Latest scan all cool, probably

Just been to the hospital to have my regular checkup and talk about my latest CT scan. As far as we can tell, everything looks good - I say that cautiously because a specialist still needs to look at it and write up their findings. The hematologist I saw today thought the scan looked clear, so that's encouraging.

I was also a bit worried about my spleen, but it doesn't look like it's enlarged any further - again need confirmation from the specialist, but I am still encouraged.

So as it stands, everything is looking good. Other than a recurring bout of indigestion and some fatigue when I try to do too much, I feel in great shape. Oh, my lymphocytes (white blood cells) are still very low (but higher than the last blood test, so they seem to be creeping up), which means I'm still vulnerable to colds, 'flus, etc. I just need to be sensible....

Still going well - maybe a little tired

I helped out last week at the Lymphoma Association - they are designing a new training course and wanted some input, so I went along. It was a long day for me, but an insight into how I will feel once I go back to work. It lasted from 10 - 4 and I found it draining, but very satisfying to be able to participate. Thankfully the meeting was in a nearby town - I remember thinking to myself that it was good I wasn't further away as I'd never be able to drive home I felt so tired.

I'm free of illness at the moment and am making the most of it - back walking the dog, jogging, and just being more active in general (although this hasn't yet stretched to hoovering or washing up - don't want to push myself too far too early :-)   )

I have a CT scan this Friday to see how everything looks inside. I feel good, so it should be ok, but there is always a little apprehension about these things. I'll know more once I go back for the results on the 20th.....

Back up and running

Well, it looks like it was a virus that took me a month to shift - and nothing more sinister. It makes sense because my lymphocytes are very low - these are the little fighters that recognise and attack viruses, and it is expected that they are low as this is the side effect of the transplant and the suppression of the immune system.

So this means that I am prone to viral infections and, once I get them, slow to get over them. They will also affect me worse as I can't effectively fight them. I suppose I learned a lesson the hard way over the past month and will now take it more seriously than perhaps I have been. But also, I don't want to turn into a hypochondriac who flips out anytime I see someone with a cold. I will be sensible, but will keep an eye out for people with sniffles, cough, etc and leave the room/area if necessary. I should also expect to get some more viral episodes before my immune system has fully recovered - which could take another year or more.

On the positive side, I'm over the most recent virus and feel good again. I've started walking the dog again and will restart jogging in a few days' time. I really love feeling healthy - don't take it for granted!

Still rough - taking the bad with the good

Looking back through my previous posts, I started to feel rough around the end of May/start of June, and here I am on June 17th still not feeling right. The cough that brought me into hospital is still lingering, and my temperature has been hovering close to the point where the hospital will want me to go back in. This just doesn't seem to be improving. After talking to the docs on Wednesday about this, it might boil down to one of three things:

1. My immune system is still too weak to quickly rid me of infections, and it will eventually get better. I just have to bear with it for now.
2. This might be a sign of graft versus host attacking my lungs and causing coughing/infection. A CT scan is being arranged to look for scarring of the lungs.
3. I am still not producing enough antibodies to fight infections. Not sure what the answer is here, but I have had a blood test to check for antibodies and wait to see what this shows.

Anyway, after a few great weeks of feeling almost normal and getting back jogging, walking the dog, etc, it's frustrating to have taken a step backwards. I'm looking forward to this going away and getting back to my more energetic ways.

Another milestone - no more Ciclosporin

Just a quick note - I passed another milestone in my recovery today. I have finished taking the immuno-suppressants. So far so good, with no obvious signs of GvH. It's all going to plan.

And I'm home again

Twenty four hours in hospital did the trick. That was enough time to assess me, give me IV antibiotics and watch my temperature stabilise.  I'll be on oral antibiotics for the next week, which will hopefully clear up the infection, so I can quickly get back to normal, playing with the dog in the back garden.

Back in hospital

I didn't feel well all week, but since my temperature wasn't high, I was just getting on with it. But yesterday lunchtime, my temperature spiked so the hospital said "come on in, we've missed you, we have a bed and broccoli sandwiches for you". How could I refuse such an offer. 

They are superb here. Within a couple of hours of calling them, I was checked in, diagnosed and about to start IV antibiotics for what they think is a chest infection.

The initial thinking is that 24 hours of IV antibiotics should do the trick so I may get home today or tomorrow. 

This kind of thing could continue on and off for two years, until my immune system is strong again.