Tuesday, September 10, 2013

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. kidney_cancer

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.

Friday, September 6, 2013

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?
Survival_Rates_Dialys_TransIn 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!