We were told that often the effects of the CAMPATH do not present themselves until day 5-7. Tricia felt great for the first four days after her treatment...better than she has felt in several weeks. She woke up on day five with a lot of fatigue, the same on day six.
Recovery from CAMPATH is unpredictable. Some people recover within about six weeks, while others take over a year to recover. We are not sure if Tricia will feel fatigued every day like this until she recovers, or if she will have ups and downs.
Thank you for your continued prayer.
Nate
Thursday, June 21, 2012
Saturday, June 16, 2012
CAMPATH Report
Tricia received her CAMPATH treatment on Friday. We were at the hospital for most of the day. She became sick about halfway through, so they slowed the med down a bit and she made it through the rest without any major problems.
We drove home that evening, and by the time we arrived home she was experiencing some flu-like symptoms, but by this morning was feeling much better.
We took it easy today, and she'll be doing the same for the next several days until we figure out how this is going to affect her. Her medications have radically changed, including new meds and new doses of old meds.
We would appreciate your prayer as I head back to work tomorrow and we learn how to balance things...this will be our first real week of summer with the kids out of school and all of us at home, so it should be interesting, especially if Tricia experiences any kind of fatigue. Thankfully, we have amazing family to help us.
Nate
We drove home that evening, and by the time we arrived home she was experiencing some flu-like symptoms, but by this morning was feeling much better.
We took it easy today, and she'll be doing the same for the next several days until we figure out how this is going to affect her. Her medications have radically changed, including new meds and new doses of old meds.
Gwyneth and Tricia at the Duke Gardens on Sunday.
Nate
Thursday, June 14, 2012
CAMPATH Tomorrow
Hey friends.
Tricia has had two good days since being discharged, but we need your prayers for Tricia tomorrow as she begins the difficult CAMPATH treatment.
If you are on Twitter and/or Facebook, please use #prayersforpattysue on Twitter and Facebook on Friday at 11am EST. Post link to the blog as well if you can. cfhusband.blogspot.com/
Thank you!
Nate
Tricia has had two good days since being discharged, but we need your prayers for Tricia tomorrow as she begins the difficult CAMPATH treatment.
If you are on Twitter and/or Facebook, please use #prayersforpattysue on Twitter and Facebook on Friday at 11am EST. Post link to the blog as well if you can. cfhusband.blogspot.com/
Thank you!
Nate
Wednesday, June 13, 2012
Discharged
Tricia was discharged from the hospital yesterday afternoon. She has been placed on several new meds to help maintain her "health" and to help rid her body of the C Diff. As long as she is healthy enough, she will be receiving the CAMPATH this Friday morning around 11am at Duke. We are staying with some awesome friends until then, and if everything goes well with the CAMPATH treatment, we will be home by Friday evening.
Specifically, please pray that the C Diff is gone by Friday and that there are no other infections in her body before or after. Any infection could be life-threatening with the CAMPATH.
As it has been explained to us, CAMPATH is a type of chemotherapy that attacks the same cells that AIDS attacks, so being treated with CAMPATH is very similar to having AIDS. Tricia's immune system will be shot for a long time, even up to a year, which means she will be a huge risk to become sick from any number of other illnesses. She will be wearing a mask out in public and will be avoiding anywhere and anybody that could make her sick. Also, CAMPATH can cause severe fatigue...this was Tricia's biggest issue with her cancer treatment 4 years ago.
The goal with the CAMPATH treatment is that the rejection will be stopped, that her PFT's will improve, and that she will be able to regain some of her lost body weight. We have been told though, before things get better, they more than likely will get worse.
Our life is about to drastically change. We would appreciate your prayers for Tricia's safety over the next several months. The slightest infection or illness could quickly lead to very bad things. Also, your prayers for me as I relearn how to balance my life around Tricia's health needs. For our extended family as they provide us with support and help, especially in caring for Gwyneth.
Nate
Specifically, please pray that the C Diff is gone by Friday and that there are no other infections in her body before or after. Any infection could be life-threatening with the CAMPATH.
As it has been explained to us, CAMPATH is a type of chemotherapy that attacks the same cells that AIDS attacks, so being treated with CAMPATH is very similar to having AIDS. Tricia's immune system will be shot for a long time, even up to a year, which means she will be a huge risk to become sick from any number of other illnesses. She will be wearing a mask out in public and will be avoiding anywhere and anybody that could make her sick. Also, CAMPATH can cause severe fatigue...this was Tricia's biggest issue with her cancer treatment 4 years ago.
The goal with the CAMPATH treatment is that the rejection will be stopped, that her PFT's will improve, and that she will be able to regain some of her lost body weight. We have been told though, before things get better, they more than likely will get worse.
Our life is about to drastically change. We would appreciate your prayers for Tricia's safety over the next several months. The slightest infection or illness could quickly lead to very bad things. Also, your prayers for me as I relearn how to balance my life around Tricia's health needs. For our extended family as they provide us with support and help, especially in caring for Gwyneth.
Nate
Tuesday, June 12, 2012
Good Day
Tricia had a good day on Monday. Tests showed that her CO2 is normal, which means she doesn't have to sleep with a CPap machine at night. She also does not have a sinus infection, which she thought she had. It was also thought that she might have ulcers in her esophagus, which she does not.
However, her doctors cannot decide yet how to treat her rejection. She does have a GI bacteria called C Diff, which could cause some major issues if she receives any med that reduces her immune system. They are all having a meeting this morning to make a decision, and we would appreciate prayers for wisdom.
Nate
However, her doctors cannot decide yet how to treat her rejection. She does have a GI bacteria called C Diff, which could cause some major issues if she receives any med that reduces her immune system. They are all having a meeting this morning to make a decision, and we would appreciate prayers for wisdom.
Nate
Sunday, June 10, 2012
Rejection is Back
Tricia is back in the hospital, and the doctors say things look "very bad". She has been having trouble breathing the past week, so much so that we had to cut our time with family short in NJ and fly her down to Duke on Saturday. The doctors believe her rejection is back, in the form of something called BOS. She is set to receive a medication called CAMPATH, which is a chemo drug that will wipe her immune system out for up to a year. But, she has a sinus infection that must be cleared up before the CAMPATH can begin.
I drove the kids home on Saturday, and Gwyneth and I are packing the car right now to drive to Duke. Tricia desperately needs your prayers. Her PFTs are down in the 20's, which is just a little higher that when she received her transplant, and her weight is actually lower than her transplant weight. She is in a very precarious situation.
Please, pass this along to anyone you know. I will be blogging as much as possible, but if you'd like to receive more updates, you can also follow me on Twitter.
Thank you.
Nate
I drove the kids home on Saturday, and Gwyneth and I are packing the car right now to drive to Duke. Tricia desperately needs your prayers. Her PFTs are down in the 20's, which is just a little higher that when she received her transplant, and her weight is actually lower than her transplant weight. She is in a very precarious situation.
Please, pass this along to anyone you know. I will be blogging as much as possible, but if you'd like to receive more updates, you can also follow me on Twitter.
Thank you.
Nate
Thursday, April 12, 2012
GREAT NEWS!
Got a call this morning from Duke...Tricia's rejection is GONE! Thank you God! And, thank YOU for praying for Tricia!!!
She'll be tested again in a few weeks, but it appears she is out of the woods with this.
Nate
She'll be tested again in a few weeks, but it appears she is out of the woods with this.
Nate
Tuesday, April 10, 2012
Friday, April 6, 2012
(Bump) A Very "Good Friday"
This was originally posted on April 2, 2010.
Have you ever wondered why the church calls today “Good Friday”? What’s so “good” about the fact that the One who Christians acknowledge as their “Savior” died such a horrible and “unexpected” death?
As humans, isn’t it hard for us to see death as a good thing? Most of us will spend all of our lives living in fear of death…doing all we can to avoid death. Many of us try to eat right, exercise, and stay generally healthy so that we can live long lives…and the rest of us feel guilty about not eating right and exercising.
But, Jesus said that He came to the earth, to live for a short 33 years, to have a public ministry of just 3 years, and to die, all so that we might be able to live an abundant life. To our simple human brains, that doesn’t make a whole lot of sense. The idea that death can bring life is what we would call a “paradox”.
A paradox is a seemingly absurd or self-contradictory statement, idea, person or thing that is true or may be true. In other words, a paradox is something that is true even though it might not seem to make any sense to our human intellect.
For example, the statement, “This sentence if false” is a paradox. If the statement is true, then the statement is false. In which case, the statement is true, which means the statement is false...and so on for infinity.
Another paradox: “You can't get work without experience, but you can't get experience without work.” Somebody explain to me how exactly that’s supposed to play out.
How about this: “The customer is always right.” So, if two customers say that the other is wrong, both are right, and therefore, both are wrong that they are both right that they are both wrong that they are both right that they are both wrong, etc.
God is a God of paradox. For example, have you ever tried to think about the fact that God “Always has been”? For God, there never was a beginning. That’s a hard thing for us to wrap our minds around, considering we know without doubt that everything we experience as humans had a beginning at some point, even if we weren’t there to witness it.
Or, how about the idea of The Trinity – God is One and Three all at the same time. Even our best attempts as humans to explain this idea fall short. Maybe you’ve heard somebody use water to illustrate the Trinity of God…water can be a solid, liquid and gas. But, water cannot be all three of those things at the same time.
And, just as God often reveals Himself as a paradox, Jesus’ life on this earth was a paradox…listen to this:
JESUS had no servants, yet they called Him MASTER...
JESUS had no degree, yet they called Him TEACHER...
JESUS had no medicine, yet they called Him HEALER...
JESUS had no army, yet KINGS feared Him...
JESUS won no military battles, yet He CONQUERED the WORLD...
JESUS committed no crime, yet they CRUCIFIED Him...
JESUS was buried in a tomb, yet He LIVES TODAY...
It probably seems odd to most people outside of the church that Christians would gather together once a year to remember and celebrate the anniversary of Jesus’ death, but it’s because of this paradox, that Jesus’ death means life for you and I, that we have reason to celebrate. Death on a cross is a gruesome thing…bloody and painful and humiliating. Yet, there is a beauty in the death of Jesus, knowing that He willingly died because of His great love for us.
Maybe that still doesn’t make a whole lot of sense to you…so, let me share a short, personal story that might help illustrate why we call today “Good Friday”.
Two years ago today, on April 2, 2008, I woke up in a hospital room at Duke University Medical center in Durham, NC. I had slept there that night, just as I had many nights before those past few months, on the floor at the foot of my wife’s bed. Tricia was dying of Cystic Fibrosis and, at that point, had been bedridden at Duke for about three months.
A month earlier, Tricia had been placed on the double lung transplant list. A transplant, her doctors told us, was the only option Tricia had left. She was literally growing sicker and weaker every day, and the prognosis was that she would be dead by the end of that summer if her medical team could not find her a new pair of lungs. In fact, just the day before, on April 1, Tricia’s right lung had collapsed, which was a sign that her lungs were at the very end.
There were a few big factors that made finding a donor for Tricia very difficult:
1) Tricia’s blood type is very rare…so rare, in fact, that the doctors would later explain to us that there was less than a 1% chance of finding a donor that would be a good match for Tricia.
2) Lungs deteriorate more quickly than other donated organs while being moved from the donor to the recipient, so the window of time between the death of the donor and the actual transplant surgery would have to be extremely short. Unfortunately, transplanted organs are often moved thousands of miles from donor to recipient.
3) Because she had to have a double lung transplant, she could not have a living donor. Her donor had to be a deceased donor. Donating organs after your dead doesn’t hurt much (in case you’ve ever wondered), but, unfortunately, very few people make the decision to be an organ donor, so the “supply” of healthy lungs is very limited.
So, the chances that Tricia's medical team would locate a match and have the time to retrieve the lungs and perform the successful 9-hou surgery were incredibly small. Which is why, when we got the call that April 2nd morning that a match had been found and that Tricia would be going into surgery that evening, we were full of mixed emotions.
Knowing that a match had been found also meant knowing that somebody had died that day, probably unexpectedly and possibly tragically. It meant knowing that there was probably a mother, father, brother, sister, wife or husband, maybe even children who were experiencing a great loss, and others who were just being told the news of the death of their friend.
But, it also meant that somebody had made the decision during their life to become an organ donor…to offer the chance for Tricia to experience abundant life. So, not because of death, but because of life, we both prayed a prayer of thanksgiving for the donor and peace for the family AND we celebrated.
And, two years later, on this anniversary, we continue to remember the death of Tricia’s donor and the pain that this day might bring his or her family and friends...we pray for their peace and comfort today, and we continue to celebrate the abundant life that Tricia has been given.
So, tonight, at Nags Head Church, we’re also going to remember and celebrate, because we too know that Jesus’ death was meant to give us life, abundantly here on earth and for eternity. We will remember His death, thank His Father God for sacrificing His one and only Son for us, and celebrate our new life together.
Nate
Have you ever wondered why the church calls today “Good Friday”? What’s so “good” about the fact that the One who Christians acknowledge as their “Savior” died such a horrible and “unexpected” death?
As humans, isn’t it hard for us to see death as a good thing? Most of us will spend all of our lives living in fear of death…doing all we can to avoid death. Many of us try to eat right, exercise, and stay generally healthy so that we can live long lives…and the rest of us feel guilty about not eating right and exercising.
But, Jesus said that He came to the earth, to live for a short 33 years, to have a public ministry of just 3 years, and to die, all so that we might be able to live an abundant life. To our simple human brains, that doesn’t make a whole lot of sense. The idea that death can bring life is what we would call a “paradox”.
A paradox is a seemingly absurd or self-contradictory statement, idea, person or thing that is true or may be true. In other words, a paradox is something that is true even though it might not seem to make any sense to our human intellect.
For example, the statement, “This sentence if false” is a paradox. If the statement is true, then the statement is false. In which case, the statement is true, which means the statement is false...and so on for infinity.
Another paradox: “You can't get work without experience, but you can't get experience without work.” Somebody explain to me how exactly that’s supposed to play out.
How about this: “The customer is always right.” So, if two customers say that the other is wrong, both are right, and therefore, both are wrong that they are both right that they are both wrong that they are both right that they are both wrong, etc.
God is a God of paradox. For example, have you ever tried to think about the fact that God “Always has been”? For God, there never was a beginning. That’s a hard thing for us to wrap our minds around, considering we know without doubt that everything we experience as humans had a beginning at some point, even if we weren’t there to witness it.
Or, how about the idea of The Trinity – God is One and Three all at the same time. Even our best attempts as humans to explain this idea fall short. Maybe you’ve heard somebody use water to illustrate the Trinity of God…water can be a solid, liquid and gas. But, water cannot be all three of those things at the same time.
And, just as God often reveals Himself as a paradox, Jesus’ life on this earth was a paradox…listen to this:
JESUS had no servants, yet they called Him MASTER...
JESUS had no degree, yet they called Him TEACHER...
JESUS had no medicine, yet they called Him HEALER...
JESUS had no army, yet KINGS feared Him...
JESUS won no military battles, yet He CONQUERED the WORLD...
JESUS committed no crime, yet they CRUCIFIED Him...
JESUS was buried in a tomb, yet He LIVES TODAY...
It probably seems odd to most people outside of the church that Christians would gather together once a year to remember and celebrate the anniversary of Jesus’ death, but it’s because of this paradox, that Jesus’ death means life for you and I, that we have reason to celebrate. Death on a cross is a gruesome thing…bloody and painful and humiliating. Yet, there is a beauty in the death of Jesus, knowing that He willingly died because of His great love for us.
Maybe that still doesn’t make a whole lot of sense to you…so, let me share a short, personal story that might help illustrate why we call today “Good Friday”.
Two years ago today, on April 2, 2008, I woke up in a hospital room at Duke University Medical center in Durham, NC. I had slept there that night, just as I had many nights before those past few months, on the floor at the foot of my wife’s bed. Tricia was dying of Cystic Fibrosis and, at that point, had been bedridden at Duke for about three months.
A month earlier, Tricia had been placed on the double lung transplant list. A transplant, her doctors told us, was the only option Tricia had left. She was literally growing sicker and weaker every day, and the prognosis was that she would be dead by the end of that summer if her medical team could not find her a new pair of lungs. In fact, just the day before, on April 1, Tricia’s right lung had collapsed, which was a sign that her lungs were at the very end.
There were a few big factors that made finding a donor for Tricia very difficult:
1) Tricia’s blood type is very rare…so rare, in fact, that the doctors would later explain to us that there was less than a 1% chance of finding a donor that would be a good match for Tricia.
2) Lungs deteriorate more quickly than other donated organs while being moved from the donor to the recipient, so the window of time between the death of the donor and the actual transplant surgery would have to be extremely short. Unfortunately, transplanted organs are often moved thousands of miles from donor to recipient.
3) Because she had to have a double lung transplant, she could not have a living donor. Her donor had to be a deceased donor. Donating organs after your dead doesn’t hurt much (in case you’ve ever wondered), but, unfortunately, very few people make the decision to be an organ donor, so the “supply” of healthy lungs is very limited.
So, the chances that Tricia's medical team would locate a match and have the time to retrieve the lungs and perform the successful 9-hou surgery were incredibly small. Which is why, when we got the call that April 2nd morning that a match had been found and that Tricia would be going into surgery that evening, we were full of mixed emotions.
Knowing that a match had been found also meant knowing that somebody had died that day, probably unexpectedly and possibly tragically. It meant knowing that there was probably a mother, father, brother, sister, wife or husband, maybe even children who were experiencing a great loss, and others who were just being told the news of the death of their friend.
But, it also meant that somebody had made the decision during their life to become an organ donor…to offer the chance for Tricia to experience abundant life. So, not because of death, but because of life, we both prayed a prayer of thanksgiving for the donor and peace for the family AND we celebrated.
And, two years later, on this anniversary, we continue to remember the death of Tricia’s donor and the pain that this day might bring his or her family and friends...we pray for their peace and comfort today, and we continue to celebrate the abundant life that Tricia has been given.
So, tonight, at Nags Head Church, we’re also going to remember and celebrate, because we too know that Jesus’ death was meant to give us life, abundantly here on earth and for eternity. We will remember His death, thank His Father God for sacrificing His one and only Son for us, and celebrate our new life together.
Nate
Monday, April 2, 2012
Greatest Gift
Four years ago today, I received the greatest birthday gift ever...from a total stranger. We still do not know who Tricia's donor was, and we probably never will, but we will never stop being thankful for that person's gift, and we will never stop praying for that person's family.
The video below might be the second greatest birthday gift I've ever received.
The video below might be the second greatest birthday gift I've ever received.
Nate