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My First Blog

Hi Everyone,

My name is Mark Buenconsejo. I currently live in San Diego. I was raised in Hawaii and moved to San Diego in 1998 to be with my wife Hilary. I have 3 daughters. One lives in Vegas, one back in Hawaii and one here in SD. I have also been blessed with 2 grandchildren. My dad and mom, my brothers and one of my sisters lives in Hawaii. I also have a sister that lives In Texas. My real mother lives and supports me here in California.I have started this blog to chronicle my life living with a disease called Systemic Scleroderma, a terminal disease.

Prior to Scleroderma I was very active, surfing, playing golf and all around in good health.I was given my positive diagnosis in June of 2006. The term Scleroderma means hardening of the skin. Scleroderma, is a disorder accompanied by widespread vascular deterioration and tissue loss. The body attacks its own tissue, causing an overproduction of collagen, ultimately ending in pain and death. Some forms cause significant thickening, hardening, stiffness and swelling of the skin and joints, along with extreme fatigue and pain. It attacks the internal organs resulting in damage and failure of the heart, lungs, kidneys, esophagus, and intestinal tract. Currently there is no known cure for systemic Scleroderma. 70 percent of patients with Systemic Scleroderma die within 5 to 10 years. Over 300,000 people have Scleroderma, and out of this 10 to 15 percent have severe Scleroderma. I, unfortunately, have the severe type of the disease. It is currently in the tissue of my hands, arms, face, torso, legs and feet. It has also started moving through my internal organs, my lungs and my esophagus. I am currently unable to work due to the severe discomfort and crippling effect on my hands.

My doctors’, my wife and I have decided it is time to take charge of this disease. There is a study starting in Seattle, Washington that will use an allogeneic stem cell transplant. This is a bone marrow transplant taken from a donor. The hope is that if the doctors’ will bring my immunity down with chemotherapy and radiation, introduce stem cells from a donor’s marrow, that my immunity will come back stronger without the disease. The doctors are very hopeful and so are we. This is a lengthy process and not without risk. It will be very expensive for me and my family as we will have to relocate to Seattle for an undetermined amount of months while I am undergoing treatment. We are currently working with our insurance for approval of the procedure itself, which in most cases is the deal breaker because the cost is very prohibitive.

My family and friends will continue working on fundraisers for my wife and me for travel expenses, housing, unexpected medications and treatments, and day to day living. With me not working, it has become more and more difficult to survive in this economy. Not to mention to survive with Scleroderma.

Please keep checking back for more events for we will not stop until we have gotten the approval from the insurance and we are up in Seattle.

My wife and I would like to thank our family for there support and prayers. We would also like to thank all of our friends that have added us to their prayer lists and continue to help us during this time. Without you all we are not sure what we would do. Most of all we would like to thank the Lord for he is always looking after us and giving us the strength to get through this.

Sunday, January 11, 2009

Continue to "Spread the Word"

Hi Everyone,

Mark and I want to thank everyone for your support.  We have some great news and some not so great news.  

First of all the great news.  Mark has gained a healthy 9 pounds.  I am so proud of him.  He has been taking some herbal health food as a daily supplement.  He looks and feels great.  

On to the disappointing news;  I have received news that Cigna our insurance company has refused to look at our last appeal.  They said that we have exhausted our appeals and that they will not be looking at the last recommendation of our doctor in Seattle and UCLA.  It has been recommended by our doctors in Seattle that we should now seek legal council.  

Although this is bad news this is news we expected at this point, I assure everyone we are not going to give up.  We will continue to fight and we ask that everyone continue to "Spread the Word".  I recently sent out an email that asked everyone to sound off about an article written about a teen age girl that lost her life waiting for Cigna to approve her liver transplant.  It took a march from friends and family and I believe a calculated closeness to the end of her life.  Cigna conveniently overturned her denial just hours before she slipped into a coma and died.  We can't let this happen to Mark.  

Always thank you for your prayers, your well wishes and aloha.

Hilary and Mark

Article of the seventeen year old girl that lost her life waiting for Cigna




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