ANOTHER DIAGNOSIS

After my last stay in hospital and visit to Wales, I still had a lot of trouble with my breathing. Lung function tests were done and happily my breathing is now better. However, yesterday I saw a lung specialist and his findings (taking into account CT scan of lungs and some more lung function tests) are
1) a bit of Emphysema in the top of both lungs causing loss of lung tissue 2) the bottom of both lungs have scarring from previous infections and possibly the splenectomy.
3) This has reduced my lung capacity by 25% over all.
4) No significant narrowing of airways and not Bronciectasis

Now this seems a big deal to me. Emphysema is a very scary word and under the heading of COPD. His advice was try not to get any more chest infections (3 pneumonias so far with my CLL + the chest infection last October)- all very serious and requiring hospital in-patient treatment.

Meanwhile I am still strugging with Prednisolone withdrawal. I could do with some really good news.

TEN YEARS AFTER MY DIAGNOSIS OF CLL

Four rounds of FC and 3 of Rituxan later and it was feared the Rituxan wasn't working as my spleen refused to shink. My doctor told me to be ready to have my spleen removed in the New Year 2010. The AIHA has been up and down for a whole 12 months now and I've been on a varying dosage of Prednisolone. It seems as if the moment the dose drops to 5 or 10mg a day then the hemolysing starts again. Before the last round of FCR I was feeling very tired and ill. Afterwards I just continued to feel sick and couldn't sit or stand upstraight without feeling ill. I didn't want to eat or drink anything either. I was admitted to hospital again on 19 November with Neutropenic Sepsis and back on 50mg Prednisolone as the hemolysing roared in again. That evening I was ready for the body wagon. I felt so ill I would have climbed in myself and checked out. There was much concern among the doctors that the AIHA could not be controlled. My husband was totally worn out with all the worry and so was I. However, 3 bags of blood and several days later and I was feeling more myself (whoever myself is......is it the patient? Where is Soapy in all of this...is she still here? Who is the person I see in the mirror? That person is NOT ME. She is just a shadow who bears a faint resembance to me.

I was discharged after 6 days.
Two weeks later and my doctor is on holiday. I saw a junior consultant who knew nothing about me. He says my blood counts are normal and my CT scan shows nothing abnormal. He also says there is no sign of hemolysing. Why is it that my bloodwork never reflects the way I feel. I still feel weak, shaky and exhausted and a bit of a burden on those who love me.