New Challenges, New Hope

I am sorry its been so long since I have written an update.  Things have been rather crazy!  There has been a new development in Kevin's kidney saga.  They found a new kidney tumor and tomorrow he will have - hopefully - a partial nephrectomy and not a full one.  

It is my intention to resume the search for a live donor after the surgery!  His GFR is now down to 7 and he will have to begin dialysis immediately after surgery. 

I feel blessed to be with Kevin now and will be for the next ten days.

Rest in peace, Chloe

As if Kevin's kidney failure and pending surgery weren't enough, they learned last week that their beloved dog Chloe, a 6 year old Golden Retriever, was herself in kidney failure!  It was such a shock.  It just didn't seem possible.  Unfortunately, Chloe died this morning.  There are heavy hearts here today. 

If you are a person of faith, please keep Kevin in your thoughts and prayers.  He will need you all now more than ever, to help spread the word, to increase awareness of his plight and to ultimately find a live donor.    

Have a Heart

February is probably best known as the month to celebrate love.

What better time to think of giving the ultimate gift of love – the gift of life!

Have you registered yet to be an organ donor? If only half of all people were registered donors, there wouldn’t be a need for organ waiting lists. Registering couldn’t be any easier.  Just click here and then select “Register Now”.

My brother Kevin has been on the waiting list for a kidney for more than 3 years. As his health declines and with no cadaver kidney available, Kevin’s best hope is to find a live kidney donor. For more information about becoming a live kidney donor, please visit the Penn Transplant Institute’s website.  To begin the process of becoming a donor for Kevin, simply fill out and fax the Living Donor Referral Form.  

If you can’t be a live donor, don’t worry – there are things you can do to help!  Number one – help spread the word by sharing the link to this blog on your own website, blog & social media outlets. 

You can also support the cause by purchasing Gift of Life Kidney donation merchandise! All profit goes directly the live donation effort.

Some people have gotten very creative in finding ways to help! The Sweet Life Bakery in Vineland New Jersey has created a special cupcake for Kidney for Kevin! 
















A delicious Strawberry Rosewater Buttercream delight that looks good enough to eat! If you’re in the Vineland area, stop in at Sweet Life Bakery and ask for a Kidney for Kevin cupcake!

Last fall, several students from my sister-in-law Debbie’s class, joined Kevin in the 2011 Kidney Walk at the Philadelphia Zoo.  Putting their feet behind the cause, they helped raise more than $1,000 for the Kidney Foundation! 



Using another organ – one’s brain – I’m sure you can find many creative ways to help make a difference for Kevin and for all who wait!

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.  

April-National Donate Life Month

                   
April is National Donate Life month! If you haven’t already done so, please take a moment to register as an organ donor via the US Health & Human Services department!  Once there, just enter your state in the upper right hand corner to register!  Then share the link to this blog with your network of friends!

There are so many people who are waiting for a life-saving donation, the data is almost overwhelming. Each day, 18 people die, still waiting for the Gift of Life! Another person is added to an organ transplant waiting list every eleven minutes! Each registered organ donor could potentially save 8 people’s lives!  Given the number of deaths each day among those waiting for an organ, it is clear that there is a shortage of cadaver donors. That’s why living donations are so important.

My brother Kevin is one of those waiting.  He’s been on the transplant waiting list for 3 years.  His kidney function is abysmal – just 10%.  His greatest hope of living out a normal life span is to receive a living kidney donor transplant.

There are so many angels on the Internet So many to thank for their help in getting the message out about Kevin’s plight!  Literally hundreds and hundreds have blipped, tweeted, shared on Facebook & even added to their personal websites and blogs!  Too many to list here, have done so much to increase awareness of Kevin’s plight & for all those who wait!

If you’re interested in becoming a living kidney donor for Kevin, please fill out the Live Kidney Referral Form and fax it in to the Penn Transplant Institute in Philadelphia, Pennsylvania.

I know that a donor will be found. Maybe its you? Maybe it will be whomever you forward this blog to. 
And finally, be sure to register as an organ donor-The ultimate gift of life! 
        

You can make a difference!

Giving the Ultimate Gift As a Living Donor

The first thing you can do if you’re reading this blog, is please share its link across all of your social media outlets!  The more who read it, the more hope that a donor will be found for my brother, Kevin. He’s been on a transplant waiting list for three years.  The best chance of living a normal life for him is to find a living donor.  His kidney function is only at 10% and he will HAVE to start dialysis imminently.  The urgency is that a new kidney will function better and last longer IF transplanted before dialysis begins. 
Another benefit of live kidney donation is the increased survival rate.  Live donor transplants increase the survival rate significantly of the recipient vs. cadaveric donation. 
For anyone contemplating being a living donor, you can fill out the Live Donor Referral Form from Penn Transplant Institute.

Being a living donor is a monumental decision. It is normal to have fears, concerns & a sense of trepidation.  Therefore I’m devoting this post from the perspective of a living donor.

First of all I wish to reiterate what I’ve stated in previous posts, there is NO COST to the donor for the pre-qualification medical or the transplant surgery!  The insurance covers it all. If you need to travel for pre-screening and for the surgery itself, all travel expenses are the responsibility of my brother. 

LivingDonorsOnline offers these considerations to those contemplating becoming a living donor:
“Living donation involves significant invasive medical procedures. Please make sure you are ready to donate. Being ready means:

• I am intellectually ready: I have studied living organ donation, and I understand the process including the risks involved.
• I am emotionally ready: I have prepared myself emotionally for living donation, including the possibility that the donation may not be successful and that I may be harmed in the process.
• I am physically ready: I am in great physical shape because I need to withstand major surgery, I need to have a healthy organ or marrow to donate, and I need to live with less than my full complement of organs.
• I am financially ready: I have the financial resources such as savings and paid time-off (vacation, sick days, short-term disability, etc.) to tide me over (and my family, if I have one) while I am being tested, in the hospital for surgery, and away from work while I recover. I also have insurance protection in the event I die or am permanently disabled by the donation.
• I am spiritually ready: I am driven to donate by the right motives.”

ScienceOnline has a great article One Kidney is More than Enough you might want to read. It states in part; “Kidneys are one of the few organs that people can donate while living. A new study shows that kidney donors generally live long, happy lives"

Consider the words of living kidney donor Keith Langston: "There are 80,000 people on the kidney donor list, and we could wipe that list out through live donation," Langston said. "I want people to know that it only takes five or six days to help someone live a full and happy life." Langston also described the transplant surgery in this way:  "I don't think many people realize this, but the donor surgery is done laprascopically now with the exception of removing the kidney," Langston said. "I have four puncture wounds and a three-inch incision line." A week post surgery & Langston returned to work!

The Facebook group Gift of Life-Live Kidney Donors is a wonderful resource to read the comments from actual live donors who relate their experiences. 

There are certainly risks associated with being a live donor, the same as with any surgery performed under general anesthetic.  The transplant team will thoroughly review these risks with the donor. With laprascopic techniques the surgery is less invasive and the recovery time is much quicker than the old method.  And according to the Penn Transplant Institute, studies have shown that there is no long-term effect on the health of the donor or the remaining kidney. Donors are at no greater risk of developing kidney failure after donating than anyone in the general population. Studies have shown that donors typically live longer than the average population because they are selected on the basis of good health and are thoroughly screened prior to donation.

There is so much need in the United States for live donors. According to US Dept of Health, as of March 18, 2011, there were 93,791 patients on the kidney transplant waiting list! In 2010, there were only 16,898 kidney transplants performed in the US. Only 6,276 were from live donors. Becoming a living donor is truly the gift of life!

Understanding Kidney Function

As many of you may know, I'm using social media to locate a living donor for my brother Kevin. You could help by simply sharing this blog's link across all of your social media sites.

It occurs to me that some of you might be interested in better understanding the importance of adequate kidney function.

The kidneys are the body's filter. They process 200 quarts of blood - EVERY DAY - filtering out toxic wastes and excess water from the body.

The wastes are by-products of your body's activity at every level. When your body uses food for energy & self-repair, waste by-products are created. It's the kidneys responsibility to take up that waste & then dispose of it through the bladder. The kidneys also regulate the levels of various chemicals in the body. It is as if they are intelligent, when working properly, as they actually analyze the levels of potassium, sodium & phosphorus and determine how much of those chemicals should be released back into the body.

I was surprised to learn that kidneys also release 3 hormones to the body!

1. Erythropoietinor EPO which stimulates the bone marrow to make red blood cells
   
2. Renin to regulate blood pressure
   
3. Calcitriol-the active form of vitamin D which helps to maintain the calcium necessary for bones and for normal chemical balance in the body

When the kidneys are not functioning properly, the toxic wastes & fluids build up in the body while at the same time, essential proteins are lost as the kidneys are incapable of filtering them out for the body's use.

Various blood tests determine the rate of kidney function by measuring the levels of chemicals in the blood and assigning a degree of filtration.

There are essentially 3 stages of chronic kidney disease:

• Moderate decrease in estimated glomerular filtration rate (30 to 59 eGFR
• Severe reduction in eGFR (15 to 29)
• Kidney failure - less than 15 eGFR

Once a patient reaches kidney failure - they have to begin dialysis or get a kidney transplant in order to stay alive.

Hemodialysis consists of being hooked up to a machine - an artificial kidney - to do the filtering of the blood that the kidneys can no longer do. Patients may require 3 sessions per week, each session lasting for hours.

While dialysis staves off certain death, it is not as efficient as properly functioning kidneys. That's why the the average life expectancy of a patient on dialysis is only 4 years.

Kevin is currently at 10 eGFR. There is no hope that the kidneys will suddenly start functioning. There is no choice but to start dialysis or have a transplant. He has been on the transplant waiting list for over three years. As his function continues to decrease and dialysis is imminent, he doesn't have the luxury of time to wait for the elusive cadaver donor kidney. The best solution is to find a living donor. A living donor transplant can be directed to Kevin. It will provide the best opportunity for success - by beginning to function immediately, by minimizing the risk of organ rejection, by improving his quality of life & by adding many years to his life.

To become a living donor for Kevin, contact the Penn Transplant institute website & fill out the Kidney Living Referral Form, listing Kevin Bartley as the recipient at the bottom of the form.

Then help spread the word by sharing the link across all of your social media outlets! This is the best way of finding a living donor! The more who read, the more hope that one will be found!

The Gift of Life!

It seems a monumental thing to ask of someone: "Would you please donate a kidney so that my brother may live?" It truly is the gift of life! You could help by simply sharing this information with your friends & family.

If you were contemplating becoming a living donor, you might have some questions about the process!

Will this cost me anything?

The costs of pre-screening and the actual transplant surgery itself, are paid by the insurance company. If you live in a different town than my brother Kevin, some of the pre-screening would be done at a hospital or clinic near you. Any travel expenses ultimately incurred by the donor, would be the recipient's responsibility.

I think I may want to be a donor, how do I start?

The first step would be to contact the Penn Transplant Institute website where you can complete the Kidney Living Donor Referral Form for Kevin Bartley. Then call the transplant team at 215-662-6200. Any inquiry you make would remain confidential.

What kind of testing is involved in being a living donor?

Initially a variety of tests are performed to determine compatibility such as blood type, tissue match and various screenings. If you are deemed to be a match, the transplant center staff then begins a more thorough discussion which would include your reasons for wanting to be a living donor, the surgical process, risks and recovery time as well as providing resources to support you through the process.

What are the benefits of a living donor transplant?

• You can direct the kidney to a particular recipient.
• The kidney usually starts working immediately once the transplant is complete vs a much slower start with a cadaver kidney.
• There is less problems with organ rejection when the kidney comes from a living donor.

What does the actual surgery involve?

The transplant team will review the details of the actual transplant surgery with the donor. The recent advancements in laparoscopic surgery makes it less invasive for the donor & involves smaller incisions. This type of surgery minimizes the risk and recovery time for the donor.

For more information about becoming a Living Donor, The National Kidney Foundation is an excellent resource!

Please share the link to this blog with your email contacts as well as on your own social media sites! The more who know about Kevin's plight, the more hope that he'll find a donor!

All a Sister Can Do

What else could I do but this? What would you do? What can you do? Quite simply, I'm just hoping you will continue reading this post & then help spread the word by sharing with your friends & family.

My brother needs a kidney. A few years ago, one of his kidneys had a tumor on it and was removed. Now he's down to one and its functioning at about 10%. In spite of him having tormented me as his little sister, I would gladly donate a kidney, but I am not a candidate.

What can I do then? How can I help? We're on opposite sides of the country, what can I do from 3000 miles away? I can't make his daily life any easier. I can't take him to dialysis treatments, once that starts. All I can do is try to use the power and the humanity of the Internet to help find him a donor.

Yes I said humanity. I've already learned since I began this campaign on Feb 28 2011 - that the Internet isn't some mystical place made of microchips and bandwidth. Its a community - a GLOBAL community of real people. People who care. People with hearts. People who want to help their fellow man. Several times since I began blogging on this topic, I have been moved to tears by the generous spirit & compassion of virtual strangers. Whether the hundreds of people who have shared this information on their Twitter, Facebook or Blip pages, or the wonderful people who have actually taken the time to find out if they could be a living donor candidate - there are caring people all over the world, anxious to help in some way and we appreciate all of you more than words can express!

I'd like to tell you a bit about Kevin. He's one of the kindest people I know. He's generous to a fault. He has an amazing voice, beautiful tenor! He's a pretty good guitarist & pianist as well. He studied music & computer science in college. He used to be an avid cyclist and a marathoner! I'll never forget that joyous photo of him crossing the finish line at the NYC Marathon (right). Kevin still runs. His running has probably kept him off of dialysis as long as he has been. But its inevitable, he can't survive with this low level of kidney function without having to start dialysis.

Once dialysis begins - so too begins the ticking of his survival clock. While some people survive for years on dialysis - the facts are irrefutable - the majority of dialysis patients die by year five.

For best results, the National Kidney Foundation recommends that patients with end-stage renal failure - get a transplant BEFORE having to start dialysis. Research has shown this provides the best opportunity for good health -post transplant. But the vast majority of patients on the transplant waiting list never live to see a cadaver donor kidney.

Consider that in 2008 there were 16,520 kidney transplants performed in the US. Yet in 2009, more than 80,000 people were still on the waiting list. That's why transplants from living donors has become so critical.

A live donor can direct their donation to the recipient - whereas with cadaver donors, the National Transplant Registry makes the decision regarding disbursement of available organs.

So what can YOU do? #1 - you could simply share the link to this blog with your friends, family, other social media sites. #2 - Interested in being a living donor for Kevin? Click here to contact the Penn Transplant Institute website where you can complete the Kidney Living Donor Referral Form for Kevin Bartley & call the transplant team at 215-662-6200. Any inquiry you make would remain confidential between the donor and the Penn Transplant Institute.

As of today, Kevin still needs a donor. I will update through this blog, if a donor is found so please bookmark this page & check back for future updates.