Almost Six Months Afterward ....

Maybe I should re-name this blog, "Living with a Kidney Transplant". Although I had intellectually accepted the assertions of my transplant physicians that organ transplant is a treatment - not a cure - and that rejection was always a possibility, in retrospect, I didn't accept that reality emotionally. Not until shortly after my May posting, that is.

In early June, despite favorable test results, I developed edema in my leg with significant pitting - one indication of organ rejection. I was frightened. My Savannah physician, Dr. Dana Kumjian, promptly discontinued a couple of my meds and placed me on a diuretic, but my creatinine level rose significantly. Fortuitously, I was scheduled for my four-month post-transplant evaluation at Mayo. There, it was determined that the edema was caused by the since discontinued medications and a kidney biopsy revealed no signs of organ rejection. We returned home much relieved.

Since then, other transplant recipients have told me of similar, even more dramatic experiences. One person, whose 14-year old transplanted kidney functions well, refuses to have his fistula removed. His reason? "Well you just never know."

Meanwhile, I now have bi-weekly, rather than weekly, blood tests and my less frequent conversations with my transplant coordinator are less crisis-oriented. I've resumed my pre-transplant activities, continued to exercise regularly, lost a few pounds, and turned more energy toward the broader issue of organ donation awareness among African-Americans. A fellow member of the 100 Black Men of Savannah recently received a kidney transplant and I was pleased to be able to provide him with a modicum of emotional support during this period.

Finally, I recently sent a thank-you letter to the family of my deceased kidney donor, about whom I know nothing. Unlike the "feel good" media stories, I may or may not receive a reply from them. After all, everyone handles grief differently. Certainly, sending that letter was an important part of my own inner healing process.

And, oh yes, on July 31st Connie and I celebrated our 28th Anniversary at the Jekyll Island (GA) Club Hotel and then on August 5th we celebrated my 77th birthday at Ele's Fusion Restaurant here in Savannah. Yum, yum!

May 2009 - Road to Recovery: "I ain't were I want to be, but I ain't were I used to be."

If there has been any doubt about how much I have to be grateful for, its been put to rest in the the months following our return to Savannah. It's been almost an embarrassment of riches!

We were inundated by cards, emails, phone calls, and visits by family and friends locally, nationally, and globally! Maurice Edwards, my dear friend and confidante of 60 years, has called each day since then, "just to check in". Friends in our Southbridge community arranged for a chef to prepare several meals for us. Members of the J. Franklyn Bar Association in Maryland sent us a generous gift. Bridgette Greer, an awesome friend - and herself a double-lung transplant recipient - was (and continues to be) a steady source of spiritual support and provides ample perspective on managing my meds and the imperative of exercising. My eventual return to our church, St. Luke's Episcopal Church in Rincon, GA, and the Grand Lakes Lodge and Spa (GLLS) was heartwarming. I could go on and on ....

Meanwhile, I soon settled into my routine of weighing myself and taking and recording my pulse and blood pressure twice daily, staying on schedule for taking my 14 (!!) medications daily, having blood drawn each week with results forwarded to Mayo for evaluation, and resuming care under the watchful eye of my Savannah nephrologist, Dana Kumjian, M.D.

Each week I talk with Lynn Kerbe (see photo above), my Mayo Clinic post-transplant coordinator, on my progress (excellent), adjustments in my medication (a few). Lynn has a unique combination of professionalism, a sharp sense of humor - and a remarkable ability to listen.

Two weeks ago, I reached a landmark in my journey when I was cleared to resume exercising and returned to the fitness center of the GLLS where I now work out four to five times each week. I've also resumed my activities with the 100 Black Men of Savannah and will participate on a program on the imperative of organ donation by African-Americans later this month. I also lend my support to a brother in the Savannah 100 who will receive a kidney transplant next month.

All in all I couldn't ask for more in this journey. While the future is always fraught with uncertainties, I remain optimistic.

Next month, we'll return to Mayo Clinic for my scheduled four-month evaluation. If all goes well, my laboratory visits may be reduced to every other week and future visits will take place on the anniversary of my transplant - February 18th.

February, 2009 - Transplant! My Wait is Over!

At about 9:00 p.m. on February 17th, Mayo's Organ Transplant Coordinator excitedly called to say that they had a cadaver kidney and I should report to Mayo's Emergency Entrance at 6:00 a.m. the following day. Needless to say, we didn't get much sleep that night and Connie, who again drove the entire distance, was exhausted upon our arrival in Jacksonville. (I spent most of the trip on my Blackberry, emailing family and friends that we were en route to Mayo - again.)

It seemed as if everyone was awaiting my arrival - from the admitting clerk to the entire staff of the Transplant Unit. After the dry run six days earlier, the reality that this was indeed "it", didn't fully hit me until I was transported to the staging area adjacent to the operating room, was injected with a multitude of needles, was examined by my anesthesiologist and my transplant surgeon, Darrin Willingham, M.D., who thoughtfully brought Connie in to see me just before I was wheeled into the o.r.

In retrospect, the following five days seem more like one long day. I have no recollection of being in the recovery room, but was reassured to see Connie when I was returned to my hospital room. For the next two or three days, I was intensively monitored by a transplant nurse assigned solely to me and another recent transplant recipient. During my hospitalization, I was overwhelmed by the outpouring of support from family and friends - near and far - and visits by Alison and her family, Connie's nephew, Amir West, and our parish priest, Rev. Ellen Richardson, who made a turnaround trip from Savannah, and Madeline Scales-Taylor.

My new "friend" began functioning immediately and I was impressed by Mayo's team approach - which made Connie and me integral parts of our treatment team. In addition to regular walks beginning the day after the transplant (ugh!), we were educated about recognizing signs of organ rejection, diet, and managing my lifetime regime of immunosuppressent and other medications.

Like all of Mayo's recent transplant patients, following my discharge from the hospital on February 23rd, I was required to stay in the Jacksonville area for several weeks to be closely monitored as an outpatient for any signs of organ rejection, blood tests two to three times weekly, and other diagnostic procedures. During this post-hospitalization period, I was encouraged by the support that I received from visitors; my brother-in-law and his wife, John and Jackie Riley, Sandy Malone, Mark & Leah Stewart, and Nathaniel Herring.

Words cannot describe how good it was to return home on March 27th. The irony that we departed in the darkness of night with the grass dormant and brown, and returned on a bright sunny day, with the grass turning green, did not escape me.

Praise God!

February, 2009 - A "Dry Run".

For several weeks, following our return from my annual pre-transplant evaluation at Mayo, I expected every phone call to be “the one”. Then, in mid-morning on February 11^th, after I had adopted a “what-will-be-will-be” attitude, I finally received that long-awaited Call. Within an hour we were en route to Mayo Clinic, Jacksonville. (Connie drove the entire way; I was too anxious to trust behind the wheel of our car.)

Upon arrival at Mayo’s Emergency Entrance, I was swiftly processed, escorted to my room in the Transplant Unit, and subjected to a blur of pre-operative procedures. My doctor, Martin Mai, M.D., examined me thoroughly, cleared my for the transplant and, in response to my query, said that, unless there was a problem, I wouldn’t see or hear from him until after the transplant which was now set for 11:00 p.m.

So, at about 10:30 p.m., when my nurse handed me her cell phone and said that Dr. Mai wanted to talk with me, I thought “This is not looking good.” I was right. Dr. Mai explained that the donor kidney was badly scarred, unsuitable for a transplant, and that my scheduled transplant was scrubbed.

My initial disappointment didn’t last long. First, I realized that my medical team would make every effort to ensure that I received a “good” kidney. Second, I now believed that I was at the top of the transplant list and could reasonably expect to receive a second call in the next few weeks.

December 2008 - Moving Up!

A few days ago, upon our arrival at the Mayo Clinic, Jacksonville for my annual pre-transplant evaluation, we were pleased to learn that I'm now fifth on Mayo's kidney transplant list. Having moved up five spots in barely 60 days , I could be transplanted in the near future- subject to the complexities of tissue matching, which involves testing the similarity of certain proteins (antigens) between potential organ donors and recipients.

The immediacy of my situation became more apparent when my transplant coordinator and social worker engaged us in a discussion of some practicalities - the importance of accurate alternative telephone numbers, what to expect upon arrival at the Mayo Emergency Department, clarification of post-transplant immunosupressant and preventive medications, plans for remainig in the Jacksonville area following the transplant (to monitor and treat any signs of organ rejection), and so forth.

Mosts of the tests durng this three-day period focussed on my heart and its ability to tolerate the transplant surgery. No significant abnormalities were found and other clinical and laboratory tests indicated that my kidney condition is essentially unchanged. We had a lengthy meeting with my Mayo physician, Dr. Martin Mai, on the precarious nature of my "stable" condition and the advantages of a pre-emptive kidney transplant.

Given the immediacy of my situation, we decided to forego our plans to attend President-Elect Obama's Inauguration on January 20th.