Anyone that knows me or has read my blog knows that I have been struggling for the past 6 months. It all started in September when one morning I coughed up bright red blood, mouthfuls of the stuff. It settled down during the day so started taking antibiotics, Ciprofloxin. I had my appointment with my respiratory consultant the following week so just took it easy until then. When I saw him he organised blood tests but thought it was nothing serious. Well after a couple of weeks I still felt rough but was seeing my mouldy man and he told me that the blood results showed a raised white cell count and asked me to supply a sputum sample. At the same appointment I was prescribed Fungizone. A week later I started coughing up blood again so rang my hospital and was told I had a heavy growth of pseudamonus (I call this one of my constant companions along with aspergillus) and to have another course of Cipro. GP wouldn’t prescribe it until she received a letter from the hospital. After a heated discussion she agreed to give me five days of 500mg twice a day. Two weeks later I went back to the GP as I was still very rough and the sputum was awful. When she went into my file on the computer it flashed up that patient needs 750mg Cipro for 14 days. Flustered GP sent me for an x-ray and gave me more Cipro. Two days later I get a phone call saying the x-ray showed a severe infection!
We are now at the end of November and my father in law dies. I still felt bad but wanted to support my husband who is my rock. During this time I had increased my steroids so even though my chest was bad I was coping. There had to be a postmortem so the funeral was delayed. This took place a couple of days before Christmas and in Norfolk which is over 150 miles from us. I don’t know how I managed and when we got home I must admit things started to get blurry! I woke on Christmas day feeling really rough and thought please just get me through today. Didn’t have the strength to open pressies and my poor husband did all the cooking. Sat in a chair all night then in the morning I felt I needed an ambulance! Paramedics thought I had sepsis so I was blue lighted to A & E.
Didn’t have sepsis (thank goodness) but there was a concern I was going into respiratory failure and had an intensive care nurse with me the first night. It was the time of the flu outbreak and there was a bed shortage and once they felt everything had settled down I was allowed home to do my own iv treatment. I was happy with that and asked them just to make sure I was on the right antibiotic which I was assured I was. I was seen in Ambulatory Care every 3 days for blood tests to make sure I was okay.
Now this is the bit that has knocked me for six. Just over three weeks later my hubby got the flu and I thought I had got away with it as I had had a flu jab. The night of 4th Feb my temperature went up and I had this awful headache again I spent the night in a chair. Since finishing the antibiotics I can honestly say I didn’t feel right but thought well they can’t get rid of the bug perhaps this is the way it has to be. I phoned my GP and asked if she could get me admitted to Brompton as I was feeling so rough and give her her due she tried but no luck. Therefore I was back to my local hospital. The day I was admitted I was told the antibiotic I had had for 2 weeks had not been sensitive to my pseudamonus! If I had had the puff I am sure I would have screamed the place down. I was then transferred to a ward. As I am under a different hospital for my lung problems I am not seen by a particular consultant. I was on the G P Unit (still not sure what that is) and seen by the General Medicine team. In short a different doctor every day.
After 3 days a doctor from the respiratory team came to see me and said they were sending me home on Cipro. I was on oxygen and don’t have it at home. I just was stunned and said no. I told the doctor I had already had three courses of Cipro and if they were insistent I wanted my theophylline levels checked as I have to reduce my asthma medication whilst on the Cipro. He hadn’t read my notes, didn’t know my medications just wanted me out. The next morning my iv’s had been stopped. The ward doctor came to see me and didn’t know anything about it and told me I would be in for 14 days treatment!
After a week I was still on oxygen and my mood was down to say the least. Nobody spoke to me about my prednisolone so I just started reducing myself. One morning when I was sitting there with all my medication in front of my I just broke down. It seemed to dawn on me that even with the numerous tablets, inhalers and four items in my nebuliser things were getting worse. I also started to question my quality of life. It was the beginning of Feb and I had been in hospital twice already – what was the point. Hubby came in most days and my sister came over from Essex and the only other person was my friend Salv who has been cutting my hair for over 30 years. You realise that if you can’t keep up with people you can lose touch. I didn’t like the person I was becoming, bitter and twisted my dad would say. I burst into tears when Martin visited saying I couldn’t do it anymore. Told my sister not to visit as I know she means well but she lectures me on what I should do and I know I would not have been able to bite my tongue. I was feeling I wanted to discharge myself but I made a deal with Martin I would stay put for the 14 days if when I got out if I felt fit enough to do things I didn’t want him saying I shouldn’t. I felt I can’t keep putting things off.
Music and books got me through in the end.
The thing is though it never stops once home I had to get on to Brompton to rearrange appointments that I had missed. I was discharged on the 19th Feb and here we are 6th March and I have heard nothing. Everyday I get up sort my drugs out, plug into my nebuliser, do my physio. That all can take over an hour before even getting dressed and washed. My lungs feel a lot clearer which I am grateful for but I have had my stuffing knocked out of me and the energy levels are nearly non existent.
I am sure I will be alright and I know I have the support of some fantastic people who are in the aspergillus facebook group but I can honestly say this has been the worse 6 months of my life.
I have managed to complete all the card orders I had and am up straight with everything so feeling better in myself. There are an awful lot of people worse off than me and I must admit I feel quite guilty moaning on. I am not sure how they cope. I do feel a lot of my depression has been caused by my steroids with the dosage going up and down over the past 6 months and being let down my the doctors.
Not sure what the answer is but all I know is that when you are ill and you have to chase results and get treatments it can be very tiring when nobody phones back. One thing I have to mention is that the nurses in my local hospital were fantastic. They asked questions about my illness and every morning and night they would mix up my Fungizone for me and bring it into my room. I had some cupcakes delivered to them last week and the Sister rang me so chuffed you would think I had bought them all gold watches.
I apologise and will try and post something it bit more uplifting next time.
Onwards and upwards they say. Take care. x