evnme
My little lamb
Member since 8/05 12633 total posts
Name:
aka momma2b
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Live liver donor needed, Please help!
Hi all,
I got this letter from the President of my graduate school who is concerned about a friend of his.
If anyone can help or knows someone that can help, we would greatly appreciate it!
TIA
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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
LIVER DONOR CRITERIA:
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.
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Jessica
I'm a mommy :)
Member since 1/06 7322 total posts
Name:
~Jess~
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Re: Live liver donor needed, Please help!
hmmmm
i'm type o and i'm currently not working (only at my uncle's part time since i was laid off last month)
if i donate, lets say down the road a family member needs a liver, would/could i be able to do it again?
Message edited 1/23/2008 1:24:23 PM.
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evnme
My little lamb
Member since 8/05 12633 total posts
Name:
aka momma2b
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Re: Live liver donor needed, Please help!
Posted by Jessica
hmmmm
i'm type o and i'm currently not working (only at my uncle's part time since i was laid off last month)
if i donate, lets say down the road a family member needs a liver, would/could i be able to do it again?
thanks ladies.
i dont know the answer to your question.
I guess you could ask the doctors involved in the transplant if you are interested in helping.
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