Ted's Journey

Dear Friends and Family,

This letter is not an easy one to write because generally I am a private person.  I thank you for taking the time to read it.

As the proud father of a recent Barnard College (Columbia University) graduate, I hope to have many more years with my daughter Jessica.  After also graduating from Columbia, I am now employed by my alma mater after 25+ years in the financial services and executive search sectors. 

I am a Deacon at Marble Collegiate Church, an avid health enthusiast who loves singing and playing guitar and who actively endeavors to leave this world a better place.  Being involved in organizations including Alpha Phi Alpha Fraternity, Free Masons, Stephen Ministry (advising cancer patients and survivors), mentoring college students and more…drives me to live simply and love fully.

Many of you walked with me through my successful battle with multiple myeloma (cancer) six years ago.  As a result of the treatment I received then, I now find myself in urgent need of a kidney transplant.  With humility and with the knowledge that I have taken this fight as far as I can on my own, I am reaching out to you for your prayers and help.

My situation is not uncommon among multiple myeloma (cancer) survivors.  The effects of my bout with multiple myeloma, the scarring of the kidneys, have left my kidneys functioning at only 10 to 15% of capacity, and I will need a kidney transplant very soon in order to continue a healthy life.

The wait for someone with my blood type (B+) is approximately four to five years in New York State.  Using the universal blood type (O) is not much shorter.  I have carefully done the research and understand what is involved for the donor and me.  The fastest way for someone like me to receive a kidney is to spread the word among family and friends to try to find someone interested and willing to consider kidney donation and it is for this reason that I write to you all now.

Initially, I intended to reach out to one family member.  Subsequently, a colleague told me about his outreach for a kidney and how a friend responded.  A college friend answered the call, even though they were not the best of friends during that time.  My colleague was shocked at this generosity and each year for the past nine years, they have a dinner and lots of laughs on their kidney donation anniversary.  After hearing this story, I was not only amazed but more importantly, was inspired to expand my reach.

During my previous health battle with cancer, I mentally geared up for a fight and the game of my life.  I called upon the lessons learned from my football playing days and from my 96 year-old Mother, who prepared me well to face adversity, and to set an example for my daughter on how to cope with the challenges life continually hurls our way.  I always want her to see tangible results that hope and faith can bring….to see that spiritual, emotional and physical support does come through when you least expect it.  There was a happy ending to my battle with cancer.  I am hoping and praying for another happy ending in this situation.

Donating an organ is a serious decision.  As I’ve been learning about my own situation and the intricacies of organ donation, I had many questions.  Did you know that if you donate an organ, you rise to the very top of the donor list should you find yourself in need of a transplant?  The attached documents answered many of my questions, and perhaps they will be informative for any of you who have questions like:  Why would someone donate an organ?  Who pays?  What is the experience like?  What are the risks and after effects?  What regrets might a donor have?  Three attachments for your further information include:

(1)   4 forms of support that you might consider

(2)   The donor fact sheet (expectations)

(3)   Will supply the contact information of a living donor who is willing to talk to people who are giving strong consideration to donating a kidney

Of course, I am also available to talk with anyone who has questions about the process, or provide further resources.  The process is pretty amazing and impressively well managed.

As many of you know, I have sung with various Gospel choirs throughout my life and singing provides me much joy.  When I think of the situation that I now face, there are two Gospel songs that really speak perfectly to my thoughts at this time.  The first one is “Don’t Move My Mountain”…. it pleads with God not to move the obstacles in life, but give us the strength to overcome them.  And at Marble Collegiate Church, we sang “I Know What Prayer Can Do”….this song exemplifies how I felt the power of a caring community from coast to coast that prayed for me six years ago.  Those prayers created a succession of petitions to God’s throne that, no doubt, helped to insure my victory in my fight against cancer.  Your prayers again are a key “ask” here.  I will be eternally grateful for each one of your prayers.  Any prayer, thought or consideration you give to my appeal contributes to my shower of blessings.

All of you who know me know how difficult it has been to even write this letter.  I am aware that this ask is far above the call of duty, friendship or familial bonds.  If you decide this is not a call that you can answer, this will not change our relationship one bit.  But I know that there are times in life when our true strength is revealed by our ability to be nakedly vulnerable and to ask for help.  This is that moment for me.  We have created many barriers to differentiate ourselves but we all want the same things in the end – a full and purposeful life…including all of the ups and downs life has to offer.  I am thankful and grateful for the years I have had…I will be equally grateful for every extra day I am blessed to have, and most of all I am grateful for all of you – my friends and family – who have walked and continue to walk with me through this beautiful life.  With faith, courage, a persistent spirit of optimism and tears in my eyes, I thank you for your consideration and generosity in which ever form it takes.

Warmest regards,

Ted Gregory        ([email protected])

P.S. If you want to share this information/message, please do, and feel free to use our hashtag. 
#TedsJourney 

(1)

Four forms of support that you might consider:

1. Donate a kidney – generally speaking, having two kidneys is redundant and provides our bodies with extra security and back up in case something goes wrong.  When one kidney stops working or is removed surgically, what happens is that the other kidney begins to enlarge and its capacity to filter blood goes up dramatically.  Obviously there are some precautions that should be taken.  For example, people with one kidney should be careful to avoid any medications that could potentially damage the kidney as well as dangerous contact sports.  Potentially kidney-dangerous medicines include common medications like ibuprofen so you would want to talk to your primary care physician to make sure you are taking the necessary precautions.  Should you have questions, potential donors can call 212-305-6469 or go to the following website address:  http://columbiasurgery.org/kidney-transplant.  Here you can fill out the living donor questionnaire and read more information about being a kidney donor. 
2. Monetary donation to help defray costs of a donor that could forfeit earnings if their employer will not compensate them for the time off, uncovered at home care, or related travel expenses.  According to the American Journal of Nephrology, living donors incur out-of-pocket expenses averaging $5,000 and sometimes up to four times that amount.  The transplant recipient’s insurance covers the donor’s medical expenses, but not all transportation, lodging, childcare or lost wages.  There could also be shortfalls in my own medical coverage and that would be helpful as well.  For any excess money not used for these purposes, 100% will be donated to an organization named the “American Living Organ Donor Fund” which was established expressly for this purpose – to make whole people who are generous enough to volunteer a life giving organ. To make a donation, go online to the “Go Fund Me” website.  You can click here to find my site entitled “Donor Expenses for Ted’s Transplant.”  The goal is to raise $30,000.  There is no donation considered too small – all will be greatly appreciated.
3. At home care during recovery – nothing strenuous – just come by and check on me during that 3 to 4 month period following surgery.  During the first month following surgery, I will need mandatory accompaniment for follow-up Doctor visits (twice a week) to make sure that all is healing properly.
4. PRAYER!!!

(2)

Donor expectations /questions (for further information, see columbiasurgery.org – renal and pancreatic transplant program)

A donor must pass a series of tests to determine donor compatibility (blood test, urine test, cancer screening, antibody screening, colonoscopy if over age 50, pap smear / gynecological exam).  Once the work-up is completed, your case will be submitted to your transplant team (surgeons, nephrologists, psychologists, donor advocates and nurse coordinators).  They represent your best interests in this process and are different from the recipients’ team.  Keep in mind that at any time in the evaluation process, right up until the moment of surgery, you as the donor have the right to change your mind about making the donation.  The decisions and reasons are kept completely confidential.  Certain diseases or chronic conditions, such as cancer, HIV, hepatitis, and diabetes, will exclude potential donors.

After all tests are successfully completed, the surgery will be scheduled, usually 4 to 6 weeks in advance.  Typically, a living kidney donor spends two days in the hospital and will have an additional 4 to 6 weeks of recovery time.  Donors who are from out of town should plan on spending an extra week in town after they are discharged from the hospital as a precaution.  During the recovery you will experience some pain and discomfort.  This should be easily relieved with either a prescribed medication or over-the-counter pain relievers.  For two weeks, you should avoid driving and avoid picking up anything that weighs over 10 pounds for 6 weeks following surgery.  You will be encouraged to walk several times a day. 

Depending on the type of work you do, you may be able to return to your job as soon as two or as long as eight weeks after surgery.  There will be follow up tests to monitor your health.  Keep in mind that all related expenses are covered by my (the recipient’s) insurance company, including any travel required. 

Since 1996, Columbia surgeons have been removing kidneys from living donors using a technique known as a laparoscopic nephrectomy.   Instead of a single, large incision, this requires three ½ inch incisions, through which the surgeon inserts surgical instruments and a camera to view the operating field.  Once the surgeon has freed up to kidney to be donated, he or she removes it from the donor through a slightly larger incision. 

Since this technique uses smaller incisions, donors benefit greatly from reduced post-operative pain, speedier recovery times, and less scarring.  On average, kidney donors spend two days in the hospital and can return to their normal activities within 3 weeks.  Once a donor has recuperated from the surgery, they can expect to lead a completely normal life – without special medications, restricted diet, or limited physical activities.  In addition, if you as the donor are ever in need of a kidney, that fact you were a previous donor will vault you to the top of recipient list in any given area which will drastically reduce any wait time.

Can organs be given to different racial groups of individuals of the opposite sex?  In most cases, race and gender are not factors.  However, organ size is critical to match with a recipient.  Plus, people of similar ethnic backgrounds are more likely to match each other than those of different racial heritage.  Cross-racial donations can, and do, happen with great success when matches are available.  The technology has changed to the point where matches can be made in many ways.  

(3)

Email Ted for contact information of a living donor willing to talk to people giving strong consideration to donating a kidney.