Hello Everyone,
Thanks so much for sending additional emails and phone numbers for our communication tree. It is much appreciated. The following information is intended to bring us all up to speed regarding Brian’s absence from us at OLA. It will be redundant information for some who have spoken to Brian and Mo recently and brand new to others so bear with me if I am telling what you already know. I will start at the beginning and try to be concise.
Health issues:
Brian has been ill for some time now necessitating his departure from his usual activities several weeks ago. He was hospitalized on 10/30/07 with liver and renal (kidney) failure. Treatment consisted of supplementing the liver function to supply his body with the albumin necessary to sustain his life, clotting factors to reduce the risk of bleeding, pain management and medications to flog the kidneys into doing what work that they could. Brian underwent a total of 4 procedures (paracentesis) to remove many liters of fluid from his abdomen. With time, he was able to regain some kidney function. Brian was discharged home on Monday, November 26th. He remains in liver and kidney failure necessitating strenuous dietary and fluid restrictions. He continues on a host of medications to support his vital functions and assist his kidneys with their work.
Brian has been diagnosed with End Stage Liver Disease and hepatorenal syndrome. Initially, the hope was to provide enough support to create time for any healthy liver cells to regenerate. A liver biopsy has not yet been done due to the risk of bleeding. An endoscopic approach is planned for this coming Friday, along with another “tap” to pull fluid from his abdominal cavity. The biopsy will render information that helps to determine whether or not Brian is a candidate for a liver transplant.
Prognosis:
Without a liver transplant, Brian’s condition is fatal. In the event of a successful liver transplant most patients have return of liver and kidney function and a return to near-normal life. This is our hope at this time. Brian is in the process of obtaining a referral to a tertiary teaching hospital that has a liver center. Loma Linda, UCSD, USC and others are under consideration. Some centers provide an opportunity to utilize an external devise that filters toxins from the body, increasing the chances of survival while waiting for a suitable liver donor.
Other info:
Brian is in good spirits and sends his love to everyone. He often speaks of how much he misses his music at OLA and everyone associated there. He tires easily and wishes that he could contact everyone personally. He is grateful for all the prayers and messages. He is acclimating to being home again and working to observe all aspects of his treatment regimen. Maureen has been able to take this week off from work, easing the transition as much as possible. Daniel and Drew have put up the Christmas tree and are working to bring the spirit of the season into the house.
Plans and Misc. Issues:
· Brian saw his primary care provider yesterday and will see the GI specialist on Friday for the liver biopsy and the paracentesis. He has been having some nausea and vomiting from taking oral medications. This also troubles him when he over-tires.
· Maureen is gathering information on liver centers and working to further the referral with the insurance company. She is also in the process of helping Brian with his Will and other business. An attorney friend is helping with these issues.
· Maureen has been feeling poorly due to her ongoing struggle with Celiac Disease. She also saw the GI specialist yesterday and is struggling to stave off a relapse in the face of so much work and stress.
· A friend of Roger and Janet Samuels is assisting with access to a transplant specialist at Loma Linda.
· Eddy Meyer is working on selling Brian’s partially restored 1966 pickup truck. (If you know anyone who is interested send us their contact information).
· Mike Carroll has written a lovely piece for Brian. It is based on Cardinal Newman's poem, "Lead, Kindly Light". http://www.musicarroll.com If you click on the MP3 then on the PDF you can read the music and follow along. Brian heard it today and has requested that the group learn it to sing for him.
· Mike and Leandra Carroll are working on a web site that will allow us to post messages, pictures, video etc. in the hopes of achieving more efficient and less taxing communication with Brian and Maureen. Stay tuned for further information.
What can we do now?
· First and foremost, continue to pray and fast and seek God’s mercy for Brian and Maureen and the boys.
· Check your email for updates and other information
· Brian asks that we remain especially close to one another and that we all cherish and support one another.
· Brian LOVES mail so cards and letters are especially appreciated!
Brian and Maureen Carlson
30135 Via de la Mesa
Temecula, Ca. 92591
· Refrain from visiting Brian and Mo if we have colds, flu or have been in contact with someone who is ill. Brian is fragile and catching a virus could create a very serious complication.
· Increase our knowledge about end stage liver disease and available treatment options. Keep our eyes and ears open for opportunities.
· Pray that it will be determined that Brian is a candidate for a liver transplant and that we will have a successful search for a suitable donor. Have a look at the USC liver center web site to help get started in our understanding of this disease and the transplant process. Consider being tested as a potential donor when the time comes. http://128.125.97.89/divisions/hep/index.html. Click on the Live Donor Transplant link for more information.
I’m sure that I have forgotten something but will end for now. Keep sending contacts for our distribution list and web site usage. Start thinking about uploads for the pending web site. Any other suggestions and ideas are much appreciated. I welcome any questions and will do my best to find answers and make connections.
With thanks to God and in the love of Brian.