If all goes well, Tricia will be discharged tomorrow (Saturday). She has been walking a mile consistently and has all but the last two small chest tubes pulled. She is still in some pain and is still very week, but we're excited about having her "home" with us after a little over a month in the hospital. She'll be back to The Center For Living on Monday to begin her five weeks of physical therapy/rehab, and depending on setbacks and another possible procedure the team may demand, we could be home as early as mid-July.
We are so thankful to God for Tricia's donor and the team at Duke. These lungs seem to be an absolute perfect match for Tricia, and we know that without the amazing surgeons, doctors, nurses and other staff, she would have never made it this far. Tricia still needs prayer, as she's certainly not anywhere near "healthy" as we'd like her to be, but we are excited about how well she is doing and are so thankful for your support.
Nate
Showing posts with label Re-Transplant. Show all posts
Showing posts with label Re-Transplant. Show all posts
Friday, May 31, 2013
Thursday, May 23, 2013
Surgery Info and Game Plan
Here are a few details about the surgery and some info about the game plan, with a few comparisons to her first transplant in 2008.
But first, here's something that I thought was cool. On the days of both the 2008 and 2013 transplants, Tricia was in the same room, 7813, when we received the call and when she was wheeled into the OR, she had the same nurse, BJ, she had the same respiratory therapist, Boyd, we received the initial call at almost the exact same call in the morning and the confirmation call for surgery at almost the exact same time in the afternoon, Dr. Lin was on call for surgery and told us afterward that each surgeries was one of his most difficult. Talk about deja vu!
Surgery was eleven hours, First surgery was nine hours. There was more bleeding because of scar tissue, so the removal of the old lungs took longer.
Tricia was off the vent within a few hours after surgery, and out of ICU within 36 hours. It took her a few days to get off of the vent and over a week to get out of the ICU the first time.
She started with nine chest tubes, and has had three pulled so far. Chest tubes allow all the fluid that accumulates after such a major surgery to drain. There is more bleeding and drainage than the first surgery. Chest tubes cause a lot of pain, so she looks forward to having them pulled, even though the pulling is painful. She has an epidural for pain meds that will probably be removed today or tomorrow.
Tricia is experiencing a lot of nausea, which is slowing her down. She hasn't walked yet today because of it. We're hoping this might go away when they change her pain meds.
She is still on a feeding tube. She passed her first swallow test, but will need to pass another before she can eat or drink anything. She still has her trach, but has a Passy Muir Valve that allows her to speak when she wants. You might remember that she had some nerve damage to her left vocal cord from her first surgery that left her voice very raspy and week...she ended up with an implant that fixed the problem. No problem with her voice this time around.
Tricia is having a bronchoscopy procedure nearly every day in her room to check for infection/rejection and to clear any mucus that she is unable to cough up. She also has an xray and other tests daily. So far, the doctors have seen nothing to be alarmed about.
Gwyneth and I have spent several hours each day with her in her room. Her mother is here as well to be with her. Unlike the first time around, she is able to sleep well alone at night, so we are all getting good sleep back at the hotel every night. She is much more relaxed and less anxious than the first time, most likely due to the fact that she feels so much better.
Tricia is still very week from being in bed and on the vent for the past few weeks. Her progress so far has been very very good, but slow. Compared to the first time, she came out of surgery feeling amazingly good. Everyone is very happy with her progress so far. If all goes well, she'll be out of the hospital within 2-3 weeks after surgery. She was out at three weeks the first time.
Tricia needs to meet four criteria to be discharged:
1) Walking at least one mile daily which is about 21 laps around the stepdown unit. So far she's up to about 6-10 a day.
2) No chest tubes.
3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for.
4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.
Once she is discharged she'll be back to the Center for Living to complete 24 days of physical therapy. Once she completes that, and is deemed healthy enough, we can finally go home!
Nate
But first, here's something that I thought was cool. On the days of both the 2008 and 2013 transplants, Tricia was in the same room, 7813, when we received the call and when she was wheeled into the OR, she had the same nurse, BJ, she had the same respiratory therapist, Boyd, we received the initial call at almost the exact same call in the morning and the confirmation call for surgery at almost the exact same time in the afternoon, Dr. Lin was on call for surgery and told us afterward that each surgeries was one of his most difficult. Talk about deja vu!
Surgery was eleven hours, First surgery was nine hours. There was more bleeding because of scar tissue, so the removal of the old lungs took longer.
Tricia was off the vent within a few hours after surgery, and out of ICU within 36 hours. It took her a few days to get off of the vent and over a week to get out of the ICU the first time.
She started with nine chest tubes, and has had three pulled so far. Chest tubes allow all the fluid that accumulates after such a major surgery to drain. There is more bleeding and drainage than the first surgery. Chest tubes cause a lot of pain, so she looks forward to having them pulled, even though the pulling is painful. She has an epidural for pain meds that will probably be removed today or tomorrow.
Tricia is experiencing a lot of nausea, which is slowing her down. She hasn't walked yet today because of it. We're hoping this might go away when they change her pain meds.
She is still on a feeding tube. She passed her first swallow test, but will need to pass another before she can eat or drink anything. She still has her trach, but has a Passy Muir Valve that allows her to speak when she wants. You might remember that she had some nerve damage to her left vocal cord from her first surgery that left her voice very raspy and week...she ended up with an implant that fixed the problem. No problem with her voice this time around.
Tricia is having a bronchoscopy procedure nearly every day in her room to check for infection/rejection and to clear any mucus that she is unable to cough up. She also has an xray and other tests daily. So far, the doctors have seen nothing to be alarmed about.
Gwyneth and I have spent several hours each day with her in her room. Her mother is here as well to be with her. Unlike the first time around, she is able to sleep well alone at night, so we are all getting good sleep back at the hotel every night. She is much more relaxed and less anxious than the first time, most likely due to the fact that she feels so much better.
Tricia is still very week from being in bed and on the vent for the past few weeks. Her progress so far has been very very good, but slow. Compared to the first time, she came out of surgery feeling amazingly good. Everyone is very happy with her progress so far. If all goes well, she'll be out of the hospital within 2-3 weeks after surgery. She was out at three weeks the first time.
Tricia needs to meet four criteria to be discharged:
1) Walking at least one mile daily which is about 21 laps around the stepdown unit. So far she's up to about 6-10 a day.
2) No chest tubes.
3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for.
4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.
Once she is discharged she'll be back to the Center for Living to complete 24 days of physical therapy. Once she completes that, and is deemed healthy enough, we can finally go home!
Nate
Thursday, May 16, 2013
Fast Track
The first few days after Tricia's first transplant were rough for her (if you go back and read my several posts from just after her first surgery in April 2008, you can compare with what's going on now), so we expected the same this time around, especially since the transplant team warned us several times how difficult the second time around can be. BUT, Tricia has amazed everyone these first 36 hours. She was awake and off the vent within hours, and walking by the end of the day. She felt and looked incredibly good from the start and continues to improve, and this afternoon she was moved to the stepdown unit and placed on what they call a "fast track". She is not out of the woods yet, but the past few days have been very promising and we're praying she'll avoid any setbacks and be released from the hospital within the next 2-3 weeks.
The medical team has amazed us once again. Tricia's first surgery five years ago was about nine hours long, and was, according the Dr. Lin, one of the more difficult lung extractions he'd ever performed. This surgery was no less than 11 hours, and Dr. Lin again told us that it was an incredibly difficult extraction. Tricia gave him a big hug today and told him he was her miracle worker. She also told him how thousands of people were praying for him during the surgery, for which he said he was very thankful. So, thank you.
Nate
The medical team has amazed us once again. Tricia's first surgery five years ago was about nine hours long, and was, according the Dr. Lin, one of the more difficult lung extractions he'd ever performed. This surgery was no less than 11 hours, and Dr. Lin again told us that it was an incredibly difficult extraction. Tricia gave him a big hug today and told him he was her miracle worker. She also told him how thousands of people were praying for him during the surgery, for which he said he was very thankful. So, thank you.
Nate
Sunday, May 12, 2013
Back in the ICU
As I explained in my last post, Tricia's breathing was becoming more difficult over the week, and around 2am on Saturday morning she was brought back up to the ICU. She was looking and feeling rough, but by Saturday afternoon was doing better. They changed some setting on her vent and gave her a few meds to help her catch up on some sleep. By this morning she was looking and feeling much better, maybe even as good as any tie during her Duke stay the past few weeks. The plans are to try to get her back to stepdown tomorrow if she is the same.
Nate
Nate
Thursday, May 9, 2013
11th Hour...Again
It's very surreal to be here again. So many things are the same. We're just two doors down from the room we lived in for three months while waiting for a transplant just over five years ago, so our view out the window is nearly identical. So many of the staff are the same, hospital food is still iffy, Tricia is experiencing many of the same things she experienced then.
Breathing has slowly been getting more difficult for Tricia since being placed on the vent. The first few days were a relief from the BiPAP, but the past few days have been difficult for her. Sleep has come in short spurts. She began experiencing some chest pain today, haven't heard back about the x-ray yet. We were both reminded of the collapsed lung she experience the day before her first transplant. I'm really not sure how much more she is willing to tolerate before she asks for medication that will put her status on the list in jeopardy. But, the team continues to tell us that she is at the top of the list and to expect lungs at any moment.
Thank you for your continued prayer.
Nate
Breathing has slowly been getting more difficult for Tricia since being placed on the vent. The first few days were a relief from the BiPAP, but the past few days have been difficult for her. Sleep has come in short spurts. She began experiencing some chest pain today, haven't heard back about the x-ray yet. We were both reminded of the collapsed lung she experience the day before her first transplant. I'm really not sure how much more she is willing to tolerate before she asks for medication that will put her status on the list in jeopardy. But, the team continues to tell us that she is at the top of the list and to expect lungs at any moment.
Thank you for your continued prayer.
Nate
Monday, May 6, 2013
Stepdown!
Tricia has been "stable" the past few days, and just a few hours ago she was moved to the stepdown unit. This is a huge blessing. Gwyneth is very excited about seeing mommy in the morning! Other than that, we are just waiting for new lungs.
Nate
Nate
Friday, May 3, 2013
Full of Hope
The past seven days have been quite the roller coaster. Starting with the dry run, a trip to the ER, seeing how quickly Tricia deteriorated, and now seeing how much better she feels on the vent all in the past week.
As I mentioned last night, Tricia was intubated and placed on the ventilator yesterday morning. She was observed for a few hours to make sure she accepted the vent well, and then given a tracheostomy. She was fully awake two hours later and breathing so much easier. Everything went perfectly, and she literally looked and felt like night and day between yesterday morning and last night.
If you were with us five years ago, you'll remember that she was on a vent for about 3 months from Gwyneth's birth until a few days after her transplant. Again, she is unable to speak because she has no air flow through her nose/mouth and through her vocal cords. My lip-reading skills are returning to me quickly.
You might also remember that Duke had very little experience transplanting a ventilated patient five years ago. And, you might remember that Tricia was one of the very first patients at Duke to be placed on a brand new vent setting. It's a setting called Proportional Assist...they told us that they literally wrote the book at Duke using Tricia as a guinea pig. (You can read more about the vent setting HERE.) What we didn't really understand until yesterday is that they now use this vent setting for many of their patients and after Tricia's transplant have had many successful surgeries off the vent and are much more comfortable doing so.
So, when I was guessing that she would be taken off the list, it was a wonderfully ignorant guess. Tricia is now on the top of the list, and we are very confident that she will receive a call for good lungs very soon. She will remain in the ICU at least through the weekend, and we're still praying that she can be moved to our very familiar step-down unit as soon as possible. The staff in this ICU are amazing, but sleep is difficult and visitation is restricted. The two things beyond great medical care that help Tricia the most are sleep and spending time with family and close friends.
Modern medicine and prayer are a powerful combination. Thank you all for your continued prayers. Tricia is still very sick, but we are full of hope, at least for today.
Nate
As I mentioned last night, Tricia was intubated and placed on the ventilator yesterday morning. She was observed for a few hours to make sure she accepted the vent well, and then given a tracheostomy. She was fully awake two hours later and breathing so much easier. Everything went perfectly, and she literally looked and felt like night and day between yesterday morning and last night.
If you were with us five years ago, you'll remember that she was on a vent for about 3 months from Gwyneth's birth until a few days after her transplant. Again, she is unable to speak because she has no air flow through her nose/mouth and through her vocal cords. My lip-reading skills are returning to me quickly.
You might also remember that Duke had very little experience transplanting a ventilated patient five years ago. And, you might remember that Tricia was one of the very first patients at Duke to be placed on a brand new vent setting. It's a setting called Proportional Assist...they told us that they literally wrote the book at Duke using Tricia as a guinea pig. (You can read more about the vent setting HERE.) What we didn't really understand until yesterday is that they now use this vent setting for many of their patients and after Tricia's transplant have had many successful surgeries off the vent and are much more comfortable doing so.
So, when I was guessing that she would be taken off the list, it was a wonderfully ignorant guess. Tricia is now on the top of the list, and we are very confident that she will receive a call for good lungs very soon. She will remain in the ICU at least through the weekend, and we're still praying that she can be moved to our very familiar step-down unit as soon as possible. The staff in this ICU are amazing, but sleep is difficult and visitation is restricted. The two things beyond great medical care that help Tricia the most are sleep and spending time with family and close friends.
Modern medicine and prayer are a powerful combination. Thank you all for your continued prayers. Tricia is still very sick, but we are full of hope, at least for today.
Nate
Thursday, May 2, 2013
A Good Day
Quickly...
Tricia slept well last night and woke up feeling better and breathing more easily. Her team met and decided to go through with the intubation, ventilation and tracheotomy procedures. Everything went smoothly. They assured us that she will remain on the transplant list for the time being. Tricia woke up a few hours later feeling and looking so much better. She is breathing easy on the vent, happy to be still on the list and feeling better, and was even back to exercising within a few hours. They'll have her up and walking tomorrow.
Tricia is still very sick and in a very precarious situation, but today started well and ended better, and we feel that we've been given some extra time and hope. Today was a huge relief. We are beyond thankful for everybody at Duke who is taking such great care of Tricia, and for all of you who are praying for her.
Nate
Tricia slept well last night and woke up feeling better and breathing more easily. Her team met and decided to go through with the intubation, ventilation and tracheotomy procedures. Everything went smoothly. They assured us that she will remain on the transplant list for the time being. Tricia woke up a few hours later feeling and looking so much better. She is breathing easy on the vent, happy to be still on the list and feeling better, and was even back to exercising within a few hours. They'll have her up and walking tomorrow.
Tricia is still very sick and in a very precarious situation, but today started well and ended better, and we feel that we've been given some extra time and hope. Today was a huge relief. We are beyond thankful for everybody at Duke who is taking such great care of Tricia, and for all of you who are praying for her.
Nate
Wednesday, May 1, 2013
ICU Day 3
Tricia is now in her third day in the ICU. Here is a quick list of what we know.
She has remained on the BiPAP. The hope was a little time on the BiPAP would allow her to be able to regain some strength and go back to the nasal cannula, but the few times they have tried, her CO2 levels and blood pressure have jumped back up. With the BiPAP all of her vitals are at a safer level.
All tests have come back negative so far. It's good that she may not have an infection, but not good that we don't yet know what has caused this sudden decline. We are still waiting on a few more tests to come back. The assumption is her rejection has caught up with her and killing her lungs.
She remains on the transplant list, and I've been told she is basically at the top. This is common at Duke, when a tx patient becomes very sick and admitted to the hospital, to bump them to the top of the list to try and receive new lungs ASAP. We could receive a call at any time.
And she needs new lungs right now. Although she is complaining that her breathing is becoming more difficult, she appears to be stable. But if she declines at all, she will most likely be intubated and placed on a ventilator. The chances of coming off the ventilator are slim, and although I haven't talked with the team yet, by guess is they would not be willing to transplant her while she was on the vent. They have an intubation procedure scheduled for 10am tomorrow if it's needed.
Overall, Tricia is unrecognizable compared to a week ago. It's crazy now to think she was walking laps and pumping weights on Friday. She has been sleeping almost constantly since arriving and has only gotten out of bed a few times for a minute or two at a time. Although she is aware of where she is and what's going on, you wouldn't know it by talking with her. She has the BiPAP mask on, so she can't say much, and her mouth is so dry and tongue swollen that it's difficult to understand her anyway. As long as she is sleeping, she is relaxed, but any time that she is awake, she is extremely uncomfortable and anxious.
All of that to say, the chances that Tricia will make it out of the hospital without new lungs are incredibly small. Short of another miracle, either she gets new lungs now, or her struggle will be over soon. We are praying for an immediate call for new lungs and praying that she will stay off the vent for as long as possible so we can continue to pray and wait.
Thank you.
Nate
She has remained on the BiPAP. The hope was a little time on the BiPAP would allow her to be able to regain some strength and go back to the nasal cannula, but the few times they have tried, her CO2 levels and blood pressure have jumped back up. With the BiPAP all of her vitals are at a safer level.
All tests have come back negative so far. It's good that she may not have an infection, but not good that we don't yet know what has caused this sudden decline. We are still waiting on a few more tests to come back. The assumption is her rejection has caught up with her and killing her lungs.
She remains on the transplant list, and I've been told she is basically at the top. This is common at Duke, when a tx patient becomes very sick and admitted to the hospital, to bump them to the top of the list to try and receive new lungs ASAP. We could receive a call at any time.
And she needs new lungs right now. Although she is complaining that her breathing is becoming more difficult, she appears to be stable. But if she declines at all, she will most likely be intubated and placed on a ventilator. The chances of coming off the ventilator are slim, and although I haven't talked with the team yet, by guess is they would not be willing to transplant her while she was on the vent. They have an intubation procedure scheduled for 10am tomorrow if it's needed.
Overall, Tricia is unrecognizable compared to a week ago. It's crazy now to think she was walking laps and pumping weights on Friday. She has been sleeping almost constantly since arriving and has only gotten out of bed a few times for a minute or two at a time. Although she is aware of where she is and what's going on, you wouldn't know it by talking with her. She has the BiPAP mask on, so she can't say much, and her mouth is so dry and tongue swollen that it's difficult to understand her anyway. As long as she is sleeping, she is relaxed, but any time that she is awake, she is extremely uncomfortable and anxious.
All of that to say, the chances that Tricia will make it out of the hospital without new lungs are incredibly small. Short of another miracle, either she gets new lungs now, or her struggle will be over soon. We are praying for an immediate call for new lungs and praying that she will stay off the vent for as long as possible so we can continue to pray and wait.
Thank you.
Nate
Tuesday, April 30, 2013
In the ICU
Tricia arrived at Duke yesterday morning around 7am via ambulance. For the past 5-6 days, her breathing has steadily become more difficult. She has also had increasingly severe headaches and nausea. I suspected she was experiencing high CO2 levels. Shortly after arriving at the emergency room, she was placed on a BiPAP machine. Within an hour, her headache was gone, and within 5 hours her CO2 level had dropped from above 100 to 80. Normal CO2 levels are between 30-40.
Around 3pm Tricia was moved from the ER to the ICU. She'll stay on the BiPAP for as long as needed. If she continues to show signs of improvement, she could be moved out of the ICU to a step-down unit. The doctors believe she may have a virus which has weakened her lungs to the point that she can't exhale properly to discharge the necessary amount of CO2. She is being tested to determine if she does have a virus and has been placed on some antibiotics.
Landing in the ICU is never a good thing. It can be very difficult for somebody in Tricia's condition to recover, and although the ICU is the "best" place to receive the treatment she needs, it is nearly impossible to relax and sleep. We are praying that she'll be out of the ICU as soon as possible.
Thankfully, the transplant team is keeping her on the list, and they are hopeful she'll receive another call very soon.
Nate
Around 3pm Tricia was moved from the ER to the ICU. She'll stay on the BiPAP for as long as needed. If she continues to show signs of improvement, she could be moved out of the ICU to a step-down unit. The doctors believe she may have a virus which has weakened her lungs to the point that she can't exhale properly to discharge the necessary amount of CO2. She is being tested to determine if she does have a virus and has been placed on some antibiotics.
Landing in the ICU is never a good thing. It can be very difficult for somebody in Tricia's condition to recover, and although the ICU is the "best" place to receive the treatment she needs, it is nearly impossible to relax and sleep. We are praying that she'll be out of the ICU as soon as possible.
Thankfully, the transplant team is keeping her on the list, and they are hopeful she'll receive another call very soon.
Nate
Sunday, April 28, 2013
Disappointment
Several people have expressed their disappointment, sadness and even anger about yesterday's dry run, but please don't be sad or upset for us about yesterday. We honestly were at perfect peace about the dry run. We did not get overly excited, and we certainly didn't feel any sadness when we were told it wasn't going to happen. The staff we worked with were all very kind and took great care of Tricia while we waited, and we made a few new friends. It happened on a Saturday, so we had nothing on our schedule and the hospital wasn't busy so we didn't have to wait for anything Tricia needed. Our kids were back at home to celebrate a cousin's birthday, so we didn't miss any time with them. The weather was nice outside, so we drove with the windows down on the way home. Tricia got a good nap in afternoon and I got our place cleaned up a bit. Three of Tricia's best friends drove eight hours round trip just to spend a few minutes with Tricia last night and this morning. All in all, it was a good day.
Yesterday happened exactly as God planned it, and we're not disappointed about it at all. Whether new lungs come yesterday or tomorrow, even if they don't come at all, God is good all the time, and He knows the plans He has for Tricia.
Thank you for your prayers today and for the future.
Yesterday happened exactly as God planned it, and we're not disappointed about it at all. Whether new lungs come yesterday or tomorrow, even if they don't come at all, God is good all the time, and He knows the plans He has for Tricia.
Thank you for your prayers today and for the future.
Saturday, April 27, 2013
Dry Run #1
Nearly everybody waiting for a transplant experiences at least one dry run. And, in our opinion, we'd rather have no lungs than bad lungs. Today turned out to be a dry run, even though, for a few minutes, it looked like it was a go. We received the word that the lungs were good around, but just a few minutes later got another call that the lungs were no good. Being told the lungs good and then no good isn't the norm, but we're thankful for the team doing their due diligence to protect Tricia from anything less than suitable for her. Unfortunately, we assume that means the lungs weren't good for anybody, but that doesn't mean other organs from the donor weren't used for other people waiting. We'll continue to thank God for this donor and his/her willingness to give and to pray for his/her family.
The fact that we received a call this quickly is incredibly encouraging, and we're praying for another call very soon. Honestly, we are neither disappointed nor frustrated. God's timing is perfect, even when the results aren't want we want.
Nate
The fact that we received a call this quickly is incredibly encouraging, and we're praying for another call very soon. Honestly, we are neither disappointed nor frustrated. God's timing is perfect, even when the results aren't want we want.
Nate
Transplant Call
We received a call this morning at 7am that a pair of lungs is available. We are at the hospital now waiting for the final yes/no. Very possible it could be a dry run. Thank you for praying for the donor family. I'll update as soon as we know more.
Nate
Nate
Tuesday, April 2, 2013
Five Years
It's been five years. Five years that we will never take for granted. Five years ago at this exact moment I was getting settled in for a long night, awaiting the word that Tricia's double lung transplant surgery had been successful. Hundreds, maybe thousands of people, mostly strangers stayed awake with me, reading my blog updates every few hours, holding their collective breath, praying for Tricia's second first breath.
I know it's been frustrating for you who care so much for Tricia for the past several months as the blog has been quiet. For reasons I won't share, we felt it best to use only Twitter and Facebook to update about Tricia's health, and we deeply appreciate your patience.
Tricia's health has very slowly continued to decline since arriving in Durham in mid-October. She is down to 100 lbs, her breathing numbers are severely low, and she is very, very weak. She has had several different kinds of setbacks which have kept her from being re-listed...signs that her body is shutting down. Tricia has been working incredibly hard, participating in physical therapy as much as her body will allow. This journey has been incredibly difficult and frustrating for her.
We believe that the end is coming soon. Either she will be relisted because she become a "now or never" case, or the transplant team decides she cannot be re-transplanted and sends us home. We are not ready to be told "no"...as I've explained before, very few people get this second chance to begin with, and we are thankful that Tricia was given this opportunity, for which we are thankful. It is amazing that Tricia has survived this long, through the winter, and until the team sends us home, we have some hope. But, as I said, all the signs are pointing to the fact that a decision will need to be made very soon.
Tricia is not ready to end this. Although ultimately I believe we will both be able to accept God's will for this situation, Tricia doesn't want to leave her family, and I certainly don't want to continue this life without her. We need your prayer and encouragement that the next few weeks will provide us with the clarity to see things as God sees them. We are praying that Tricia will hit her weight and strength goals and that the setbacks will cease so that she can be listed and transplanted as soon as possible, and if not that God will give us peace.
Thank you so much for your support over the years and now. I will update the blog again when I can.
Nate
I know it's been frustrating for you who care so much for Tricia for the past several months as the blog has been quiet. For reasons I won't share, we felt it best to use only Twitter and Facebook to update about Tricia's health, and we deeply appreciate your patience.
Tricia's health has very slowly continued to decline since arriving in Durham in mid-October. She is down to 100 lbs, her breathing numbers are severely low, and she is very, very weak. She has had several different kinds of setbacks which have kept her from being re-listed...signs that her body is shutting down. Tricia has been working incredibly hard, participating in physical therapy as much as her body will allow. This journey has been incredibly difficult and frustrating for her.
We believe that the end is coming soon. Either she will be relisted because she become a "now or never" case, or the transplant team decides she cannot be re-transplanted and sends us home. We are not ready to be told "no"...as I've explained before, very few people get this second chance to begin with, and we are thankful that Tricia was given this opportunity, for which we are thankful. It is amazing that Tricia has survived this long, through the winter, and until the team sends us home, we have some hope. But, as I said, all the signs are pointing to the fact that a decision will need to be made very soon.
Tricia is not ready to end this. Although ultimately I believe we will both be able to accept God's will for this situation, Tricia doesn't want to leave her family, and I certainly don't want to continue this life without her. We need your prayer and encouragement that the next few weeks will provide us with the clarity to see things as God sees them. We are praying that Tricia will hit her weight and strength goals and that the setbacks will cease so that she can be listed and transplanted as soon as possible, and if not that God will give us peace.
Thank you so much for your support over the years and now. I will update the blog again when I can.
Nate
Monday, November 26, 2012
#PrayForTricia
We need your prayers tomorrow (Tuesday) from 7-10am. Tricia is still inactive on the list. We believe that she has done everything that has been asked of her and that the issues that caused her team to deactivate her have been resolved. Tricia's breathing is becoming more difficult, and we know that her window of opportunity for a transplant is getting smaller each day.
Tricia's transplant team meets every Tuesday morning to discuss all of their patients. PLEASE, pray that they will discuss Tricia and decide to reactivate her on the list. If you would pray anytime tomorrow, but especially between 7-10am, we would greatly appreciate it. We would also appreciate it if you would invite others to pray for Tricia as well. Use the hashtag #PrayForTricia and link to the blog if you can. Thank you in advance.
Nate
Tricia's transplant team meets every Tuesday morning to discuss all of their patients. PLEASE, pray that they will discuss Tricia and decide to reactivate her on the list. If you would pray anytime tomorrow, but especially between 7-10am, we would greatly appreciate it. We would also appreciate it if you would invite others to pray for Tricia as well. Use the hashtag #PrayForTricia and link to the blog if you can. Thank you in advance.
Nate
Tuesday, November 13, 2012
Deactivated
Tricia was deactivated today because she has been having some issues with her stomach for about a week. The pain became so severe that we ended up in the ER late Sunday night. We have no idea what the problem is, and her team is running a bunch of tests this week to try and identify the problem.
Deactivation means that she is still on the list, but they will skip her name if lungs become available. Reactivation is very simple, but they have to identify and fix the problem before they'll reactivate her. As I explained in my last post, it is imperative that she gain as much weight a possible...obviously, if she's having stomach pain, it's going to affect her ability to take in calories.
PLEASE, pray that her team will be able to take care of this issue as quickly as possible. Thank you.
Nate
Deactivation means that she is still on the list, but they will skip her name if lungs become available. Reactivation is very simple, but they have to identify and fix the problem before they'll reactivate her. As I explained in my last post, it is imperative that she gain as much weight a possible...obviously, if she's having stomach pain, it's going to affect her ability to take in calories.
PLEASE, pray that her team will be able to take care of this issue as quickly as possible. Thank you.
Nate
Friday, November 9, 2012
LISTED!!!
Tricia was listed and activated late yesterday afternoon. We are incredibly thankful. It appeared for a while that it might not happen...not everyone is offered a second double lung transplant, so we consider this a huge blessing.
Here are some details and thing you can be praying for:
> While the success rate of a first double lung transplant for CFers is well over 90%, a second is typically much more difficult. As Tricia's surgeon explained to us this week, "not ten times more difficult, more like 100 times." This isn't true for everyone...we have one friend who tells us her second TX was much easier than her first...but, we are preparing ourselves for a long recovery. There are bigger risks, like bleeding, clotting, infection, and considering Tricia's immune system is still shot because of the CAMPATH, she is at an even greater risk than most. We've been told, and we know from watching the experience of friends who have gone before Tricia, that Tricia could be in the hospital for several weeks or months as she recovers.
> Unlike her first transplant, when we were told that there was a less than 1% chance of finding her a match, she should be a much easier match this time around. The antibodies that were in her system due to blood transfusions and being pregnant with Gwyneth are long gone, which creates a much larger donor pool for her. This is a blessing. However, Duke is more stringent that they were 5 years ago, and because her blood type and antibodies is easier to match, they will be looking for the best set of lungs possible.
Five years ago, Tricia was at the top of the list at Duke and in this region, which meant that she was first in line for any set of lungs that were a match. This time around, although we're not sure where she is on the list, we know she's not at the top. The average wait on the list at Duke is around two weeks, and considering she was on the list for six weeks the last time, we are encouraged that she will not wait long.
> Her TX team had a difficult time making a decision to put Tricia on the list. She is borderline at best with her weight and strength. Ideally, we would love for her to gain about ten more pounds and be able to spend more time at physical therapy without becoming fatigued. It is incredibly important that she be as heavy and strong as possible going into surgery because she will lose at least ten pounds immediately after surgery. There is the possibility that she could be taken off the list if she were to become sick or lose weight. We are incredibly thankful for her team for making the decision to get her on the list.
> We know that Tricia will only get worse from here out. The rejection has caused irreversible damage to her lungs, and she says it feels like every day it gets a little harder to breathe. She is on O2 24/7, about 1 liter at rest and 4-6 liters when active. Her situation is much different than five years ago when she was on a ventilator in the hospital and unable to move from her bed without complete assistance. In many ways she is not as sick as she was then, but in some ways she is more sick. She is dealing with several related issues as well like high blood sugars, high blood pressure, and congestion in her lungs. She is very close to dying...the slightest cold or infection will probably be deadly and, even without those factors she is not going to last much longer with her lungs as they are.
We continue to trust God completely. Some things that took place this past week which I can't share with you have proved to us once again that He is the only One Who knows exactly what will happen with Tricia. We don't anticipate anything at this point except that God is in control and will continue to do what is best for Tricia. Humanly speaking, we hope this means new lungs and an extended life, and we understand that the medical odds are against us again.
Thank you for your prayers. Let me know if you have any questions.
Nate
Here are some details and thing you can be praying for:
> While the success rate of a first double lung transplant for CFers is well over 90%, a second is typically much more difficult. As Tricia's surgeon explained to us this week, "not ten times more difficult, more like 100 times." This isn't true for everyone...we have one friend who tells us her second TX was much easier than her first...but, we are preparing ourselves for a long recovery. There are bigger risks, like bleeding, clotting, infection, and considering Tricia's immune system is still shot because of the CAMPATH, she is at an even greater risk than most. We've been told, and we know from watching the experience of friends who have gone before Tricia, that Tricia could be in the hospital for several weeks or months as she recovers.
> Unlike her first transplant, when we were told that there was a less than 1% chance of finding her a match, she should be a much easier match this time around. The antibodies that were in her system due to blood transfusions and being pregnant with Gwyneth are long gone, which creates a much larger donor pool for her. This is a blessing. However, Duke is more stringent that they were 5 years ago, and because her blood type and antibodies is easier to match, they will be looking for the best set of lungs possible.
Five years ago, Tricia was at the top of the list at Duke and in this region, which meant that she was first in line for any set of lungs that were a match. This time around, although we're not sure where she is on the list, we know she's not at the top. The average wait on the list at Duke is around two weeks, and considering she was on the list for six weeks the last time, we are encouraged that she will not wait long.
> Her TX team had a difficult time making a decision to put Tricia on the list. She is borderline at best with her weight and strength. Ideally, we would love for her to gain about ten more pounds and be able to spend more time at physical therapy without becoming fatigued. It is incredibly important that she be as heavy and strong as possible going into surgery because she will lose at least ten pounds immediately after surgery. There is the possibility that she could be taken off the list if she were to become sick or lose weight. We are incredibly thankful for her team for making the decision to get her on the list.
> We know that Tricia will only get worse from here out. The rejection has caused irreversible damage to her lungs, and she says it feels like every day it gets a little harder to breathe. She is on O2 24/7, about 1 liter at rest and 4-6 liters when active. Her situation is much different than five years ago when she was on a ventilator in the hospital and unable to move from her bed without complete assistance. In many ways she is not as sick as she was then, but in some ways she is more sick. She is dealing with several related issues as well like high blood sugars, high blood pressure, and congestion in her lungs. She is very close to dying...the slightest cold or infection will probably be deadly and, even without those factors she is not going to last much longer with her lungs as they are.
We continue to trust God completely. Some things that took place this past week which I can't share with you have proved to us once again that He is the only One Who knows exactly what will happen with Tricia. We don't anticipate anything at this point except that God is in control and will continue to do what is best for Tricia. Humanly speaking, we hope this means new lungs and an extended life, and we understand that the medical odds are against us again.
Thank you for your prayers. Let me know if you have any questions.
Thursday, November 1, 2012
November 1 Update
Tricia has had a few rough weeks. Her breathing is continuing to become more difficult. She had had a consistent low grade fever. Yesterday she had her portacath replaced because it may have been infected, and sure enough she woke up today without a fever. Her lung infection remains but doesn't seem to be getting any worse.
Her doctors explained to us yesterday that they want her to add a few more pounds and continue to build her strength up before listing her for a transplant. She is getting nearly 100% of her calories from her feeding tube now. Her docs emphasize how critical a position Tricia is in...how close to dying she is right now. We continue to covet your prayers.
Nate
Her doctors explained to us yesterday that they want her to add a few more pounds and continue to build her strength up before listing her for a transplant. She is getting nearly 100% of her calories from her feeding tube now. Her docs emphasize how critical a position Tricia is in...how close to dying she is right now. We continue to covet your prayers.
Nate
Friday, October 19, 2012
Discharged
After over a week in the hospital, Tricia was discharged on Wednesday. She began her physical therapy at Duke yesterday. She will go every weekday for about four hours to help strengthen her body in preparation to be placed on the transplant list.
I did not realize how sick Tricia has become until she got "home" on Wednesday. Her breathing is incredibly laborious. I was up most of that night in bed listening to her breathe...the bed literally shakes with each breath because she puts so much effort into it. It reminds me of this exact same time five years ago when she was pregnant with Gwyneth and I would wake up several times a night just to make sure she was still breathing.
I am very concerned for her. This has all come on so quickly, and I know it has her really worried that she won't be able to be strong enough to get on the transplant list.
We are in Durham now, Tricia is full time and I'll be traveling back home on the weekends whenever possible. This was much easier the first time when we did not have children. We are thankful for our family and friends who are helping us.
Please continue praying for Tricia, that she will be strong and healthy enough to be listed as soon as possible. Please pray for our children, Gwyneth and our foster child.
Nate
I did not realize how sick Tricia has become until she got "home" on Wednesday. Her breathing is incredibly laborious. I was up most of that night in bed listening to her breathe...the bed literally shakes with each breath because she puts so much effort into it. It reminds me of this exact same time five years ago when she was pregnant with Gwyneth and I would wake up several times a night just to make sure she was still breathing.
I am very concerned for her. This has all come on so quickly, and I know it has her really worried that she won't be able to be strong enough to get on the transplant list.
We are in Durham now, Tricia is full time and I'll be traveling back home on the weekends whenever possible. This was much easier the first time when we did not have children. We are thankful for our family and friends who are helping us.
Please continue praying for Tricia, that she will be strong and healthy enough to be listed as soon as possible. Please pray for our children, Gwyneth and our foster child.
Nate
Thursday, October 11, 2012
Thursday Night Update
Tricia is still feeling the same. Infection is still there, she is on O2 as needed. She had a very simple procedure today to fix her portacath because it wasn't able to draw blood. She is having another simple procedure tomorrow to change her feeding tube from a G tube to a G-J tube.
If all goes well over the weekend, she will be discharge early next week and will immediately begin physical therapy at Duke to prepare for a transplant. From what we've been told, she is now in the window, but needs to build her strength up to prepare for surgery. I'll refer you to This Post from 2008 for a description of how the whole transplant process works at Duke.
If all goes well over the weekend, she will be discharge early next week and will immediately begin physical therapy at Duke to prepare for a transplant. From what we've been told, she is now in the window, but needs to build her strength up to prepare for surgery. I'll refer you to This Post from 2008 for a description of how the whole transplant process works at Duke.