OPINION:The coughing, the chattering, the TV, the drilling, the bugs, germs and unflushed toilet: welcome to cystic fibrosis healthcare, Irish-style, 2009, writes ORLA TINSLEY
WHEN THE cystic fibrosis campaign eased a little recently, I knew I would need intravenous antibiotics soon and so I presented myself at my clinic. I knew I needed to go into hospital, and my consultant agreed with me.
There were significant differences in my lung function and I was exhausted. There were no beds so I chose to go home and wait instead of going to AE. I knew I needed intravenous drugs, but I could not face the stress of AE and the forced awareness that being there requires.
On Wednesday, April 22nd, I had to call the hospital at 11am and 2pm, the required times, to see whether there was a bed. There wasn’t and I was advised again to go to AE. The threat of infection in AE is something I did not want to face, so I didn’t go.
On Wednesday evening I started to feel much worse and spent most of the time moving from my bed to Facebook to boiling rice in the kitchen.
When you feel unwell like that, you can’t really read or concentrate properly, eating is extremely difficult and leaving the house can be near impossible.
On Thursday I called at 11am, but there was no bed. At this stage I decided that if there was no bed by that night, I would give in and go to AE because I was feeling so unwell.
At 2pm there was still no bed. The nurse asked me to come in to put in my gripper needle to prepare me for AE, because it would be highly unlikely that there would be anyone qualified to do it down there. But by 2pm I had decided against AE again.
The inner wrestling that goes on in making that decision is extremely difficult. I was fighting nausea, chest pain and supreme weakness but I did not want to have to fight that in a department where I had to worry about who was lying beside me on the trolley and whether the person treating me had a clue about my illness.
At 5pm on Thursday I got a call to say I had a bed. I got a taxi to the hospital and the driver refused to let me pay, saying how aware he was of what was going on and how angry he was for everyone with CF in Ireland. It was really amazing to see that level of awareness and made going into hospital a little less difficult.
I am in a room with five other women, and they are all lovely. My curtain is pulled around most of the time because I am exhausted, but the lady across from me and I are having good chats. Her cough is ferocious and we laugh at each other coughing through the night.
She said that when she couldn’t sleep during the night she wanted to come in and help me, but she didn’t want to embarrass me. She also keeps telling me to eat, because she doesn’t understand how taking nine intravenous antibiotics a day coupled with large amounts of sputum can take away your appetite.
It is extremely difficult when you try to explain that you are, in fact, not trying to turn your body into Agnys Deans, particularly when they keep telling you how lucky you are to be walking around because they don’t understand CF.
The first night a lady in my room kept saying to me: “What an awful cough that is”.
It was 4am and I was keeping her awake, which is a really rotten situation for a lady in her 90s. I slept about three hours the first night and two the next night. The room is noisy in different ways throughout the night and on Friday night, I woke up nauseous and needed to get sick.
I got to the bathroom and had to flush it before I could throw up because someone else had forgotten to. On the first day I had to clean hair off the toilet bowl before I used it.
The nature of my infection this time is different as I have a minute pneumothorax in one of my lungs, which means a very small amount of it has collapsed.
The nature of CF means that infections are different for everyone and they are fickle. Cystic fibrosis is different for everyone and no two infections are the same.
People with CF need specialised, individual care from specially trained staff. It is the only way we can be treated properly. In the first few days the discomfort of infection was difficult and I could not get comfortable to sleep, which is another reason I was awake.
In a single, en-suite room I would be able to sleep during the day, not have to worry about the people or coughs around me and I would start to feel better more quickly.
I finally got to sleep on Friday morning around 5am . . . and then was awoken by the blaring TV at 9am.
Because there are six different personalities at play, we all get our comfort or pass our time in different ways. It is an extremely difficult situation.
There is also drilling at different periods of the day.
This is one of the best wards I have been on, but there is nothing to beat the relief and comfort of a single, en-suite room where the toilet is clean, the air is free of bugs, the nurses are specifically trained in CF and you can sleep whenever you need to.
On Saturday, April 25th, I was on oxygen and was wheeled to X-ray because I was exhausted. When I came back the lady across from me asked if I had been on TV because her daughter thought I had been, but she said: “I told her it couldn’t be you. I watched the TV with her, but you are a very sick girl.”
I am not that sick, but it was a nerve-wrecking weekend.
The full-blown conversations one of the ladies in my room was having with a nurse at 3am one night didn’t help, neither did waiting at home for 2½ days. Neither did the constant stream of visitors coming in and out of the room. I am on a semi-private ward. I have been on this ward before and the nurses are extremely well-trained in CF, even though it is not their speciality. They are so used to treating patients with CF who are shipped into their ward.
As I write this there are 28 people with cystic fibrosis being treated in St Vincent’s hospital and at least 10 people doing their intravenous antibiotics at home.
They are well enough to be there, or they are at home because they do not want to endanger themselves by being in here.
I don’t know how else to say how much we need our single, en-suite beds. We needed them yesterday.
I am feeling much better in here right now but I am exhausted. I’m hoping to get an MR880 soon. The MR880 is a sort of humidifier; it will blow warm air into my lungs, decongest them in a gentle, non-aggressive way so that when I need to do physio, the lungs are clearer and I get more from the physio.
There are five in the hospital – not enough to meet the demand, nobody’s fault here but just not enough. Five MR880s. All in use . . .
I am hoping to get into one of the eight single, en-suite rooms at some stage of my stay. But there are others sicker than me who are hoping that too. It is like one big twisted competition, the team members have to decide who is the sickest? Who deserves a single, en-suite room more?
It is a horrible decision that they continuously make. It is degrading and inhumane that we have to wait and fight for treatment when we were promised at least our 14 interim beds by the end of 2008.
In August it will be a year since our eight, single, en-suite rooms opened. I have been in them once. There are patients who have never been in them and who never will be.