The medicine is in, now we wait

It took over 30 hours, but the IV Immunoglobulin is all in. It finished in the early hours of this morning. Now I just wait for this and some antiviral tablets to halt the spread of the virus. I guess I'll know when things start to improve as my temperature will stop spiking and I feel generally better within myself. Dunno when this might be, so I could be here for a few days yet.

Feeling a bit tender today - probably a combination of the drugs and the virus. I think it'll be a mixture of snoozing and watching rugby today.

Beware of the goblins

I was hoping the intravenous immunoglobulins would go smoothly, but no such luck. they started the infusion slowly so that if there was a reaction it would be lighter than if I got the full dose from the start. That went fine so they stepped it up to the next level. That, too, went fine so they stepped it up again - that's when the rigors started. The most violent and uncontrollable shaking I've ever had. I'm sure they must have heard my teeth chattering from the other side of the ward. it came on really fast, but so did the medical team - they quickly gave me an antihistamine shot and the shivers died down within about twenty minutes. I'm in such good hands here.

I took a break for a couple of hours and we restarted the infusion back at the slowest rate. Fully aware that I might have another reaction, but I really want these antibodies in my system to fight this virus. It took all night, but I eventually finished the first of four bottles. I'll be hooked up for the rest of today and probably tonight, but at least I'm getting the medicine I need.

On the positive side, I've gotten out of hoovering the house for another week AND I have plenty of time while lying here to hatch a scheme to get out of more chores next week........

Goblins

Immunoglobulins are antibodies that your body produces in response to bacteria or viruses. So when you catch a cold, for example, you get over it once you produce antibodies to fight that virus.
My goblin levels are low so I will be getting a top up over the next couple of days. These antibodies will target the RSV virus directly, so I should get the upper hand against it by the weekend.
The treatment will start this morning.

Caught a virus, back in hospital

I haven't been feeling well for a few weeks - nothing major, it felt like I was fighting a cold and I was managing it fine with paracetamol.  However, over the weekend it seemed to go up a notch, my temperature was steadily climbing and I started getting the shakes.

I came into the hospital on Monday, just so see what is going on and they found a virus that concerns them. It's called RSV and in someone with a strong immune system it would cause a few days of sniffles and a minor cough. For me, there is a risk it'll go to my lungs, causing bronchiolitis. so we don't want that. But to fight it, I have to take some drugs with potentially strong side effects. My blood counts need to be monitored every day, and some of the drugs are delivered intravenously. So I'll need to stay in until the course of treatment completes and I am showing signs of being well again. I might get home this weekend. watch this space.....

Checking In

I'm conscious that I haven't provided an update in a while. This is because there is nothing major to report. It's still going really well overall.

I've been battling a cold for two weeks and, because of my low Lymphocyte count, I wouldn't be surprised if I'll be fighting it for another couple of weeks. I've been put on antibiotics as I've also developed an earache and slight cough - so hopefully we can nip any potential infection in the bud.

The only other thing is my knee hasn't been right for a couple of months - it's swollen and I don't have the full range of motion. No idea what this is - I suppose one possible reason is my new immune system doesn't like it and is attacking it. In any case, I will have an ultrasound examination and (probably) steroid injection in it in the coming weeks. Hopefully I'll be able to get back running after that.

I'm up to three days a week at work and this is going well too, although I'm drained after each day. I find that week-by-week I am getting clearer in thought and concentration, and my energy levels are slowly improving. My company continues to be really supportive and I feel that, with them, I have a real ally in my quest to get back to regular working hours - one that watches out for me to ensure I am not pushing myself too hard, but also gives me enough work to keep me occupied while I am there.

So, I am happy and my family is happy - life is good!

Medical word of the day :- Chimerism

My Bone Marrow Clinic checkups are monthly these days, so I was there today to discuss how it's all going and to reflect on the results of my latest scan. We are all very happy overall with my progress, but there are some things to keep an eye on:-

1) My spleen is still slightly enlarged. It is the same size as the last couple of scans, so it's good news that it's not getting bigger. I still think that this is a result of scar tissue from when it was a whopper. There is absolutely no evidence of any other enlarged lymph nodes in my body - so I am hugely encouraged by this - in fact I just gave a whoop and a holler to celebrate.

2) I have some nodules on my lungs. Possibly scar tissue (fibrosis) from recent chest infections, but the doc reckons nothing to worry about. My lung functions are completely normal and not affected.

3) Chimerism is to do with having two sets of DNA in my body - i.e. my old (pre-transplant) blood cells and the ones from my new bone marrow. Obviously I want to have none of the old lymphocytes, as they mutated and became cancerous, so I want to get rid of them - but there are some still lingering.  My lymphocyte chimerism is currently 78% new and 22% old. This is considered normal for this point in my recovery, and as the months progress I hope to see the old ones reducing and ultimately hitting zero, with the new lymphocytes completely taking over. If this doesn't adjust sufficiently, then I may have a lymphocyte top-up from my donor, just to nudge it along.

So, I look at today's visit as a very positive one. It's all good news, but a reminder that I'm still recovering and there's a lot happening inside that needs to be monitored.

Another milestone - back to work

I went back to work today, after 16 months off.
I am very lucky to have a really helpful and understanding employer who has worked with me throughout my illness to ensure that my treatment  and family are given priority.

Based on the advice of my consultant, I have agreed a back-to-work schedule with my company. Starting with one day this week, two days for next three weeks, three days for the subsequent two weeks and then back to full time - all over a seven week period. We'll monitor this closely and see how my energy levels are coping.

I was worried about how I would feel (mentally and physically) back in the office today, but I'm glad to say that the experience has been positive and I'm actually looking forward to getting my teeth into some work. I think I'll be up and running quite fast.