Submitted By: helmut lenzinger
I was very lucky, because I had no symptoms and the only reason I found out, was a routine check up for a life insurance policy to cover my little boy, born in July 2000, just in case something should happen to me or his mother, my wife at the time. I was diagnosed in the fall of 2001 with primary amyloidosis. My kidneys spilled too much protein at that check up and it went on from there. From the kidney specialist to the hematologist to the Tom Baker Center is where I met Dr. Douglas Stewart. I was explained the procedure and off I went. I went from test to test, had my stem cells harvested and went into the hospital on Dec. 4th, 2001, on the 5th I received a large dose of chemo and on the 6th my stem cells where returned into my body.
I recovered nicely besides the usual hair loss and a little mouth soreness and the second week after chemo was no fun either, but overall it went well. I have been given 25oml platelets on the 16th and 17th of Dec. 2001 and left the hospital on Christmas Eve that year. Since that time, I have seen my hematologist and kidney specialist every 3 month and have had a few bone marrow biopsies on the wat to keep an eye on those amyloids.
The hematologist was happy with the results and I only had to see him every 6 month from then on. The kidney specialist tried different drugs, like Lipidil, Lipidor, Crestor etc. to control my cholesterol but the side effects of severe muscle cramps and elevated C.K. factor, killed that program. referred to a cholesterol specialist I also tried Niacin which helped bring the cholesterol from 19.2 down to 16.8 but again the muscle cramps came back and the C.K. went up again. so we stopped after 3 month before there was too much damage to the muscle tissue in my body.
Going back to my kidney specialist with more tests, he recommended a kidney biopsy. I had that one done on March 15th 2006 and the results where not the best ones. Amyloid have been found in the kidney area and where destroying the function of my kidneys. Therefore he send me to my hematologist where I was told that it is a large probability to repeat the whole thing again, I had to go through in Dec. of 2001. The final word will come from the new man in charge at the Tom Baker Center Dr. Bahlis and I will see him on April 12th 2006.
I hope and pray to God I will get better news with alternative solutions, but all I can do is hope now. Thank you for given me the opportunity to tell my story and I will update it, when the time has come to do so! Second Time Around – Updated Oct. 2006 My first story was ending, with the month, when I was diagnosed the second time with “Primary Amyloidosis”. I had met with my new transplant doctor at the Tom Baker Cancer Center and was given the news that the Amyloid have appeared in my kidneys again and that we have to a second chemo-stem cell transplant.
It had come back after 4 1/2 years (Dec. 2001) and it hit me like a rock. Knowing what I have to go through made it all a little easier but did not remove the fact that I have to get another dose of chemo and another stem cell transplant. The good thing was that I had 9 million stem cells in the hospitals freezer from the last transplant and I did not had to go through another harvest. I was booked into the hospital on May 2nd 2006 for the line insertion and received chemo on Wednesday and my own stem cells on Thursday.
The chemo dose went from 400 down to 320. After the good first week the following weeks where not so nice and I lost lots of weight because I drank a lot but did not eat. I also had on and off high fevers because of platelet and blood transfusions but the doctors and nurses did take great care of me and I left the hospital the end of May. I went with my girlfriend to Europe in July and gained great mental strength seeing my parents, the rest of my family and many friends. My physical strength is coming back slowly but consistent and I feel ready to get back to work in October/November this year.
I hope I could help you, reading this story, energizing yourself, if you’re a patient, and giving you hope that there are angels watching out for us. Thanks’ for letting me tell “part two” of my story and my god bless you all. Email: firstname.lastname@example.org Register with ASN Physician Patient Caregiver Veteran ASN Brochure English (PDF) Spanish (PDF) Case Histories Physician Heal Thyself ! The following is my daily journal as I wrote it during the treatment: May 28, 2005 – The Party— He said he treated, “a few” amyloid patients. To myself, I thought, “a few won’t do More Case Histories International Sites Australia Canada Finland France Italy Germany Germany The Netherlands Switzerland United Kingdom Israel Portugal