Ciao Tutti!
Over a month since I sat down to write this blog. Needs some updating. Cant remember too much what has happened during the first part of November. Things were going well. I was down to a visit every two weeks at the HOP clinic. Drove myself to hospital so saved a fortune on taxis. My blue badge arrived so made parking a whizz. Visited Tate Modern and parked right outside. What a treat! Regular shopping at Sainsbury's. Managed to walk up to Horniman Gardens from the house. Great. Planted daffodils for the spring and chopped back the last of the lavender. Garden all umbers, reds and yellows now; only fushia still flowering. Has clambered everywhere and looks great, all twisted and tangled and full of red and purple bells (thin variety). Birds busy on the feeder. Had a parakeet hanging off it the other day too. Local cats suddenly got wind of all my feathered friends and are starting to stroll round the garden too often. I am shooing them away. Am I turning into a mad woman I wonder?
So all was going fine and dandy. Bloods where stabilising and I was starting to feel a whole lot better. My steroids were being reduced, my tremors where getting less. My taste was coming back. My face was thinning down. Then last week the hospital decided to give me an infusion of immunoglobulins (part of the immune system, immunoglobulins help to identify and neutralise bacteria and viruses). Apparently mine were very low - so it was a precautionary measure as we head into winter. It took two long visits to the HOP Clinic to infuse me with 7 bottles of the stuff. The day after it had finished I woke at midnight with a screaming headache and high temperature. That went on all night. My brain was falling out. I felt so ill. The following morning I got an ambulance down to A&E at Kings and eventually ended up on a bed back at the HOP clinic. I was told my symptoms were a reaction to the transfusion, given paracetamol and antibiotics to fight off any infection that might be brewing. A routine blood test also showed my haemoglobin had dropped quite a lot. I queried this with the doctor on duty, but was told it was normal.
Got home, swallowed all the pills. Didn't want to eat anything. Watched my temperature spike. Slept. Friday morning was feeling a bit better, so drove to pick up new glasses from Specsavers…stayed the rest of the day pretty much on the sofa. On Saturday my temperature was still a bit high. I looked yellow. My breathing had deteriorated. Walking up and down the stairs suddenly became very hard work and took ages. Sunday was even worse. Breathing more difficult, even harder climbing the stairs, dizzy and pale. I read the side effects of the antibiotics I was being given and decided that they were possibly causing the problem. "can effect red blood cells, causing breathlessness, yellowing of eyes and skin, dizziness". Eventually called Kings to ask if I could stop taking the antibiotics. The registrar wanted me to go into the hospital immediately. Not what I had bargained for. Was very reticent but figured it was better to be safe than sorry. So Mel took me in. A dark windy Sunday evening. What utter misery. Suddenly I was being pushed in a wheel chair down the long corridor of Davidson Ward and into Room 5. The memory of everything - blue uniformed nurses, smell, food, bleeping monitors etc, came flooding back in one big whoosh. This was so not what I ever wanted to experience again. I held my breath and shut my eyes for the night. Though didn't get much sleep. It was a crazy few hours, full of blood tests, doctors calling into see me at 2am, calcium drips.
In the morning I was told I had a haemoglobin level of 65 (baseline is 115) and therefore needed a lot of blood fast. Due to the continuing violent headaches it was also decided I needed a brain scan and possibly a lumbar puncture. Oh dear, it was all coming thick and fast. Wheeled here and there. Shunted through CT scanners, more bloods taken (no hickman line anymore, so everything in and out of me goes via a needle and canular, bloody painful too). chest X-ray. The new blood eventually arrived at 6pm. 3 bags full. I was hooked up all night. The process didn't finish till 6am Tuesday morning. Blimey, was I exhausted!
Haemoglobin level went up to 100. Brain scan was ok. They decided not to do the lumbar puncture (hurrah!) headaches got better. I had colour in my cheeks and could walk again. In the afternoon I was told by the consultant that I could go home as they had a chronic bed shortage and I was the 'wellest' person on the ward. I was not going to complain. What a relief. Back to Grassmount. I can stare at the winter trees outside of my kitchen window and make a cup of tea. Such simple necessities.
In the end it was thankfully a short sharp visit. But not without consequences. They have had to up my steroid intake while the red blood cells start to get back into a healthy production line. So back come the tremors, fat face, loss of taste etc. I am having to go back to HOP clinic everyday for blood work to check haemoglobin doesn't start to drop again. So far it is ok, but hasn't got above 109. My whites and neutrophils, which had finally been at normal levels last week, have dropped dramatically. I am told this is due to increase in steroids. Have no idea how much longer I will have to remain on these wretched pills, but am pretty fed up with the whole situation, especially as I was almost off them (after 6 months).
Not sure in the end what caused all the problem. I think it was a mixture of a rather cavalier doctor decreasing my steroid intake too quickly the week before the infusion. Despite my blood work showing a lowering of haemoglobin reading, this was not picked up, so my haemoglobin count had already started to fall before the infusion of immunoglobulins took place. Plus I had a double whammy of bad reaction to infusion and antibiotics. Everything all happening within 48 hours. The perfect storm.
I have just reread this and its all a bit confusing and long winded. So congratulations if you have managed to get yourself through it all! I need to go and make myself an omelette. I look forward to Luigi returning, he has been gone an age, and I have missed him big time over this last week. Its hard doing this alone. Though I have had great support from my family, Mel, Pip, Lulu and Julian. You are all stars. Thanks guys.
Lovely soft low November light shining outside. My neighbours holly bush is full of berries. The Robin is hopping around the empty hosta pot pulling at delicious bugs. The squirrel stole the coconut that I took ages to string and hang...
Hope everyone well. The annual madness is already upon us. Keep calm. Thanks for messages that still keep coming through. Stay warm, or cool if you are southern hemisphere. Back soon. tch xx
