Plan C

Keith came with me to see the consultant today. I'd managed, through persistent phoning, to get an earlier appointment and was expecting to have to wait to the end of the clinic, but we were seen first. We updated Mr Hussain on the (lack!) of progress so far - he was also very disappointed that the steroids didn't work.

His Plan C was to prescribe a low-dose antibiotic that is taken every other day for 3 months. At this dose, it works as an anti-inflammatory and will, hopefully, help to heal the inflammation in my lung.

He tried to explain, again, what is happening in my lungs by showing me the x-rays and CT scan images. For fun, I've found some on the internet that look similar, first an x-ray:

This x-ray is from a person with pneumonia and the white cloudy areas are similar to mine (marked as 'bad' on the photo!) I've had several x-rays and the white patches have moved round, suggesting that some infection has cleared up and some is new infection. 

I've also had several CT scans that take 'slices' of x-rays horizontally through the body. In this image, the person is lying down (the spine is marked) and the view is as though you were looking inside the body from the head down towards the feet.The black areas are the lungs. I have a lung 'cavity' that is a hole in the spongy stuff that the lungs are made of. This can be caused by an infection, or probably in my case, from the Rituximab. The cavity fills up with gunk and this causes the cough. The lungs are normally sterile, and the cavity breaches this making the lungs prone to infection. The cavity is surrounded by inflammation and it's this that the new drugs are trying to heal.

The new drugs should have an effect within 6-8 weeks, and I'm taking bets on my first cough-free day. If you'd like to bet on a date, just email me - there may be prizes!

Irony

We were really hoping the steroid tablets would work and at every cough over the last few days I wondered if it was the last....

But the cough didn't clear up and I felt the same at the end of the course. Worse than that was to follow because 2 days after the course had finished I started to feel poorly again, very feverish and tired. Turns out I was having withdrawal side effects.

Back to the GP, but unfortunately there is nothing more they can do, so hopefully they can arrange  an earlier appointment at the consultant to try a different course of treatment.

All the time I've been ill I've tried to carry on with my life as much as possible, and I'd planned a lovely birthday weekend. Fortunately, I was able to enjoy the Emma Bridgewater pottery on Saturday, but I've had to postpone the trip to Ironbridge with Sarah and the family to next week. I'm very grateful to all my family and friends who support me even when I'm pretty miserable and fed up with being ill.

An old friend...

My cough has got much worse and so I went to the GP today. She prescribed an old friend for me - Prednisolone steroid tablets! According to the research I've been doing, this will cure the cough and I'm very much looking forwards to that! I have a short course of 6 tablets for 5 days and I'm counting down the days....

Tests...

I had a whole range of different lung tests today at the hospital. I had to sit in a box (a bit like a shower!) with a contraption to breath in and out of. The tests were mostly OK, but they wanted to be sure that the results were accurate, so each one could be repeated up to 8 times until they had 3 readings the same! Some felt like I was being tested for the Olympic synchronized swimming team because I had a rather flattering blue nose clip and had to take very deep breaths and hold them! I'm not sure if I passed :)

I had hoped that the inhaler would have really cleared up my cough by now, but whilst it did get a lot better, it's now getting worse again.

More new drugs

I had another CT scan yesterday and met with the respiratory specialist today. The inflammation on my lungs has got better in some places, but worse in others and I'm still coughing and have a sore throat. I've been prescribed a course of antibiotics and a new inhaler that includes a steroid to heal the inflammation, as well as a drug to open up the bronchials. I'm really hopeful that this will work!

Christmas Cheer!

My clinic appointment today was very thorough! I mentioned that I still had the cough :( and a sore throat and still wasn't up to my normal fitness. The consultant used his iPhone light to look at my throat, checked the date for my next chest scan and sent off for blood tests to see if I have any vitamin deficiencies. All my bloods are normal, except that my lymphocytes are low at the moment. He says that it can take 6 months for the Rituximab to completely clear out of my system, and this (or the lymphoma) can cause my lowered lymphocytes and lowered immune system. He mentioned that you can have 'transplanted' anti-bodies as an injection that will help my system while it recovers. I'm looking forwards to a merry Christmas and a new year where I gradually get better and better!

Back to work

The antibiotics worked after a few days and I was back at work in a week! Not at my full strength, it will be a while before I'm cycling to work or Morris dancing! I still have the cough, though, and the consultant today said that they hope that now I'm off the Rituximab my immune system will start to recover and the lungs will heal. I have an appointment for a scan and check up in early Jan.