OVER THE PAST three years I have been diagnosed with two rare diseases of the left lung, called Swyer James McLeod syndrome and an intralobar pulmonary sequestration. I currently stand as the only person in the world with both diseases on the same lung.
The symptoms are regular lung infections, coughing up blood, daily coughing fits, shortness of breath on exertion and extreme chest pains.
Fighting for my care
In Ireland it’s a constant fight for adequate care. In February 2015 I had a left upper lobectomy to try and stabilise the symptoms I was having – mainly coughing up blood.
After surgery the symptoms came worse and I was then misdiagnosed with Munchausen syndrome for two more years. I only discovered this after I put in a freedom of information request to gain access to my file. This has since been corrected with a psychiatrist.
At the time every GP visit resulted in a visit to A and E, where I would have a chest x-ray, bloods and be sent home. Despite seeing my respiratory consultant every 3 months, he still continued to ignore my symptoms. My symptoms became worse, the infections got worse and my breathing got worse so I then decided to get a second opinion as I was being ignored by my consultant.
In August 2016 I was admitted to hospital with a severe episode of coughing up blood, my lungs were re-scanned and the scan showed a significant drop in blood supply to remaining part of the left lung, a CT showed new cystic spaces and I developed a disease of the airways called bronchiectasis.
My doctors had failed to spot the deterioration that has left me with irreversible lung damage and all because they said I was making up my symptoms.
For the past year I have been monitored in respiratory clinic every six weeks under new respiratory doctors.
In November 2016 I was admitted to SVUH with a bad lung infection, I had to go through A and E yet again. I spent 26 hours on a trolley with a severe lung infection while hooked up to a drip with IV antibiotics. I was more open to cross infection.
A and E isn’t suitable for those with chronic illnesses
I will always argue that A and E is nowhere for anyone with chronic diseases, I should have a direct access to my team and be able to avoid A and E. I visit A and E regularly due to the complications of this disease to a point where frustration took over and I sent a letter to my medical team.
This resulted in a 4-week admission where I got 3 options 1) do nothing about the lung disease and leave it the way it is, 2) block the blood supply to the sequestration, 3) take the rest of the lung out and live with the consequences of having one lung.
I was then left with no other option but to leave the lung the way it is, the choices were taken away from me.
I’m currently waiting for a follow up in the pain management clinic, I’ve already seen pain management during my admission but I have to wait 12 months for an appointment. They offered me to go on a methadone trial for pain in which I refused because it becomes a sad state of affairs in a country that can offer a 25-year-old methadone but can’t offer cannabis oil.
It baffles me. I shouldn’t have to fight for a normalised standard of care.
On Tuesday, my appointment was for 12.05 and I didn’t get seen to until nearly 5 o’clock. I had been on antibiotics and steroids for a few days and I was still having high temperatures but I still had to sit in a room full of people with all sorts of diseases while being sick myself.
I’m currently blogging about my experience as a patient in the Irish healthcare system and I’m glad to see people are as shocked as I am about it.
Kellie Tallant is 25. Her blog is theinsandoutsofkellie.wordpress.com.