The first thing you need to know as an Alpha going to an ER is that most of the time, they have NO clue about your disease. Therefore, it is up to you to try to describe your disease, symptoms, history, and the reasons for the ER visit to them -- in 25 words or less.
OK, I'm joking about the 25 words... But for the most part, my experience has been that if an ER Doctor doesn't sense something that they fully understand and have a specific plan that they can follow for treating you (eg. Broken bones, bleeding, heart issues), then they want no part of your care. Hence, the mantra "Treat 'em and street 'em". Or better yet, the nickname of GOMER (Short for Get Out of My Emergency Room). These terms typically refer to older patients that continue to "bounce back" to the ER, but my experience shows that they are also being directed at those of us with medical conditions that they just don't understand...
On my first visit to the local Henry Ford ER, the ER doc had no clue about the disease, so I tried as best I could to describe everything. Main issues to be accomplished were: Checking my liver function tests, confirming no serious changes, checking for dehydration, and addressing the cramps, if possible.
On a night where the ER was NOT really that busy, I waited nearly 10 hours before finally telling the staff that I was leaving -- one way or another. During those hours, they had managed to take my blood... And that was the extent of it. Well, then the Doctor was able to leave the break area long enough to give me the following info: She had finally reviewed my blood work, told me that I was, indeed, dehydrated, and noticed that my Potassium level was low, advised me to add Potassium to my daily regimen, drink plenty of fluids, and check back with my primary care Doctor. Unfortunately, this was not my last experience with this particular ER Doctor -- As a matter of fact, if you can believe it, 10 hours of waiting without treatment for the dehydration and finally advice to "take some Potassium" was probably the best experience that I have had with her to date! More on this Doctor as my story continues...
Thursday, November 26, 2009
The symptoms begin to get worse...
So, I was on my way through the appointments and testing, and I noticed some disturbing changes going on -- The edema (swelling) in my legs was getting worse and worse, the fatigue was nearly unbearable, and, perhaps most distressing, I was having trouble remembering things and keeping my thoughts straight. As someone who handles large financial transactions, business decisions, and transactions with significant legal ramifications, having my mind getting cloudy (or as my wife lovingly refers to it), getting "loopy" -- more on that later -- is clearly not a good thing!
The first real symptoms that needed immediate treatment came from the edema. My Doctors were walking a fine line to balance the discomfort and issues related to the edema, with the treatment for them (diuretics) to remove the excess fluid. Overuse of the diuretics could cause kidney problems (very bad for a liver patient!), but there came a time when some diuretics were necessary. However, it seemed like no one was certain of all of the medications that I was on, regardless of their computer systems and the lists that I carried with me.
Therefore, the levels of the Lasix that I was taking (or Vitamin "P", as it is lovingly referred to by those who have made all of those trips to the restroom because of it!) quickly became too high, leaving me dehydrated. The first sign of it was muscle cramps throughout my body (but mostly in my feet, legs, and abdomen) that were excruciatingly painful and just wouldn't go away. And soon came my first trip to the Emergency Room since my diagnosis...
The first real symptoms that needed immediate treatment came from the edema. My Doctors were walking a fine line to balance the discomfort and issues related to the edema, with the treatment for them (diuretics) to remove the excess fluid. Overuse of the diuretics could cause kidney problems (very bad for a liver patient!), but there came a time when some diuretics were necessary. However, it seemed like no one was certain of all of the medications that I was on, regardless of their computer systems and the lists that I carried with me.
Therefore, the levels of the Lasix that I was taking (or Vitamin "P", as it is lovingly referred to by those who have made all of those trips to the restroom because of it!) quickly became too high, leaving me dehydrated. The first sign of it was muscle cramps throughout my body (but mostly in my feet, legs, and abdomen) that were excruciatingly painful and just wouldn't go away. And soon came my first trip to the Emergency Room since my diagnosis...
Chaos is the score upon which reality is written.
So, you've had your appointments, left seemingly gallons of blood for testing, and lost countless hours of sleep. And then, your transplant team (surgeon, social worker, psychologist, specialty Doctors -- eg. hepatologist, pulmonologist, etc..., and your transplant coordinator) have a meeting, and then you are voted on. To list, or not to list? With any "luck", you soon get the good news -- you are being placed on the transplant list!
At this point, your transplant coordinator will contact you and input your information into UNOS (the website mentioned in an earlier post). The staff there is then responsible to store your information, gather information about donated organs, and find an appropriate match. But what if there are numerous matches? Who gets the organ?
This is where the "score" comes in. In the case of a liver transplant, your score is called a MELD or PELD score. According to UNOS, "The Model for End-Stage Liver Disease (MELD) and Pediatric End-Stage Liver Disease (PELD) are numerical scales that are currently used for liver allocation. The MELD and PELD scores are based on a patient's risk of dying while waiting for a liver transplant, and are based on objective and verifiable medical data."
Translation: These scores are an objective indication of how sick you are. In theory, this is intended to prevent a certain billionaire (who shall remain nameless) from receiving a liver when he is not the most deserving based on purely medical reasons. And after simply writing that, I can already feel the operating system on my laptop crashing and destroying all of my stored information... Just to be on the safe side, please disregard the theoretical reference to any billionaire computer moguls above!
At this point, your transplant coordinator will contact you and input your information into UNOS (the website mentioned in an earlier post). The staff there is then responsible to store your information, gather information about donated organs, and find an appropriate match. But what if there are numerous matches? Who gets the organ?
This is where the "score" comes in. In the case of a liver transplant, your score is called a MELD or PELD score. According to UNOS, "The Model for End-Stage Liver Disease (MELD) and Pediatric End-Stage Liver Disease (PELD) are numerical scales that are currently used for liver allocation. The MELD and PELD scores are based on a patient's risk of dying while waiting for a liver transplant, and are based on objective and verifiable medical data."
Translation: These scores are an objective indication of how sick you are. In theory, this is intended to prevent a certain billionaire (who shall remain nameless) from receiving a liver when he is not the most deserving based on purely medical reasons. And after simply writing that, I can already feel the operating system on my laptop crashing and destroying all of my stored information... Just to be on the safe side, please disregard the theoretical reference to any billionaire computer moguls above!
Making a list... Checking it twice...
So, you've made the Dean's list. You've watched a Letterman Top 10 list, written a shopping list, and perhaps, after your diagnosis, you've made yourself a "bucket list" (more about that later). You will soon find out that every list you have made or seen COMBINED all pale in comparison to getting onto the transplant list. So how do you do it?
First, you find a Transplant Center. My choice was Henry Ford. At some point, your Doctor will decide that it is time to "get you listed". This means what seems like an unending stream of tests, meetings, and appointments. Most go into this process thinking that the purpose of all of these is to determine how sick you are, and where you go on the list. For the most part, that is absolutely wrong.
Remember, most Doctors want to heal us and return us to our lives -- every single patient that they see. However, this is where reality rears it's ugly head. While some of the tests will determine how sick you are and how vital it is to get you an organ sooner rather than later, the vast majority are for totally different reasons. First, remember that a hospital is, at it's core, a business. Although the Doctors may not like it, they have to make sure that if they do this procedure, that you will have the ability to pay for it (typically through insurance). Like it or not, those without the means to pay or appropriate insurance will have a much more difficult time getting on the list, if indeed they ever do...
Second, the Transplant Centers are rated on one thing -- Patient survival. Plain and simple -- Was the surgery a success 3, 5, 10 or more years down the road? Hence, they look at things like your heart (can you survive an extremely invasive and difficult procedure?), your support system (do you have appropriate help with your medications and care after the procedure, as well as drivers to take you to appointments?), and your psychological history and status (to be frank, this is a procedure that can drive the most sane person to the brink... But it would clearly be more difficult for someone with these types of issues).
And finally... There is a CRITICAL shortage of organs. While the transplant committees appear to be trying to "play god" with the organs, the real truth is that they have an ethical responsibility to give the organ to someone who has a better chance of a full recovery and a meaningful life. These are extremely difficult decisions -- For example, do they list an 80 year old person who is otherwise reasonably healthy, or do they list a 13 year old who needs an organ but has a vast array of other maladies? Or both, or neither? Having to make these types of decisions are one part of their job that I truly do not envy.
First, you find a Transplant Center. My choice was Henry Ford. At some point, your Doctor will decide that it is time to "get you listed". This means what seems like an unending stream of tests, meetings, and appointments. Most go into this process thinking that the purpose of all of these is to determine how sick you are, and where you go on the list. For the most part, that is absolutely wrong.
Remember, most Doctors want to heal us and return us to our lives -- every single patient that they see. However, this is where reality rears it's ugly head. While some of the tests will determine how sick you are and how vital it is to get you an organ sooner rather than later, the vast majority are for totally different reasons. First, remember that a hospital is, at it's core, a business. Although the Doctors may not like it, they have to make sure that if they do this procedure, that you will have the ability to pay for it (typically through insurance). Like it or not, those without the means to pay or appropriate insurance will have a much more difficult time getting on the list, if indeed they ever do...
Second, the Transplant Centers are rated on one thing -- Patient survival. Plain and simple -- Was the surgery a success 3, 5, 10 or more years down the road? Hence, they look at things like your heart (can you survive an extremely invasive and difficult procedure?), your support system (do you have appropriate help with your medications and care after the procedure, as well as drivers to take you to appointments?), and your psychological history and status (to be frank, this is a procedure that can drive the most sane person to the brink... But it would clearly be more difficult for someone with these types of issues).
And finally... There is a CRITICAL shortage of organs. While the transplant committees appear to be trying to "play god" with the organs, the real truth is that they have an ethical responsibility to give the organ to someone who has a better chance of a full recovery and a meaningful life. These are extremely difficult decisions -- For example, do they list an 80 year old person who is otherwise reasonably healthy, or do they list a 13 year old who needs an organ but has a vast array of other maladies? Or both, or neither? Having to make these types of decisions are one part of their job that I truly do not envy.
Learning a new language...
So, we began the next phase of my journey, and I began the process of learning an entirely new language -- Transplantese. As a person who had never spent a night as an inpatient in the hospital in my entire life, it was quite overwhelming. But having some documentation from the Transplant Center at Henry Ford, as well as having learned a bit more along the way, I turned back to my old friend, the internet, for advice.
First things first -- What is a MELD score? and how does this mysterious "list" work, anyway? As my education on the web went, these were some of the easier questions to get answered, once I found the right place: http://www.unos.org/
Kudos to the folks that designed this site. For a Pre or Post Transplant patient, or for families, friends or caregivers, this is a well laid out site that provides links for the processes for specific transplants ( http://www.transplantliving.org/ ), a listing of the "rules" that determine who get organs first ( http://optn.transplant.hrsa.gov/ ), as well as huge amounts of data with regard to survival outcomes, waiting lists, and the like ( http://www.unos.org/data/ ). I won't bore you with all of the details, but I will absolutely encourage anyone who is going through this, or has a family member who is, to take a look!
That site will give you some idea as to what the "list" is (they have separate ones depending on what organ or organs you need). But first, you have to get on the list...
First things first -- What is a MELD score? and how does this mysterious "list" work, anyway? As my education on the web went, these were some of the easier questions to get answered, once I found the right place: http://www.unos.org/
Kudos to the folks that designed this site. For a Pre or Post Transplant patient, or for families, friends or caregivers, this is a well laid out site that provides links for the processes for specific transplants ( http://www.transplantliving.org/ ), a listing of the "rules" that determine who get organs first ( http://optn.transplant.hrsa.gov/ ), as well as huge amounts of data with regard to survival outcomes, waiting lists, and the like ( http://www.unos.org/data/ ). I won't bore you with all of the details, but I will absolutely encourage anyone who is going through this, or has a family member who is, to take a look!
That site will give you some idea as to what the "list" is (they have separate ones depending on what organ or organs you need). But first, you have to get on the list...
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