When you're a life-long hospital patient like Tricia, especially with a disease like CF and facing things like double lung transplants, you get a lot of requests for "studies" and "trials". Everybody wants to use you for some kind of research related to CF, high-risk pregnancy, premature birth, pulmonary diseases, etc. Some of these studies/trials are very simple and don't involve anything more than signing a few pieces of paper, but most of these studies involve being poked and prodded, trying experimental drugs and treatments, and asked lots of personal questions, etc.
Since being placed on the list last Friday, Tricia has been asked to participate in 4 different studies. One of these studies involves examining her old lungs after they've been removed from her body via the transplant surgery.
Over the years, Tricia has been asked to sign the legal papers for hundreds of these studies/trials.
She has never said "no".
Tricia believes that her purpose in life is to give God glory by allowing Him to use her CF to be a blessing to others. She has participated in numerous studies that have been used to discover new techniques, meds, treatments, etc. for CF and other diseases.
And, Tricia is not alone. It is because of the willingness of others who have gone before her to participate in similar studies that Tricia is alive today. Even baby Gwyneth has already been signed up by her father for a few studies of her own.
Tricia also desires that her body be donated to science and research upon her death. Because of her disease (and other circumstances), Tricia's body won't be much good for organ donation...but, she can still make a difference by allowing researches to learn more about CF and other medical issues. She told me about this desire of hers a long time ago, and although it's not exactly what I think I would have decided for her, I have promised her that I will be sure that it happens.
I tell you this for two reasons:
1) If you are ever asked to participate in a medical study or clinical trial, I hope that you will at least consider the lasting effect that it could have on millions of other people in our world. These studies are not for everyone, but they do help everyone.
2) If I haven't yet convinced you, yet, to become an organ donor, I hope that this post will possibly help move you a little closer. Organ donation isn't for everyone, but it can help everyone.
I continue to be amazed at my wife and her willingness to help others, even as she is in the middle of an extremely difficult situation. Just today, she reminded me of her wishes. Every time she is asked to do a study or trial, she barely even gives the person time to explain what it is all about before she says, with a smile on her face, "Yes, I want to help other people."
Thanks.
Nate
67 comments:
I just wanted to thank you so much for your insight on Organ Donation. As a result of your experiences I have agreed to become a donor. I have always been reluctant, but this year when I renewed my license I agreed. Hopefully some day something of mine maybe of use to someone else.
God bless.
Wow, your wife is amazing!
Thank you for that, I too believe stongly that participating in medical studies is important. My daughter is in a study for children with leukemia and Down syndrome and although there are times when I fear she has relapsed, I know that God is in control and regardless of what the outcome, the results of this study will help many many children in the future. Thanks Nate.
Carey and Chelsea, www.cbranam.blogspot.com
I totally agree with you on signing up for clinical trials. My husband has a serious illness that has caused two "rare" side effect illnesses, one of which is considered terminal. He is the patient that the doctors, nurses, receptionists, and others in the office know by name because he is a rare case. He is often approached about trials and always says yes because you never know if by saying yes he may be helping himself in the future, and others. I used to think than I would never sign up to use drugs that have not been fda approved yet, but I definitly believe in it now. If he hadn't done the last clinical drug trial that he did, he wouldn't be feeling as great as he is now. He had always said he wanted to be an organ donor but now his health will prevent him from doing so. I, on the other hand, had not really decided on that until recently. I am now registered and I have made sure that my family knows my wishes as well. Thanks for being so open with all of us. It makes a difference.
The more I read, the more I see of what an amazing lady your wife is!
Wow.
I am an organ donor, and although I'm not sure what science would ever use my body for, I guess they can have it!
When I was in the hospital with Calypso we were asked to participate in 3 studies and did them all. it was a very gratifying experience.
It's wonderful that Gwyneth is getting breastmilk! After Calypso died I donated over 800oz to the local milkbank here in Indiana because I sure didn't need it. It really is the best thing for these little bitty babies.
I haven't commented recently but you guys are always in my thoughts and prayers!
I feel that I need to give back too. I've never been asked to participate in a study or anything. I do know that because I was diagnosed with the clotting disorder and told that my first degree blood relatives had a 50/50 chance of also having the deficiency, several of my relatives have been tested and have discovered that they have it also.
By the way, Duke is sponsoring a conference in March for thrombophilia/ patients and friends. If I could I would go because it is very hard to get knowledgeable information about clotting disorders. Well known and respected doctors will be there.
When I read that the conference was at Duke, it was a kind of "wow." It is too far to go to (I live in California) but I hope that they publish something or have some information available. I did for a minute or two try figure out if I should go...
anyway, Duke is good, and I'm glad that Trish and Gweneth are there. I think they are getting the best care, and I know that with Nathan looking out after them he'll make sure all goes smoothly.
But the prayers of family and friends and God's graciousness have worked miracles. (did I word that correctly? no matter, it is bed time for me.)
Your wife is an amazing, beautiful lady who I adore. She has taught me so much through her testimony. She never ceases to amaze me! I continue to pray for the girls.
I will share in toddler language what my son said at prayer time tonight. "Dee Jesush, pweeze take care-a of Twishie and Gwiniff. Eh-men." It amazes me how he remembers every single day.
Blessings!
Shari
Blessings!
Shari
Blessings,
Shari
Oh, P.S. I completely agree with studies and trials. I have been through two trials myself! Plus, organ donation is such a gift! My husband and I both have that in our papers.
As a parent of a micro preemie (23 weeker who is still in the NICU after 12 weeks), I can relate to all the studies the Doctors approach you with! I, too, feel that research is a way to better medicine and help others! My 23 weeker would not be alive today if not for past research and participation! I admire your family, strength, courage, and commitment to Christ!
Wonderful post! I advocate for organ donation as much as I can. I believe it is the ultimate gift we give when we are done with the bodies we were given.
Tricia never ceases to amaze me.
I have to say, I am not a bit surprised. :)
I can't decide if this is a morbid question or not, so feel free to delete it if you wish, but please know I mean no dis-respect.
As Tricia is donating her body (way to go Tricia!) what will you do as a funeral/burial?
My husband is a donor. I'm not, at the moment, as it is something I wressle with... to me it feels unfair that, say my kidney is compatible with a two year old and a 87 year old, but the 87 year old if first on the list... I'm sure you can see what my point is. And while I know that all life is sacred, in my heart, I know I would prefer the baby to have it.
You are a beautiful family. I pray for you every day. And I think Gwenyth looks just like you.
Cheers,
Jenny
(Australia)
Actually a baby can only receive a kidney from another baby, due to the size of kidney and body it being transplanted into. So, your kidney would not be suitable for a baby anyway, so might as well let the 80 yr old receive it. The way I look at it, if you are a donor, at least someone lives, if you are not a donor, you cannot help either one live. BLessings to all.
Also wanted to add that I think Tricia not only such an inspiration for those with CF, but for those of us that are healthy. When I am having a bad day and don't want to get out of bed and even go outside, I just think of Tricia and how she cannot go outside (at least i assume she cant?) and it pushes me to appreciate what I can do each day. So thank you Tricia! You are beautiful inside and out! I hope your new lungs come soon!
I loved your explanation Nate about your choices and how you both came about making the decision to have a baby while waiting for the new lung transplant. I fully support anyone for making their own decisions, but I was wondering if Tricia's parents felt differently at the time since it was their baby girl's life in jeopardy.
I was also wondering if Tricia is able to speak or eat with the trach and vent and also if she can shower with it too? And,if that is too personal, I understand if you dont wish to answer but I was just curious. Hope baby Gwyneth is doing well and gaining a lot of weight! She looks to have big beautiful brown eyes like her momma!
Wow that's awesome! I admire your family's strength in the Lord and your ambition to touch the lives of others. We are praying for you and your girls.
Thank you for sharing your story and your thoughts. I've spent a lot of time thinking about believing in a loving God when life is hard. Thank you for sharing your and Tricia's insights and thus showing me that life is not about me but about glorifying God in whatever circumstance.
Every time I read your blog a picture of the three of you and your struggles pops into my mind, but when I keep looking I see that God is all around you, holding on to you tightly. Hope that'll encourage you when there's a moment where all looks glum.
prayers from Holland,
could not agree with you more, Nate...
thats great that she always says yes. I too think that participating in studies like that is a good thing. When our son died (just 4 days old) we decided that since he was so very very special, the doctors could use his organs to hopefully learn something new.
Tricia, you are such a beautiful person! God Bless you with a new set of lungs soon!
Thank you Nate for spreading the word about Organ donation! I would just like to add that becoming an organ AND tissue donor can save up to 8 lives through organ donation and enhance the lives of up to 50 others through tissue donation (Ex. bone, skin, corneas, and heart valves). When I was training with Carolina Donor Services to volunteer for them, I heard a story about a man who had been in a car accident and been burned very badly. Had it not been for the skin and bone grafts from donors, he wouldn't be alive today. The most important thing to do is talk to your family about your wishes and have a signed donor card. Just having it on your driver's license isn't enough anymore in a lot of states.
Tricia, I am enjoying your updates on the CF site. You have such a positive attitude and are always so cheery!!!!! Nate, thanks for keeping us all updated on the progress of your beautiful family. I continue to pray for you all everyday.
Sharing your heart felt story continues to teach me. There is something about vulnerable sharing that goes strait to the heart more than any thing I know. I instantly saw how selfish I can be in telling of Tricia's willingness. Thanks for telling the story! The Lord is using you.
As someone with CF I'd just like to say a huge thank you to Tricia for being prepared to help us all by being involved with studies. I'm often asked to participate in research at my clinic too and I always agree as I know that CF is hard enough to treat as it is, and as one of only 7000 people in the UK with the disease, they need as much help as they can get! One day may be the help Tricia has provided will benefit me and my brother, so as someone in that position I just want to say a massive personal THANK YOU to her xxxx
We agree! Both of our boys have participated in studies during their hospitalizations and I during my pregnancy with David. We think it is only one of the many benefits of going to a teaching/research hospital like Duke. Thank you for this post!
We continue to pray for you all daily.
Kim and Matt McGee
That's amazing! Tricia is blessing my life in more ways than I could have imagined. Thank you for blogging this journey.
I know this is not at all related to this post, but I was hoping to issue a prayer request to you. A good friend of mine, and one of my boyfriend's best friends, is having minor brain surgery at Duke today. The doctor is removing a non-cancerous mass that developed between his skull and brain and was causing this 21-year-old to have really severe seizures. My boyfriend went to see him last night, and seems to be coping well so far. But if you'll just be praying for him today, that would be great. His name is David; we all call him DT. Thanks, Nate.
Meghann
wow. You managed to bring a new thought my way yet again. Who knew I was so naive'???!!! I've never looked at clinical study that way before. It always scared me to think that it might worsen whatever condition I might have (I'm a healthy patient). Thank you for provoking my thoughts and showing me another viewpoint.
As my Pastor often tells us...
This is just our "shell" and we're not gonna need it in Heaven. God is going to give us a brand new body. So thank you for opening our eyes to Organ Donation. I've always said I wanted to do it, now I'm seriously wanting to sign up. I'll be checking into how to go about it.....
Mary
Florida
Thanks for all of the things to think about. I've always been interested in organ donation, but having that "I've got time" attitude I have never really seen the urgency signing my license, dumb I know. I was talking to my husband about it on Sunday and made it known to him my desires to donate my organs. Unfortunately there are people out there who are under the assumption that doctors who know you are a donor are going to help push you into the grave so to speak, and not do as much to keep you alive...my husband is included in that group. I have the attitude that God is going to give me a new body and I won't have any use for the old one! I know others that just do not want the body disturbed upon death. Hopefully in reading your blog more people will come to the realization that organ donation is a gift. It looks like a lot of awareness has been brought to the subject already. Thanks for always giving us something to think about!
Nate, when i renewed my license last weekend, I became an organ donor. I didn't even hesitate, I always thought, there's no way I could do that. But, I read your story, and now I think, there's no way I could not do that. Thank you.
I have always been adamant that not only are my organs to be donated but also that my body be donated to science. If there's even the slightest chance that studying my brain can help find a cure for bipolar disease, I'm all for it.
Every time you make a post I am more amazed at how loving and giving you family is. The three of you are true gifts. Praying and thinking of you always.
Irene
You and your family are always in my prayers. Thanks for letting God shine through your life's into others. I think it's brave of Tricia to want to donate her body to science. My FIL asked us to do this for him and we did. Have a blessed day.
Way to go! Thanks for making such a controversial topic the forefront in people's minds - this is something that more people need to consider!!! I was truly touched by the number of people who's hearts were changed thanks to yall's testimony.
Please remind your readers that the decision to be an organ donor needs to be known through your family! You can add it to your license and keep a singed card in your wallet, but if your family does not know then those may not be enough. Alo, by discussing your wishes with spouse/parents, you can become a living witness to encourage others!
Christ calls us to die to ourselves, as He Himself died so that others may live. How else could we emulate Him better, than by using our lives AND our deaths for the good of others?
God Bless you both, you are a beautful inspiration. Your baby girl is blessed to have such faith-filled and loving parents.
I've been participating in vaccine clinical trials and feel like it's such an easy way to give back.
Not only is Duke one of the best transplant facilities in the nation, but they’re also top notch when it comes to researching things that will extend the longevity of lung transplant recipient outcomes. We (lung transplant patients) are very different then the other organ recipients. Our survival rates are not as good because of the fact that we inhale foreign bodies into our lungs when we breathe and there is nothing that can be done about that. This can lead to infection and rejection unlike the all other organs which are nicely protected inside of the body. Duke has already found (through this type of research) that acid reflux can lead to rejection - hence the infamous "stomach wrap" that most transplant patients now have to get. I am with you Tricia – I’ve never turned down a study. And - for those of you without an illness, research hospitals conducting these studies many times look for healthy people as control group so there are ways to get involved if you’re interested.
Jana
Tx-5/11/04
I had always intended to be an organ donor, but reading your blog made me take action and go "sign up" as well as to let me family specifically know of my wishes. Thank you and God bless!
wow. tricia astounds and amazes me more each time you share her thoughts. thank you for sharing this nate--i would never have given serious thoughts to these things otherwise!
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Nate,
Thanks so much for your comments regarding clinical trials ~ I'm a graduate student just about to get my Ph.D. While I'm pretty familiar with them being in an academic environment, it is a scary or unknown idea for many people. It is SO encouraging to hear your perspective on it, and your desire to have more people participate in them.
The cool thing is that if you are a Christian and you participate in a clinical trial (especially in the midst of a severe or trying illness) you can be such a HUGE witness. Many scientists and clinicians don't want to even acknowledge the possibility that God exists or is intimately involved in our lives, but at the same time they are human and wrestle with the same thoughts and fears that we do. I've heard so many people ask recently - what is it all about - what is the meaning of life - why are we here?
You guys, by being faithful to share your story and your witness are touching more lives than you realize, especially right outside your hospital door - it is (or at least can be) a very big opportunity.
Anyway, I wanted to start out by saying that being a Christian and being in clinical trials is useful in many more ways than just scientific benefit. It will encourage the Christians involved in healthcare, and will open up doors of opportunity with those who are not. Again, it's not for everyone, and the risks and benefits must be weighed, but thanks for spreading the word.
Hi Nathan-
What an awesome testimony Tricia offers to others of how to live life to the fullest using the gifts and abilities God gives us - even beyond this physical life!
In thinking and praying about Tricia's donor and the gift organ donation offers in general, a couple questions came to mind: Do you know if you and Tricia will be allowed to communicate or contact the donor's family in some way if that is your desire? Are they allowed to contact you?
Also, do you know if you can specify who your organs are donated to if you know someone who is in need of a transplant and may be a good match? For example, if someone thought they might be a match for donating their lungs to Tricia in the event of their death, could they make their wishes known to their family members/lawyer/doctor indicating their desire that their lungs go to her if it is a match?
(I apologize if you've answered them in a previous post, I hadn't recalled seeing it addressed)
Continued prayers,
Andrea
AMEN, it seems like the more you give, the more that is given to you and the more you have to give again. It becomes a givefest. The good part is that you can give of what you have. What an encouraging post. and What a way to start the morning.
Thanks Nathan!
Prayers from KY
Christy
If only half of the number of people who read this blog were as willing as Tricia to help others...wow, can you even IMAGINE???
I've been signed up as a donor since I can remember, and I would willingly participate in studies/trials if I were asked. Thanks for reminding us why it's important!
Your wife is such an inspiration to me as I'm sure she is to everyone else reading this blog. Kind of funny that I have to renew my liscense in 3 weeks and because of your wife and your blog I have decided to become an organ donor. I have always been a little funny about all that but since following her story and reading about her strength I feel it is the least I can do. Thank you for being transparent to the world.....you both really are making a huge difference! I can see God's light shining through you both everytiime I read your blog. Thanks! Meredith/Orlando FL
God Bless You Tricia!
Wow! Every day I find out more about Tricia and how selfless she lives her life.
What an inspiration to the rest of us.
this is why we have all grown to love, admire, pray and respect your precious wife and family.....
Dear Nate,Tricia and Baby Gwyneth! I think as humans, organ/tissue/blood donations are the ultimate in unshelfish acts. I recently was part of a campaign on organ donations and sold t-shirts which read, Don't Take Your Organs To Heaven..Heaven Knows We Need Them Here! How true! You all continue to inspire. Please also remember to pray for those families who have lost their loved ones but who unselfishly donated their organs, so others may have a chance at life.
Ontario,
Canada
How wonderful, simply wonderful!
the more i hear about your wife the more i fall in love with her. what a blessing she is to me. i can't imagine being in her circumstances and constantly thinking about others like she does. you and your girls are an amazing testament to who our Father is and how is love transforms. continuing to pray for all of you, thank you for continuing to let strangers be a part of your life story.
Being a biomedical researcher (of infectious diseases) I'm happy to hear Tricia (and Gwyneth) are so willing to participate in these studies! It makes my work that much more interesting. Thanks again Tricia & baby Gwyneth!!
Tricia is a very special lady. I wish I could have the privilege of know her personally. She is truly amazing! Praying for all of you today. Blessings.
Barb
Hi Nate,
I wanted to thank you for sharing your story. I've been reading for the past few days since I've been linked to your blog and your story has shown me that once again God performs miracles. He has performed a miracle in my family this past year as well and never before have I felt such a strong presense from our Lord.
So the past 2 days as I check your blog I noticed that you've been getting nasty comments and haven't been updating so much anymore. This saddens me. Even though there are people who can be so ignorant, there are twice as many people who you are touching with your story and you are sharing the word and miracle of God. Please continue to do so. There are so many people (people on my board even) who are reading your story and are praying for you guys, and our heart warms when we see such good updates.
God bless you and your family. I will continue to pray for them.
Carrie
It's all been said a thousand times and it is true... your wife is an inspiration to us all.
As if you havent changed my life enough... I'm going to remember to talk to my husband about organ donation tonight. Right now neither one of us are donors, and I dont really know why. Thanks for the extra reminder!
Today is Tuesday- pictures of Gwyneth today?
Tricia you are an inspiration. I too am leaving my body to science in hopes to find a cure for fibromyalgia. My dad wanted so to be an organ donor. He too had lung problems and knew they would be the reason when died. He passed on the 9th of this month. We figured he could not donate his organs since he died on the way to the hospital BUT Praise God he was able to help four people with the donation of his eyes. He also was able to give some of his tissues. God is good and this helps us find comfort in our grieving time.
I live in NENC near OBX. I read the post that Tricia was listed for transplant just before going on some errands on that rainy afternoon. I always like to kiss my kids/DH goodbye in case it's the last time I see them. As I did that this time I had the thought, "My lungs could go to Tricia should I die in a car crash." I remembered you said they couldn't be out of the body more than 4 hours (I think) and I live close enough. I mentioned this thought to my DH and he was quick to point out that I have asthma and my lungs are no good. Woops! I still feel good knowing that many parts of my body will be used when I die. Fortunately I'm still here posting this and still following your story and praying for your girls. My 5 yr old DD is, too.
there was a first person for all medical procedures...c-section, open heart surgery, transplant of an organ, laproscopic surgery, knee replacement, hip replacement... there's got to be someone that is willing to be the first.
Thank you Tricia to be willing to help so many others, not just with CF, but other life diseases that will learn from all the study/lab time. YOU ROCK!
And you have a very patience husband. You lucky, lucky lady! I'm sure there are many wives reading your life unfold that would LOVE to have their husband so committed to them. It is beautiful to watch Nate take care of both of you day in and day out. 24/7. I'm sure he is not perfect, no man waling the earth today is. But he shows his love to you daily, and there are many ladies that would give anything to know that their husband loved them. and men, that doesn't mean going to work 80 hours a week.
Ya done good girl!
still praying in SC
Yes! This is exactly what I have been feeling recently. I just joined a spina bifida study and struggled to explain that to my parents. It was an urge I couldn't describe. Thank you for putting words to my feelings.
Nate,
As a parent of a double lung transplantee, I can not thank you enough for getting those words out on your blog to the world. Organ donation saves lives - period!
As for the trials, etc. Yup, been there and continue to do that. Even her dad & I have contributed blood for testing, etc. Just yesterday T was referring to how happy she was that she did participate in a blood test for research at a national conference several years ago, not to mention the guinea pig she has been as well as repeated blood draws for other research and information. My T is also all for donating whatever they can use after she passes.
Tricia is definitely a trooper & a blessing to the world.
Blessings,
Karen
I feel the same way as Tricia, as I am going through all this health stuff the past few years my CF docs have told me that 'I am writing the book', although it's not fun to be among the first to be going through all this stuff I am grateful that the docs will be able to help CF patients in the future better because of everything I have put them through....did that make sense? Hope it did. Thanks for participating in studies Tricia it helps move medicine forward.
Wow, Tricia is truly an amazing woman! My grandparents donated their brains for Alzheimer's research upon their deaths. My grandmother lived with the disease for years & early on decided that she wanted her misfortune to benefit others. I'm more squeamish about doing it myself but I think that if I (God forbid) got something like cancer or whatever I might consider it for that specific cause.
Praying as always,
Alane
Tricia really is amazing and an inspiration to many...this story just further proves that fact.
Hey Guys,
Thank you for talking about studies! Our family are strong believers in these studies. You Tricia are hope for others in years to come!!!
When my son had cancer we did almost every study there was. I had hope a cure for childhood cancer would some day be real due to the help of these studies. I also do studies with my bleeding disorder. Would it not be awesome for a cure, or new drug to be found due to these studies:)
Tricia, you are brave and most of all compassionate!!!!
They are both wonderful traits to have. Nate, you always talk about Tricia being brave, you are too!!!!!Don't ever forget!!!
What an awesome family!!!!!!!!
We continue to pray for you all and the decisions you make daily:)
Love, beth from hh.
while pregnant with my twins, i was part of a research ultrasound study at the U of washington. that study turned into a non-invasive way to test for downs. when the twins were preemies, they were part of several studies. i'm with ya, when we're already in the situation why not help others who will follow. kudos.
I believe Tricia is correct about participating in studies being a way is using her.
I was in a study that helped determine how useful a medication was for bipolar disorder, soon after I was diagnosed. It made the difficult time of learning I had a nasty illness seem better, because there was some value.
I too will be donating my body, especially my brain, at death. As a healthcare professional I already know from personal experience how important this is, and this is furthered by if one person is helped by whatever is wrong in my head then that sort of negates some of the things I can't do while I'm here.
Good post. You should repeat this one!
Thanks for drawing my attention to this. I've been part of many studies growing up because my parents O.K'd it. As I got older and could decide for myself legally I've said no, because I felt I'd contributed enough to research and it was somebody else's turn. Now that I'm in my mid 20s and realizing that there just isn't the research for people in my age group with my disability I'm reconsidering it. Thanks for making me see other points that I wasn't seeing.
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