(No word yet on the transplant listing...in the meantime...)
So, every transplant patient is different. No two transplant cases are ever the same. I figured I share with you what I know about Tricia's specific case.
Because of everything Tricia's body and mind have been through the past several months, she is a bit of a unique case. Although she is well enough to be listed, she is still extremely sick. I'll let you know for sure later, but she should be receiving a very high score to place her near the top of the list. There are some very big concerns involving a double lung transplant, and some even bigger concerns for Tricia:
> Tricia's PFT Levels (FEV1) are very low. We haven't had them checked in several months, but the last time (maybe in August) they were just below 15%. I'm sure her numbers are much lower now. In comparison, my PFT's would probably be in the 90's.
> Duke rarely transplants a patient who is on a ventilator. Most patients who are on a vent are simply too sick or weak to be considered for a transplant. Tricia, however, is showing everyone that she should do well through the surgery and first few weeks of recovery because she is able to do a lot of PT while either on the vent or on a "trach collar trial" (off the vent for a short period). But, patients who are transplanted while on a vent tend to be on the vent longer after transplant.
But, Tricia has a lot of great things going for her concerning her future transplant:
> (Projected) High placement on the list, meaning she should be first or second in line when the right set of lungs comes along.
> A common blood type, which increase her chances of getting a good set of lungs quickly.
> An average chest size, which also should increase her chances.
> Youth. Most transplant patients are much older than Tricia, which skews that national 90% survival rate.
> Other than her lungs, she's in good shape (despite the past few weeks).
> Duke is one of the best (as in top 1 or 2 every year) for double lung transplants. Their survival rate is actually above the national rate at around 95%.
Tricia's current PT basically consists of anything beyond laying in bed. Even to sit up is a good thing for her body. She's spending time most days standing and sitting, stand and marching in place, taking 5 minute walks around the floor, riding a stationary bike in her room for about 10-15 minutes, using a hand-bike to work her arms, lifting 3lb weights, and a few other things.
Nate
Showing posts with label Exercise. Show all posts
Showing posts with label Exercise. Show all posts
Tuesday, February 5, 2008
Friday, January 25, 2008
10:27pm Update
Tricia did awesome today. She sat in her chair for most of the day, took a walk up and down the ICU hallway (twice) and stayed off the vent for 7 hours straight! She'll try to go even longer tomorrow! Needless to say she is exhausted and ready for some sleep.
Gwyneth is about the same, which is a good thing. They're keeping a close watch on her and doing a lot of precautionary stuff. She is sleeping and breathing like a champ, so it's obvious that she could care less what's going on inside her belly, so that makes us feel a little easier. As soon as her GI stuff gets well, they'll stick a feeding tube down her throat and give her a few more drops of breast milk.
I am hanging with Tricia tonight, although I may head home if she sleeps as well as I'm hoping she will.
Here are a few pics from the past few days!
Check in tomorrow morning around 9am EST...I promise that my next post will be the best ever!
Nate
Gwyneth is about the same, which is a good thing. They're keeping a close watch on her and doing a lot of precautionary stuff. She is sleeping and breathing like a champ, so it's obvious that she could care less what's going on inside her belly, so that makes us feel a little easier. As soon as her GI stuff gets well, they'll stick a feeding tube down her throat and give her a few more drops of breast milk.
I am hanging with Tricia tonight, although I may head home if she sleeps as well as I'm hoping she will.
Here are a few pics from the past few days!
Check in tomorrow morning around 9am EST...I promise that my next post will be the best ever!Nate
Monday, January 14, 2008
WOW!
I've gotten several emails like the one below, but this one really amazed me, and with the sender's permission, I'm posting part of it here as an encouragement for all of us.
To make a long story short, I’m a marathon/ultra marathon runner. People always ask me…how can you run 26 miles? My response….I’ve run 50…that’s nothing. What keep me going is knowing that there are people out there who would love the opportunity to run a marathon but can’t. I’ve run next to people in wheelchairs and people with artificial legs. It’s very inspiring. It makes you think…if they can go the distance, I need to stop complaining and thank God! Whenever I run a race I like to run in honor of someone bcs it reminds me of how blessed I am.
I was set to run the Mardi Gras Marathon on 2/24. Then I heard about Tricia! Your strength, her strength and the strength of that beautiful baby girl has inspired me. With your permission I’d like to run for Tricia and donate the funds raised to your trust fund. You can tell her that I’m taking her on a 26.2 mile journey and I’ll do all the work! She just has to focus on getting better and hang on. I pray for your family every day.
If it’s ok with you, I’d like to move forward and start raising funds at our next service. I’ll be wearing her picture on my back during the run. I’ll make sure to send you photos when we (Tricia & I) cross the finish! When she wakes up you can tell her she has to better so she can run a marathon. Hopefully you’ll get a smile.
God Bless You,
K. Byrd
Thanks to everyone who has felt the need to do something for us. Whether "large" or "small", we appreciate it all. I strongly believe in the "pay it forward" principle...God blesses us, not so that we can become selfish and enjoy life on our own, but so that we can turn around and be a blessing to those around us. Please, know that we have already begun doing what we can in our small ways to bless those I've seen in need around us here at the hospital.
Nate
To make a long story short, I’m a marathon/ultra marathon runner. People always ask me…how can you run 26 miles? My response….I’ve run 50…that’s nothing. What keep me going is knowing that there are people out there who would love the opportunity to run a marathon but can’t. I’ve run next to people in wheelchairs and people with artificial legs. It’s very inspiring. It makes you think…if they can go the distance, I need to stop complaining and thank God! Whenever I run a race I like to run in honor of someone bcs it reminds me of how blessed I am.
I was set to run the Mardi Gras Marathon on 2/24. Then I heard about Tricia! Your strength, her strength and the strength of that beautiful baby girl has inspired me. With your permission I’d like to run for Tricia and donate the funds raised to your trust fund. You can tell her that I’m taking her on a 26.2 mile journey and I’ll do all the work! She just has to focus on getting better and hang on. I pray for your family every day.
If it’s ok with you, I’d like to move forward and start raising funds at our next service. I’ll be wearing her picture on my back during the run. I’ll make sure to send you photos when we (Tricia & I) cross the finish! When she wakes up you can tell her she has to better so she can run a marathon. Hopefully you’ll get a smile.
God Bless You,
K. Byrd
Thanks to everyone who has felt the need to do something for us. Whether "large" or "small", we appreciate it all. I strongly believe in the "pay it forward" principle...God blesses us, not so that we can become selfish and enjoy life on our own, but so that we can turn around and be a blessing to those around us. Please, know that we have already begun doing what we can in our small ways to bless those I've seen in need around us here at the hospital.
Nate
Tuesday, December 4, 2007
Prayer Requests
So, I told you that I'd list some specific prayer requests. Here you go:
> The doctors have taken Tricia off of several of her normal CF meds to protect the baby. They have replaced some of them with safe meds, but she is definitely missing out on the benefits of her usual meds. So far, everything about the baby is healthy, but Tricia is suffering because of it.
> Tricia now has Gestational Diabetes. Diabetes are common both in CF patients and in pregnancy, so she was almost guaranteed to deal with it at some point. She is currently taking three different kinds of Insulin (all shots) to counter her need for a high carb, high calorie diet. Counting carbs, pricking her finger every few hours to test her blood sugar level, thinking more about what and when she eats (and doesn't eat), etc. has added to the stress of her daily life.
> As the baby grows, the room for her lungs to expand shrinks. Tricia is now on oxygen almost 24/7. She carries an Oximeter with her everywhere so that she can always be sure her heart rate and oxygen intake are at a healthy level for both she and the baby. She also carries portable oxygen tanks everywhere. Even with the extra oxygen, her levels are constantly on the brink of being dangerous, especially for the baby.
> Because of her oxygen level, Tricia is very limited in what she is able to do, where she is able to go, etc. Things as common as folding laundry, fixing lunch and walking to the car have become very laborious for her. Her daily PT at the Center for Living is becoming more and more difficult, and more and more important. She is not able to travel much any more, and she may not be going home again until after the baby is here, which is not fun to think about, especially for her. More than likely, she will be on bed-rest in the hospital in the near future.
> Because of the new diet, diabetes, oxygen issues, etc., we have to get up several times in the middle of the night to tend to things, which makes our daily routines a little more difficult. I suppose that it's god preparation for the baby, but not really healthy, especially for Tricia. Needless to say, we've both been sleeping later and Tricia has been getting as many naps as she can.
That's all for now. We appreciate your prayers and sincere words of encouragement. We are relying on God more than ever for our strength and joy, and we are seeing Him provide all that we need. We're always open to phone calls and emails and even visits (for anyone who wants to make a trip to Durham). Thanks!
Nate
> The doctors have taken Tricia off of several of her normal CF meds to protect the baby. They have replaced some of them with safe meds, but she is definitely missing out on the benefits of her usual meds. So far, everything about the baby is healthy, but Tricia is suffering because of it.
> Tricia now has Gestational Diabetes. Diabetes are common both in CF patients and in pregnancy, so she was almost guaranteed to deal with it at some point. She is currently taking three different kinds of Insulin (all shots) to counter her need for a high carb, high calorie diet. Counting carbs, pricking her finger every few hours to test her blood sugar level, thinking more about what and when she eats (and doesn't eat), etc. has added to the stress of her daily life.
> As the baby grows, the room for her lungs to expand shrinks. Tricia is now on oxygen almost 24/7. She carries an Oximeter with her everywhere so that she can always be sure her heart rate and oxygen intake are at a healthy level for both she and the baby. She also carries portable oxygen tanks everywhere. Even with the extra oxygen, her levels are constantly on the brink of being dangerous, especially for the baby.
> Because of her oxygen level, Tricia is very limited in what she is able to do, where she is able to go, etc. Things as common as folding laundry, fixing lunch and walking to the car have become very laborious for her. Her daily PT at the Center for Living is becoming more and more difficult, and more and more important. She is not able to travel much any more, and she may not be going home again until after the baby is here, which is not fun to think about, especially for her. More than likely, she will be on bed-rest in the hospital in the near future.
> Because of the new diet, diabetes, oxygen issues, etc., we have to get up several times in the middle of the night to tend to things, which makes our daily routines a little more difficult. I suppose that it's god preparation for the baby, but not really healthy, especially for Tricia. Needless to say, we've both been sleeping later and Tricia has been getting as many naps as she can.
That's all for now. We appreciate your prayers and sincere words of encouragement. We are relying on God more than ever for our strength and joy, and we are seeing Him provide all that we need. We're always open to phone calls and emails and even visits (for anyone who wants to make a trip to Durham). Thanks!
Nate
Monday, October 15, 2007
Yes!
My new shoes came in today and I took them out for a test run, literally. I wore them over to Terry's birthday party to make everyone jealous...Ramon was the only one who really liked them, but then, he is color blind...
Nate
Nate
Saturday, October 13, 2007
Saturday Night
> My new shoes haven't come in yet...I'm pretty sure I would have run like 11 miles today...
> Tricia and I participated in the 1st Annual Vintage Ping Pong Tournament this evening. Neither of us made it very far, but it was fun.
> Next week mayb be a short week for us...we mayb not make it up to Durham until Tuesday, and we may have to come home early...throw in a day at the state fair, and we may only get 2 days of PT in.
> We're going to get some packing done tomorrow. Feel free to join us.
> I love baseball in October!
> I love that the Skins could be in first place tomorrow afternoon!
> I love that the eagles are really bad!
> I love that my wife is smokin' hot!
Nate
> Tricia and I participated in the 1st Annual Vintage Ping Pong Tournament this evening. Neither of us made it very far, but it was fun.
> Next week mayb be a short week for us...we mayb not make it up to Durham until Tuesday, and we may have to come home early...throw in a day at the state fair, and we may only get 2 days of PT in.
> We're going to get some packing done tomorrow. Feel free to join us.
> I love baseball in October!
> I love that the Skins could be in first place tomorrow afternoon!
> I love that the eagles are really bad!
> I love that my wife is smokin' hot!
Nate
Tuesday, October 9, 2007
My New Orange Shoes
I bought some new running shoes tonight...my wife's muscles are getting bigger than mine from all of this PT...
Nate