started in june when I was having alot of joint pain and my doc gave me naproxen and it made me swell up like kermit. I am taking spironalact for the fluid and tramadol for the pain. Did anyone else get news like this or should I get a second guess?.
ps good site
ps good site
I can get my labs but my pcp did not get them to the gi by the time of my appointment, you did make some good points and I will follow up as you advised
I still think it is best to go to the transplant center for evaluation if you get a referral, especially if it is the only center in your state. There are so many people that need livers that you need to be sure and jump through all the hoops they place in front of you to get listed and get the liver. The comment about flying to an evaluation was just highlighting that you don't want the doctors to think that you are not a serious candidate psychologically or otherwise for a transplant. They reject care to people for all sorts of reasons, and if they are the only transplant center in your state, then you might have a hard time going elsewhere to get a liver. I would not miss any appointments with them, especially the initial consultation. They want to see evidence from you that you are committed to getting a liver and will take care of it for many years. These centers are complex bureaucracies and have lots of egos that that often make life and death decisions. I hated waiting for my first evaluation, but I knew that nobody else in the state would be better at evaluating my condition and that they were the only people in the state that could do anything about saving my life if I needed a liver. I don't know why you can't get your labs. I would keep asking the doctor or, if they were done in a hospital, check with the records section of the hospital to get copies.
Good for you, just four days left! I expect a full preliminary UND/SVR report in the very near future!
Thanks for giving us the inside dish on how the transplant process works and how you apparently managed to just squeak in.
Obviously, you needed the transplant, but without rehashing the whole thing, "rancross" may not. But given the long waiting time for evaluation you descibe,
hopefully rancross can set up a date now, but in the meanwhile (without delaying the transplant evaluation process) see a liver specialist to get another assessment of whether he is a suitable treatment candidate. That would be the best of two worlds as I see it.
Again, congrads on finishing up treatment.
-- Jim
Thanks for giving us the inside dish on how the transplant process works and how you apparently managed to just squeak in.
Obviously, you needed the transplant, but without rehashing the whole thing, "rancross" may not. But given the long waiting time for evaluation you descibe,
hopefully rancross can set up a date now, but in the meanwhile (without delaying the transplant evaluation process) see a liver specialist to get another assessment of whether he is a suitable treatment candidate. That would be the best of two worlds as I see it.
Again, congrads on finishing up treatment.
-- Jim
hey,
it was a gastro doc and he said no to the biopsy. I only have a egd scheduled to look for signs of cancer. there are supposed to be veins in the throat that would show this
it was a gastro doc and he said no to the biopsy. I only have a egd scheduled to look for signs of cancer. there are supposed to be veins in the throat that would show this
hi,
I thank you for spending some time on my problem. I do live in a onetransplant state and could not afford to fly, I do have most of the outward signs you described and feel that the eval was probably correct. My only question was I got this eval without the gi first seeing the his test results, He didn't even have the pcp bloodwork that was going on for weeks but did have the hospital results where she had put me after the first bloodwork. I was having an ascites attack from the naproxin she prescribed. I also need to ask if you know if spironalact causes any joint pain.
I thank you for spending some time on my problem. I do live in a onetransplant state and could not afford to fly, I do have most of the outward signs you described and feel that the eval was probably correct. My only question was I got this eval without the gi first seeing the his test results, He didn't even have the pcp bloodwork that was going on for weeks but did have the hospital results where she had put me after the first bloodwork. I was having an ascites attack from the naproxin she prescribed. I also need to ask if you know if spironalact causes any joint pain.
One of the hard parts of getting a transplant is getting accepted by the transplant center for evaluation. Once you get your foot in the door for the evaluation, you are on your way. The center's hepatologists make the decision whether to list, not the lesser liver docs who make the referral to the transplant center. The lesser doc and his documentation of your hep c and condition is probably helpful in getting you the evaluation. The lesser doc may not be saying you definitely need a liver; but his helping getting you evaluated at a transplant center will get you the answer.
My GI doc referred me to the only center in my state and it took four months for me to get the evaluation. When I got there the head of the program, which is now the fifth highest volume in the country, told me that I had two years to live but that the waiting list for a liver was three years. I got on as like #260 in Jan. 2000 on the wait list and they only did fifty transplants a year at that time (now, because of administrative changes, they do well over 150 a year). I never expected to live long enough to get a liver at that center because of the long list and my condition, but I at least got on a waiting list which made it easier for me to get listed at a hospital two hours from my house in another state and another UNOS district that had much shorter wait lists. It took three months (April 2000) to get on the list at the second center, but once I did, the wait time was retroactive to when I got on at the first center, so those extra months helped a lot in my getting a liver in the second center. I never got a call for a liver in the first center, but was at the top of the list for my weight in a five-state procurement area by October 2000 at the second center and had three calls to come down for a liver (all three livers were damaged though) before the year was out.
If I had sought out a second opinion my transplant evaluation date would probably have been delayed a few more months and who knows if I would even have had the energy to do all the work that it took to get myself into a position where I had a good chance at surviving. Getting transplanted earlier is probably almost always better than later, before your health gets worse. I think if someone is sick and referred for transplant evaluation he should jump on it as early in the disease cycle as possible. And first things first, save your life, then worry about treatment, which is a minor issue compared to saving your life. You are being sent for evaluation to people who are the best trained; just go see what the experts have to say. You may not have time to shop around for second opinions with this disease.
I 'm in week 72 of treatment. Only four days left!
My GI doc referred me to the only center in my state and it took four months for me to get the evaluation. When I got there the head of the program, which is now the fifth highest volume in the country, told me that I had two years to live but that the waiting list for a liver was three years. I got on as like #260 in Jan. 2000 on the wait list and they only did fifty transplants a year at that time (now, because of administrative changes, they do well over 150 a year). I never expected to live long enough to get a liver at that center because of the long list and my condition, but I at least got on a waiting list which made it easier for me to get listed at a hospital two hours from my house in another state and another UNOS district that had much shorter wait lists. It took three months (April 2000) to get on the list at the second center, but once I did, the wait time was retroactive to when I got on at the first center, so those extra months helped a lot in my getting a liver in the second center. I never got a call for a liver in the first center, but was at the top of the list for my weight in a five-state procurement area by October 2000 at the second center and had three calls to come down for a liver (all three livers were damaged though) before the year was out.
If I had sought out a second opinion my transplant evaluation date would probably have been delayed a few more months and who knows if I would even have had the energy to do all the work that it took to get myself into a position where I had a good chance at surviving. Getting transplanted earlier is probably almost always better than later, before your health gets worse. I think if someone is sick and referred for transplant evaluation he should jump on it as early in the disease cycle as possible. And first things first, save your life, then worry about treatment, which is a minor issue compared to saving your life. You are being sent for evaluation to people who are the best trained; just go see what the experts have to say. You may not have time to shop around for second opinions with this disease.
I 'm in week 72 of treatment. Only four days left!
Re-read your last post again and I think we're splitting hairs re the transplant evaluation thing. You're saying he'll be evaluated by a hepatologist at the transplant center and some of us are just saying get the second evaluation by the hepatologist first. I can see both points of view, but personally, I'd probably want to pick the doctor for my second opinion, have that evaluation, and then be evaluated if that is the consensus. Maybe he can just keep the transplant appointment open but in the meantime get that second opinion. I think all of us want the same thing and that is for "rancross" to get properly evaluated so he can understand his options.
-- Jim
-- Jim
I believe several people (including myself) asked if "rancross" had a biopsy, but no one suggested he have a biopsy. I do agree that biopsies are not always necessary (or desirable) for cirrhotics for many of the reasons you gave.
As to suggestions regarding a second opinion. I doubt if he's seeing Dr. J. because in another thread he mentioned that his doctor was "very young" or something to that effect.
But regardless of who his doctor is, I think second opinions are in order in cases where a doctor passes on treatment, because it's quite possible that another specialist will offer treatment, thus giving the patient an alternative at least to think about. I don't see this as delaying the transplant process, but an important step in determining if treatment is still an option.
I also do not share your assessment of the average GI, at least not from what I've read here over the past two years. I'm sure there are excellent GI's, but I def could see cases where a GI might think that stage 4's can't be treated, when we know that many stage 4's (not all) can be treated.
Haven't seen you here lately. If I remember correctly, you've both had a transplant and then treated successfully? So you certainly know the real estate we're talking about. How are you doing these days?
All the best,
-- Jim
As to suggestions regarding a second opinion. I doubt if he's seeing Dr. J. because in another thread he mentioned that his doctor was "very young" or something to that effect.
But regardless of who his doctor is, I think second opinions are in order in cases where a doctor passes on treatment, because it's quite possible that another specialist will offer treatment, thus giving the patient an alternative at least to think about. I don't see this as delaying the transplant process, but an important step in determining if treatment is still an option.
I also do not share your assessment of the average GI, at least not from what I've read here over the past two years. I'm sure there are excellent GI's, but I def could see cases where a GI might think that stage 4's can't be treated, when we know that many stage 4's (not all) can be treated.
Haven't seen you here lately. If I remember correctly, you've both had a transplant and then treated successfully? So you certainly know the real estate we're talking about. How are you doing these days?
All the best,
-- Jim
There is still risk involved with the transjugular.
The whole point though is that the biopsy isn't always necessary when people present with esld physical symptoms and blood test results that can't be attributable to any cause but late cirrhosis. Why take a chance with a biopsy at all when everything points to late cirrhosis? If the signs are there, refer the patient to the next level. So what if they can't find enough damage to transplant at the evaluation.
Lots of people don't see a liver doctor until their liver is ready to be transplanted. Experienced hepatologists -- who else would evaluate for a liver transplant-- can read the signs if they are severe enough. Rancross has approval to be evaluated for a transplant. This is a necessary step in getting a liver; why risk ending the lengthy and delicate process of getting a liver by seeking a second opinion before being evaluated in depth by a hepatologist? Hopefully, he won't need one; valuable time can be wasted if stops the process now, however, to get that second opinion. He said he saw a specialist, which I take to be at least a GI specialist. I agree that GI's are not very desirable for supervising treatment; but I bet every one of them has seen esld enough times to know when a patient is a good or near-candidate for a transplant evaluation. If a G.I. doctor hasn't experience with recognizing these signs, their training is seriously deficient. At the very least, Rancross' specialist would be erring on the side of caution.
The whole point though is that the biopsy isn't always necessary when people present with esld physical symptoms and blood test results that can't be attributable to any cause but late cirrhosis. Why take a chance with a biopsy at all when everything points to late cirrhosis? If the signs are there, refer the patient to the next level. So what if they can't find enough damage to transplant at the evaluation.
Lots of people don't see a liver doctor until their liver is ready to be transplanted. Experienced hepatologists -- who else would evaluate for a liver transplant-- can read the signs if they are severe enough. Rancross has approval to be evaluated for a transplant. This is a necessary step in getting a liver; why risk ending the lengthy and delicate process of getting a liver by seeking a second opinion before being evaluated in depth by a hepatologist? Hopefully, he won't need one; valuable time can be wasted if stops the process now, however, to get that second opinion. He said he saw a specialist, which I take to be at least a GI specialist. I agree that GI's are not very desirable for supervising treatment; but I bet every one of them has seen esld enough times to know when a patient is a good or near-candidate for a transplant evaluation. If a G.I. doctor hasn't experience with recognizing these signs, their training is seriously deficient. At the very least, Rancross' specialist would be erring on the side of caution.
I have to take exception with the statement "If your clotting factors are bad, there is no way that any hepatologist will grant you one". They can still do a transjugular biop ... I know this because I had one with my plats in the 50k's. It's actually supposed to be much safer because bleeding is kept within the circulatory system. Despite my "fears" this method was no big deal. Just had to rest at home for the remainder of the day (and have someone drive me there).
For all we know this guy is already seeing Ira Jacobson.
Where in rancross's post does he state that he was put on naproxen by his liver specialist? I must have missed that.
Rancross is being referred to a transplant center for a transplant evaluation. Is that supposed to be an irresponsible course? Seems reasonable to me, especially since no one who has responded knows with any certainty what kind of shape rancross is in.
Rancross, if you are evaluated at the only transplant center in your state, be careful about how aggressive you get with them in terms of getting a second opinion. You might wind up having to take an airplane flight to the next liver evaluation. And it will probably take time that you may not be able to afford to spend, given that you only "finally" got referred for your okay for a transplant evaluation. Getting the evaluation will probably take even longer.
If you have all or many of the following in your evaluation: large spleen, ascites, esophageal varices, low albumin, spider nervi, a palpable liver edge below your ribs, platelets less than say thirty or forty thousand, encephalopathy, high bilirubin, you may not need a liver biopsy. If your clotting factors are bad, there is no way that any hepatologist will grant you one no matter how much of a "gold standard" the biopsy is seen by the geniuses on this board.
Where in rancross's post does he state that he was put on naproxen by his liver specialist? I must have missed that.
Rancross is being referred to a transplant center for a transplant evaluation. Is that supposed to be an irresponsible course? Seems reasonable to me, especially since no one who has responded knows with any certainty what kind of shape rancross is in.
Rancross, if you are evaluated at the only transplant center in your state, be careful about how aggressive you get with them in terms of getting a second opinion. You might wind up having to take an airplane flight to the next liver evaluation. And it will probably take time that you may not be able to afford to spend, given that you only "finally" got referred for your okay for a transplant evaluation. Getting the evaluation will probably take even longer.
If you have all or many of the following in your evaluation: large spleen, ascites, esophageal varices, low albumin, spider nervi, a palpable liver edge below your ribs, platelets less than say thirty or forty thousand, encephalopathy, high bilirubin, you may not need a liver biopsy. If your clotting factors are bad, there is no way that any hepatologist will grant you one no matter how much of a "gold standard" the biopsy is seen by the geniuses on this board.
When you say that you saw a "specialist", are you referring to a
liver specialist (hepatologist) or a gastro or infectious disease specialist? You really want to see a liver specialist.
Did you have a biopsy? Do you know how much liver damage you have, i.e. what "stage" you are?
I agree with the others that a second opinion is in order. Perhaps if you tell us what part of the country you're in, someone here will come up with a name.
-- Jim
liver specialist (hepatologist) or a gastro or infectious disease specialist? You really want to see a liver specialist.
Did you have a biopsy? Do you know how much liver damage you have, i.e. what "stage" you are?
I agree with the others that a second opinion is in order. Perhaps if you tell us what part of the country you're in, someone here will come up with a name.
-- Jim
I agree with wyntre - anytime you have a medical issue like this where transplant is being considered its serious enough to warrant a second opinion. Also, do you have any specifics about the damage to your liver other than the fact that its bad? Have they done a biopsy (I'm supposing they have) but if so, what did it show exactly? If you could post some of those specifics here folks can respond kind of specifically to some of the issues specific to the type of damage or the issues you have with your liver.
Also, if you aren't getting copies of your biopsies, bloodwork, mri's, etc, this is a good time to start doing that and just put together your own folder at home. That also helps us to help you because you can post specifically what your results say from your reports. We aren't doctors obviously but people who have had some of the same issues or levels of damage can give you the benefit of their own experience in dealing with that, and how they managed their care.
Also, if you aren't getting copies of your biopsies, bloodwork, mri's, etc, this is a good time to start doing that and just put together your own folder at home. That also helps us to help you because you can post specifically what your results say from your reports. We aren't doctors obviously but people who have had some of the same issues or levels of damage can give you the benefit of their own experience in dealing with that, and how they managed their care.
it's Saturendnesday, I think....
sorry for your prognosis, but where are you....little town or big city meds. Not every "specialist" is create equally.
I can't believe he put you on naproxen for starters... that's like the Charles Manson of NSAIDS.
that right there has me wondering whether to trust his judgment.
even for people without liver issues this is a dinosaur bad *** drug with a huge rap sheet.
get a second opinion and another doc that knows more about liver metabolism as it relates to meds.
sorry for your prognosis, but where are you....little town or big city meds. Not every "specialist" is create equally.
I can't believe he put you on naproxen for starters... that's like the Charles Manson of NSAIDS.
that right there has me wondering whether to trust his judgment.
even for people without liver issues this is a dinosaur bad *** drug with a huge rap sheet.
get a second opinion and another doc that knows more about liver metabolism as it relates to meds.
I was in the same boat in 1999. Was getting ready for work one day, threw up a few times and wound up that morning in an eight-day coma from hep c that I did not know I had. Liver was too far gone for treatment (never had a biopsy, but they can tell how bad damage is anyway if lab numbers and physical condition are bad enough).
I am post transplant (June 2001) and can say from experience and without question that I could never have withstood SOC at the time. Now in week 72 of tx, and have a decent chance of finally getting rid of the virus.
By the time you get your liver, hopefully the 24 week course of treatment with the newer drugs added in will be the new standard of treatment. Get yourself into a good transplant program and try to relax and rest as much as possible and you will be fine!
I am post transplant (June 2001) and can say from experience and without question that I could never have withstood SOC at the time. Now in week 72 of tx, and have a decent chance of finally getting rid of the virus.
By the time you get your liver, hopefully the 24 week course of treatment with the newer drugs added in will be the new standard of treatment. Get yourself into a good transplant program and try to relax and rest as much as possible and you will be fine!
The Lord helps those who help themselves. We do our best but leave all the results to Him.
I would get a second opinion. Did you have a biopsy? I assume the doctors are responding to the biopsy results. Please save a copy of all your labs and tests for your own records. Is your doctor a gastroenterologist or hepatologist. The latter know much more about the best way to treat hep. C today. Some of the gastros are not up to date.
It is not so easy to get a transplant. There are many more people on the list than organs available and the wait is long. Is your doctor part of a larger teaching hospital?
I would get a second opinion. Did you have a biopsy? I assume the doctors are responding to the biopsy results. Please save a copy of all your labs and tests for your own records. Is your doctor a gastroenterologist or hepatologist. The latter know much more about the best way to treat hep. C today. Some of the gastros are not up to date.
It is not so easy to get a transplant. There are many more people on the list than organs available and the wait is long. Is your doctor part of a larger teaching hospital?
Just have faith and trust and strength.. he will take care of u.... U are never alone he is always with ya in ur walk..
That's really tough, rancross.
I'm fortunate to have discovered the virus as a stage 1 and I'm now on week 47 of 72.
After having been reading forum for the past year, i have to say my advice would be to go ahead and get pre-screened but ALSO go for a second opinion.
just my take.
best of luck and I'm sure some of the more experienced people will chime in with their thoughts.
You might want to trying re-posting this with a different title that included the terms
'liver transplant pre-screening' so the subject of your thread is more apparent.
You also might get more responses.
Best of luck,
wyntre
I'm fortunate to have discovered the virus as a stage 1 and I'm now on week 47 of 72.
After having been reading forum for the past year, i have to say my advice would be to go ahead and get pre-screened but ALSO go for a second opinion.
just my take.
best of luck and I'm sure some of the more experienced people will chime in with their thoughts.
You might want to trying re-posting this with a different title that included the terms
'liver transplant pre-screening' so the subject of your thread is more apparent.
You also might get more responses.
Best of luck,
wyntre
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