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

69 comments:

Sheila said...

Wow - I'm so glad to read this. Lots of prayers for Tricia, you & your kids.

ermaloff said...

Thinking positive thoughts for y'all! Does Gwyneth have an understanding of what's going on? Are you able to convey what's happening on her level?

Mary in PA said...

Praying for you! Are you guys having to stay at the hospital or are you able to be at "home"? (I assume that if you aren't in the hospital you aren't really back at your house since I think you mentioned once that you are too far away to make it time if you get the call.)

Unknown said...

I am so happy for you guys...and praying lots for you. Thank you so much for reminding us with your lives and words to trust and love God. May God continue to strengthen and encourage you, and I pray that God will grant you many more wonderful years together as a family!

BK said...

Praise the Lord. We are so glad. Praying for you guys.
Bryan and Olivia (and Micah)

Catherine said...

Praying for all of you! Asking God for a miracle!!!

PK said...

I am continuing to pray for your family. You were on my mind a lot yesterday.

Michelle said...

Wonderful, amazing news! I know God will continue to prove himself trustworthy and enough for you and Tricia! Praying daily!

Anonymous said...

You've got this Tricia! Sending up prayers of thanksgiving and believing in God's sovereignty and his blessing over you and your family!
~Karis

Skye Harmony said...

I read some stuff on the Duke site about their lung transplant program and how they have much higher success rates and lower waiting times than the average transplant center in the U.S. and I was amazed. I am so glad Tricia can go to Duke. Tricia, congratulations on being listed! I know it is a long road ahead but I love that you guys are so positive. I'm thinking of you!

Is there a place we can send encouraging mail to Tricia? Or is mail dangerous because it could carry in germs?

Happy Four said...

I am praying daily for all of you and so encouraged by this latest post. Prayers and blessings to you.

Kim McGee said...

Praise God! We are praying for everyone involved!

Debbie in Grayson said...

Prayers continue... thanks for the update I check daily and it is nice to know what to pray for. God has blessed your family and I have to believe He is not done with your family yet. I know He will continue to bless you His good and faithful servants.

Kristin said...

I think your and Tricia's faith is amazing and your positive attitudes are unbelievable despite what you have been through! I'm sharing your "Pray for Tricia" photo on my blog today and I will be praying for you and your family as well.

-stephanie- said...

I've been praying for Tricia. Thanks for the specifics to pray for. God bless all of you.

Kristen said...

I am so glad to read she has been listed. Continuing to pray.

Susan said...

CONGRATS!!!

kate hazlehurst said...

Still thinking of you and praying for you all. lots of love

Anonymous said...

Thanks for the update! Still thinking of you all. Keep hanging in there, Tricia!

*super dude* said...

We have your family in our prayers and constantly check for updates on Tricia. I'm glad she made it on the transplant list and hope she recovers well from the surgery.

Anonymous said...

Yes! That's an answer to prayer!

Please continue to post and update so that we can pray specifically.

I love your love and while love isn't, as the song says, all you need, it is what makes the world go round. Your story is a beautiful one and each day you write a new chapter together. Destiny

bobbie said...

Keeping you all in my thoughts and heart ~

Anonymous said...

We have never met in person and probably never will, but I have fallen in love with your family. Your grace, honesty, devotion and faith are inspiring. I will continue to life up your family in my prayers. I pray for Tricia, but I also pray for everyone who loves her.

Cindy in GA said...

Praying hard here for all of you!! Thank you for letting us know what's happening through this journey. It's a blessing to "know" your family through years of reading your blog and praying.

Anonymous said...

I will be praying for God's will! I are about your family.

Bekah Boo said...

Continuing to always think and pray for you guys.... May Jesus be with each of you, giving you all peace and strength and grace. I wish I could hug you all and snap my fingers and heal Tricia's body once and for all, but I am beleiving the Holy Spirit to minister to you instead, and bless you in a way only He can.

Ellen said...

Thank you for sharing your struggles and your heart and your faith with such transparency... praying for your family as you see the Lord's plan unfold and trusting, with you, that God is in control. So excited that she's listed and hopeful that the second transplant is even more successful then the first!!!

Erika said...

praying for you all. (((hugs))) is it for sure that she will get the transplant- i am trying to understand what "listed" means. what time frame until transplant? is there anything specifically we can do for you (besides prayer)? sending you all much love in this incredibly difficult season...

Anonymous said...

Wonderful news! So many things are again falling in place for a miracle. Many, many prayers!

Anonymous said...

Your strength and attitude are an encouragement. Today (Nov. 9th) is my 11 year post lung tx. anniversary. I also just found out in the last hour that I may have lymphoma. Your story of faith and courage are an encouragement--thank you for sharing it with others. Praying for you Tricia and that the Perfect lungs will come at the perfect time!

Anonymous said...

May you be surrounded by God's peace
and wisdom. May the medical team
be blessed as they serve with
dedication and compassion.
May the Holy Spirit bring extra
comfort and strength to your lives.

Devin said...

I have followed this blog from the very beginning--when Tricia was pregnant with Gwyneth and getting her first "new" set of lungs. Hard to believe this is happening but I am so glad to see that she has been listed again. I will continue to pray for your family, as I have done now for several years. :)

Amy said...

Thank you for sharing this information with the blog world. I will certainly continue to include your family in my prayers and send good thoughts to all of you as Tricia awaits her next surgery. So happy that she was placed on the list again and hoping it is part of God's plan that she will not have to wait for very much longer.

Sheena said...

Hi from Australia. Have followed your story/blog since before Tricia's first transplant. Sorry to see her go through it all again. Do you have a facebook page that you update more frequently? Would love to follow you that way. Anyway, just wanted to let you know that I am praying for your family.

Anonymous said...

I don't know you but I've been reading your blog for many years. Tricia has really been on my heart so much recently and my family and I have been praying for all of you. My heart is heavy for Tricia's pain and the stress and strain on you, Gwenyth, and your foster child. Thank you for updating. Our family is praying for yours.

Hannah in MD

Marikje said...

SO HAPPY to hear this update. I have been following your story for some time, since before Gwyneth was born. Happy to see Tricia's pic too! Lots of prayers for you all.

deb said...

Sending my prayers.

Lesley said...

Huge answer to prayer! Will continue to pray that things will go quickly and smoothly for Tricia. (FYI: Your blog is my home page...I pray for Tricia and you all every time I open my laptop.)
Your family is an inspiration to many, many people.
Blessings,
Lesley England

Janan Bergen said...

Praying for you and your lovely family! So encouraged by your faith and trust in God no matter what happens to you! You are truly an inspiration. God will reward you for your faithfulness! Love you guys! Janan

bkmanary said...

Praying and sending positive, hopeful thoughts to you all during this "hurry up and wait" period.
In His Love, from Brad-Karen-Lauren-Dana in Vancouver, BC, Canada

CulyQFun said...

Praying daily! God is the Miracle maker.
Praying from Seattle

Allison in AK said...

Prayers from a CF family in Alaska!

Shan said...

Praying

Karen said...

Thank you for sharing your journey with us. We will continue to pray for EVERYONE involved!

The Willis'
Tupelo, MS

katherine said...

Praise God from whom all blessings flow....the blessing of Gwenyth, new lungs, and the possibility of new lungs again. Praying for strength for you and your family and peace in your hearts.

Anonymous said...

I wish Tricia and your whole family the very best.

Since you ask for questions, I am curious whether already receiving donor lungs puts Tricia at a disadvantage for receiving another set. How is the list ordered - is this taken into account?

Please do not feel pressure to answer this, I know you have more pressing needs on your mind. But if anyone knows more about how the lists work I'd be interested in hearing.

R in WA

Erika Bragdon said...

Praise God! We will keep praying!

Erika in NH

Mama2Kayden said...

Wooohoooo! I am SO thrilled for Tricia! I pray that these new lungs come quickly for her!
We have been praying for Tricia ever since we learned she was having so much difficulty with her lungs.
My question is what will happen with your foster child now that you and Tricia are basically having to live near the hospital? I noticed in photos that you often bring Gwyneth along with you but wasn't sure if you still had the foster child with you? If not, I pray that the foster child had a smooth adjustment to his new home.
Nate, I was also wondering if it would be possible for my small group and I to send Tricia a gift package to lift her spirits?
Thank you for letting us know how to specifically pray for Tricia.

Katie Becker said...

Praise God. Amazing news!
Thanks so much for taking the time to explain everything so well to us. I had no idea she would lose so much weight right after surgery! Why is that? Why can't the docs use her feeding tube to keep calories up after the operation?
I am so happy that Tricia is getting a second chance with donor lungs. This might be a stupid question, but is there a limit to how many times a person can be listed for donor organs of any kind?

Anonymous said...

Praying for new lungs for Tricia, strength and good health too! Keeping Nathan and family in healing prayers as well. Stay strong Nathan. All my best wishes, thoughts and prayers to you and Tricia!

Kim in Canada

Erin Taylor said...

In as little detail as possible - to maintain your privacy - will you let us know what your financial situation is like? I just recently hit my three months post transplant mark and (as I know you know as well) I know the financial aspects may be overwhelming. Is there anywhere we can donate to help with the costs if the transplant and the possibly extended recovery time? Please feel free to message me directly if you'd rather. Good luck to you and your entire family. I will be keepin you guys lifted up in constant prayer!

Erin Taylor
Orlando FL
28w/CF Dbl Lung Tx 7/31/12 Mayo Clinic - Jax FL
Follow my transplant journey at:
Inhale - Exhale - Repeat
www.ierepeat.con

asplashofsunshine said...

GREAT NEWS! I love the photo at the end. What a strong woman!

Selina said...

Good luck with everything, I am thinking of you all often. It is so amazing that the average wait time is only 2 weeks, here in Australia it's between 9 and 12 months. I hope the call comes very soon,

fellow cfer in Australia
Selina xx

Deborah said...

Praying much, continuing in prayer...with love from Ohio. <3

Paula said...

Thankful that she got listed and hopeful for the best.

Anonymous said...

continuing to follow your story and pray for Trisha and your family.

Anonymous said...

You all are in my thoughts and prayers. Stay strong.

Anonymous said...

May God be with Tricia and you and your family!!! She will be in my prayers!!!! Diane Carson

Danifred said...

Thinking of you and your family.

Dana said...

I read your blog religiously but rarely leave comments. Just wanted to let you know that you are in our prayers. Praying for peace, a good match, and above all for God's glory to be evident with every step of this part of your journey. Thanking God for this opportunity for Tricia and your family. Thank you for continuing to share your story with us and keeping us updated.

Maire said...

Amazing grace.

lauramiller said...

Dear Mr. Lawrenson,

My daughter is a freshman in high school and in her honors biology class she was assigned cystic fibrosis as a project. She would like to use your blog as a reference, quoting nothing in particular, but rather using it to tell what the day of an individual with CF is like. BTW, I've been following your blog for such a long time and was so happy to see about Tricia being placed on the list. God is great! Your blog and faith are a testament to that. Laura Miller

Anonymous said...

Many, many prayers for your beautiful family.

Jenny in FL

Lisa said...

5Tricia gwyneth and Nate, little Ty my three yr old ,and I send love,prayer and encouragement,from 3here in San Diego.I was just released from the hospital last night after hip revision surgery.The surgery was my third major surgery in two years!Praise God for the inspiration you bring.

Leslie said...

I have followed you for years and I am praying for you guys. It is a difficult road that you have traveled and are currently traveling. I pray that God's choicest blessings will be with your family.

Erica said...

Praying for you guys. Get stronger Tricia!

vonFRINKenhagen said...

Praying for your family! I haven't checked the blog in a while and I am glad to see Tricia made the transplant list! Continue to look to God!

MadMaude53 said...

Praying for Tricia, you and Gwyneth. Once more, your family's situation and faith are an inspiration to me, and puts something that I am again facing into perspective for me--just as your original journey did 5 years ago. Blessings to you all. Prayers for the best possible outcome. With love.

MadMaude53 said...

Prayers for Tricia, you and Gwyneth. Once again, what you and your family are facing helps me to put something I must face again into perspective, just as it did 5 years ago. You will all be in my prayers for the best possible outcome for Tricia. With love.