Time Rushes On

Aw, summer!  Its been wonderful here of late!  I’ve been relishing working in my flower garden and enjoying the new pond and waterfall.  It is so therapeutic and relaxing! Its like a day at the spa, right in my own courtyard!

 

I’ve been remiss this summer in keeping up on my blog posts! I’m sorry I’ve not kept everyone up to date!

With regards to Kevin’s need for a donor kidney-nothing has changed there unfortunately.  He still needs a donor kidney!  The amazing thing is that in spite of such low kidney function (10%), the level of toxins in his blood has been at such levels that dialysis hasn’t been necessary.  His doctors are amazed! They assume the fact that he is a runner – must be in part, the reason why his body is tolerating the toxins, in spite of his low function. So keep running Kevin!!  

His need for a new kidney is still critical.  The statistics are quite clear – transplant patients who receive the kidney before the need for dialysis, fare better.  That’s simply the facts. 

And so I am continuing my efforts, utilizing the internet & social media, to help locate that angel who is willing and able to give Kevin the gift of life!  I still believe that person is out here, somewhere. You could help by simply posting this blog’s link on your own social media sites – ie: Facebook, Twitter, Google+, your own blog or website. The more people who read this, the more hope it will fall on the right eyes!  It has happened before I know it can happen again!  I won’t give up hope!

To start the living donor process for Kevin, simply fill out the Live Kidney Donor Referral form and fax it to the Penn Transplant Institute in Philadelphia. 

The Search Begins Again

 

It has been quite a tumultuous journey for Kevin and all who love & care for him during this process of finding a live kidney donor.

We’ve been taken to dizzying heights of hope and joy, followed by rapid plunges to the depths of despair.  We’re at one of those low points now, as the transplant planned from the recently approved donor, has been permanently cancelled.  I have no choice but to begin the search again for an angel who is willing and able to offer the gift of life to Kevin.

As long as there is hope that Kevin can be saved, I will continue my search for a live donor!  Wouldn’t you do the same for your loved one? 

If you’d like more information, please visit the Penn Transplant Institute website.  The fastest way to begin the live donor process is to fill out the Live Kidney Donor Referral form and then faxing to the Penn Transplant Institute. 

There are so many angels who have helped along the way, by simply reposting this blog link, by sharing on your websites and Facebook page, by tweeting about it, and by sharing with music on Blip.fm. Thank you all from the bottom of my heart!  I need to ask if you could do so again, as its more critical now than ever before, that Kevin receives a new kidney!  Help me keep the hope alive!    

UPDATE!!! Keeping Hope Alive

 

Since first learning that the donor had been approved for Kevin on May 20th, it has been an emotional roller coaster ride.

Initially on May 23, Kevin was told that the transplant would be on June 7th.  The next day, he was told it would be June 16th…, then on May 24th, he was told it would be on May 31st!

But on May 27th, he was informed that there one of his pre-surgical test results showed cause for concern and the transplant was cancelled.  He has an appointment on Friday June 3rd with a specialist to review these test results. It is my hope that the specialist will determine the irregularity is insignificant and that the transplant can be rescheduled quickly.

In the meantime, Kevin’s overall health declines and with these developments, it is more important than ever that he keeps a positive outlook!  We cannot lose hope! 

Myths of Being a Registered Donor

As many of you know, I’ve been working since February 28, 2011, to help my brother Kevin find a live kidney donor. He’s been on the transplant waiting list at Penn Transplant Institute for 3 years, to no avail.  There simply aren’t enough cadaver donors in this country to meet the need.

While an overwhelming majority of Americans know about the concept of being an organ donor in death, only 30% of American’s know how to register as an organ donor.  This makes me wonder if misconceptions are preventing people from registering.  Perhaps I can dispel some of those myths!

1. “They’ll remove my organs before I’m actually dead” No organs are removed from a donor until a variety of tests, performed over time, confirm that the patient is brain dead with no hope of recovery.

2. “The recipient will end up knowing who I am” Donor information is kept private! Only with the surviving family’s approval, would the donor name ever be released to the recipient.

3. “If I’m critically injured in an accident, they won’t fight to save me because I’m a registered organ donor” The doctors working to save any patient in a hospital emergency room, are completely separate from the transplant team.  In fact, the transplant team is unaware of incoming patients until such time as tests determine a patient to be brain dead and quite often, when the family informs the hospital that the patient is a registered organ donor. 

4.  “I don’t have to register as an organ donor, I’ve got it in my will”.  By the time any will is usually read, it will be too late to donate any of your organs or tissues.  That’s why its important not only to register with your state as an organ donor, but also to discuss it with your family so that they’ll know to honor your wishes at the time of your death.

5. “If I’m an organ donor in death, my body will be so disfigured my family won’t be able to have an open casket at my funeral”. Any surgery to remove organs is done respectfully, and does not preclude having an open casket.

6. “I’ve had many medical problems in my life, I’m sure my organs wouldn’t be suitable for donation”. Illness doesn’t necessarily exclude all organ or tissue donations.  Each patient is evaluated at the time of death to determine the viability of any donation.

7. “My religion doesn’t approve of organ donation” Most recognized religions today accept and commend organ donation as a personal choice and as an gift of charity and compassion.

Whether or not you choose to be a registered organ donor is a profoundly personal decision.  But know that in death, you could potentially save 8 people! 

If you haven’t already, won’t you please register so that even in death, you can give the gift of life?

Organ Donor Recognition!

Since 1994, the Federal Government-through the US Dept. of Health & Human Services, Department of Transplantation, has worked with national and local organizations, to recognize the amazing gift of life by live donors and donor families. Every other year they host the National Donor Recognition Ceremony and Workshop.  This year the event will be held July 15-17 in Washington DC.

The National Kidney Foundation has been an active co-host of this event since 1995.  The NKF hopes to empower live donors, donor families and transplant recipients, to become advocates for live donation and to increase designated organ donor registrations. 

This biennial event’s recognition ceremony will honor great heroes who have saved someone through live donations as well as pay tribute to those who in death, gave the gift of life!   

The workshops offers support and educational topics for donors, recipients, families & the medical professionals who care for them.  The workshops will also provide tools to help promote live & deceased donation on a local level.

Some of the topics covering Live Organ & Tissue Donation include:

• New Developments in Organ, Tissue, and Cord Blood Donation
• Life after Donation: a Workshop for Living Donors
• Living Donation, expectation and reality (Sharing Session)
• Power of One: Getting Involved and Making a Difference

All of the nation’s living donors, donor families and friends are welcome to attend the National Donor Recognition Ceremony and Workshop! Registration is free! The only expense attendees are responsible for is travel, meals & lodging.  Click here for the event pamphlet and registration forms.

I have been working since February 28, 2011, to help find my brother Kevin, a live kidney donor.  Kevin has been on the transplant waiting list for more than 3 years.  At this point in time with his health declining, his best chance for survival is to find a live kidney donor.  If you’re interested in helping Kevin, please read “The Evolution of Hope.” To see if you could be a match for Kevin, fill out the Live Kidney Donor Referral Form & fax it to Penn Transplant Institute. 

Donate Life!

2010 Study Results-Good News for Live Donors!

The Journal of the American Medical Association published a study last year, in which they examined the long term mortality of over 80,000 live kidney donors from 1994 through 2009. It is the first study of its kind-evaluating live kidney donors-post transplant, on a national level. The study found that 15 years post transplant, the death rate among the kidney donors was no higher than that of those who had not donated a kidney.  


"Whatever happens when people donate kidneys, on average, it doesn't affect the rest of their lives, and that has never been shown before in a study of this size and scope" said study author Dr. Dorry L. Segev, a transplant surgeon at the Johns Hopkins University School of Medicine.


While there are risks in the transplant surgery itself, as with any surgery, the risk of death for the donor is actually lower than other more common surgeries! Live kidney donors face a death rate of 3.1 per 10,000 surgeries, compared with 18 deaths per 10,000 gall bladder removal surgeries! Less risk combined with such good results in the long term, must be reassuring to any one contemplating being a live donor. 


The fact that there are so many people on the kidney transplant waiting list (more than 90,000 in the US) demonstrates that there are not enough cadaver (deceased) donor kidneys available to meet the need. Often, patients wait 3 to five years, their health declining as time progresses. This is why over 4000 people on the US Kidney Transplant Waiting list die each year, without ever receiving the transplant. For that reason, live kidney donation becomes critically important.

My brother Kevin has been on the transplant waiting list through Penn Transplant Institute, in Philadelphia, for 3 years. His condition is worsening every day. As I am not a live donor candidate, I'm using social media in hopes of finding a live kidney donor for him. At this stage, that is the best option to prolong his life.

As of this moment, Kevin is well enough to undergo a transplant. But as his health declines, so does his chances of being a transplant recipient. Time is of the essence!

If you're interested in becoming a living donor for Kevin, please complete the Live Kidney Donor Referral form and then fax it to Penn Transplant Institute to begin the evaluation process.  

Live Donation-the Gift of Life!

Since the first live kidney donation was performed in Boston in 1954, there have been many improvements in tissue matching, in the surgical procedure and in anti-rejection medications.

By 2010, 37% of all kidney transplants were from living donors!  According to research by the US Department of Health and Human Services Organ Procurement and Transpantation Network, 22% of live kidney donations were from non-related, directed donations.  Meaning there were 1,388 good Samaritans who directed their gift of life to a particular unrelated recipient.

I want to dedicate this blog to those heroes.  Some donate anonymously, some give their kidney to a virtual stranger. In my book they are all angels for their selfless gift of life!

Consider Lora - the "good Samaritan" who donated a kidney to a stranger, a 71 year olf grandmother named Dee, so that Dee could live to celebrate her 50th wedding anniversary.  So that Dee would be alive to witness the marriage of the first of her nine grandchildren.  The most common question Lora got pre-transplant was "why would anyone donate a kidney to a stranger?" Lora just thought of the Biblical story of the Good Samaritan who stopped to help a traveler in need after others passed him by.  Lora said "Good Samaritan donors do not know any particular recipient but decide to donate to a stranger because it is the right thing to do." 

Meet Diane, who's comment in a store about her son needing another kidney transplant, was overheard by a stranger-an employee of the store. This young man, a total stranger, told Diane he wanted to be tested to see if he was a match for her son.  The donor was adamant and said: "I want to do this. If everyone in this world would do this, our world would be a better place to live". The stranger WAS a match for Diane's son and on the day of surgery told Diane: "It gave me such joy to do this for your son." 

My online efforts on behalf of my brother Kevin, to help find him a live kidney donor, have made me aware of the great need for organ donors in the U.S.  Over 120,000 people are currently on the organ donor waiting list. More than 90,000 of those are waiting for a kidney.  Unfortunately, more than 4,000 die each year, without receiving the kidney they so desperately need.

To start the living donor process for Kevin, simply fill out the Live Kidney Donor Referral form and fax it to the Penn Transplant Institute in Philadelphia.

If you haven't already registered through your driver's license to be an organ donor, please do so through this link to the US Health & Human Services so that even in death, you can be a hero!