I live in Northern Ireland and I was recently diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH). After having my bloods checked at my local GP I was asked to go to Accident and Emergency at Altnagelvin Hospital were I was admitted for four days while they carried out numerous tests.
I was diagnosed with Myelodysplastic syndrome by the haematology team at Altnagelvin Hospital who then referred me to the MDS specialist in Belfast. After monitoring me for a few months the MDS specialist in Belfast City Hospital diagnosed me with PNH and referred me to the PNH specialist at Belfast hospital who confirmed the diagnosis and referred me to the PNH specialist team at St James Hospital Leeds.
I am now in ‘shared care’ between the hospitals. The PNH consultants in Leeds and Belfast decide on which course of treatment would be best for me. I received my first ravulizumab treatment in Belfast hospital alongside my two meningitis injections. I was then referred to the home care team who administered my second treatment at home and have continued the treatment through home visits every 8weeks. My next meningitis injection was administered at Altnagelvin Hospital by the Belfast Haematology team who were running a clinic that day.
Once a week I attend my local GP to get my bloods taken as I am still being monitored and I am still transfusion dependent. These results are sent to the PNH specialist in Belfast, who inform Altnagelvin Hospital when I am below my haemoglobin ‘trigger’ of 70 so that they can ring me to arrange for me to come up to the Sperrin Unit for a transfusion. I alternate medical appointments every three months between the Leeds and Belfast PNH specialist to discuss treatment. I travel to Belfast for appointments but the Leeds appointments are done online where I am sent a secure link to a consultant on the team. They send me a prepaid box in the post a week or two before my appointment so that I can arrange with my GP to get my bloods taken and sent back to them before our scheduled appointment. My medical team continue to work together to provide me with the best possible treatment.