A Surprise Diagnosis Renal Cell Carcinoma

Kevin’s battle with kidney disease started more than 5 years ago, when a benign tumor was found on one of his kidneys. A partial nephrectomy was performed, removing the tumor. It was expected that the remained of that kidney, and his other kidney, would be sufficient to sustain him. But the other kidney never took over the full duties so 5 years ago, Kevin was put on the Kidney Transplant Waiting list with a Critical status.

As so few Americans are registered organ donors, there have been NO cadaver organs available for him. So Kevin has languished, his condition worsening each year, his Gross Filtration Rate (GFR) worsening. Astoundingly, he was able to avoid dialysis. It was surprising to his doctors. They ultimately assumed that his fitness regimen of running and biking, must have been keeping the toxicity levels low enough.

A year ago, his symptoms were escalating,  a scan was done. A tumor was evident in his other kidney and Kevin was immediately removed from the transplant list. The transplant team said that until surgery & pathology tests could be performed, and proven to be cancer free, he had to stay off the list.

Surgery was done in early October 2012. I was certain the pathology results would show that this tumor was benign, like the one in his first kidney. His wife and I were stunned when post surgery, the Dr. came to see us and informed us that he was certain it was cancer, but they would wait until the pathologist’s report came in. A week later, that report came in and confirmed the Dr.’s initial diagnosis – It was malignant and specifically, Renal Cell Carcinoma.

To say that we were surprised by the diagnosis, is an understatement. His doctors explained that as they felt all of the tumor was removed and with no lymph gland involvement, no further treatment was called for. But then more bad news, they told us he could NOT return to the Kidney Transplant List for a year or two and then only if no signs of the cancer return.

Renal Cell Carcinoma – with this new diagnosis, I began researching this cancer. It is thought to be the most deadly urological cancer and responsible for 80% of all kidney cancer cases. This diagnosis put more of a sense of urgency within me, to continue the hunt for a live donor, but as Kevin was off the transplant list, I couldn’t. Had a donor been found during this period, they transplant team wouldn’t have even talked with them – if Kevin’s off the list, he’s off the list.

Amazingly, after a cancer free scan in August, the Transplant Team approved that Kevin be put back on the transplant list. He is at a critical status.

With his health failing as quickly as his GFR and levels of toxins in the blood rising, Kevin had no choice but to begin dialysis in early summer. Strange irony – dialysis itself IS a known cause of Renal Cell Carcinoma. The clock is ticking. Kevin’s best hope for LIFE is to get a new kidney.

If you’re interested in learning if you could be a donor, please visit Penn Transplant Institute’s site, and fill out and fax them the Live Donor Referral Form.

You can also help by simply SHARING this blog on your own blogs and social media accounts.

A New Lease on Life!

As many of you know, my brother Kevin has been on the transplant waiting list for a new kidney for

more than 4 years.  Previously, I had been using social media and this blog, to find a live donor for him. I have had many amazing individuals who stepped up to the plate, such generous spirits willing to help a total stranger, but in all those cases, it simply didn’t work out. Either not a match, or the donor’s individual health problems excluded them from consideration.

I apologize for the long delay in posting an update. A lot has transpired since you last read a post here.  You may recall that last fall, a new tumor was found on Kevin’s other kidney, and surgery had to be performed to remove the tumor. The surgery was done in early October 2012. The results of the pathology report,  were not what were hoped for.

In spite of the fact that the first kidney’s tumor Kevin had, that put him on the list in the first place - was benign, this time, it tested positive for cancer. Renal Cell Carcinoma to be precise. The news was totally devastating. Although the surgeon was positive that he removed all of the tumor,  Kevin was immediately removed from the kidney transplant list and told it could be as many as two years before he could get back on the  transplant list, and then only if he stayed cancer free. More devastating news! It didn’t make sense to me, if they got all of the cancer, doesn’t it make more sense to keep him on the transplant list? The sooner you get that poorly performing kidney out of him, the less chance of cancer returning?

In the meantime, Kevin’s kidney function continued to decline to precipitous levels. This summer, with a kidney GFR of 6%,  he had no choice but to begin dialysis. Which of course, was another devastating development. As I’ve reported in previous blogs, the survival rate of those on dialysis is terrifying. Statistically, the average life expectancy of a patient once he begins dialysis, is 4 years! Yes, of course there are exceptions, yes I know – you know someone who’s been on dialysis for 20 years and he’s still alive – the exceptions are taken into account when statistical averages are calculated! The statistics do not, can not lie, the VAST majority do NOT make it to year 5 on dialysis. The sooner he can get a kidney transplant, the more hope of living.

Since the surgery last October, Kevin’s scans have shown he remains free from cancer. And finally, I can report some incredible news here! After his last scan in August, the Penn Transplant team has approved him to be back on the transplant list!

Now  more than ever before, I am determined to find a live donor for Kevin! Anyone who is interested in being a donor, please follow this link to the Penn Transplant Institute and complete the Live Donor Referral Form.

Not everyone can be a donor, but you can still make a difference! More importantly than ever before, I need your help to save Kevin’s life. By simply sharing this blog’s link on your Facebook timeline, Twitter & other social media sites, you will be doing your part to increase awareness of Kevin’s plight!  The more who read this, the more hope for Kevin. You’ve heard the stories, it happens all the time, people find live donors using social media. It works, it saves lives! Please help me save Kevin’s life by sharing this blog!

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.    

Hanging on to Hope!

 

My brother Kevin has been on the Kidney Transplant waiting list for more than three years.  There have been highs, there have been lows…but we’re hanging on to hope! 

I keep reading about people who have used the internet to find a kidney donor.  Just last week I read about another case – Indiana Man Finds Kidney on Facebook

Last year I started dedicating this blog to the cause - utilizing Blip.fm, Twitter, Café Press, and even created the Kidney for Kevin page on Facebook-I have kept holding on to the hope that someone would read about Kevin’s need and decide to give the gift of life. 

Now I’ve added another tool to my arsenal in hopes of increasing awareness about Kevin.  Many of you Facebook users may be familiar with the “Causes” application on Facebook.  I’ve now added a Kidney for Kevin Cause page!  The Causes application is such a convenient way for members to invite their friends to join the cause!  With each read, comes more hope!

For more information about being a living donor, please visit his transplant center’s website.  If you think you could be a donor, the quickest way to start the process is to fill out the Living Donor Referral Form and faxing it in to the Penn Transplant Center. 

As a cadaver kidney hasn’t become available in over 3 years, Kevin’s best hope is to find a living donor.  I  hold on to the hope that this message will reach the most potential donors. If you cannot be a donor, please join the Facebook Cause and Kidney for Kevin pages and share on your own social media outlets.  The more who read, the more hope there is to hang on to. 

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!

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!

 

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!