Dickson Notes

In January a family friend, Dr. Dickson, came and presented my Dad’s condition and options to our family. These are the notes from that meeting.

January 1, 2009

Dear Family,

I can’t believe how much the word family is coming to mean to me this Christmas Season.  My testimony of the strength we can give to each other has grown in leaps and bounds lately.  I love and appreciate each one of you so much.

I am writing to recap some of the things Dr. Dixon said at our family meeting over the holidays.  Wayne suggested we put in writing what was discussed so we could share it with any of our family who were traveling or not in town that day.  I thought that was a great idea.  My kids are helping me get a blog started too.  I will send you our link as soon as I get it going.  I think blogs are great ways to keep up with everyone.  I love your blogs!!!

Dr. Dixon is our bishop.  He is an oncologist ( cancer doctor)/hematologist (blood disorders doctor).  After we found out I could not be a live liver donor for Rob, he met with us to discuss our next options.  He suggested we organize a family meeting over the holidays to share with the family our options for Rob’s health coming up in the next few years.  He felt that miracles were possible and that letting family know of the possibilities for those miracles could only help in allowing the Lord to provide a miracle. 

You need to know Rob and I are ready emotionally for this next step in his health.  We have had several years of preparation, as we have known we would face this time in our lives for a long time.  It has taken awhile, but at this point we are totally willing to accept the Lord’s will concerning our lives and his health. 

We learned of Rob’s liver disease fifteen years ago when Rob had his colon taken out because they found pre- cancer cells growing. Rob had been diagnosed with colitis after his mission and had lived with colitis for 14 years when they diagnosed atypical cells in the colon.  For some reason, unanswered in the medical profession, some people’s bodies attack themselves and produce inflammatory diseases.  Ten percent of the people with colitis also have PSC (primary sclerosing cholangitis) liver disease.  Fifteen years ago we were told that Rob would need a liver transplant within a year. We have been the recipients of miracle after miracle since that time.  Thanks to many of your prayers. 

Fortunately Rob’s disease has progressed slowly over the past fifteen years but recently he has begun experiencing end stage liver disease symptoms and doctors have recommended he become listed for liver transplantation.  End stage liver disease symptoms he has begun experiencing are severe itching (pruritus), irregular sleep patterns, fevers and chills (which gave us another miracle – a bile duct drain to drain the bile from the liver, helping him continue to function quite well), weight loss , severe fatigue, esphogal variceal bleeding,, and enlarged spleen.  Final stage symptoms, which he is not experiencing yet, include jaundice (high levels of bilirubin) kidney failure, excessive bleeding and lack of clotting(coagulopathy), distended stomach (ascites), and high levels of toxins in the body (encephalopathy) which causes disorientation (encephalopathy does go away after transplant thank goodness).

Dr. Dixon reviewed the options available to us for a miracle.  They are the following five options:

• 1. Deceased Donor – In this scenario we wait for a deceased donor. In this option, Rob is listed for transplantation. (He is now listed at University of Wisconsin Hospital in Madison, Wisconsin, University of Colorado Hospital in Denver, Colo., and University of Utah Hospital, in Salt Lake City, Utah.) Then we wait for his MELD score to get to 21-25. The hope is when he reaches this MELD score, a deceased donor will be available and he will receive the next liver. MELD score stands for Model for End-Stage Liver Disease. Generally patients whose MELD score gets that high are about seven days from death meaning they are very, very sick and experiencing most symptoms of end stage liver disease. Some do not make it through the surgery, but many do. Recovery from surgery is more difficult because overall health has deteriorated so much to get to transplant. One of the problems with Rob’s disease is that his MELD score does not go up. The system of the MELD score is biased against people with PSC because it does not take into consideration the factors associated with PSC. A normal person has a MELD score of 6 and Rob’s is currently 10-12.
• 2. Directed Recipient – There is a rule written in the allocation of livers that the family of a head trauma (brain dead) family member who is going to donate a liver, can designate who the recipient of that liver would be. There needs to be a family or community connection. Someone from the family or community would need to ask that the family designate the liver would go to Rob for example. In that case, Rob would not need to have a high MELD score he would just need to be listed (which he is).
• 3. Screen for Cancer – Continue to do brushings and liver biopsies to test for cancer, and continue to treat esphogal variceal bleeding caused by portal hypertension.(an increase in the pressure within the portal vein)., and enlarged spleen complications. This is an ongoing process that Rob experiences every three months. It takes a lot out of him and puts him down for a couple of days every time they do it. Doctors do what is called an EGD (a scope down the throat) to check for esphogal veariceal bleeding. When needed, they put bands on the blood vessels to control the bleeding. They also go through the biliary drain (a tube that goes from the outside of Rob’s chest, into the left side of the liver, through his liver and out to the small intestine) to get brushings of sample tissue or to take biopsies from the liver to check for cancer. None of the cancer screening tests are great tests for finding cancer in the early stages (like a needle in a haystack). Liver cancer is usually a very aggressive cancer and is difficult to treat. But, this is an area the Lord could provide a miracle. If the doctors could find pre-cancer cells, he would then be given 20 MELD points and moved very close to the top of the list. Then after several months he could qualify for a deceased donor liver and may not have to get to the very high MELD scores needed for deceased donor.
• 4. Live Donor – At the University of Colorado Hospital in Denver, Doctor Kam is one of the best surgeons in the world doing live donor transplants. They began doing live donor transplants in an attempt to meet the ever-growing demand for livers and the high MELD scores. We looked into this because I was a match. Rob is A+ blood type and I am O blood type -making me a universal donor. I had hoped I could be the donor. I was rejected as the donor because my liver has an irregular bile duct, which would need to be severed in a way that would be unsafe for me. It was a very sad day when I found out I could not be the donor.
• 5. The Lord could just take away the disease without any intervention and he would be healed.

Because Dr. Dickson has worked with patients with end-stage liver disease, his least favorite option is option 1.  He said it is difficult to recover from so many complications that arise from being so sick.

We have faith the Lord’s will can and will be done concerning his health.  We are ready to accept his will whatever it may be.  But, I do feel often the Lord’s will is accomplished through other people here on earth and particularly through our families.  If there is a miracle in store for Rob, we all may be a part of allowing that to happen.  Thank you for your thoughts in our behalf. 

Love you all.

Rob and Tracey