My name is Kim McLean and I am the Queensland support group facilitator (pictured in the middle of the photo on left with my arms happily around Simone and John Leyden). I am 43 years old and married with a 22 year old son and 18 year old daughter. I have been in this role since approximately July 2011 when the group in Brisbane first began. My journey has been long with many ups and downs.
When I was 16 years old (1990) I was quite sick and always tired, I was always vomiting. Eventually I was diagnosed with glandular fever, the doctors said it was very unusual to have the vomiting I had so they never looked for it. For many years after that, I would get nausea, constipation, diarrhoea, dizzy spells, tiredness, clamminess and red flushing in my hands. In both my pregnancies my platelets dropped very low and I lost weight from continually vomiting.
At the age of 25 (1999) I had my second child however my period stayed for about 14 weeks so I was sent for further tests. It was then a doctor ordered blood tests for my Platelet serotonin, 3 months later on my follow up visit with an 8 month old baby I was told I needed to stop breastfeeding and go for a 3 day otreotide scan to look for a carcinoid tumour. I was told it’s not cancer, we need to just find the tumour and take it out. I developed gallstones and had my gallbladder removed at 26 years old.
Long story short , scans were all clear and have continued to be even now including gallium scans, MRI’s, CT’s etc. My symptoms also now include wheezing which often leads to hyper inflated lungs. My heart races going into tackacardia. My legs , arms, hips often ache and feel heavy like I have the flu. Continued nausea, vomiting, brain fog, dizziness, feeling of wetness on one side of my face (even though nothing is there), mixing up left and right ( setting the table backwards) plus severe anxiety ( last 8 months)
I became a Support Group Facilitator after being admitted to hospital 3 times in 2 weeks and getting no answers. Some doctors were thinking I had serotonin syndrome, others were just scratching their head saying scans are clear and nothing is wrong. I have had a few hospital visits with wheezing, weak legs, low potassium, racing heart and unexplained fevers. Again some doctors saying they think I have serotonin syndrome others saying no chance without tumour.
I have been told that my tumour may be the size of a pinhead and take time to show up. Considering it’s been over 17 years of high serotonin blood test I’m still puzzled. Doctors don’t know any other reason for the high serotonin?
I was googling carcinoid and came across the Unicorn Foundation, then I called Simone! After 12 years of being told I may have carcinoid, I finally found someone who understood. Simone was so reassuring and I felt like I was no longer alone. When Simone asked if I would like to be the facilitator of the Brisbane group, I jumped at the idea. I have met the most amazing people through this group, both patients and carers. Everyone is on their own journey, all very different but with similarities that only Unicorns seem to understand.
I would tell anyone who is newly diagnosed to join the group. Whether they come to the meetings, use the Facebook Unicorn Group or call Kate the NET Nurse or others patients, they are not alone.
I always advise patients to write down any questions and ask the doctor or specialist to answer them. It can be very overwhelming and we quite often get side tracked or nervous in the room and forget to get some answers we need. The more educated you can be, the easier your journey is. Everyone is different and we all need to listen to our bodies.
I would like to conclude by saying a massive thank you to Simone, John and everyone from the Unicorn Foundation. I know I feel like I can keep going even though my story is confusing and my diagnosis still not final, I know I’m not alone. My platelet Serotonin continues to be high after 17 years. It does drop when I have Lantreotide injections but comes back up soon as we stop. I try not to stay on them if my symptoms are ok until we get a definite diagnosis either way.
PS. Here is a photo of my sons unicorn tattoo that he surprised me with!