My Story:


From Auckland

Up until 1998 Barbara was living a normal life. She had fun out with her friends, enjoyed her work as a nurse, and lived life to the fullest. However, everything was about to change.

One day at work she started experiencing severe lower right sided abdominal pain. She went to her doctor and ultrasound was ordered when the pain didn’t subside to rule out appendicitis. Just before the ultrasound was completed, the technician sneezed and the wand moved up to scan Barbara’s kidney. This accident meant that a previously undiagnosed mass around Barbara’s kidney was found. The doctor’s initial thought was kidney cancer. After a needle biopsy was performed, the diagnosis then was changed to Mantel Cell Lymphoma. The mass on her kidney was scar tissue from the lymphoma as well as a non-functioning kidney that had died several years previously due to an undiagnosed kidney stone. The treatment for lymphoma was intense chemotherapy of Adriamycin but sadly, this diagnosis was incorrect and she was treated for the wrong type of lymphoma. Due to the lack of pain response that she experienced, additional test was performed and was found that Barbara’s pain receptors don’t function normally. As her kidney was withering away due to a kidney stone, she was pain free and didn’t feel sick at all. CIPA was then a concern. After doing several nerve conduction series amongst other test is was confirmed that while she did not have CIPA her pain receptors were adequately sending correct responses to her nervous system. 6 months after the initial diagnosis and treatment of lymphoma (mantel cell) she was then diagnosed with brain cancer. She surgery where an Ommaya Reservoir was inserted into one of the ventricles in her brain for her CNS chemotherapy. In April 2001, Barbara underwent a stem cell transplant. Due to her chemotherapy and stem cell transplant she was told she would have to live with having a compromised immune system however, her doctor had assured her this was normal and not to worry. 10 years later, Barb moved to New Zealand with her husband Mark. During some routine blood work to check on her kidney function an abnormality showed up and she was called into to see her GP Dr. Jing Dong who expressed her concern about her lower immune system. “I really wasn’t that worried as I knew that I was immune-compromised but I just don’t get sick” was Barb’s reply. Due to Dr. Jing’s persistence, an appointment was made to see the Immunology team at Auckland City Hospital. Barbara again assured them that her previous doctor had said not to worry about her levels due to her previous illness. However, she was told that a normal level was between 7 and 8, her level was 0.017 – extremely low. Despite barely ever being sick, Barbara was in danger. To test her immune system, the doctors gave her small doses to check her immune responses. Her immune system didn’t respond. Her records were also checked and the doctors were amazed to see how little she was sick. For three months Barbara was put on amoxicillin btu her body still did not respond. The decision was then made to have her start Immunoglobulin at home once a week. They didn’t kick in very well; however, her response was going up slowly. She was also diagnosed with diabetes during this time too. With only one functioning kidney and diabetes as well, the decision was made with Barbara and her doctors to go once a month to the hospital for a 4 hour immunoglobulin dose. Barbara has been on this regimen for seven years now and has just reached a normal immune response of 7. She will be on this treatment for the rest of her life. Knowing its not an enjoyable experience, Barbara has decided that she will be positive despite all life has thrown at her. She is doing well, the cancer was in her body and not those of her children or grandchildren. Having the accidental initial diagnosis has been something she couldn’t change and so she is staying positive. Having battled breast cancer and undergone a mastectomy, all as a result of the wrong treatment all those years ago, Barbara wants to share that she has learnt to be grateful for life. “As long as my kids and grandbabies are ok, bring it on. I can deal with it.” Barbara believes that attitude is so important. It keeps you going. Focus on the positives in your life if you’re struggling. She also believes that making treatments or tests easier is important so advises others to keep hydrated when dealing with needles. Mindset is so important when faced with struggles – be thankful