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Posted/updated: February 05, 2008
From time to time, we learn about Jews who need medical transplants – i.e., an organ transplant or bone marrow transplants. Below are several requests that have come to our attention.
The decision to become a donor is a personal one, and Central Synagogue shares these requests for informational purposes solely. No information in this listing is intended to be construed as medical advice or recommendations. Nor should the information contained herein be a substitute for seeking proper medical consultation from qualified healthcare professionals. Users of the information below agree to indemnify and hold harmless Central Synagogue from and against any and all claims, damages, liabilities and costs arising out of or resulting from the use of this information.
Imagine having everything to live for—two beautiful children, a loving husband and loyal friends—and then finding out in a flash that your life is literally dependent on the kindness of a stranger. Lisa Gershowitz Flynn, 41, is looking for the match of her life. A vibrant and active 41-year-old, Lisa was recently diagnosed with Acute Myelogenous Leukemia (AML), a fast-moving version of the disease. She was immediately hospitalized and has gone through three rounds of chemotherapy in the past two months. Unfortunately the treatments have not put her into full remission, and it is now critical for her to have a bone marrow or stem cell transplant. Her brother, Steven, is not a match, so she must rely on a finding a donor from outside her family. Because Lisa has an acute form of Leukemia, which is growing in incidence very year, she has only months to beat this cancer.
The family has searched donor banks worldwide, with some close matches, but has not yet found a match that can help save Lisa. The doctors are fully confident that there is a match—it’s just a matter of getting more people tested. There are so many misconceptions about bone marrow donation and the availability of genetic matches to patients in need. 80% of those who search the registries never find a match. We need to educate everyone so they can understand how simple it is to save someone’s life!
Her friends and loved ones have rallied to spread the word and have organized donor drives with record-breaking numbers, in the hopes that not only can a match be found for Lisa, but for the thousands of others waiting for life-saving transplants as well. Lisa’s heritage is Eastern European, and she has a very good chance to match someone from the same ethnic background.
Lisa is truly a special woman who lights up a room with her happiness, even when her mood is not so bright, and she has retained her sense of humor and optimism throughout her illness. An attorney at I-preo in Manhattan, Lisa grew up in Jericho, Long Island, and attended Duke University and Fordham University Law School. Her husband of 10 years, John Flynn, is originally from Scarsdale, New York, and works at Garnter Group in Stamford CT. Lisa and John live in Manhattan with their two children, Michael, age 5, and Alexandra, age 3.
* Source: National Marrow Donor Program (NMDP).
During the drive each donor will be asked to fill out a one-page form and to complete a cheek swab sample test. After the test is processed, within 3 to 4 weeks the donor will be placed on a national registry list where medical professionals can determine if he or she is a match to any patient looking for a donor.
The donor will only be asked to donate if he or she is a match to a patient. There are two ways a donation can take place: 80 percent of the time the cells needed for the transplant are collected via the blood stream (PBSC). The donor gives blood through one arm, the needed cells are filtered by an aphaeresis machine, and then the blood is returned through the other arm. The other 20 percent of the time, cells are collected directly from the bone marrow. The donor is given anesthetics for comfort, and a needle extracts the cells from the back of the pelvic bone. Both procedures are outpatient.
Contact: Anne Flynn (203) 570-0415 or .(JavaScript must be enabled to view this email address)
I am writing this letter to reach out to each of you to let you know what is going on in my life with my health and appeal for your support in helping me to find a friend, family member, altruistic person that is willing to undertake a liver donation that can possibly help to save my life.
A few weeks ago I was diagnosed with Hepatocelllular Carcinoma or liver cancer. This is an aggressive cancer that is usually treated through liver transplant. Patients are evaluated for transplant based on specific criteria, assigned a score and placed on a list to wait for a cadaveric donor - this usually takes anywhere between 12 and 18 months.
About 70% of patients on the list make it to transplant and many are successfully transplanted and live a normal life time with the help of immune-suppressant drugs. In my case I was originally listed yesterday and was very hopeful that with appropriate pre-transplant treatment I would be able to make it through the waiting list and be successfully transplanted. This morning I received a call from my doctor at UCSF that a second CT Scan had disclosed a second mass. The criteria for being listed for transplant states a single mass less than 5 cm or 3 or fewer masses less than 3 cm. The original mass they found was 3.4 cm and the second is 1.8 cm. Because there are 2 masses and one is greater than 3 cm I have been de-listed. I will not be placed back on the transplant waiting list unless the larger mass is downsized to less than 3 cm. This is possible through a process called chemoembolization.
However, it is not always successful and when it is it takes time for the tumor size to be reduced. Consequently the time to transplant is longer and the probability of my dying before a cadaveric transplant is possible is much greater. The alternative to being placed on the waiting list is to find a live donor. Someone that is willing and physically able to donate a portion of their liver which would be transplanted in me.
The requirements are that the donor have the same blood type ( I am Type O) and be in good physical condition, and less than 55 years old with no prior history of cancer or liver disease. The liver is an amazing organ that regenerates itself in a short period of time. Potential donors are put through a number of tests to insure that they are physically and emotionally able to donate and that their odds of a successful and complete recovery are very good. The procedure itself takes about 3 or 4 hours. A % of the liver is removed from the donor and placed in the recipient - me. The donor liver regenerates to its full size within 6 or so weeks and the hospital stay is generally around 5 days. Complete recovery with the ability for the donor to return to work takes 3 to 4 weeks. As with any surgery there are risks but these are very well known and controlled. The recipient procedure takes longer and the recovery as well is longer but the long term disease free survival rates tend to be very good. Most importantly, being able to receive a live donor transplant soon and not having to wait to see if chemoembolization will work to reduce the size of the mass so I can be relisted for a cadaveric liver (one from a deceased donor) is my best chance to live.
Please reach out to all of the friends you have and organizations you know of to help me secure a living donor transplant or if able to consider donating yourself. You all know me well enough to know I am a fighter and will not give in to this cancer. I am not ready to die and need each of your help to make this transplant a reality. Please understand that we're not asking for, nor do we need donations or fund raising, but rather for each of you to reach out to people in the community that might be a potential donor. Our insurance covers the entire process and that of the donor's and we are legally allowed and able to compensate for all lost wages. Our treating hospital is UCSF.
God bless each of you.
Ben Bernstein
Contact: .(JavaScript must be enabled to view this email address)
Over age 18, under age 55 - Healthy and physically fit - Type O blood (negative or positive) RH factor does not affect suitability to donate. Donor must be proportionately large enough, relative to the size for the recipient in order for the donated piece of liver to regenerate. If you are overweight, you may be considered if you can lose weight. Donors are limited to a body mass index of 30 or less. Body mass is based upon height and weight. You can NOT be a smoker and If you are serious about donating, you should stop drinking. You do not have to contact us and tell us you want to be donors. This info is confidential and between you and UCSF. During the entire screening process, all info is confidential and we will not be notified. If you choose to notify us, it's your option but if you disqualify or opt out which you can do so at any stage, we will not be told as this is your confidential information. If you pass all criteria, at some point we will all meet to discuss the financial arrangements, hospital dates, etc. The number to call for the first step is at UCSF's Transplant office at (415) 353-1888. Office hours: 9-5, Mon ? Friday. Advise the receptionist that you wish to discuss being a Live Liver Donor. A coordinator will get in touch with you and conduct a phone interview. A detailed medical questionnaire will then be mailed out to your home. Do not be discouraged by the personal and lengthy questions nor feel insulted if some of their weight related questions seem insensitive. Over weight isn't an issue but a fatty liver can't be transplanted and this is their area of concern when that topic gets broached. I'm not sure that they are real rigid on the age factor and likely wouldn't turn away a candidate still in their late 50's if healthy. The process can be intimidating so please understand that regardless of how far you go with the various tests in place, you can always change your mind and opt out without judgment from the team.
Next steps: Chest X-ray, blood work, EKG, ultrasound of abdomen. Blood vessels will be examined to determine they branch a pattern that allows removal of the right part of your liver. THE EVALUATION PROCESS WILL REQUIRE SEVERAL VISITS TO UCSF HOSPITAL. TESTING NEEDS TO BE DONE AT UCSF TO QUALIFY. You will not incur medical expenses related to medical tests, evaluations, surgery, hospitalization or post op care. All charges are billed to our insurance which is contracted with UCSF.
In addition, you must either have your own insurance to cover additional medical expenses or have an agreement with the recipients (us) that we will cover all related expenses in and out of the hospital that are not covered. We will make sure this agreement is in place to protect you.
Payment for organ donations is strictly prohibited by law and donors must not anticipate or receive monetary gain. That said, we will cover all expenses related to lost wages and living expenses during the recuperation period until the donor is able to return to work as well as compensate care givers, pet care services, house cleaning, etc. to eliminate any financial concern you may have and allow you to recover without feeling any financial duress. You do not need to keep us in your private loop because at some point UCSF will contact us if they feel you are a suitable donor and a meeting will then take place with all parties. A support system of your own (only needs to be one person) is needed for your own approval). This person needs to understand the process and post operative care. For Ben's best chance of survival, this transplant should take place within the next 12 weeks. This time frame should help you decide if it helps or hinders your process in making a decision. A minimum of 2 weeks prior will be required to get the testing and various medical meetings taken care of ahead of time. UCSF is very organized with this type of procedure.
SHOULD THE CHANCES FOR SUCCESS OR FAILURE AFFECT MY DECISION TO DONATE? You are volunteering with extraordinary generosity, to donate to save or attempt to save another person's life. It is important you understand that there is no guarantee that your sacrifice will actually save your recipient's life.
HOW QUICKLY CAN I BECOME A DONOR: Generally, within 2 weeks of completing every component of the evaluation process. Evaluation process is approx. 6 weeks long. If you are approved, you will need to donate a unit of your own blood within 2-4 weeks prior to surgery. Approx. 40 to 60 percent of your liver is removed. THE LIVER BEGINS TO REGENERATE ALMOST IMMEDIATLEY. MOST REGENERATION OCCURS WITHIN THE FISRT 2 WEEKS AFTER SURGERY. BY 3 MONTHS YOUR LIVER WILL BE NORMAL SIZE. The incision is large and the same for donor and recipient. It is call the Mercedes incision. The average hospital stay is up to 6 days. You may be uncomfortable for at least the first week. You may need as long as 12 weeks to fully recovery and be off work, the minimum time is 6 weeks. You need to be able to take up to 12 weeks off from work. You must remain close to UCSF for at least 3 weeks post surgery. UCSF is currently #1 in its success rate (highest in the country) (over 92%) with these procedures done on the recipient and 99% of donors go on to live a healthy and normal life.
