Wednesday, February 13, 2008

More Specifics of Tricia's Transplant

So, here are some more things about Tricia's upcoming transplant...just learned some of this today.

> Tricia is blood type A. Type A actually has two subtypes: A1 & A2. She has some unique antibodies in her blood that place her in the A2 category. A1's make up about 80% of the A blood type, which means Tricia is only a match to about 20% of type A organ donors. Lots of discussion and research has gone on among the transplant team and it has been decided that Tricia will also be able to received a donation from a type O donor. The issue with type O is that type O transplant patients will be considered ahead of Tricia...if a type O recipient is not found, the offer could trickle down to Tricia. All of this simply means that Tricia's new lungs are going to be harder to come by.

> Tricia will be offered three documents to sign.

- Surgery and Post-Transplant Risk - Tricia must sign a document that explains the risks of the surgery and post-transplantation (see next major point below).
- "Relationship" Contract - Tricia must sign a document that outlines the expectations for her post-transplantation care...if she's not willing to do what the doctors tell her to do, she won't get her new lungs.
- High Risk Donors - Tricia does not have to sign this document, which basically explains that some organs/donors are labeled as "high risk". If Tricia does not sign this document, she'll limit her options even more by stating that she'll only accept "low risk" organs. The risks are extremely small. "High Risk" simply means that the donor has been known to have participated in one of the following (not the exhaustive list): Jail Time, Tattoos, Illegal Drug Use, Multiple Sexual Partners, etc., and basically means that the donor has done something in his/her life that could create a health risk for those receiving his/her organs. Again, the risks are incredibly minimal (about 1 in 250,000), and Tricia will sign this document.

> I've mentioned this before, but I'll mention it again. Duke's survival rate for double lung transplant is higher than the national average. For CF patients at Duke, there is about a 95% survival rate through surgery and first year, a 65% survival rate through the first 5 years, and a 45% survival rate through 10 years. Compare that to a 50% survival rate 1 year from now for Tricia without a transplant, and a "0%" (doctors words) survival rate 5 years from now for Tricia, and those above numbers look really good.

> Tricia has had a Portacath for the past two years. Her veins are basically shot, pic lines are very hard to place in her body, and the only good/easy way for her to receive IV treatements has been with this port. She will have it removed tomorrow (involving minor surgery) because it could be a cause of infection during the transplantation. She has had a pic line for the past several weeks that will hopefully last as long as possible.

> If Tricia's cultures come back clean over the next several days, and there no more setbacks, there is a good chance she'll be listed and activated by next Tuesday. She should be placed on the top of the list. We'll see...

Nate

51 comments:

Emily said...

Here's to praying for clean cultures!

Emily said...

Here's to praying for clean cultures!

Julie said...

Praying for no infection, a spot at the top of the transplant list, and great new lungs! Praying Tricia and Gwyneth have several years ahead to celebrate all of the cool stuff God's done in their lives.
Thanks, as always, for sharing!

Anonymous said...

Praying Tricia continues to heal and that she gets some new lungs very soon! How is Gwyneth today?

Mrs. Wilson said...

amen to what Emily said!

JanelleGrace said...

You guys are always in my mind. I hope everything comes out good!

All of you are so strong and amazing.

Thoughts and Things said...

How amazing is it that you live in NC where Duke is! I don't know if Tricia's parents did that on purpose, but if not, then, wow.

Glad to hear things are going so well, you guys touch my heart.

Laurie said...

Praying for Tricia to be cleared to go on the list next week. Clean cultures and new lungs. Both of your girls are prayed for daily in my home.

Laurie in Ca.

Anonymous said...

Could she have a designated donation? If tragedy was to strike someone in my family (we are all either O or A+) - could we designate organs to go directly to Tricia and only Tricia?

Anonymous said...

Thinking of the three of you!
Tracy in South Dakota

Anonymous said...

Great news...continue to pray for good health and strength for both your girls....sending love from Dallas.

Megan & Company said...

As always, praying and expecting God's hand to work in mighty ways.

Baby Leino said...

Thanks for the update, Nate. Praying for clean labs & a continued patent PIC line.

Anonymous said...

I'm praying that God's will will be done in your lives.

Sarah in Missouri

Anonymous said...

I continue to pray for Tricia, Gwyneth and you. Thank you for sharing your incredible journey and giving witness to God's power in our lives.
Blessings to all.

TsMom said...

Nate, Glad you & Tricia have received more TX info.

My daughter is 17 1/2 with multiple medical problems. She received her double lung TX 7 1/3 years ago yesterday. She is doing very well.

Anything I can offer in info &/or websites, support groups & more, please don't hesitate to contact me through the CONTACT @ my URL: www.MYTVSurfer.com I would then give you personal e-mail & would be happy to be of any assistance.

Blessings,
Karen

Betsy McK said...

Many prayers to you all as you await Tricia's placement on the transplant list and that a perfect match will come along quickly.

Christy said...

Praying hard from KY
Christy

Anonymous said...

God has already shown us all that His will works apart from all the medical "odds"! We will continue to pray that God's perfect timing will again allow Tricia to "beat the odds" and give you all the desires of your hearts. :) I truly believe God created Tricia with a deep love for children for a special reason. May God give us all peace, strength, and patience as we await the unveiling of His plan! To God be the Glory!

Thanks for sharing these specifics with all of us. God continues to use your journey to touch and strengthen lives for His kingdom! We are also truly enjoying your "love story"! It always brings a smile. :)

Love and continued prayers,
The Edwards family

Emily said...

I am continuing to pray for you, as always!
Do not despair about being hard to match (I'm sure you won't, but I thought I'd say it anyway!). I am AB+ and have a small chest, so it was going to be tough to find my donor, too. But I only waited about 5-6 weeks, and my organs, amazingly, came from Minnesota (I live in Ohio). God works wonders!! :) :) (AND I just hit the 31 mo. post-tx mark)
I hope the PICC does well for Tricia. I was in the same spot, and got a port the December before my transplant. It has truly been a godsend.
I will pray, pray and pray some more for you and your family.

Kirsten said...

I am fascinated by your journey. Thank you so much for sharing with a stranger! I am a nurse, and I have a huge interest in CF. When I saw your blog, I was immediately hooked. What a blessing to read your thoughts, your trust in God, the heartaches and the joy! I have been praying for you, Tricia and Gwyneth. I am going to pass on your link to a couple CF friends of mine for encouragement and hope!

Anonymous said...

Thanks as always for keeping us all updated! We continue to pray for your girls. May God continue to answer these prayers!!!!!!!

barb said...

Praise the Lord! Praying for all things to work together the way they need to for her get put on the list ASAP.

Anonymous said...

Praying specifically that Tricia gets on the Transplant list on Tuesday!

Almost 1,000,000 hits = 1,000,000 prayers.

Joanne in Norcross, GA

Jessica G said...

Praying for you all as always....I even have co-workers asking "How's that baby and her Mommy?"

sara said...

wow that's complicated :)

praying for clean culture tests :)

Anonymous said...

i'll be praying ...Claudia (jacksonville florida)

Marsmile said...

Praying for the best!

Marissa :-)

Emily said...

Praying for clean cultures and lungs...

:)
Emily in CA

Carol Kossman said...

Oh, what wonderful news that she might soon be listed!

terri c said...

Go, Tricia and Gwyneth!!! Hope Gwyneth's findings clear pronto, and prayers continue for Tricia to be placed on the list ASAP.

Luciana said...

Thank you for keeping us all updated, praying for Tricia to be on the list very very soon I do believe on the power of prayers and thats what I´m doing every single day

nicksmom said...

It is truly amazing what God can do. Thank you for sharing all of this with us. You all are in my prayers, as always. I know this is alot of information to take in but you guys are looking for advice from the right place - our heavenly Father. I am praying for clean culture results, a place at the top of that list, and low risk, healthy lungs!

Robin

Anonymous said...

We are praying...

Chelle' said...

Praying that the Lord's will would be done! That Tricia will do well through tomorrow's port removal and that her PICC line will prove stable and infection free for the next year.

Also praying for donor lungs...

Blessings-

Anonymous said...

I am type A, type 2. Too bad lungs can't given by live donors like kidneys. I would be willing for screening if that were the case. Instead, I'll see this common thread between us as a reminder to pray more specifically for Tricia. I do know this - that God knows every blood type of every person on this planet and when they are due to be called home. If her donor is out there, he'll lay out the circumtances to bring them together. Thank you for sharing your story and your needs. It is an honor to get to come and be enncouraged by your faithful walk with Christ, and to pray for your beautiful girls.

Nicole

Anonymous said...

Not to sound flippant or morbid, but I really will tell my mom about Tricia just in case the occasion arose that I could be used in that way. You just never know.

Nicole from the comment above

Mary said...

Praying for God's hand to guide you all accordingly. And when Tricia gets her new set of lungs, God's hands will be guiding the surgeon's as well. Go God, GO! We are cheering you on all the way...

Mary

Marge Sexton said...

This is so exciting, I am praying for everything to fall in place. Trusting this all to the hand of God, we all know how he has taken care of Tricia and Gwyneth so far...he'll do it again!
All my Love and Prayers,
Marge

Anonymous said...

Wow, reading this I can't imagine how you go through each day dealing with all of this. It really is a testimony to God's grace and your willingness to trust him with your lives. Many blessings to the three of you.

Anonymous said...

Nate and Tricia,

Thank you for the insight into this transplant. There is alot of stuff to go through before the transplant actually takes place. Not only is it very educational, but it allows us as a family to know exactly how to pray for you guys! May you have a wonderful Valentine's Day together.

Love, The Hagers in Michigan

Patty said...

Praying for clean cultures!

Anonymous said...

I can't wait to hear the day she gets put on the transplant list! yay! sounds like it will be soon!

Momnnashville said...

Go, Tricia, GO!!!!! My prayers are with you guys. I am continually amazed at Gwyneth's progress and the faith of her parents. Thanks so much for letting us in our your journey.

Anonymous said...

Reading your blog has been quite educational. My interest in organ transplants has turned to fascination. The details that need to be considered before surgery really make me stop to appreciate how "fearfully & wonderfully made" we really are. Thanks for taking the time to educate. I really appreciate the details. Still praying.

Sara in MD

Dancing65Roses said...

Thank you. As I myself look into my future and see a lung transplant, I can't tell you how much reading about all this means to me. It makes me less afraid for my own transplant. I have many CF friends who are 1-6 years post (and know of a couple who are out longer), but I never want to ask them a million questions - and some of them don't remember much right before b/c of low o2 levels. Your blog has helped me so much.

Thank you again!
Carla

Anonymous said...

How do they decide who goes to the top of the transplant list?

Anonymous said...

Continuing to pray for all of you...

Anonymous said...

You 3 inspire me. I know this is not what you would have chosen for your lives together, but you have taken a huge block of stone in your path together and you have used it to touch people in enormous ways. I do not personally know you, but I follow you almost daily. You proclaim the power of love and works of God in your lives, and His glory is able to shine in places all over the world. May God give Tricia strength and continued progress, and may he continue to keep Gwyneth growing and in good health. As for you Nate, may God continue to allow you good rest and peace of heart and mind. I have a truly strong feeling you are going to need your rest now as one day in the future you are going to need it in order to keep up with your girls as they are literally running you from one place to the next. You just can't keep still your girls. They have places to go and people to see. May God continue to bless you. Thank you for allowing me to witness His constant miracles in your family's life together. It truly has taught me to lean on Him more for the small things and the big things in my life. My how our God works. It's amazing!!

Anonymous said...

I have been reading your blog and I am praying and will continue to pray for all 3 of you....

Kalani said...

I am a B and I ended up getting O lungs ( which they told me probably wouldn't happen)... I took a peak at my surgical notes in the chart on oh, one of the 10 nights I did not sleep AT ALL!
Loved your Valentine's videos.. I'm not sure if you have answered this before, but what kind of video camera do you use? My sony gives me all sorts of problems with my Mac.