I first saw the film "Life is Beautiful" at the house of a friend that was dying, only 7 weeks earlier having been diagnosed with metastatic melanoma. He had had this condition in the past, had it removed and was a diligent sunscreen wearer, ate organically, and was overall a healthy individual. And yet...he died.
In the past year I have known other stories like this. Do all the right stuff, get sick anyway. And although Alex hasn't always done the 'right stuff' in terms of his health, when he was first diagnosed with PSC, he was only a kid with barely enough time at all to mess things up. But sometimes it just doesn't matter.
Since finding out that we were headed to transplant in the immediate way, I have cried not quite every day. There are definitely times I do, and often it's when Alex is gone and I start thinking about the enormity of the situation. I am positive, upbeat, but also human. There are times I am so full of and gladness for my many blessings it overflows, and there are times I am so paralyzed by fear and sadness I can do nothing but weep. It is truly a roller coaster of emotion. And it's these times that I want to scream at God "IT'S JUST NOT FAIR!" And truly, it isn't. But He didn't promise us fairness, or a life without suffering. He did promise us the grace to get through it. It's really easy to get all caught up in us (and myself) and think only about how hard and sad and crappy this situation is at times. But I have to remember a saying that my parish priest once told me. When we get to Heaven, we will see the beautiful tapestry of the world, and all the threads that belonged to us while on Earth. We will see how they intertwine with all the others, going over and under and next to, making the amazing picture of Creation over time. And we will see why all the things that happened did, and how they impacted others. While on Earth we can only see the tangles, broken strings, and holes not yet filled. But in Heaven, we will see the beautiful image woven by the hand of God.
Bless you, everyone, and keep up the prayers! You are amazing :)
Wednesday, June 29, 2011
Sunday, June 19, 2011
July 5, 2011
We got the first call from the U on Tuesday to set up our initial appointment. It is going to be on July 5, starting at 7:30am and continuing until about 1:00pm. This is exciting and scary. We will do lab work, talk to the doctors, nurses, and coordinators and ask the one million questions that we will have about what to expect. Based upon this visit, they will decide if it is yet time to do the two day appointment or wait.
We were blessed to be in Oregon visiting some great friends when this call came. We had a great time, Miss E. enjoyed the trip to aquarium immensely, except the touch tank ("Don't you want to touch the starfish, he's a nice starfish" "NO!"--she is a woman who knows her mind!) and the gigantic anaconda they had as part of the Swampland exhibit. The mommy was big, pregnant, and shedding her skin--which also renders such snakes blind until, I suppose, their new skin grows in again on their faces. We also had a lot of fun going to all the shops in Newport, enjoying the touristy side of things.
We also ate a tremendous amount of good food, especially my Friend C. and I, who enjoyed the cuisine of Marco Polo's International Restaurant in Salem, OR, and some great wine at a local wine bar called Crush. If you get the chance to have the ice wine from Eola Hills, I definitely recommend it.
On the way home, Alex fought hard not to demonstrate his road rage tendencies against the Oregon drivers we encountered. We stopped off at Multnoma Falls and then Bonneville Dam where Miss E. got to feed the trout in the hatching ponds and see what a Sturgeon looks like up close and personal.
Of course, this post about our Oregonian adventure would be incomplete without a shout out to Friend N., husband of Friend C., intrepid educator of mathematics who graduated with his Master's in Teaching, the very impetus of the trip. Congratulations, Friend N., and Godspeed in your endeavor in twisting minds and crushing spirits--or something like that.
Love to all, and Blessings of God be with you!
We were blessed to be in Oregon visiting some great friends when this call came. We had a great time, Miss E. enjoyed the trip to aquarium immensely, except the touch tank ("Don't you want to touch the starfish, he's a nice starfish" "NO!"--she is a woman who knows her mind!) and the gigantic anaconda they had as part of the Swampland exhibit. The mommy was big, pregnant, and shedding her skin--which also renders such snakes blind until, I suppose, their new skin grows in again on their faces. We also had a lot of fun going to all the shops in Newport, enjoying the touristy side of things.
We also ate a tremendous amount of good food, especially my Friend C. and I, who enjoyed the cuisine of Marco Polo's International Restaurant in Salem, OR, and some great wine at a local wine bar called Crush. If you get the chance to have the ice wine from Eola Hills, I definitely recommend it.
On the way home, Alex fought hard not to demonstrate his road rage tendencies against the Oregon drivers we encountered. We stopped off at Multnoma Falls and then Bonneville Dam where Miss E. got to feed the trout in the hatching ponds and see what a Sturgeon looks like up close and personal.
Of course, this post about our Oregonian adventure would be incomplete without a shout out to Friend N., husband of Friend C., intrepid educator of mathematics who graduated with his Master's in Teaching, the very impetus of the trip. Congratulations, Friend N., and Godspeed in your endeavor in twisting minds and crushing spirits--or something like that.
Love to all, and Blessings of God be with you!
Wednesday, June 8, 2011
Four letter word of the day: MELD
The Truth of the MELD
Or, more accurately, the acronym for the day. MELD is the shorty version of Model for End Stage Liver disease (see why they needed a shorty?). This is a score that patients with liver disease are given based upon three factors and indicates one's probability of survival for a determined amount of time.
I suppose the first thing to mention is the liver and it's function. The liver is the one of the largest organs in the body, weighing in at about 3# (similar to your brain), but less than your skin (8-10#). This may not seem huge, but when we consider the important role of the liver in sustaining life, the old adage applies--size doesn't really matter.
As most of us know, the liver one of the cleansing organs of the body (along with the kidneys), filtering out harmful substances from the blood, as well as helpful substances that in too great a quantity would become harmful. However, it has a much greater role than is commonly realized.
The primary functions of the liver are:
Bile production and excretion
Excretion of bilirubin, cholesterol, hormones, and drugs
Metabolism of fats, proteins, and carbohydrates
Enzyme activation
Storage of glycogen, vitamins, and minerals
Synthesis of plasma proteins, such as albumin, and clotting factors
Blood detoxification and purification
Okay, so back to the MELD score. The three factors are~
Bilirubin: The by-product of the liver's breakdown of red blood cells (red blood cells are recycled by our bodies about every 120 days). It's yellowish-brown in your bile, makes your poop brown (yes, I do think you should use that as a conversation starter at your next dinner party!) and if you have too much, like when your liver is not working right, your skin and the whites of your eyes begin to look much daffodil yellow than Lilly white.
Serum Creatinine: This is a measurement of kidney function. Kidneys and livers apparently like to party and get into trouble together, i.e. they will often both have problems at the same time.
INR~(International Normalized Ratio, previously know as a prothrombin time, or protime for those of the medical persuasion): This is a measure of how long it takes the blood to clot, and is important since the liver is responsible for the production of clotting factors. Without those, blood will not stop bleeding once it has started, and this is BAD.
You must have a MELD of at least 10 to be considered for liver transplant. The scale runs from 10-40. Right now, Alex is at 15, which means he needs to have labs done more frequently and he is eligible for consideration of transplant. We are being referred to the University of Washington, where they do 80-100 liver transplants per year. As of now, the wait has been about 6 months for a liver, which is awesome, by the way (national average is much greater, around 2-3 years from what I have read). There is no guarantee, however, that Alex will actually need a liver in 6 months after we are on the list (if he is not sick enough), and the wait can be longer. There is not a steady supply to meet the demand and several factors, including size and blood type, as well as MELD score, are considered.
The Process
Basically, we are referred to the U, they do a 4 hour intake interview and decide if we should be considered for transplant. If they say yes, we will return for two days of testing (including EKG's, blood work, etc.), meetings (with doctors, nurses, and financial counselors), etc. to gather all the information for the Review Board. The Review Board will determine if we are appropriate to be "listed". If they do (and we hope they do!) then we will be placed on THE LIST and then--wait. This is a hard thing, because A)no one likes to wait for anything--just think of pregnancy, most of us would gladly just have the baby! B)it's very unpredictable, a call can come any time, day or night, and C)somebody else and their family are having an awful day if you are having a good one. The U does only deceased (aka cadaveric) donor transplants, and there is a degree of sadness which accompanies the joy that you feel.
So, Can't Alex Just Have a Part of My Liver?
Or, more accurately, the acronym for the day. MELD is the shorty version of Model for End Stage Liver disease (see why they needed a shorty?). This is a score that patients with liver disease are given based upon three factors and indicates one's probability of survival for a determined amount of time.
I suppose the first thing to mention is the liver and it's function. The liver is the one of the largest organs in the body, weighing in at about 3# (similar to your brain), but less than your skin (8-10#). This may not seem huge, but when we consider the important role of the liver in sustaining life, the old adage applies--size doesn't really matter.
As most of us know, the liver one of the cleansing organs of the body (along with the kidneys), filtering out harmful substances from the blood, as well as helpful substances that in too great a quantity would become harmful. However, it has a much greater role than is commonly realized.
The primary functions of the liver are:
Bile production and excretion
Excretion of bilirubin, cholesterol, hormones, and drugs
Metabolism of fats, proteins, and carbohydrates
Enzyme activation
Storage of glycogen, vitamins, and minerals
Synthesis of plasma proteins, such as albumin, and clotting factors
Blood detoxification and purification
Okay, so back to the MELD score. The three factors are~
Bilirubin: The by-product of the liver's breakdown of red blood cells (red blood cells are recycled by our bodies about every 120 days). It's yellowish-brown in your bile, makes your poop brown (yes, I do think you should use that as a conversation starter at your next dinner party!) and if you have too much, like when your liver is not working right, your skin and the whites of your eyes begin to look much daffodil yellow than Lilly white.
Serum Creatinine: This is a measurement of kidney function. Kidneys and livers apparently like to party and get into trouble together, i.e. they will often both have problems at the same time.
INR~(International Normalized Ratio, previously know as a prothrombin time, or protime for those of the medical persuasion): This is a measure of how long it takes the blood to clot, and is important since the liver is responsible for the production of clotting factors. Without those, blood will not stop bleeding once it has started, and this is BAD.
You must have a MELD of at least 10 to be considered for liver transplant. The scale runs from 10-40. Right now, Alex is at 15, which means he needs to have labs done more frequently and he is eligible for consideration of transplant. We are being referred to the University of Washington, where they do 80-100 liver transplants per year. As of now, the wait has been about 6 months for a liver, which is awesome, by the way (national average is much greater, around 2-3 years from what I have read). There is no guarantee, however, that Alex will actually need a liver in 6 months after we are on the list (if he is not sick enough), and the wait can be longer. There is not a steady supply to meet the demand and several factors, including size and blood type, as well as MELD score, are considered.
The Process
Basically, we are referred to the U, they do a 4 hour intake interview and decide if we should be considered for transplant. If they say yes, we will return for two days of testing (including EKG's, blood work, etc.), meetings (with doctors, nurses, and financial counselors), etc. to gather all the information for the Review Board. The Review Board will determine if we are appropriate to be "listed". If they do (and we hope they do!) then we will be placed on THE LIST and then--wait. This is a hard thing, because A)no one likes to wait for anything--just think of pregnancy, most of us would gladly just have the baby! B)it's very unpredictable, a call can come any time, day or night, and C)somebody else and their family are having an awful day if you are having a good one. The U does only deceased (aka cadaveric) donor transplants, and there is a degree of sadness which accompanies the joy that you feel.
So, Can't Alex Just Have a Part of My Liver?
Yes, and no. Liver matching is based primarily on size and blood type. However, there are only 5 locations in the USA that do live donor transplants for livers (kidney's are much more commonly done that way these days). Amazingly, nearly everyone we have spoken to has offered this, though, and what a loving gift! Although it will likely not be the route we take, it is a blessing to know we are so cared for by so many that would be willing to take on that task. THANK YOU!
Until next time, God Bless you and keep you!!
Monday, June 6, 2011
Four letter word of the day: Pain
As defined by Webster's Online Dictionary:
a: usu. localized physical suffering associated with bodily disorder (as a disease or an injury); also : a basic bodily sensation induced by a noxious stimulus, received by naked nerve endings, characterized by physical discomfort (as pricking, throbbing, or aching), and typically leading to evasive action
b : acute mental or emotional distress or suffering
Pretty darn accurate, that Webster. Although I really do think that there is more than one way to view pain, and multiple factors that impact the way that pain in perceived and reacted to. Additionally, the use of the word 'suffering' is interesting, I will explain why in a moment.
Physical pain is something that nearly all of us avoid whenever we can. There are those things in lift which do not allow us to avoid pain, such as childbirth (to varying degrees) or illness or injury. Alex has been such an incredible pillar in the face of all the discomfort he is enduring, it's truly amazing. He would say that he complains a lot, to which I would agree, but the fact of the matter is that he walks this road of physical discomfort with great grace the majority of the time, and tolerance the rest. At this time we are not actually sure what is causing Alex's muscle/bone pain, the right upper quadrant pain he is experiencing is due to his liver's malfunctioning. It is hard to suffer this physical pain, and also hard to see the one you love in pain. All in all, pain stinks!
Now onto suffering...forgive me if this is a bit of stream of consciousness writing, I am trying to let it flow and get some of the yuck out of my heart and mind. Suffering is NOT.ALWAYS. BAD. Amazing, but true. Take, for example, the Apostle Paul, who states in Collosians 1:24
"In my flesh I complete what is lacking in Christ's afflictions, for the sake of his body, that is, the Church". Suffering allows us to align ourselves with the Cross of Christ in a way that no other experience does. And, it builds our dependence on God. At times, only when we have absolutely, positively, supercalifragilistically NO WHERE to go but our knees, that is when we actually DO it.
As Christians, we strive constantly throughout our lives to come closer to God and be Christ in the world--and yet we run from suffering, one of the most sure-fire mechanisms to enable both of the processes, as fast as we can. And it is no wonder why. It hurts! When a tree is pruned, the sap pours forth from it to cover the wound. And then, the healthier, new growth can replace that which was plucked away. The tree can grow taller, healthier, and be more fruitful. Doesn't sound bad when it's happening in the life of a tree, does it? If we want our faith to be healthier, more fruitful (and we do, because as it says in Matthew 7:19 "Every tree which does not produce good fruit shall be cut down and cast into the fire"...hmmm, some Biblical passages are so full of symbolism that it's hard to wrap your head around--this one, I would say, is not!).
So, it is the time now to recognize the benefits of suffering in our lives, but not to dwell on that suffering. God is love, a good and faithful Shepard who will not lead us on a path sadness, pain, and yes, suffering, without a major purpose behind it, for us or someone else. This is an amazing gift of our faith.
I will keep up the posts, I hope daily, and look forward to your comments (yep, not a passive activity, this blog reading!). There will be the good, the bad, and the ugly in this blog--our happy's, sad's, and others. It will be an effort to foster the support that we are so desperately in need of, and that others are so willing to give but at times do not now how to give. First and foremost, PRAY. God is listening! His angels and saints are listening! Mary, the beautiful mother of Jesus, is listening! Please lift up your prayers on our behalf, and that will be the greatest gift. And we will pray for you! Let us know your sorrows, your joys, and your needs! This is a journey we are on together, and while we are in one of the rockier spots, we do not want to lose sight of the needs of others. Allow us to uplift you as you lift us up as well! We will also do a great deal of Alex's health updates on here, so stay tuned. Love to you all from the Douglas Fam!
a: usu. localized physical suffering associated with bodily disorder (as a disease or an injury); also : a basic bodily sensation induced by a noxious stimulus, received by naked nerve endings, characterized by physical discomfort (as pricking, throbbing, or aching), and typically leading to evasive action
b : acute mental or emotional distress or suffering
Pretty darn accurate, that Webster. Although I really do think that there is more than one way to view pain, and multiple factors that impact the way that pain in perceived and reacted to. Additionally, the use of the word 'suffering' is interesting, I will explain why in a moment.
Physical pain is something that nearly all of us avoid whenever we can. There are those things in lift which do not allow us to avoid pain, such as childbirth (to varying degrees) or illness or injury. Alex has been such an incredible pillar in the face of all the discomfort he is enduring, it's truly amazing. He would say that he complains a lot, to which I would agree, but the fact of the matter is that he walks this road of physical discomfort with great grace the majority of the time, and tolerance the rest. At this time we are not actually sure what is causing Alex's muscle/bone pain, the right upper quadrant pain he is experiencing is due to his liver's malfunctioning. It is hard to suffer this physical pain, and also hard to see the one you love in pain. All in all, pain stinks!
Now onto suffering...forgive me if this is a bit of stream of consciousness writing, I am trying to let it flow and get some of the yuck out of my heart and mind. Suffering is NOT.ALWAYS. BAD. Amazing, but true. Take, for example, the Apostle Paul, who states in Collosians 1:24
"In my flesh I complete what is lacking in Christ's afflictions, for the sake of his body, that is, the Church". Suffering allows us to align ourselves with the Cross of Christ in a way that no other experience does. And, it builds our dependence on God. At times, only when we have absolutely, positively, supercalifragilistically NO WHERE to go but our knees, that is when we actually DO it.
As Christians, we strive constantly throughout our lives to come closer to God and be Christ in the world--and yet we run from suffering, one of the most sure-fire mechanisms to enable both of the processes, as fast as we can. And it is no wonder why. It hurts! When a tree is pruned, the sap pours forth from it to cover the wound. And then, the healthier, new growth can replace that which was plucked away. The tree can grow taller, healthier, and be more fruitful. Doesn't sound bad when it's happening in the life of a tree, does it? If we want our faith to be healthier, more fruitful (and we do, because as it says in Matthew 7:19 "Every tree which does not produce good fruit shall be cut down and cast into the fire"...hmmm, some Biblical passages are so full of symbolism that it's hard to wrap your head around--this one, I would say, is not!).
So, it is the time now to recognize the benefits of suffering in our lives, but not to dwell on that suffering. God is love, a good and faithful Shepard who will not lead us on a path sadness, pain, and yes, suffering, without a major purpose behind it, for us or someone else. This is an amazing gift of our faith.
I will keep up the posts, I hope daily, and look forward to your comments (yep, not a passive activity, this blog reading!). There will be the good, the bad, and the ugly in this blog--our happy's, sad's, and others. It will be an effort to foster the support that we are so desperately in need of, and that others are so willing to give but at times do not now how to give. First and foremost, PRAY. God is listening! His angels and saints are listening! Mary, the beautiful mother of Jesus, is listening! Please lift up your prayers on our behalf, and that will be the greatest gift. And we will pray for you! Let us know your sorrows, your joys, and your needs! This is a journey we are on together, and while we are in one of the rockier spots, we do not want to lose sight of the needs of others. Allow us to uplift you as you lift us up as well! We will also do a great deal of Alex's health updates on here, so stay tuned. Love to you all from the Douglas Fam!
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