When my husband found out he had this weird and rare disease called Amyloidosis, we combed the internet to find out everything we could about it and what we could do to cure it. Trouble is, there is no cure to date. Just treatment choices.
Roger's my husband, this is his daily journey through not only how he found out he had Amyloidosis, but we will take you step by step through the Stem Cell Transplant process.
In April, 2009, Roger was moving our stuff from Round Rock, Texas to Lincoln, Nebraska via a U-haul truck. That night he called me in Lincoln to say that he was overnighting in Wichita, KS and that his feet and ankles were so swollen he couldn't recognize them. I tought it may have been the seat in the truck cutting off his circulation over the 10 hour trip.
The swelling persisted month after month and now he was so fatigued that he couldn't go up a small flight of stairs. This from a very active man.
He finally broke down in October and went to the doctor thinking it may be heart related. His primary care physician Dr. Don Schmidt sent him to a Cardiologist to get checked out. Results came back "All Clear".
Dr. Schmidt said, "I'm just baffled". He said Roger did show that he was spilling protein into his urine. Thus the next doctor to see was, who was to become Roger's life saver, Dr. Jeff Marple...best darn Kidney Doctor in Lincoln! This was in February, 2010. Dr. Marple said yes, their was protein in Roger's urine but without a kidney biopsy, he couldn't determine what kind of protein it was. Well, Roger thought that was taking things a little too far and so he opted out of the biopsy. Dr. Marple said, OK we will just watch it for a while, but if it gets worse, Roger would have to come in for the biopsy.
Roger went in for the biopsy in the second week of July. It was an out patient procedure and all told, took about 6 hours including recovery time. Rog said it wasn't as big of a deal as he thought it would be and really didn't hurt at all. They take a minute piece of your kidney with a needle in a needle.
In the first week of August, Dr. Marple called and said, "please call me right away" and he left his Cell phone number! We knew it had to be serious for a doctor to give you his cell phone number. We called right away. He said that he had sent the biopsy to the Mayo Clinic in Rochester, MN. The labs just came back in it was a disease called Amyloidosis. There is only one test to detect Amyloidosis. It is called a CONGO RED TEST. Please Please Please, if you suspect any of these symptoms, make sure your doctor asks for this test. It is not readily done and this disease is misdiagnosed all the time because not all labs to the test on every biopsy, be it kidney, or liver, or heart or spleen (the mail organs involved). ASK FOR THE TEST!
There is an episode of "House" with Joel Grey in it that is about Amyloidosis.
We spoke to Dr. Marple on a Friday, by Monday we were at the Hematologist office (Dr. Berg). He said that a couple of additional tests needed to be done to Type the Amyloidosis. There are 3 major types:
Primary (AL) (This is what Roger has): Most common in the U.S. (Stem Cell Transplants or Chemo + Dex tablets) More about this later.
Secondary: Found mostly in underdeveloped countries
Familial: No Stem Cell Transplants for this group. They go straight to organ transplants
To Type the disease you will need a bone marrow biopsy, fat pad biopsy, echo cardiogram of the heart, liver, kidneys and spleen.
Bone Marrow Biopsy: This was done in the Dr. Berg's office, by doctor Berg. Roger said, "When will be schedule the biopsy?" Dr. Berg said, "We are going to do it right now". What???!!! Roger was just not ready for that answer. Dr. Berg had nurse come in and they bent Roger over and took a small amount of bone marrow from the back of his hip. Roger said it didn't hurt until the doctor pushed the needle into his hip bone. Then the doctor said, "OK, I am not going to kid you, this is going to hurt!" and it did! It was over in seconds after this point.
