Cruisin with the Real"s

Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07

Loma Linda Medical Center

Loma Linda Medical Center
Where the magic happens........

Thursday, August 28, 2008

My friend in Liver Support and Education




Dr. Richard Darling, a California dentist, founded the FAIR Foundation after surviving hepatitis C, diabetes, cirrhosis and cancer of the liver, coma, heart attack, hepatorenal syndrome, Muscular Dystrophy (myasthenia gravis) and three liver transplant operations.



Doc Darling as he is known is a wonderful, knowledgeable, compassionate man.

He started The FAIR Foundation because of the inequities in disease research spending by Congress and the National Institutes of Health (NIH) and because of America's organ-donor crisis. Here is a link to the Fair Foundation's website. I highly recommend you visit the site and support the foundation.

I met Dr Darling at our Loma Linda Liver Transplant Support Group and he invited me out to Palm Springs to attend the local support group that he started and runs there. He and I have also had conversations regarding the benefits of my getting listed at Scripps in San Diego as well as LLU.

I decided to go visit his support group earlier this month as I wanted to meet some of the patients that are listed or have been transplanted in San Diego at Scripps. He had told me that quite a few of his group are patients there.

I had a wonderful drive out there. I love Palm Springs area. It is such a different desert than ours. I know that sounds really weird to those of you who aren't familiar with deserts....

We live in a HIGH desert, elevation 3000 ft. temp ranges are 100* to 60* summer and 60* to 30* in the winter. YES, we do get some snow in the winter. It is hot but not unbearably. For you gardeners the freeze in the winter kills us, well, actually it kills most of our plants that can survive the summer heat.

Palm Springs is a LOW desert, elevation 475 ft. temp ranges 115* to 75* summer and 70* to 45* winter. It is blistering hot in the summer, making difficult to get in your car let alone touch the steering wheel. But because it doesn't freeze there in the winter the landscaping is beautiful. Lots of Desert and Tropical Plants, Palms, Bougainvillea, Citrus Trees, Cactus and wildflowers. Oh, and the grass. Do you know how many golf courses they have? Well, I don't and I am not looking it up but there are plenty...Anyway, it is very green and beautiful for a desert with some majestic mountains as a backdrop that turn shades of purple as the sun sets.

Our deserts are divided by the San Bernardino Mountains and a 90-120 minute drive. Loma Linda is between us.

Ok, back to my visit there. I really enjoyed meeting the people in the group out there and seeing how it is run. It is so helpful to me and to be with others who are living with the same disease as I. We all have different diagnoses and reasons for having our livers fail and will experience different versions of the same symptoms as we go through this. We will also have very different stories as to what happens to us and where are futures end up.

I find the more I learn the more I want to share as I remember how extremely difficult it was for me to get ANY good information on what was happening to me.

Dr Darling made me feel right at home as he introduced me to his group. I do plan on attending when I can.

Regarding his book, Coma Life, I am in the middle of it right now and it has me riveted. Here is a link to how to purchase it...All the proceed to go support the FAIR foundation.

1 comment:

Dr Richard Darling said...

Nancy, as President & CEO of the FAIR Foundation I write on behalf of our 27-member Board of Directors consisting of transplant surgeons, medical directors, et al http://www.fairfoundation.org/Board/board.htm in thanking you for bringing to your Blog readers our efforts for equitable bio-medical research funding by our government for all diseases without favoritism for HIV/AIDS and for new organ-donor policies to reverse America’s organ donor crisis.



Indeed, today there are 99,467 patients like you on the waiting list today. http://www.unos.org . Every hour one of them dies, and/or one who was on the list but was removed due to becoming too sick to be transplanted dies—that’s America’s organ-donor crisis resulting from our government’s reliance on the sole organ-donor policy of “altruism.” From Jan to May of this year there were only 11,517 transplants and 5,805 donors. The math is quite simple. With almost 100,000 waiting it is strikingly obvious that altruism is failing miserably to meet the demand for organs.



If one was a physician in charge of an emergency room after a catastrophic event and one patient was dying every hour with 100,000 waiting to get in the door would the physician say, “We don’t need new policies, our efforts are working well”? Of course not, he’d be fired, yet that is the attitude of those presently in charge of our organ donor system and the time for new organ-donor policies has passed long ago—pun intended.



Thank you also for your kind words regarding my book, Coma Life, which has now helped thousands of patients in need of transplant. Yes, all revenue from book sales does go to the FAIR Foundation and specifically to FAIR’s effort to have new organ-donor policies instituted to reverse this organ-donor crisis. If the policies we are recommending, and which are supported by many eminent physicians and organ-donor advocates, are adopted nationwide, we believe the 75,000 waiting for a new kidney and another 500,000 on kidney dialysis but NOT even on the list yet would have their new kidney within five years-easily. In addition, those waiting for other organs would have their time on the waiting list shortened dramatically. You viewers can see those in favor of these policies and advocate for the policies easily using their zip code and by copying a prepared letter at http://fairfoundation.org/organdonation/contactcongressfororgandonation.htm



I would like all your readers to know that the FAIR Foundation is a tax-exempt organization that has no paid employees—we are all volunteers and we now have thousands of members and supporters in all fifty states and DC.



Finally I’d like to thank you for coming to our FAIR Foundation Liver Disease & Transplant Support Group meeting recently. Sharing your extensive knowledge of liver disease and transplant was a real benefit to our group members and you also are of great assistance to the patients in the Loma Linda University Medical Center’s support group where you regularly input valuable information. Add on to those laudable efforts your yahoo group for transplant patients and this excellent Blog that helps patients world-wide and one can only marvel at how one in need of a new liver like you can be so productive.



I look forward to visiting with you at our next support group meeting and …in the ICU after you get your new liver.



God Bless,



Dr. Richard Darling, DDS

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