Marian Kulju Beating AL Amyloidosis

First post: Apr 8, 2018 Latest post: May 28, 2023
About a year ago, Marian began having periods of general malaise.   Repeated trips to doctors attempted to treat common maladies, but not could keep her well enough for travel for family visits and events and other things she loved doing, such as camping and gardening.

By August of 2017, her episodes of malaise were more frequent and more severe.  Persistent visits to the doctor both in Michigan (where Ron and Marian had been spending the summer) and back at home in Albuquerque led to more aggressive investigations.  In the meantime, Marian's condition began to deteriorate more quickly.  Marian experienced significant weight loss, gastrointestinal issues, dizzy spells, passing out and constant malaise.  Eventually, Marian visited oncologists and a nephrologist.  Ultimately, Marian was diagnosed with AL Amyloidosis, Lambda Restricted.  This is a rare disease of the bone marrow that results in improper production of protein fibrils that can progressively damage internal organs..  Left untreated, amyloidosis is fatal.   Because it is rare -- less than 4,000 cases diagnosed annually in the US -- and no two amyloid patients present the same, AL Amyloidosis is very difficult to diagnose.

AL Amyloidois treatment calls for a four month regimen of chemotherapy followed by a stem cell transplant.  Unfortunately, her local oncology team does not perform stem cell transplants.  There were several options for treatment across the country that are approved by Ron and Marian’s insurance coverage.   M.D Anderson Cancer Center in Houston, one of the most prestigious cancer and bone marrow disease hospitals in the world, was selected,  Other things being equal, Houston offers the advantage of being near to daughter Rachel, who lives about 40 miles from M.D Anderson Cancer Center.  Rachel has already been involved during Marian’s consultation visits and will continue to support Ron and Marian throughout the treatment.

Marian responded very well to the chemotherapy, with important blood markers returning to normal values. Marian is now ready to have the transplant performed in mid April.  While not a riskless procedure, it is well documented that this will offer the best long-term prognosis and help her (and Ron!) resume the life they had before Amyloidosis. 

Marian will spend 6-8 weeks in Houston for the procedure and recovery.  Most of Marian’s time will be as an inpatient, so Ron will be staying very nearby in a rented apartment.  Marian will be able to spend the final ten days of recovery in that apartment.  Rachel and family will be visiting and assisting as necessary.  Marian's Dad has plans to come and lend a hand and her sister will be at-the-ready as well. 

Caring friends and family have arranged a live-in schedule for dog sitting and home maintenance and protection for the duration.  Thank God for loving family and friends!

This course of treatment won’t be easy.  But Marian has a positive attitude and is at peace with the fact that God’s plan for her will prevail.  God willing, this treatment will give Marian the advantage over Amyloidosis.  We continue to pray for continuing treatment advances for this disease.  It is not unreasonable to expect that a cure for the disease will be found in the next few years.

 We appreciate all prayers and well wishes, as we really do believe they are helping to provide healing, strength, courage and hope in the face of the diagnosis and the trials necessary to beat this.

Ron and Marian’s Houston apartment address is:

8181 Fannin St. #2612

Houston, Texas 77054

We will provide room information as we get it.

 Ron, Marian and Rachel will update here as we embark on this phase of the journey.

 Stay tuned…