(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
Wow. I'm glad you guys are at such a great hospital! There is only one really good hospital around here (where I had my kids) and I'm not sure that I would trust them for such a huge thing like this- or if they would even do it at all. So praise the Lord for good medical care!
ReplyDeleteThanks for explaining, Nate! I pray and hope for the best for Tricia. It certainly sounds like she is doing what she should be doing! Keep up the great work, Tricia!
ReplyDelete(Whoo hoo, I might be the first one to comment on this post! Finally!) :-)
Marissa
Thanks for explaining all of that! I enjoy being able to focus extra prayer on specific areas and all of your details along the way help that process. We will continue to lift your family up to God, as your story lifts us up daily.
ReplyDeleteHugs and love from Florida!
Nate, your are doing such a great job, informing and educating us. Thanks!!! We are continuing to pray for you and your girls.
ReplyDeleteContinuing to pray for you all! I can't even tell you how I came accross your blog but I am placing a link on ours. You all are an amazing family!!
ReplyDeleteBlessings in OK!
Michelle Taylor
Thank you again for all of the updates and stories...
ReplyDeleteStill praying for both beautiful ladies...And praising God for all of the good news...
Lots of Love ~ Dana and Wil Haupfear
THANKS FOR THE UPDATE
ReplyDeletePRAYING FOR YOU GUYS
L.I.N.Y.
I have been following your blof for awhile now and praying for you and your girls. When I saw the picture of your baeuty, just after birth at 24 weeks, my jaw dropped. You see, recently a young family member found herself unexpectedly and undesiredly pregnant and tried to have an abortion at 23 weeks (we later found out she was 25 1/2 weeks but the abortion clinic lied so they could "squeeze" her in). Just like your Gwyneth, God has a plan for that little boy's life and intervened in some amazing and miraculous ways and he is one month old and living with his overjoyed adopted parents.
ReplyDeleteI look at that picture of your beautiful daughter and I fully realize the tragedy that occurs countless times a day in this country as we lose precious little ones like her. She is obviously planned in exquisite detail by a loving and generous God and I am so glad the world is made so mucher richer by her life.
I will pray for her continued growth and development, as well as a successful transplant for her lovely and courageous Mama.
keep up the great work Tricia! show them docs what you can do! give it 110% girl!
ReplyDeleteSo pretty much, TRICIA ROCKS the transplant's socks off!! Keep up the hard work ladies and praise Our Lord for His goodness!! Continuing to pray...
ReplyDeleteI'm praying specifically for Tricia to stay strong physically, emotionally, and spiritually. I know that all three are important in order for her to remain on the transplant list and receive her lungs. Thanks for updating us on her progress and educating us. It makes it easier to know how to pray.
ReplyDeleteTricia...I think you are getting more exercise than most of us reading your blog! Keep up the GREAT work girl!
ReplyDeleteIf we could spare lungs like we can kidneys/liver parts you know there would be people lined up from here to the heavens to share theirs with tricia
ReplyDeleteTricia is the modern day Superwoman! She's putting the rest of us gals to shame. he,he. Way to go, Tricia. Show the world what you can do, through Christ! >:0) Praying...Our God is awesome.
ReplyDeleteYou go girl!!
ReplyDeleteNate and Tricia: Know I am praying fervently that Tricia is placed very soon on the transplant list. Thank you for listing these things, too. It gives more specifics for prayer. I appreciate your posts and have really enjoyed reading your "love story."
ReplyDeleteBlessings!
Shari
Tricia, you sound like super woman by Nate's account. You go girl. Still praying for you!
ReplyDeleteMary
Florida
Hi!
ReplyDeleteI have now been reading your Blog for, ohhhhhh, 5 days...and I still haven't read it all!...lol It IS addictive, in a very positive way! (like CHOCOLATE! hehe!) It is so addictive, that I showed my SIL on Sunday, and got so engrossed in showing her that I forgot my homebaked rolls in the oven....which needed their li'l tops chopped off to be edible....lol...never mind, all in a good cause.
I am praying for you all - Nate, Tricia and PRECIOUS Gwyneth Rose!
I take an added interest as I was a PT before reaching my highest calling!...;-)
Look forward to praising god every day for the goodness He continues to show to you all. We serve a wonderful God.
Oh yes, I have sent your Blog site onto more friends here in the UK, who will pass it round some more, and we will all keep praying!
Love and hugs from fellow believers the other side of "the pond".
Praying for you daily. You have a beautiful heart, Nate.
ReplyDeleteHeidi Reed and family
Wow, I didn't realize she was that active in the PT regimen! Continuing to pray for timing, peace, and patience. Thanks for continuing to share your story.
ReplyDeleteLori in VA
This is good information for me, Nate. Gives me a much clearer idea of the situation.
ReplyDeleteI'm still "catching up" on Your Story. I'm enjoying it... :)
Can I just say that I am super impressed by all that Tricia does in a day! That is more than plenty of people do (and they aren't in the hospital on a vent). You go girl!
ReplyDeleteI think Tricia does more than I do in a day.
ReplyDeletePraying for you!
ReplyDeleteSoooo, I was wondering what Tricia's prognosis will be after the transplant. Will she be running marathons or taking it easy? How does it affect the expected life span? Sorry, I don't know anything but CF . . . but learning. :)
ReplyDeleteAnd, you don't have to answer this if you don't want but, did you all plan to have children later, or had you planned to adopt, or maybe not have kids at all? Sorry if this was covered earlier in your blog. I'm still catching up.
Thanks for sharing your story!