Well sorry everyone that I haven’t written sooner. When I came out of hospital there was so much to do for Xmas in a short space of time.
I had my bronchoscopy. It was not a good day. To start with the ambulance to take me to Glenfield did not turn up so the time for my bronchoscopy came and went. The service is privatised (Arriva) and does not seem organised. At one stage they were saying that as I came from Northampton, one of their ambulances should take me!! Eventually after wasting a lot of nurse’s time on the phone I was given an emergency ambulance. We had to rush as Glenfield said I had to be there by half two (my appt had been 1pm), so I didn’t use a wheelchair and tottered down with the help of an ambulance man.
I had the procedure pretty quickly. The sedation did not really work. The most painful part was getting a tube up my nose – my nostrils are narrow so they tried both sides and it really hurt. Once the tube was down there I was OK – they anaesthetise your throat and lower down, so the worst that happens is you cough as they spray fluid into your lungs. This coughing lasts a day or so. Also your nose can be sore. They kept saying my heart rate was high, but this was hardly surprising considering the rush and the pain. Anyway they did it all quickly.
Then there was a similar problem with ambulances – I was ready for an ambulance by about 3.30 and but did not get back until 8! I had to wait in a cold outpatient ward with a nurse who will get time in lieu, so there was a cost implication. I was exhausted, but there were no wheelchairs so had to walk back up to the ward. I did talk to the ambulance men who said Arriva did not have enough ambulances and the turnover of staff was very high.
Anyway, thankfully my results were negative, otherwise I would have had to go into hospital every day for a month to have an hour’s drip for a fungal infection.
I did not resume my PEG when I got home, and have been eating better, but my digestive system is pretty shell shocked and Xmas food did not really agree with me! I am trying to have some bland stuff now.
I have also had an appt with immunology, as I have no antibodies at all, so my immune system is non-existent. Upshot of that was I am on a strong antibiotic atm as I’ve had all these infections, while they decide what to do. I can be taught how to inject myself with whatever it is that will improve my immune system – immunoglobulin? Or I can have it IV every three weeks. There are practical problems atm as Bob can’t take lots of days off, but we’ll cross that bridge when we come to it. My next appt is Feb I think, so another month or more stuck in the house.
However, we had a good Xmas and are ticking along. I have plenty to do here, especially paper sorting – the study looks as if a bomb has hit it!
All the best to you all and especially everyone who has sent messages and also all those with myeloma and their carers.