Changes from Day to Day - Leslee Alexander
This disease is so unpredictable! Last year I had a relatively good year finishing with a week in Llandudno where I could walk up and down the prom most days. This year I caught covid on Boxing Day and haven’t been well since. Last year before we went to Llandudno I was able to walk short distances around our local park and out most days on my mobility scooter but this year because it took me around 3/4 months to recover from Covid and then we have had non stop high winds I haven’t been out.
My family convinced me the sea air would be good for me and so two weeks ago we went back to Llandudno for a week. It was a disaster. I was so breathless. I had two days of back spasms around my right lung. I occasionally get these since my operations and diazapam usually settles it down but this time it took over 24 hours. I put it down to the long drive, change of bed/pillows etc. I then started with a terrible pain in my right shoulder blade and extremely tender under right breast. This was completely new and out of the blue. I felt nauseous and bloated and no appetite. If I did eat I felt full after the tiniest amount. To top it all I had a massive nose bleed at 9am the day before we were due to leave. After 20 mins Brian phoned for an ambulance and explained I was on blood thinners. They made me a priority and said they would be there in an hour or maybe bit longer! Brian phoned my daughter who was staying in another hotel and she rushed around, she is medically trained so I wasn’t as worried when she arrived, she stopped it after about 55 mins so Brian cancelled the ambulance. The bathroom looked like a massacre had taken place. My daughter had come with us and we had arranged to meet friends there and different relatives there on different days. I pushed myself so hard to meet with them and didn’t mention how I was feeling. They were all saying how well I looked but inwardly I just wanted to get home I felt awful from the waist up.
As soon as we arrived home last week I had my spring booster on the Monday then my bloods on Tuesday. The GP phoned on Wednesday to say my bloods had come back showing I was anaemic and my kidney function wasn’t as it should be. I was to make an appointment to go and see him. Ok I’ll just do it now. Sorry you can’t do that you will have to phone at 8am in the morning for one. That night I wrote a list of everything I thought maybe wrong with me and that I wanted to discuss. This would be my first face to face with any GP in over 2and half years. so I wanted to make sure I squeezed everything in. That night about 6pm I had another massive nose bleed. Came out of the blue. I keep arguing I have aspergillosis in my sinuses but keep getting fobbed off. I blow out mouldy looking plugs, very similar to the ones I used to cough up when I was at my worst with aspergillosis. Anyway after half an hour off my nose pouring blood out Brian drove me to A&E. We are extremely lucky here. It is very rare to see queues of ambulances or trolleys in the corridors. I was straight through and into the treatment room. They couldn’t stop it. It had gone 8pm, that was almost two hours. They kept pushing my head back to see if they could see where it was coming from. I was throwing clots up the size of plums. Anyway at 8.20 a consultant arrived and had to cauterise a couple of veins up my nose. I was then put on a ward for an hour to make sure it didn’t start again. Poor Brian was sat in the car outside as he wasn’t allowed in due to covid rules still in place.
The following morning I phone the GP at 8 and was answered straight away. I would like to make an appointment for a face to face with a GP today please. You can’t do that we aren’t doing face to faces just like that anymore! I said the GP told me to phone and get one today. Well what happens is you tell me what is wrong, I leave a note for the GP and if he thinks it is serious enough for a face to face I will phone you back to make an appointment with a GP! I always remember my father saying at some point in his late life when something strange happened “I am getting too old for this world” at this point I understood exactly how he felt. I was feeling awful, coughing a lot, temperature which could have been from either the spring booster I had received a couple of days previously or the doctors receptionists attitude. I explained about my blood test results, my gall bladder. My massive nosebleeds. True to her word she did phone me back and say the GP wants to see you. I said yes he told me he did yesterday! All our GP’s are on holiday today so it is a locum that you will see.
The Surgery was empty when I arrived. It looked a lot more clinical than I remembered it from over two years ago. Only about 5 seats out of 20 with stickers on saying sit here. No posters, no information or emergency phone numbers, it felt really weird. It was a lady GP I saw and I handed her my print out on an A4 sheet of paper. I said these are all the conditions/problems I wish to discuss today. She went to hand it me back saying we only have a certain amount of time allocated for each patient but I stood my ground and said. This is my first face to face in nearly 2 and a half years so I would be pleased if you would do the courtesy of reading it thank you. All the health issues on there are new to me within the last couple of weeks. After the stand off she was ok and I was there about 40 mins. I say ok but she had not heard of aspergillosis which always saddens me. Likened it to COPD. Suffice to say the surgery was still empty when I came out. So to summarise… I am having ultra sound on my gall bladder and kidneys. Endoscopy up my nose. Iron tablets. I am already waiting for CT scan on my lung which my respiratory consultant arranged just as a routine check as not had one since my last Pleurodesis operation two years ago. I was absolutely shattered when I got home because I had been coughing for a couple of days. Turned into a chest infection so I am now on amoxycillin and 20mg prednisone. What a difference an hour can make with this disease never mind a year. Hopefully the high winds will stop, the sun will come out and I shall be sharing my adventures on my trusted mobility scooter with you all and maybe get a little walking in to build my strength up. ……. Jill Fairweather always starts with a song choice so I shall end with one. The Times They Are A-Changin’ WRITTEN BY: BOB DYLAN If your time to you Is worth savin' Then you better start swimmin' Or you'll sink like a stone For the times they are a-changin.
