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

Updates from Seattle

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
Posted by at 4 comments:

Sunday, July 12, 2009

I am off to Seattle

Well everyone it is the night before we leave for Seattle and I would like to thank all of you from the bottom of my heart. I know its because of all of you that I have made it to this point. I am excited and nervouse at the same time but I know I am not alone. I am sure there will be good days and bad days but I will keep each and everyone of you in my heart always. We will try to post as often as we can.

God Bless we love you all.
Posted by at No comments:

Monday, June 22, 2009

"Still Spreading the word"

Hi Everyone,

We are were lucky enough to meet a very nice man from the North County Times that has been following Marks story please click on the link to read his 3rd installment in the North County Times

http://www.nctimes.com/articles/2009/06/21/news/inland/poway/z2dc566beadaab2e5882575d7007fdcc1.txt

Thank you to Gary!!!

And for those of you that live in SD please watch channel 7 NBC at 4, 5, and 6pm tonight and see Rory Devines interview with Mark :)

Love and Aloha,
Mark and Hilary
Posted by at 1 comment:

Sunday, June 14, 2009

We are on our way!!!!!!

Hi Everyone,

We have great news!!!!!! We have just recently learned that they have found a cord blood match for Mark. "Cord blood" meaning stem cells taken from a baby donors umbilical cord. I waited a bit to send out this blog because everything was still weighing on the fact that Mark still had to take a pulmonary function test and test higher the 30% if it was lower we would have been disqualified all together.

He took that test on Friday and tested 35% so that means "We are on our way"!

What this means is we will be leaving for Seattle July 13Th to start all the preliminary tests and prep for the transplant. This will take two weeks. If all goes well and the insurance gives us the final go ahead we will then start 6 days of intense Chemo, on the 7Th day total body radiation and immune system eradication. Mark will then be ready for transplant. We are looking at the whole month of August to be spent at the University of Washington Hospital. Marks complete stay in Seattle will be no shorter then 100 days from transplant so his relocation back to San Diego is mid November. We are nervous anxious and excited for this process to start and complete with a successful out come.

I just wanted to take a minute to "Spread the word". There is 5.4 million mixed race people in the United States at this time their are only 212 thousand mixed race people in the bone marrow database. This is an easy process to join the data base just a swab of your cheek cells and your in. The key is that you have to be willing to give to anyone. Just know that when you receive that call it is not a call to give and have your marrow sit on a shelf it is to give and "SAVE SOME ONES LIFE"!!!!!! At this time there are 6,000 mixed race people waiting for a match. Some of which will never find a match. Please help us to to "Spread the word". and help save lives.

http://www.sandiegobloodbank.org/bone_marrow/

Once again we are continue to thank our friends and family for your prayers, love and support. I will be blogging much more in the future when we are up in Seattle.

Much love and aloha,
Mark and Hilary
Posted by at 2 comments:

Wednesday, March 11, 2009

Bone Marrow Drive

For all of you that have been asking how you can enroll in the bone marrow program please see the following link. There is a bone marrow drive next Tuesday at Intuit a local company here in SD. Please "spread the word" to family and friends that would like to participate as well.

Thank you, much love and aloha,
Mark and Hilary

http://www.marrow.org/HELP/Join_the_Donor_Registry/Join_in_Person/drive_details.pl?drive_key=007-4-00408

Intuit
7555 Torrey Santa Fe Road
San Diego , CA 92129
March 17 2009
8am-2pm
Posted by at No comments:

Monday, March 02, 2009

GREAT NEWS!!!!!

Hi Everyone,

I wanted to get out this great news we recieved today. I finally was able to send in our State medical review form after I collected letter from Cigna, doctors in Seattle, UCLA and here in San Diego. They deemed our request urgent and gave us 7 days to review our case and get back an answer.

Well here it is. The Department of Managed HealthCare has overturned Cigna's decision to deny treatment for the transplant.

We are so happy. We know that this is just the first step and we now need to find a match. But we will have the funds to be fast and accurate.

Wow!!!! oh and more great news. Mark feels great!!! He has gained 15lbs and feels stronger and stronger everyday.

Thank you to everyone for your prayers, well wishes and support. We are lifted up daily and we will continue the fight. This is not over until we can say that we have a clean bill of health.

Love you all,
Hilary and Mark
Posted by at No comments:

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




Posted by at 1 comment:
Subscribe to: Posts (Atom)