To life! – Giving a gift beyond measure

Patient On Dialysis Machine

 

By Chandrea Serebro

Lori Palatnik, founding director of the Jewish Women’s Renaissance Project, relates how she was sitting in a taxi in New York when her taxi driver asked her, “If we only need one kidney, why did G-d create us with two?” Lori replied, “So that we could give one away.” She told this story a year ago at the launch of Life2Life, a donor network programme which is a project of Hatzolah, to an audience where no one was left dry-eyed. “Life2Life was born out of a need that we identified in the South African Jewish community, to educate the Jewish community about organ donation and to assist people looking for a match for organ donation from unrelated people,” says its founder Lance Abramson, Chairman of Hatzolah. Founded to educate and raise awareness of blood and organ donation, primarily within the South African Jewish community (including the donation of blood, platelets, bone marrow, kidney donation, and organ donation from a deceased person where appropriate), Life2Life operates on the principle that a person who saves a life, saves an entire universe. This principle, says Lance, is fundamental in Jewish thought and overrides almost every other commandment, such is its centrality.

Life2Life is in the business of making shidduchim, in that, rather than providing medical services, it directs potential donors to the appropriate medical service providers who excel in their fields and who will ensure the donor experience is not only as safe as possible, but also uplifting. And importantly, Life2Life aims to create a database of potential donors so that when a patient approaches the organisation in need of one of the above-mentioned medical donations, a potential donor can be identified and directed to the necessary medical facilities for further testing to become a direct donor. “It has been an interesting journey seeing how people are willing to come forward and donate a kidney to a complete stranger.” Life2Life’s current case is a 69-year-old for whom they are currently working to find a match for a kidney transplant (see his story below).

“When we started out, it was because we realised that organ donation is a complete unknown in the SA Jewish community. There is a misconception in the Johannesburg Jewish community that organ donation is taboo. While there is an extremely large and complex debate about donating organs after death,” explains Lance, a debate that continues to rage across the world and between the greatest of Jewish thinkers today, “there is complete agreement that donating where possible while alive (such as kidney or blood) and under the right conditions, is a huge mitzvah, as it is ultimately a life-saving procedure.” With wholehearted endorsement from the Johannesburg Beth Din, and a deep commitment to operating in accordance with the highest moral and ethical standards as required by both Jewish law and the law of South Africa at all times, Life2Life is bringing the awareness that it is simpler, less risky, more needed, and more life-changing to others than anyone would have thought. For the giver, the risks are surprisingly low (it has been likened to an appendix removal). Being an altruistic donor (somehow who donates an organ for someone they don’t know) is now accessible for most healthy people who pass the screening tests, with relatively little physical impact to a person’s life. And for the recipient of the organ, it means a life saved, changed, and bettered.

“Life2life have offered me hope that was not there prior to the attempt to find a donor. Due to the effort that they have put in we have had potential donors that unfortunately have not been matches. They are untiring in their effort to succeed,” says the anonymous patient. For Lance personally, the first year of Life2Life’s existence has been “an amazing eye-opener”, opening up a previously unknown world to him. But also, he says, the realisation that “people are struggling with grave health challenges – ones which can be solved if we rally together as a community and offer to give what really is the ‘gift of life’, if we find ourselves in the amazing and unique situation whereby we are a match for someone else.” Life2Life currently focuses on kidneys, blood, bone marrow, and platelets. For more information, visit: www.life2life.org.za

An anonymous patient plays the waiting game

“As a young man, I went for a medical to obtain a pilot’s license and the doctor carrying out the medical examination told me that I had protein in my urine. I asked what had to be done and he said nothing was necessary. With all future medical examinations the same explanation was given, and at no time was I ever told that this could be a sign of a kidney problem. I was also told that my blood pressure was elevated, but that was often put down to ‘white coat syndrome’, which means that the patient gets tense when the doctor puts the cuff on the patient to monitor the blood pressure. Many years later, at a check-up with a cardiologist, there was once again protein in the urine and I was advised to cut back on protein and citrus intake, and to see a urologist. I was then to discover that I had very poor kidney function, and after being monitored by a nephrologist, I was informed that my kidneys were not operating well at all and I was put onto dialysis three times a week. The news came with great shock and disbelief, and we were unaware of the journey we were all about to take going forward. We did not know exactly where we stood, or what this would mean for the future and this is a journey we are still traveling every day. Now, my health is good under the circumstances. Having compromised health means that one becomes ill easier than the normal person, and when ill it is much more intense, and takes much longer to recuperate. I am astutely aware of how compromised my resistance is. I cannot be in crowds or put myself into any vulnerable situation. Going away for any amount time is challenging, as the time span between dialysis treatments is only one day apart. Dialysis takes many hours out of the day and although one spends four hours on the actual machine, one spends a lot longer waiting to be put on the machine. It also takes quite long to stop the bleeding afterwards, and the treatment leaves a person feeling very tired, which requires me to go home and rest up. There is no possibility as an older person to get onto the list of the national renal transplant unit. Dialysis is taxing on the body and is not conducive to an optimal quality of life.  So for me, organ donation is the only option. My family and I have learned the amazing gift of life that organ donation gives. Organ donation gives the recipient the opportunity to turn back the clock and embrace a healthy, normal lifestyle once again. This is the greatest gift that the donor can give to the recipient. Learning to live with kidney failure has made me dig deep into my resources of appreciating all I have and making the most of the situation. This in itself has strengthened who I am. Organ donation would allow me a second chance at life, and this would certainly allow me to come out of this stronger and healthier, as well as indebted and extremely grateful. What more could I ever ask for from anyone?

A Second Chance 

Feeling bad for months, Rabbi Moshe Schnerb eventually went for blood tests to get to the root of what was making him so ill, and on receiving the results found himself with End Stage Renal Disease, a terminal illness which is silent until a person finds himself with all but dysfunctional kidneys and the shock of a single realisation: organ donation is the only way out. “There I was, happily going through life, and all of a sudden I found myself, at 49, suffering with a dread disease, with only an obscure hope of finding a donor kidney match, which I was told for my conditions would be a 2-10 year wait.” Just six months after diagnosis, Rabbi Schnerb was on dialysis, a taxing experience which he found “very tough”, and which left him physically depleted. Dialysis is physically taxing, and the life you live is heavily restricted, with dietary and physical impositions placed on you that at times feel like a “crisis situation”, describes Rabbi Schnerb. After four years of dialysis and even some near-death experiences, Rabbi Schnerb was very ill. After driving an awareness campaign in the community, still no match could be found despite the fact that he was now on the top 50 of the national list of recipients. This, he explains, is a very positive place to be, so much so that Rabbi Schnerb was literally sitting on shpilkes waiting for the call that would signal a new kidney. During this time, Rabbi Schnerb travelled to America for his brother’s wedding, and finding the wait on the SA national system very frustrating, decided to have his medical workup done at Mt. Sinai Hospital and put himself into the database there.

On return to South Africa, unbeknownst to him, his nephew, a 32-year-old Yeshiva student, decided to get tested and he was found to be a match. “The disease itself was an emotional rollercoaster of a time, it had its highs and lows, good days and bad, the ups and downs of whether I would indeed receive a new kidney or not. Now that I was at the end, it was a miracle in action. The way I found myself in America despite being so close to the top of the list here in SA, the news that my nephew was a match, the whirlwind trip to America for the transplant operation, the miracle of first world medicine, and recovering out of hospital a mere three days after having the transplant operation. A miracle.” Now, a mere 18 months later, Rabbi Schnerb’s life has changed dramatically. “I can do almost anything now, and after all the restrictions I had on my life, this is liberating. I have literally been given a second chance, and I have to spend my days trying to live that life in the best way possible, to use this new-found opportunity to the best of my abilities.”

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