The onset of my symptoms began in early 2010; I had gone from eating normally to not being able to tolerate food and eventually liquid supplements.
A surgeon, who removed my gallbladder in late 2010, noticed my abnormally large stomach, to be a possible cause. I collapsed late 2011 from inadequate hydration and severe weight loss, before been taken seriously. I then had to have a jejunostomy feeding tube to give me nutrition that bypassed my stomach. I ended up on TPN (intravenous nutrition) in mid-2012, as the jejunal feeds failed and caused me immense pain, before I was diagnosed with Auto immune Autonomic neuropathy.
To manage my rare disease, I have to have a plasma exchange every three weeks that knocks me around but has allowed me to eat and drink small amounts but I still require TPN four times a week. My husband has to leave work early to connect me up to the drip and I disconnect the drip the next morning. The central venous line needs weekly dressing and carries the risk of serious infections. I get tired very easily and push a drip around the house and my children have to help me too. I have trouble with temperature and heart rate control as well as the intestinal failure.
It’s been a real battle to get treatments because it’s a rare condition, and there is no clinical data to back up the success of treatments. My doctors want me to trial Rituximab, but so far it’s been rejected by hospital drug committees, despite it being cheaper than my current treatment. I have specialists at two different hospitals and communication is poor, often because correspondence doesn’t make it to my file. Also, within the same hospital, the different speciality teams often disagree, and sometimes seem more political than what’s best for the patient.
An improvement to access to treatments is really needed and patient-focused health care would go a long way. I also fear rising medical expenses as the Federal government phases out the tax rebate on medical expenses. Better understanding by governments on costs and support is needed for those with chronic illnesses that won’t be covered by the NDIS, and reflected in future policies. My main support group is PNDU – Parenteral Nutrition Down under, for those on intravenous and enteral nutrition at home: www.parenteralnutritiondownunder.com.