Hi Everyone,
We are sorry we have not posted in a bit, things have been very hectic up here. Just a note we post a bit more on FB if you get a chance.
So just a little of the madness, we have seen every Doctor for every part of Marks body, given a ton of blood, been poked prodded and abused and he is still hang'n in there. All in all everything looks good, but I must say we are still at the mercy of the insurance. They have the final say and our schedule has been held up because of them. So as of today the Insurance has until Monday to hopefully say "yes". If so we are back on track preparing for Marks hospital stay and the start of Chemo. Chemo is so far scheduled for Aug 12th and the transplant is to be given August 18th.
We would like to say thank you as always to our friends and family for your support, well wishes and prayers. We would not be this far if it were not for you.
Love and Aloha,
Hilary and Mark
We are on our way!!!!!!
Look below for our updated posts.
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.
Friday, July 31, 2009
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4 comments:
i am so sorry to hear of mark's death. my sister vanessa, who fought systemic scleroderma for 3 years, was scheduled to undergo an allogeneic stem cell transplant this past summer at Fred Hutchinson in Seattle, but died just weeks before the procedure was scheduled. My family had been following Mark's progress on the MJB blog, and we had hoped to donate money that had been donated to Vanessa's procedure and recovery, to Mark, in the aftermath of Vanessa's death. I was devastated to find out Mark had passed away. I am so deeply sorry, and I wish you and your family comfort and peace. Be well and take care of each other.
With love and sympathy,
Natasha Garber
aloha from oahu. i too have systemic sclero. in 1999 i had anticentromere ana's but no symptoms. for many years i had mild CREST, then after getting flu in 2006, i developed full blown ss. immediately i flew to riverside, ca to see doc who believed in antibiotic thearpy and started iv clindamycin, then returned to oahu to complete iv therapy. definitely saved my life as the disease ravaged my body like a forest fire. today, i take minocycline 100mg bid. diseased slowed, few contractures, ulcers healed. still low on energy but functioning, and most importantly enjoying hawaii again, seeing friends, and attending to adl's. nobody can look at me and say "she gonna die soon". they say "hey sista, u walk funny but u doing good". stay away from all those other drugs. I've read ALL the drug studies of penicillamine to ritaximab. too toxic, esp on ur kidneys. antibiotics now regularly used in RA. forget the stem cell transplant; don't be a guinea pig! u know, da kine they hunt on big island and slaughter with knife. i am followed by good PCP in hawaii and see rheumatologist once a year who believes in antibiotics at USC in LA. i adamantly REFUSED to see rheumatologist in hawaii. i got lots of pressure to see them, but forget it, i ain't gonna die for anyone's experiment. so much pressure from insurance company that i thought they were going to euthanize me if i didn't go see local rheumy. antibiotics, please read this link: http://www.roadback.org/index.cfm/fuseaction/home.main.html
aloha again, hey i just wanted to apologize for my previous post. i hope u didn't find it offensive and i shouldn't have been so harsh in my choice of words. i'm just very frustrated when patients are not told or are unaware of other treatment options besides chemo, stem cell. anyway, good luck with ur treatment and apologies again, imimi
Anonymous..........
My husband has been diagnosed with Systemic Scleroderma and has been living with it for 1 1/2 years. He hardly ever complains but he is dealing with fibrosis in his lungs, Reynauds, and is taking blood pressure meds to keep his pressure in tact.
Unfortunately, I stand by helplessly most of the time trying to re-assure him. Lately, he has started to experience severe gerd and being ashmatic, he sometimes has a hard time breathing.
He is taking meds of different kinds to control his symptoms. The disease is progressing and his fingers, hands and legs are swelling and becoming very tight.
He see a regiment of doctors to control the affects.
My sympathy to all patients suffering from this terrible disease.
My faith keeps me going and I hope that new discoveries will come about to help those suffering from the disease. My prayers to all.
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