The Cipro didn’t work!
It has been a strange week. Aspergillosis Trust had a great response to Rare Disease Day so we are well pleased. That has meant we have had 2 good campaigns where hopefully more people understand a bit more about Aspergillosis and medics might think fungus. We also want the powers that be to help support those of us with rare diseases.
Monday I had my first appointment of the week. This was with the severe asthma team. I said to hubby the night before what are the chances of me seeing the Prof that has been looking after me for roughly 30 years as my appointment was 9.15 am. Usually the senior doctors turn up a little bit later and check their registrars are already seeing patients. I used to sit in the waiting area and watch the registrars rushing in to get started. Well I was right it was too early for him. I have a video consult with one of the registrars. Very nice man but just wanted to talk about my asthma. I understand I suppose but I was hoping he would give me the results of all the tests I had done. I talked him into looking at my CT scan and he started reading out the report then stopped abruptly and then said I will have to get one of your other team to see this and get back to you.
Thankfully I also had another appointment on Wednesday. One of the advantages of video appointments otherwise it would have been 2 trips to London. Gone are the days you saw a respiratory consultant and he dealt with everything. Luckily they are all in the same hospital and I get on really well will them all.
The appointment on Wednesday was with the mouldy team. Yes there is now a team of 3. My appointment was 9.45 a.m. I was feeling a lot happier about this appointment because I know them all and they are always up front and honest with me (tell it as it is). Poor man straight away I said please explain my CT scan to me and explained what happened on Monday. He said there are some slight changes and a lot of infection. I still have a heavy growth of pseudomonas and growing NTM Abscessus. They have come to the opinion that the allergy part of my aspergillosis has burnt out as my IgE is low. The aspergilloma is stable and my IgG is raised, which it has been for a while but the Fungizone seems to be still doing a good job to keep things stable. So good news.
He is concerned about the infection and my weight. I have gone from 74 kg down to 54 kg and seem to still be losing weight. I thought it was all to do with my gallbladder but he thinks my metabolism has changed because of all the problems I have. They want me to step up my calorie intake to 3000 a day.
All those carbs worry me. I easily get bloated now because of my gallbladder and I have diabetes. He is going to organise for me to see a dietitian.
Also I have to go up to the hospital for tests and have a line in so I can do 2 weeks of antibiotics at home. Within the hour I had a phone call to say I am booked to go to Foulis Ward (which is now a day ward as it has 32 individual rooms) have a load of tests and a line in. The antibiotics will be delivered to my home on the 15th March and my appointment is the 17th. I am so lucky as I am aware I have so many things going on but they are all doing their best for me. I was given a bit of a lecture to rest whilst on the antibiotics to give them the best chance of working. So I will get a pile of books and old sci fi films out to watch. Probably drive my husband crazy but I can say I am under doctors orders!
Wednesday afternoon I joined a little event – organised by Brompton – on managing stress. I always feel that my life is very surreal at times. It was very interesting and I learnt a couple of exercises to cope with bad situations.
So that is it – a very strange week.
No good films to report this week but I have enjoyed watching The Terror on BBC 2. Might have to get the book by Dan Simmons.
My book this week is a bit of nonsense. I need nonsense from time to time when I have so many things on my mind. It is Stone Cold by David Baldacci
Take care everyone and stay safe. Thinks are looking better so we have to hope we will be able to have a reasonable summer. x