Friday, November 28, 2008

Cousin Brenda's visit

As most of you already know, my cousin Brenda has been here all week to finish her testing to be my donor. Brenda lives just outside Denver; she has been with us since Friday & leaves today around 5pm.
We had a GREAT week and loved having Brenda with us. It was especially nice to have her here to share Thanksgiving with us. I really loved being able to get to know her better. Even if things don't work out for her to be my donor, this has been such a great experience and I have loved having her here with us.
My grandparents instilled a very strong "family first" value in all of their children. I know they are with us, and they would be so proud that Brenda is willing to give me this wonderful gift.

Things went well at Mayo Clinic. There were several key things they were looking for: blood type, cross-match, antigens, and MRI results. Her blood type we already knew was O+. To find out if there is a cross-match, they mixed her blood & mine together in the lab to see if they would be compatible, or reject each other. We had a negative cross-match, which means our blood was compatible (which is good). There are 6 antigens they look at- they are genetic markers, we get 3 from each parent for a total of 6. They can now take someone to be a donor even if they have zero mathing antigens, because the rejection medications have improved so much. But of course, the more antigens that match the better. We matched 3 out of 6, which is great. The MRI looks at the size of the artery going into the donor's kidney, and it also looks to see if there is one artery or two going into the kdiney. Narrow arteries could cause an increased risk for blood clots for the recipient (me). And most people have one artery going into each kidney- some folks have two, and that makes the kidney not suitable to be donated. Everything on my cousin's MRI looked great.

Her file goes to the comittee on Tuesday. We should be getting a phone call on Wednesday, so keep us in your prayers.

If Brenda is a match, Mayo has told us we can have the surgery as early as mid-December. But we have decided to wait till early January. That seems best for everyone.


I am nervous. I feel like we are so close. Spending so much time around all our friends & family who have babies has only deepened our longing to have a family of our own. We love spending this time with everyone, but when everyone goes home & the house it quiet again, the saddness settles in. But we have to just keep moving forward & hoping. If I have the surgery soon, maybe nexy holiday season we will be able to start trying again.

I hope everyone has a happy holiday!!

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Friday, November 14, 2008

Benefit Flyer!

I am so proud of myself. I have never really used MS Publisher before, and look what I made!

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I also made a simpler, half-page flyer for us to hand out to folks we run into.

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Thursday, November 13, 2008

BECOME AN ORGAN DONOR!!!

I wanted to share this article that was recently posted on UNOS' website (United Network for Organ Sharing.


Release Date:
10/08/2008

U.S. Transplant Waiting List Passes 100,000

As of Oct. 6, 2008, more than 100,000 people were registered awaiting an organ transplant from a deceased donor at U.S. transplant centers. This is the first time that threshold has been exceeded.

The kidney is the organ most commonly needed and most commonly transplanted. More than 400,000 people in the United States are being treated for end-stage kidney failure, and of those more than 76,000 are listed for a deceased donor kidney transplant. The kidney waiting list has increased by 42 percent since January 2004, while the liver list has decreased by four percent and the heart list has decreased by 23 percent over the same time period.

This occurs at a time when the overall number of transplants has increased more than 11 percent since 2003, and reported deaths on the transplant wait list have decreased each year since 2004. Yet this milestone serves as a reminder to us all of the growing need, and of the opportunity for society to help meet the need through donation.

Many efforts continue to increase organ donation and recover as many usable organs as possible from these donors. These include HRSA-sponsored collaboratives to identify and share best practices, ongoing awareness campaigns such as those conducted by Donate Life America, and numerous professional education and community-based awareness initiatives.

NOTE: At any given moment, not all patients who are listed are actively awaiting a transplant. Those who are in inactive status have been evaluated and accepted by a transplant center. They are not actively eligible for an organ offer due to their current health status, incomplete insurance/financial arrangements or other reasons. These individuals could be reactivated by their transplant center at any time without losing priority for an organ offer. Both active and inactive candidates are reflected in statistics of those who die awaiting transplantation (nearly 6,700 in 2007).

http://www.unos.org/news/newsDetail.asp?id=1165


As of 12:13pm EST today, 100,535 people in the U.S. are awaiting an organ transplant....
It is SO EASY to become an organ donor. Visit your local DMV office, and they can get your signed up.

THE BASIC FACTS
• On average eighteen people die everyday in the U.S. while awaiting a lifesaving organ transplant."
• The total number of patients waiting for an organ transplant today numbers more than 100,000. More than one-third of them will die before a donor can be found.
• The waiting list for organ transplants is growing at the rate of 1,000 per month. Another name is added to the waiting list every 13 minutes.
• A total of 28,352 organ transplants were performed in the United States during 2007.
• Yet in 2007, there were only 8,087 people who donated one or more organs upon death. There were another 6,306 living organ donors.
• In 2007, 6,411 Americans - one every 90 minutes - died while waiting for a transplant.
• The refusal rate among families of potential donors nationwide is around 50 percent. However, a recent Gallup poll found 93% of respondents willing to donate a deceased family member's organs if he or she had expressed this wish prior to death. It is very important to sighn up on the Daonate Life California Regisrty. Either through the DMV when you apply for or renew you driver license.
• Transplantation is no longer considered experimental. It is a desired treatment for thousands with end-stage organ disease. Each year, approximately 900,000 Americans receive tissue transplants and mor than 28,000 receive organ transplants.
• In recent years, medical breakthroughs have greatly improved the success rate for transplantation... it now generally runs in excess of 80% for transplants overall.
• Currently, only about 8,000 of the approximately 15,000 medically suitable potential donors actually donate each year. Only about one third of the donation potential is being realized.
• Under ideal conditions, one donor can supply as many as 8 organs (heart, 2 lungs, liver, pancreas, 2 kidneys, and intestine). At today's average recovery rate, the current pool of potential donors could meet the needs of up to 50,000 people per year.

Also, to dispel some myths and misconceptions:
• Becoming a donor will not affect the quality of your medical care. Organ recovery takes place only after all efforts to save your life have been exhausted, and 2 doctors have declared you legally brain dead. The donor family pays none of the costs associated with donation. If you are a donor, you can have an open casket funeral.
• Transplants are accessible and available to everyone. Celebrity status and wealth do not enter into the equation. Organs are allocated according to medical criteria (urgency of medical need, blood/tissue type, height and weight).
• All major religions support or permit donation and consider it a gift, an act of charity.

Tuesday, November 11, 2008

The Twins are here!

My bestie Lisa had her twins on Friday! Identical boys. :) Born 11/7/08 @ 10:25 & 10:26am by c-section. Preston Ryan was 5lbs 5oz 18", and Hunter Paul was 6lbs 10oz 19". Big boys for twins!!
Mommy & babies are all home now & doing great! I am going to visit them again today with my other bestie Carissa and her son Trey Donovan, who is 9 months old. Yay!

Preston Ryan
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Hunter Paul
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Auntie Erin & Hunter
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Auntie Erin & Preston
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Uncle Rick with the future Florida quarterback!
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Not sure who this is.....
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Thursday, November 6, 2008

Exciting news

Mayo called my cousin Brenda today- they have scheduled her to finish her testing here in Jacksonville! She will be there the week of Thanksgiving- how fun that we get to have her here for the holiday. :)
She has testing on Nov 24, 25, 26, & 28. A busy week! But we are very excited, and looking forward to seeing part of the West Coast Gillooly clan.

Everyone, please pray for my cousin! Pray for a safe trip, and many blessings on her for being willing to give me such an amazing gift.

We're getting closer, but not there yet. So keep those prayers coming!

Wednesday, November 5, 2008

Wow....

I think this about sums it up....

Scary. Reeeally scary. And unfortunately, not an uncommon thought process...

Monday, November 3, 2008

Benefit #1

Plans are in the works for the first of hopefully several benefit events for my medical expenses. My best friend Carissa- her sister-in-law is a wedding/ event planner & she has offered to put this evening together for me! She has created a blog for the event:

http://www.supportorgandonation.blogspot.com/

We are having a dinner, silent auction, cabaret performance from local professional theatre folks, and dancing w/ a DJ. Should be a fun night!

We are also going to talk about organ donation. We will present some facts & answers some FAQ's, and provide info & resources to get folks registered to be an organ donor.

Right now we are working on drumming up donations for the silent auction. So far we have some really great items!
Stay tuned for more details.

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Rick & Erin at the Biltmore House, Christmas '09