Dec 19, 2018 Latest post:
Apr 24, 2020
Amyloidosis...what in the world is that?! That is what most of us thought to when we were given the final diagnosis after several doctor visits and what seemed to be endless tests. What started as her legs really bothering her and generalized weakness, triggered general tests at first. With some abnormal results, more tests were ordered. From that referrals were made and more tests were ordered. From urine collections to blood work to bone marrow biopsies, kidney biopsies and more...appointments were made and more and more results were gathered. Eventually the diagnosis of Amyloidosis was given and the referral to Mayo Clinic in Rochester was made. Dr. Warsame was so upbeat at the first appointment and really hit the ground running with this. The process was explained and seemed daunting, but she always explained things at a level to make it understandable. She explained that the best course of treatment for this was to undergo a stem cell transplant. And so after more evals to make sure that the Amyloidosis was not too advanced and had not harmed organs past the point of no return, approval was given to proceed with the stem cell transplant. Well, that is once the insurance company approves it!
The stem cell transplant process was explained like this: 1. Central line placed (port). 2. Meds given to make your body mass produce cells in your bone marrow. 3. Cells will be harvested via apheresis over three or four days. 4. After enough cells are collected, Chemo starts. 2 days of intensive amounts of chemo to kill off pretty much all cells. 5. The harvested stem cells are given back. Considered DAY ZERO in the transplant world :) 6. For the next 2-3 weeks, the stem cells will travel into the bone marrow and will start making new cells. Daily test and exams will be necessary to ensure it takes and that there are no signs of infection as the immune system is regenerating. 7. Weeks 3-5 will include frequent blood tests and appointments, lingering side effects from the chemo and regaining energy! 8. Possibly returning home after 6 weeks or so in Rochester.
Stay tuned for updates on this adventure! Prayers and positive thoughts are appreciated!
The mailing address for where Cris and Henry are staying during this is: Gift of Life, ATTN: Cris Black #150, 724 2nd St SW, Rochester, MN 55902 ABSOLUTELY NO plants or flowers are allowed!