In my last post I talked about the long process of making it onto a liver transplant waiting list. In order for you all to appreciate how involved the process really is, I though it would be an interesting exercise for me to lay-out what is actually required during the evaluation process at every single center that you would like to be listed at. Remember, Dad went through this twice, because he is especially lucky. Not like getting listed twice made his situation any better...
The pre-transplant evaluation process is a mechanical process that is highly regimented and ignores any patient individuality or humanity. For all of you that feel you don't get enough individual attention when you see a physician, consider what is involved in getting onto a US-based organ transplant list. You are essentially treated like a black box that every analyst involved (mostly highly specialized health care professionals) has to evaluate you as an inanimate object and check the box. Once that box is checked, however, everything has to be analyzed together to consider you for the list. It all comes down to treating a patient that needs an organ for survival like something that needs to be 'managed' and the associated risks to be assessed before proceeding.
Pre-transplant Evaluation Requirements:
-Consult with the GI at the liver transplant center. This is someone that will be your primary physician if you were listed at that particular center. They are usually very knowledgeable about the specific problems you are having since they pretty much only see patients that are on the waiting list for a liver transplant or are recovering from a liver transplant. They have good ideas about how to manage the symptoms, but have no say about when you get a transplant--assuming you get listed--and can only attempt to manage your symptoms. These doctors are limited since they can't do anything to fix/treat the underlying problem (failing liver) to expedite the liver transplant. They make that clear throughout the process, too. At least they are honest.
-Meet with the surgeon. This is a very specialized surgeon that performs liver transplants only. Even though--assuming you make it to surgery--they are performing an extremely risky, difficult, and LONG surgery, you meet with this person for about 10 minutes. Tops. Comforting.
-Wait in several waiting rooms. Attempt to navigate huge hospitals that take-up several blocks of a downtown area to get to each appointment. Try to figure out trams between different centers associated with the same hospital. Try to find parking. Try to find your car. Wait for a shuttle. Wait a lot more in several waiting rooms.
-Get blood tests. LOTS of blood tests. If you know you have liver disease, you probably already had a lot of blood tests, but this is taking blood tests to a new level. If you're like Dad and anemic already, this makes this part of the process even more enjoyable since they take out many, many tubes of blood at each sitting. Or even better, some of these hospitals have people doing blood tests all day that are relatively insensitive to each patient that comes through this factory-like setting of a lab. This means that often they have trouble collecting the blood correctly, meaning more blood tests and jabs. The blood tests continue like this after making the waiting list, but this is where it really ramps-up.
-Other 'simple' diagnostic tests. Since I mention blood tests, I would hate to leave-out all of the other "mildly" invasive diagnostic tests performed. There is the 24 hour urine collection and chest x-rays. There is the abdominal CT scan and the abdominal MRI. Then, there's the pulmonary function test with ABG (arterial blood gases). These are all designed to determine if there's a major issue other than the liver disease that could make the surgery less successful.
-Other invasive procedures. There is plenty of other procedures that either would have already been done (in Dad's case, due to his previous bleeds or age) or that are expected to be performed that are invasive but not directly related to his liver, per se. This includes getting an endoscopy and colonoscopy. There is also the PPD skin test to check for tuberculosis, although that's really just a drop in the bucket all things considered, just another thing to add to this very long list.
-Meet with a financial specialist. Well, the hospital needs to make sure either you or your insurance will pay! Have a guess on how much a transplant costs? Well, the surgery itself is in the $100,000-200,000 range. But that's only a part of the equation. Let's not forget all of the medications before the surgery (Dad is currently taking several thousand dollars worth per month) and the long list of medications after the surgery (for the rest of his life he'll be on anti-rejection meds). Remember, most people this sick can't work, so there's lost pay--at least temporarily (temporarily = many months). Also, Dad has to pay for living expenses in IU for several months.
-Vaccinations. Assume if there is a vaccine, that Dad had to take it. Document it. Send the confirmation to the transplant office.
-Meet with a social worker. They really need to make sure that you have a support network available to handle all of the stuff you have to go through during and after the surgery.
-Meet with a psychologist. The hospital needs to make sure that you mentally prepared for this kind of surgery. They also make sure you will be of sound mind to be able to take all of the organ rejection medications you will need the rest of your life after the surgery. My favorite part of these exams is how they never really have an answer for: "how come someone that was an alcoholic and/or drug abuser gets a liver before me in this system?" [for the record, I ask these questions, not Dad] Am I sounding bitter? I realize not all patients on the transplant list are alcoholics and/or drug abusers, but it certainly isn't fair that people that abuse or have abused their bodies can move ahead on the list of someone that got unlucky enough to be hit by a drunk driver over 30 years ago and received a tainted blood transfusion. It is also unfair that the system is set-up in a way where it essentially ignores people that are really deserving of a liver transplant. Perhaps I need the psychologist? Nah...that's what this blog is for!
-Become educated. This is probably Dad's second favorite part. Here, they have a several hour course to explain the process of the waiting list, the surgery itself, and what to expect after surgery. To someone like my father who is a physician, this comes across as quite demeaning. Of course, since it's a highly regulated system (it may not be fair, but the rules are strict!) neither UCLA nor IU would allow my father to opt out of this even though he is a physician. Are you getting a picture of how ridiculous this is? My favorite aspect of this check box is that both my father and I have been told many times by both UCLA and IU professionals to consider going to a support group to become further educated whenever we complain about something. Yes, please send me to a support group even though it won't change what I'm upset about--that is very educational for me.
-Dental clearance. I saved the best for last! This is probably Dad's favorite. UCLA did not have dental clearance requirements, but IU did. This is one case where the fault lies less on the system and more on Dad, however this created quite a firestorm last fall. While going through the evaluation process at IU, they asked for his dentist to return a clearance form. Dad went to get dental clearance in Simi Valley knowing he probably needed a few cavities filled from several years of dental neglect. Well, needing to fill a few cavities turned into needing 11 teeth pulled. YES--ELEVEN TEETH PULLED FROM HIS HEAD. Understandably, Dad resisted, but relented knowing eventually the only way to get on the list at IU was to comply and get the teeth pulled so his dentist could send back the form for this check box. He went to an oral surgeon on a Friday morning a couple of weeks after returning home from the evaluation week in Indiana, had his teeth pulled, and went back to work. Not to say he wasn't in a lot of pain--he struggled for a couple of weeks in a way I haven't seen for a while. But he had eleven teeth pulled! To get on a transplant list! That is quite a check box!! How meshhugina can things get?
I listed several components associated with the check boxes that the selection committe would then consider during the patient presentation. My understanding is that they basically look at all of the 'risk factors' and characterize them before they make a decision to put someone on the transplant list. They don't even bother presenting a patient before every check box is checked, however there are still many times where a patient is denied access to the list based on how the output looks like all pulled together. And sitting here today coming close to three years from the first time that Dad went through this process the first time, it is absolutely mind boggling that he's still waiting. Dad checked all of the boxes, had an acceptable risk assessment outcome, was wait listed, and is still waiting for a liver transplant!!!
My mazel.
The pre-transplant evaluation process is a mechanical process that is highly regimented and ignores any patient individuality or humanity. For all of you that feel you don't get enough individual attention when you see a physician, consider what is involved in getting onto a US-based organ transplant list. You are essentially treated like a black box that every analyst involved (mostly highly specialized health care professionals) has to evaluate you as an inanimate object and check the box. Once that box is checked, however, everything has to be analyzed together to consider you for the list. It all comes down to treating a patient that needs an organ for survival like something that needs to be 'managed' and the associated risks to be assessed before proceeding.
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| http://www.sciencedirect.com/science/article/pii/S0048969708006931 |
Pre-transplant Evaluation Requirements:
-Consult with the GI at the liver transplant center. This is someone that will be your primary physician if you were listed at that particular center. They are usually very knowledgeable about the specific problems you are having since they pretty much only see patients that are on the waiting list for a liver transplant or are recovering from a liver transplant. They have good ideas about how to manage the symptoms, but have no say about when you get a transplant--assuming you get listed--and can only attempt to manage your symptoms. These doctors are limited since they can't do anything to fix/treat the underlying problem (failing liver) to expedite the liver transplant. They make that clear throughout the process, too. At least they are honest.
-Meet with the surgeon. This is a very specialized surgeon that performs liver transplants only. Even though--assuming you make it to surgery--they are performing an extremely risky, difficult, and LONG surgery, you meet with this person for about 10 minutes. Tops. Comforting.
-Wait in several waiting rooms. Attempt to navigate huge hospitals that take-up several blocks of a downtown area to get to each appointment. Try to figure out trams between different centers associated with the same hospital. Try to find parking. Try to find your car. Wait for a shuttle. Wait a lot more in several waiting rooms.
-Get blood tests. LOTS of blood tests. If you know you have liver disease, you probably already had a lot of blood tests, but this is taking blood tests to a new level. If you're like Dad and anemic already, this makes this part of the process even more enjoyable since they take out many, many tubes of blood at each sitting. Or even better, some of these hospitals have people doing blood tests all day that are relatively insensitive to each patient that comes through this factory-like setting of a lab. This means that often they have trouble collecting the blood correctly, meaning more blood tests and jabs. The blood tests continue like this after making the waiting list, but this is where it really ramps-up.
-Other 'simple' diagnostic tests. Since I mention blood tests, I would hate to leave-out all of the other "mildly" invasive diagnostic tests performed. There is the 24 hour urine collection and chest x-rays. There is the abdominal CT scan and the abdominal MRI. Then, there's the pulmonary function test with ABG (arterial blood gases). These are all designed to determine if there's a major issue other than the liver disease that could make the surgery less successful.
*Taking a moment to tell a good story about one of these tests: during the IU evaluation process (I was lucky enough to be with Dad during that week in Indiana in September), Dad had an MRI as scheduled only to find-out that he may have some serious damage to his stomach. During his bleed in May, the GI on call in Simi Valley put metal clips into his stomach to try to stop the bleeding. For those of you that know about MRIs (magnetic resonance imaging), metal +MRI = bad. After the tech performing this MRI realized there was something in there causing strange signals, she stopped the procedure. Several physicians, nurses, and myself began making phone calls and performing internet searches to figure out what exactly was inside my father and if we need to be doing something to make sure they didn't move (and rip through his internal tissues) during the MRI. In general, this would be a bad thing, but someone that has variceal bleeding and ESLD, this is potentially a horrific scenario. Thankfully, everything seemed to be okay after a few agonizing hours, but that was certainly a fun 'non-invansive' appointment.*-Cardiovascular Exams and tests. They really want to make sure you can handle an intense surgery before you are considered for the waiting list, so you had to meet with a cardiologist. I find it very interesting that you have to be extremely healthy to go through this liver transplant, even though one of the most important organs in your body is failing and bringing many important functions in the body to a halt in the meantime. Anyhow, the cardiologist has a consult with you and reviews the cardiovascular work-up you've had. In Dad's case, this is multiple work-ups. This includes: EKG, echo, and stress test. There is also discussion of such things as beta blockers, since a lot of liver diseased patients are on these meds to control the portal hypertension. At UCLA, that was it for the most part, however IU decided it was necessary to take this work-up one step further. Dad had to undergo a very invasive procedure known as a cardiac catheterization. This is an outpatient surgical procedure performed by the cardiologist and was done just to make sure his heart looked ok with a camera--why just go by all of the dozens of cardiovascular tests he's had done thus far over the past few years? Let's just make sure we can take a look ourselves, shall we? That was also fun to consider any potential complications that may occur since--once again--Dad is at a higher risk for bleeding and once he starts bleeding he is facing some serious trouble.
-Other invasive procedures. There is plenty of other procedures that either would have already been done (in Dad's case, due to his previous bleeds or age) or that are expected to be performed that are invasive but not directly related to his liver, per se. This includes getting an endoscopy and colonoscopy. There is also the PPD skin test to check for tuberculosis, although that's really just a drop in the bucket all things considered, just another thing to add to this very long list.
-Meet with a financial specialist. Well, the hospital needs to make sure either you or your insurance will pay! Have a guess on how much a transplant costs? Well, the surgery itself is in the $100,000-200,000 range. But that's only a part of the equation. Let's not forget all of the medications before the surgery (Dad is currently taking several thousand dollars worth per month) and the long list of medications after the surgery (for the rest of his life he'll be on anti-rejection meds). Remember, most people this sick can't work, so there's lost pay--at least temporarily (temporarily = many months). Also, Dad has to pay for living expenses in IU for several months.
-Vaccinations. Assume if there is a vaccine, that Dad had to take it. Document it. Send the confirmation to the transplant office.
-Meet with a social worker. They really need to make sure that you have a support network available to handle all of the stuff you have to go through during and after the surgery.
-Meet with a psychologist. The hospital needs to make sure that you mentally prepared for this kind of surgery. They also make sure you will be of sound mind to be able to take all of the organ rejection medications you will need the rest of your life after the surgery. My favorite part of these exams is how they never really have an answer for: "how come someone that was an alcoholic and/or drug abuser gets a liver before me in this system?" [for the record, I ask these questions, not Dad] Am I sounding bitter? I realize not all patients on the transplant list are alcoholics and/or drug abusers, but it certainly isn't fair that people that abuse or have abused their bodies can move ahead on the list of someone that got unlucky enough to be hit by a drunk driver over 30 years ago and received a tainted blood transfusion. It is also unfair that the system is set-up in a way where it essentially ignores people that are really deserving of a liver transplant. Perhaps I need the psychologist? Nah...that's what this blog is for!
-Become educated. This is probably Dad's second favorite part. Here, they have a several hour course to explain the process of the waiting list, the surgery itself, and what to expect after surgery. To someone like my father who is a physician, this comes across as quite demeaning. Of course, since it's a highly regulated system (it may not be fair, but the rules are strict!) neither UCLA nor IU would allow my father to opt out of this even though he is a physician. Are you getting a picture of how ridiculous this is? My favorite aspect of this check box is that both my father and I have been told many times by both UCLA and IU professionals to consider going to a support group to become further educated whenever we complain about something. Yes, please send me to a support group even though it won't change what I'm upset about--that is very educational for me.
-Dental clearance. I saved the best for last! This is probably Dad's favorite. UCLA did not have dental clearance requirements, but IU did. This is one case where the fault lies less on the system and more on Dad, however this created quite a firestorm last fall. While going through the evaluation process at IU, they asked for his dentist to return a clearance form. Dad went to get dental clearance in Simi Valley knowing he probably needed a few cavities filled from several years of dental neglect. Well, needing to fill a few cavities turned into needing 11 teeth pulled. YES--ELEVEN TEETH PULLED FROM HIS HEAD. Understandably, Dad resisted, but relented knowing eventually the only way to get on the list at IU was to comply and get the teeth pulled so his dentist could send back the form for this check box. He went to an oral surgeon on a Friday morning a couple of weeks after returning home from the evaluation week in Indiana, had his teeth pulled, and went back to work. Not to say he wasn't in a lot of pain--he struggled for a couple of weeks in a way I haven't seen for a while. But he had eleven teeth pulled! To get on a transplant list! That is quite a check box!! How meshhugina can things get?
I listed several components associated with the check boxes that the selection committe would then consider during the patient presentation. My understanding is that they basically look at all of the 'risk factors' and characterize them before they make a decision to put someone on the transplant list. They don't even bother presenting a patient before every check box is checked, however there are still many times where a patient is denied access to the list based on how the output looks like all pulled together. And sitting here today coming close to three years from the first time that Dad went through this process the first time, it is absolutely mind boggling that he's still waiting. Dad checked all of the boxes, had an acceptable risk assessment outcome, was wait listed, and is still waiting for a liver transplant!!!
My mazel.
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