Tuesday, April 30, 2013

(Bump) Organ Donation Myth #1

(I'm writing this because I myself have heard this myth and at one point believed it could be the truth)

- Doctors, EMS etc. will not do as much to save my life in a medical emergency if they know I am an organ donor.

Truth - All medical professionals are sworn to keep the Hippocratic Oath which basically states that they will do everything within their power to maintain the life of the person they are serving.

It makes zero practical, medical and ethical sense to "allow" one person to die (in this way) so that others might possibly live. Organ donation is never a sure thing for the recipient, and every single medical professional I have talked with about this subject (either on a professional or casual level) has given me complete assurance that they could not imagine anyone ever giving teeth to this myth. When you are in a medical emergency, their complete focus is on saving your life.

In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Please, read more about Organ Donation Myths.

I'd hate to think that the only thing keeping somebody from becoming a donor is a lie.


(Bump) Organ Donation Myth #2

(This myth can actually go two ways)

Myth 2a - Even if I never tell anyone, as long as I am registered as an organ donor on my driver's license and the medical personal are aware of that fact, my organs will be used.

Myth 2b - Even if I am registered as a donor on my driver's license, my organs will not be used unless I tell my closest of kin of my wishes and they are able to follow through.

The truth and false to these two myths really all depends on what state (in the US) you live in. Up until recently, Myth 2b was true for every state. If your next of kin either could not be contacted or was unwilling or unable to confirm your intent to be a donor, the indication on your driver's license meant nothing, legally. The family ultimately had the final say.

But, recently, several states have passed laws similar to the one passed just a few months ago in NC that make Myth 2a true. The Heart Prevails Act of NC declares that, even if the next of kin either cannot be contacted or is unwilling to consent, the little heart symbol on your NC driver's license is legal consent to allow medical personnel to begin the process of organ recovery. (Tissue donation still must be consented to by family.)

These new laws/acts are incredibly beneficial, for several reasons:

1) They help to insure that the wishes of the deceased are carried out.

2) They help take the pressure off of the family to make the final decision.

3) The make the entire organ recovery and donation process easier, quicker and safer, insuring that recipients have a better chance of survival.

4) They increase the number of available organs.

It is still incredibly important, no matter what state you live in, to notify your family of your wishes, even if it is just to help them be prepared.

Take a few minutes to Click Here and discover how you can become an organ donor in your state of residence and how to help insure that your wishes are carried out upon your death.

Read more about Organ Donation Myths.

Thank you!


(Bump) Organ Donation Myth #3

Myth - A deceased donor and/or family will be charged a medical fee for the organ recovery/removal.

- There is NO cost to the donor and/or family for organ OR tissue donation.

In fact, the cost for organ recovery is charged to the organ/transplant recipient. The donor/family will be charged for any and all final efforts to save the donor's life, and sometimes those bills are misinterpreted as costs related to organ donation, but, again, the cost of organ donation is the responsibility to the recipient, NOT the donor.

As a side note: there are organizations set up that offer financial assistance to transplant patients/families who may not be able to pay for the cost of transplantation on their own. A good place to start is Transplants.org



Organ Donation Myth #1: Will the Doctors Save My Life?

Organ Donation Myth #2: Is My Driver's License Enough?

(Bump) Organ Donation Myth #4

Myth - An open casket funeral is impossible after organ donation.

Truth - Unless you plan on being naked at your funeral, organ donation does not effect an open casket funeral in any way.

In fact, throughout the entire organ recovery process, the deceased body is treated with the utmost respect and care, in large part to insure that an open casket funeral is possible. Even bone, skin and eye donations are completely undetectable under normal circumstances (again, if the body is clothed and eyes are closed).



Organ Donation Myth #1: Will the Doctors Save My Life?

Organ Donation Myth #2: Is My Driver's License Enough?

Organ Donation Myth #3: Will It Cost My Family and I Money to Donate?

In the ICU

Tricia arrived at Duke yesterday morning around 7am via ambulance.  For the past 5-6 days, her breathing has steadily become more difficult.  She has also had increasingly severe headaches and nausea.  I suspected she was experiencing high CO2 levels.  Shortly after arriving at the emergency room, she was placed on a BiPAP machine.  Within an hour, her headache was gone, and within 5 hours her CO2 level had dropped from above 100 to 80.  Normal CO2 levels are between 30-40.

Around 3pm Tricia was moved from the ER to the ICU.  She'll stay on the BiPAP for as long as needed.  If she continues to show signs of improvement, she could be moved out of the ICU to a step-down unit.  The doctors believe she may have a virus which has weakened her lungs to the point that she can't exhale properly to discharge the necessary amount of CO2.  She is being tested to determine if she does have a virus and has been placed on some antibiotics.

Landing in the ICU is never a good thing.  It can be very difficult for somebody in Tricia's condition to recover, and although the ICU is the "best" place to receive the treatment she needs, it is nearly impossible to relax and sleep.  We are praying that she'll be out of the ICU as soon as possible.

Thankfully, the transplant team is keeping her on the list, and they are hopeful she'll receive another call very soon.


Sunday, April 28, 2013


Nothing speaks encouragement like three girlfriends traveling eight hours round trip to spend less than an hour with a sick woman to pray, hold her puke bucket and run fingers through her hair until she falls asleep.


Several people have expressed their disappointment, sadness and even anger about yesterday's dry run, but please don't be sad or upset for us about yesterday. We honestly were at perfect peace about the dry run. We did not get overly excited, and we certainly didn't feel any sadness when we were told it wasn't going to happen. The staff we worked with were all very kind and took great care of Tricia while we waited, and we made a few new friends. It happened on a Saturday, so we had nothing on our schedule and the hospital wasn't busy so we didn't have to wait for anything Tricia needed. Our kids were back at home to celebrate a cousin's birthday, so we didn't miss any time with them. The weather was nice outside, so we drove with the windows down on the way home. Tricia got a good nap in afternoon and I got our place cleaned up a bit. Three of Tricia's best friends drove eight hours round trip just to spend a few minutes with Tricia last night and this morning. All in all, it was a good day.

Yesterday happened exactly as God planned it, and we're not disappointed about it at all. Whether new lungs come yesterday or tomorrow, even if they don't come at all, God is good all the time, and He knows the plans He has for Tricia.

Thank you for your prayers today and for the future.

Saturday, April 27, 2013

Dry Run #1

Nearly everybody waiting for a transplant experiences at least one dry run.  And, in our opinion, we'd rather have no lungs than bad lungs.  Today turned out to be a dry run, even though, for a few minutes, it looked like it was a go.  We received the word that the lungs were good around, but just a few minutes later got another call that the lungs were no good.  Being told the lungs good and then no good isn't the norm, but we're thankful for the team doing their due diligence to protect Tricia from anything less than suitable for her.  Unfortunately, we assume that means the lungs weren't good for anybody, but that doesn't mean other organs from the donor weren't used for other people waiting.  We'll continue to thank God for this donor and his/her willingness to give and to pray for his/her family.

The fact that we received a call this quickly is incredibly encouraging, and we're praying for another call very soon.  Honestly, we are neither disappointed nor frustrated.  God's timing is perfect, even when the results aren't want we want.


Transplant Call

We received a call this morning at 7am that a pair of lungs is available.  We are at the hospital now waiting for the final yes/no.  Very possible it could be a dry run.  Thank you for praying for the donor family.  I'll update as soon as we know more.


Tuesday, April 23, 2013

Back on the List!!!

Tricia has had several good weeks, including increased strength and an extra pound or two, and today we were informed that she is officially back on the transplant list.  Her allocation score is higher than it was back in the fall when she was listed, which means she is higher on the list, so we are praying that everything will fall into place before she has another setback.  She begins a new med tomorrow and needs to show no signs of an allergic reaction, so you're welcome to pray about that as well.

Thank you so much for your prayers that have helped so much to get Tricia back to where she needed to be to be relisted!  And thank you to the Duke team...even when we were both nearly ready to give up several weeks ago, they continued to tell Tricia to hang in there and give us hope that she could be relisted.


Tuesday, April 2, 2013

Five Years

It's been five years.  Five years that we will never take for granted.  Five years ago at this exact moment I was getting settled in for a long night, awaiting the word that Tricia's double lung transplant surgery had been successful.  Hundreds, maybe thousands of people, mostly strangers stayed awake with me, reading my blog updates every few hours, holding their collective breath, praying for Tricia's second first breath.

I know it's been frustrating for you who care so much for Tricia for the past several months as the blog has been quiet.  For reasons I won't share, we felt it best to use only Twitter and Facebook to update about Tricia's health, and we deeply appreciate your patience.

Tricia's health has very slowly continued to decline since arriving in Durham in mid-October.  She is down to 100 lbs, her breathing numbers are severely low, and she is very, very weak.  She has had several different kinds of setbacks which have kept her from being re-listed...signs that her body is shutting down.  Tricia has been working incredibly hard, participating in physical therapy as much as her body will allow.  This journey has been incredibly difficult and frustrating for her.

We believe that the end is coming soon.  Either she will be relisted because she become a "now or never" case, or the transplant team decides she cannot be re-transplanted and sends us home.  We are not ready to be told "no"...as I've explained before, very few people get this second chance to begin with, and we are thankful that Tricia was given this opportunity, for which we are thankful.  It is amazing that Tricia has survived this long, through the winter, and until the team sends us home, we have some hope.  But, as I said, all the signs are pointing to the fact that a decision will need to be made very soon.

Tricia is not ready to end this.  Although ultimately I believe we will both be able to accept God's will for this situation, Tricia doesn't want to leave her family, and I certainly don't want to continue this life without her.  We need your prayer and encouragement that the next few weeks will provide us with the clarity to see things as God sees them.  We are praying that Tricia will hit her weight and strength goals and that the setbacks will cease so that she can be listed and transplanted as soon as possible, and if not that God will give us peace.

Thank you so much for your support over the years and now.  I will update the blog again when I can.