Ladypn

Have a Heart

2012-02-02T13:47:00.001-08:00

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!

2011-11-14T13:56:00.001-08:00

There are 90,368 U.S. patients currently waiting for kidney transplant.

Because of the lack of available donors in the U.S., 4,573 kidney patients died in 2008 while waiting for that life-saving kidney.

Of all U.S. deaths last year, its estimated that 12,000 of them could meet the criteria for organ donation, but less than 1/2 of them become actual organ donors.

Deceased donor organs are matched to recipients by the National Organ Procurement & Transplantation Network. Its computer registry is operated by the United Network for Organ Sharing, located in Richmond, Virginia.

There are 58 organ procurement organizations in the U.S. providing services to 250 transplant centers nationwide.

Transplant recipients are determined by medical urgency, compatibility, body size, blood chemistry. Race is not a factor.

For those on the kidney wait list, transplantation doubles the life expectancy vs. kidney dialysis..

The average waiting time on the deceased Kidney transplant list is 4 years, in some regions - 7 years.

Research has proven that the shorter the wait, the longer the life expectancy.

My brother Kevin has been on the kidney transplant waiting list OVER 3 years. His kidney function is just 11%, yet he’s been able to avoid having to start dialysis based on the level of toxins in his blood.

Surviving the Wait

It is just a matter of time before Kevin will have to begin dialysis. Typically its recommended when a patient reaches 15% function.

Statistics show that patients have a longer life expectancy, post transplant – if they’ve not had dialysis before the transplant.

But if dialysis begins, the statistics for survival without a transplant, become more grim. The National Institute of Diabetes and Digestive and Kidney Diseases reports the dialysis survival rate as follows:

1 year - Nearly 80%

2 yeas – 64%

5 years – 33%

Only 10 percent of dialysis patients survive 10 years.

However you look at it, Kevin’s running out of time. As a deceased donor kidney hasn’t been found, his best option is to find a live kidney donor.

For more information on becoming a live kidney donor, visit the Penn Transplant Institute website. The fastest way to start the process is to complete the Live Kidney Donor Referral Form & fax to the Penn Transplant Institute.

Take a Life-Saving Step!

2011-09-24T17:05:00.001-07:00

Kidney disease affects thousands each year in the United States. Did you know that kidney disease is the 9th leading cause of death? There are more than 100 disorders, diseases, and conditions that can lead to progressive destruction of the kidneys.

We have to mobilize to help increase awareness and perhaps even save a life!

Its personal for me, as my brother Kevin has been on the kidney transplant waiting list for more than 3 years. Now, the best hope for him is to find a live kidney donor.

Check the website to find a Kidney Walk near you, or to sponsor Kevin and his wife Debbie, as they walk on October 9th! Help make each step count!

Time Rushes On

2011-08-30T22:51:00.001-07:00

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

2011-06-06T16:24:00.001-07:00

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

2011-06-01T12:45:00.001-07:00

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

2011-05-08T11:14:00.001-07:00

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!

2011-05-04T12:31:00.001-07:00

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!

2011-04-26T12:14:00.000-07:00

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!

2011-04-22T12:16:00.000-07:00

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!

April-National Donate Life Month

2011-04-11T16:29:00.001-07:00

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!

The Evolution of Hope

2011-04-02T13:24:00.001-07:00

The first thing I would ask of you is that you share the link to this blog to all of your email contacts & by posting on your blog & social media contacts!

My brother Kevin has been on the kidney transplant waiting list for three years, to no avail. As the time to begin dialysis quickly approaches, the best hope for his recovery is to receive a kidney from a living donor.

Can you imagine being in such a position? Every day, feeling the further decline of your body, as your kidney’s function continually decreases. The symptoms of kidney failure become more acute when your function falls below 15%. Kevin’s is at 10%. Some of the symptoms include:

Nausea, vomiting, diarrhea, dehydration
Loss of appetite, weight loss
A build-up of phosphates in the blood which in turn causes itching, severe muscle cramps & bone damage
A build-up of potassium because the kidneys cannot filter it, causing abnormal heart rhythms and muscle paralysis
Build-up of fluids causing swelling of the legs, ankles, feet, face and/or hands & shortness of breath due to extra fluid on the lungs
General lethargy and weakness

For the first 2 years of waiting, there seemed to be little hope. But in 2010, a potential donor came forward, offering her kidney. Blood tests determined the candidate was the correct blood type! Hallelujah! Further tests confirmed her to be a tissue match! Amazing!! In January, Kevin flew the potential donor & her family to Philadelphia to proceed with the pre-transplant evaluation. We were all so hopeful that he would be healthy again and could stave off the potential risk of dialysis. There was finally hope that he’d be able to live out a normal life span.

However, all hope was dashed when during the pre-transplant evaluation process, the candidate changed her mind. Do not misunderstand – NO ONE could fault her for her change of heart! This is a monumental thing to ask of someone-giving the ultimate gift of life as a living donor!

None of Kevin’s siblings, including myself – are candidates as a kidney donor. Nor is his wife. The only hope now is to find another living donor!

This is why I’m doing all I can to tell Kevin’s story, in hopes someone will be motivated to save him. I have no doubt that a living donor will be found! Already there have been heroes who have stepped up to see if they were a match. I will not stop until Kevin receives a new kidney. The more who read this blog, the more likely we’ll find that donor! Hope does spring eternal!

The fastest way to start the process of being a living donor for Kevin is to fill out and fax the Live Donor Referral Form from the Penn Transplant Institute.

If you can’t be a donor, please spread the hope by sharing this blog link with all of your contacts!

Giving the Ultimate Gift As a Living Donor

2011-03-28T00:32:00.001-07:00

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

2011-03-20T16:02:00.000-07:00

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!

Erythropoietinor EPO which stimulates the bone marrow to make red blood cells
Renin to regulate blood pressure
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!

2011-03-10T08:19:00.000-08:00

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

2011-03-07T08:24:00.000-08:00

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.

We All Could Be Heroes!

2011-02-28T09:37:00.000-08:00

Hello my friends! I am writing today for an extraordinary reason - I hope to help save my brother's life. And to ask you to share the link of this blog, with your friends and family - you never know where help will come from! You could be a hero!

My brother Kevin Bartley’s kidneys have lost 85 – 90% of function and he will soon have to start dialysis. He has been on a kidney donor list for the past few years, to no avail. We are hoping to find someone who will donate a kidney for Kevin. Transplants performed from living donors usually are more successful than from deceased donors.

Healthy kidneys clean your blood by removing excess fluid, minerals and wastes. But if the kidneys are damaged, they don’t work properly. Harmful wastes can build up in your body. Your body may retain excess fluid and not make enough red blood cells. This is called kidney failure.

Typically there is little risk to a kidney donor. John Hopkins University transplant surgeon, Dr. Segev stated, “Donating a kidney doesn’t shorten lifespan. While there are never any guarantees with surgery, donating a kidney is safer than undergoing almost any other operation.” http://www.medicalnewstoday.com/articles/182026.php

A kidney transplant will be a life-extending procedure for my brother. The typical patient will live ten to fifteen years longer with a kidney transplant than if kept on dialysis. Ideally, a kidney transplant should take place before the patient begins dialysis. And once he begins dialysis, a clock starts ticking - towards his death as the majority of dialysis patients are dead within 3 to 5 years of starting dialysis.

If you are interested in beginning the evaluation process to be a living kidney donor for Kevin, please go to the Penn Transplant Institute website where you can complete the Kidney Living Donor Referral Form and contact the team at 215-662-6200. All inquiries shall remain confidential between the donor applicant and the Penn Transplant Institute. Here is the link to their website: http://www.pennmedicine.org/transplant/patient/kidney/donation/

The National Kidney Foundation also has an excellent resource for living donors on their web site at http://www.kidney.org/transplantation/livingDonors/news.cfm http://www.kidney.org/transplantation/livingDonors/infoQA.cfm

Please help spread the word by forwarding this information to any Friends or family members you feel would be appropriate. Sometimes a donor comes from the most unexpected places. I heard recently of someone who was on the phone wIth her kidney specialist while waiting in line at a coffee shop. The Barista overheard and said she would be tested. Amazingly, she was a match and the transplant was done! Such an amazing case which fills our hearts with hope!

Thank you from the bottom of my heart - for your consideration regarding Kevin's dire medical situation.

What is that Noise?

2010-09-28T14:39:00.000-07:00

I recently heard that Neil Young was coming out with a new album, "Le Noise", due out September 28. I was so looking forward to hearing it!

Tonight on the way to Office Max for a new mouse... a song came on the radio. As I was listening, I first thought, "WHAT is this station playing?" I couldn't believe what I was hearing on my usually reliable FM station. The song was completely out of character for them.

My 2nd thought was, "Who IS this guy? He's trying too hard...." In the next instant, I recognized the voice - it was Neil Young!

The song was "Walk With Me", (click title to hear track!) but instead I wanted to run away. I know I am probably going to disappoint some die-hard Neil Young fans (myself included!) by saying that the tune was hard to listen to!

Missing from the track were Neil's charming yet quirky signature vocals. Instead it delivered the slash and burn of an over-played guitar. By mid-song, I began wondering if something was wrong with the man. It reads "psychedelic 60's trying too hard to advance to the new millennium but held back by the 70's".

The crying guitar measures seemed totally unnecessary and over-done. I could find no melody compelling me to sing along. The lyrics were insipid-such a surprise coming from the man who did "Needle & the Damage Done".

Some friends suggested that I not post this review until I listen to the entire album, but I call them as I hear them. I can only hope other tracks from the 8 song album, offer more promise and are easier on the ear!

Music-Trends Like Fashion

2010-09-09T12:26:00.000-07:00

You've heard the saying, "don't throw out those bell bottoms from the 70's, they'll come back into style again someday"...

So too with trends in music. Many of the new bands are definitely styling some retro vibes.

The Postmarks

Consider the Postmarks - a trio from Pompano Beach, Florida. Tim Yehezkely's lead vocals, and often her own fashion sense (see above photo) make me feel transported to the mod 60's. Jonathan Wilkins & Chris Moll (the other 2 of the trio) are multi-talented musicians, playing many instruments and arranging music with pure genius. Their track "My Lucky Charm" from Memoirs at the End of the World, is magically delicious! Groovy vibes made fresh with their Indie-pop sound.

Imelda May

Irish born songstress, Imelda May, is often described as "rockabilly" but the track "Johnny Got a Boom Boom" from her Love Tattoo album, has that 50's/60's jazz/beatnik sound. Not that I never was IN a beatnik club in the 60's, but I imagine it sounded like this! You can almost smell the clouds of cigarette smoke and hear the clink of bar glasses. The bass provides the perfect backdrop for Imelda's Kool-Kit delivery. She's outrageously sexy while exuding an untouchable class (think Audrey Hepburn as Holly Golightly) This track just settles in, forcing my foot to tap, and fingers to snap. Bongo bango, mingle mangle, ratatat, she's got all that.... (forgive my lame attempt at Beatnik poetry!)

2010-07-21T17:10:00.000-07:00

New Music Sounding Fondly Familiar

So many new artists and groups hitting the charts in the past couple of years are familiar in a comfortable way. Some artists seem to be trending toward a more Folksy vibe. Consider Monsters of Folk, Mumford and Sons and The Avett Brothers.

Monsters of Folk's formation, exemplifies the bonding that brings music lovers together. At the time the group was named in 2004, all members were with other groups or working on solo projects which ultimately delayed the release of their first album until 2009: Jim James from My Morning Jacket, Mike Mogis & Conor Oberst from Bright Eyes and Portland guitarist M. Ward, had frequently encountered each other while on tour, at times sharing the same stage & often sat around backstage, just making music. The title of Monsters of Folk's "Baby Boomer" actually reflects my point quite well, as do these lyrics: "We don't agree about September, could we agree on Vietnam?" This catchy tune reminds me of the 60's & 70's folk music that was a signature of the Baby Boomer generation. An alchemy of sound & the individual styles of its 4 members, imbibe country, folk & bluegrass of old, yet manage to still sound fresh and new.

In the Avett Brothers' "Laundry Room" , its lyrics "I am a breathing time machine" reflect that indeed the Avett Brothers are like a musical time machine. Their banjo, guitar and harmonies are reminiscent of the Travelling Wilburys and celebrate the loving act of making music. Brothers Scott & Seth Avett from North Carolina, joined by bassist Bob Crawford, create folksy tracks infused with pop, rock, bluegrass, honky-tonk, ragtime & country overtones, creating music which sometimes defies description!

With lyrics like "Lend me your hand and we'll conquer them all", Mumford & Sons "Awake My Soul" can be likened to the social awareness of the 60's & 70's. The strains of guitar, the lyrical harmonies & a banjo building up the bridge, are all elements of folk, country & bluegrass which are delivered with such enthusiasm by these four 20-something young men from West London. Its hard not to be drawn in by the heart-warming & relevant stories their lyrics tell. In spite of the familial ties the name of the group might suggest, its members are not related. They are four friends - Marcus Mumford, Country Winston, Ben Lovett & Ted Dwane, who had performed individually around London with various bands before joining forces in 2007.

The music of all three examples above, brings me back to a time of innocence in my own life, sitting backstage during summer stock theatre's rehearsal breaks, singing and playing the guitar with friends who LOVED music as much as I did. We brought harmony to life, & celebrated friendships through our shared passion for making music, much like the basis for the creation of all three of these groups.

The Day the Music Stopped

2010-07-13T11:11:00.000-07:00

Welcome to my FIRST blog! Thank you for taking the time to read a novice's verbal meandering. If you like what you read, I hope you'll subscribe!

May name is Pamela - and I am addicted to music. I have been since the day I was born (so my mother told me!). I'm certain that my 1st words were sung rather than spoken. I can remember providing the entertainment for my Mom's weekly Bunco club gatherings when a small child, singing songs. I taught myself to play the piano by ear, because I wanted to PLAY what I'd heard my older siblings spin on their record players. My siblings and I performed in musical theatre from the time I was 7.

So many of my fondest childhood memories revolve around music. My parents kept the home filled with music! Though neither parent sang, all of us children excelled, vocally. We entertained ourselves by putting records on the LP player. We would march around the family room to the strains of John Philip Sousa's marches, or danced the Cha Cha and the Waltz. If not in school or rehearsal for a play or musical, all of my time was spent sitting with friends, strumming the guitar and singing favorite tunes. When my parents separated & subsequently divorced, I covered my ears with a set of headphones and rarely surfaced from listening to the saddest music I could find. Somehow it consoled my wounded psyche.

I could not IMAGINE life without music! To say I lived and breathed it, would be an understatement. My memories are forever tied to the music I loved at the time whichever event transpired.

All of that changed one day in September, 1996. Only it took me more than two years to realize that the music had stopped for me on the day my mom - who was also my best friend - was diagnosed with terminal cancer. Although my career had taken me nearly two thousand miles away from her and the rest of my close-knit family, we still talked daily.

It wasn't until more than 2 years after her death, that I even REALIZED that not only had my Mom died, the music had left me, had left my heart and soul, the music too, had died. When that realization hit me, I was filled with such a palpable grief, it is hard for me to articulate. How could I have spent the past 2+ years without EVER sitting down at the piano? How did I make it through 760 days without ever singing a note? How is it possible that I never once listened to my extensive music library or turned on a favorite FM radio station? Why had I deprived myself of the JOY of music? As music has always been tied to the best memories of my life, I guess I shouldn't have been surprised that it disappeared during the worst grief of my life.

Even after that realization, I didn't rush to the piano or burst into song. It still took a long time before the music was truly resurrected.

This lengthy story lays the groundwork for one of the most amazing music related discoveries I've ever experienced - Blip.fm. What is Blip.fm? If you don't know yet - it is a music sharing web-site (free!) where people can PLAY or purchase music while connecting with other music lovers across the globe. I joined in early December, 2008 and quickly became a Blip.fm addict!

Blip.fm re-ignited the musical flame for me. The joy of rediscovering my old favorite songs was akin to reuniting with an old lover. Blip also introduced me to a lot of the new music I had missed during my musical embargo. I've been like a kid in a candy store since joining Blip.fm.

If you're a music lover and haven't already experienced Blip.fm, you can join by clicking here, I would love to see you on the Blip-stream!

In future blogs, I will focus on individual artists or groups that have grabbed my attention. I'd love to hear from YOU about the music you're loving these days! Please leave your comment below! That's another of the joys of Blip.fm - discovering new music! Lets take that musical journey together!