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.

A cold or GVH - something to watch

For the past few days I have been fighting a cold, or something like that. The usual stuff - sore and hoarse throat, sneezes/sniffles, slight cough (with the odd mess being coughed up). I have also had a mouth ulcer and some slight diarrhea (too much info for you?!). Throughout this, my temperature has remained below the level that the hospital want to know, so this has been largely under the radar until today when I had my fortnightly appointment.
It turns out that Graft Vs Host can manifest itself as a sore throat/sore mouth, and diarrhea is another sign too. Given that this has started to happen just as I am weaning off the immuno-supressants mean it's one to watch closely.
If it's a cold virus, it should hopefully clear up by itself in a few days. If it's GVH then I'll still be suffering in a week's time when I'm due back to the hospital for a follow-up. Of course, there is a third possibility - the cold turns into a chest infection and I end up back on the ward for a few days.
It'll be interesting to see which way this goes.......

All looking good - getting cocky now

I haven't blogged in a couple of weeks - largely because there hasn't been much extra to say. I continue to live my life in semi-isolation, but as I get stronger every day/week, I find myself getting more and more relaxed about going out in public. For the past few weeks I have been getting out daily to either walk the dog (I do 5k, she does 10k around me!) or to go for a jog (I'm up to 5 miles without stopping - happy about that). I have also been to the shops a few times - life's getting exciting now! I have made plans to run a 10k in June, go to an airshow in July, Ireland in August and back to work in September. However, I still avoid many places where I feel I have no control over who I meet and the potential for picking up something nasty.

I was at the docs for my fortnightly checkup on Wednesday and told them about my plans - their response was cautious. I suppose I shouldn't have been surprised as my immune system is still low and (I forgot about this) will remain low for up to two years. So, they are happy with my progress and how energetic I feel currently, but warned that it wouldn't take much for me to pick up an infection and end up back in hospital. Flying to Ireland is of particular concern because of all the bugs that can be picked up at an airport or on the plane (especially LHR - measles, for example. And I read this morning about an outbreak of measles in West Limerick too!), and what would I do if I got sick in Limerick (I'm sure there's a lovely trolley in a corridor of the Regional I can use!).

I am in compete agreement with the doctors and needed Wednesday's chat to ensure I don't get too complacent about how vulnerable I still am - in spite of how good I feel. I will continue with my plans, as long as I realise that all can be scuppered if I get sick. That's a chance I'm willing to take as I'm really not one for sitting around doing nothing - I want to live my life.

One reason I'm so positive about my recovery is all the results from the 100-day tests have come back negative. Other than a slightly enlarged spleen (which I still think is scar tissue), there is no evidence of Lymphoma and loads of evidence that my new bone marrow is working well. I am continuing to reduce the immuno-suppressant drugs with no sign of any Graft-Vs-Host so far.
Life is good.

The weaning begins

I agreed with the docs this week that I would start reducing the dose of immuno-suppressants that I take. This is good news for a couple of reasons :- the fewer drugs I take, the better as far as I'm concerned and this will allow my immune system to start working better and keep any lymphoma at bay. Assuming I get no major graft vs host issues, it'll take a couple of months to come of the suppressants completely. Once I'm off them, I will be able to stop taking another horrible drug that is preventing my blood levels from rising above half way (but it is protecting me from a nasty version of pneumonia, so I guess it's worth it). So, I'm on the way to becoming drug-free which is a great prospect (except for penicillin - I'll be on that for the rest of my life because the transplant does things to my spleen that it never recovers from).

I received more good news this week - the CT scan results came back and, with the exception of my slightly enlarged spleen, everything is completely normal. The spleen is no surprise because it was enlarged going into the transplant (apparently normal should be 13cm and mine is 16cm). It has not increased in size since and the enlargement could be scar tissue as a result of how stretched it was this time last year (doctors at the time called it a whopper :-)  ). It could also be lymphoma in there, but given the doses of chemo I have just been through, and the fact that the disease in all my other lymph nodes has completely cleared up, I'm inclined to think not.  Because I'm reducing my immuno-suppressants which will allow my immune system to strengthen, if there is lymphoma left in the spleen then it will be a good test to see if the new immune system eradicates it. In any case, we will be watching this closely over the coming months......