So now I am on the way home!
Sorry I didn’t mention this in my last entry, but we thought it would be nice to surprise people!
Prof Johnson came round early afternoon yesterday and said that he was happy for me to go home today.
He gave me several bits of advice. For one thing apparently it’s not unusual at this time of year for patients to go home and get a chest infection straight away, and in which case he urged me not to suffer in silence however much I wanted to avoid going back into hospital. So he also said I should “have a quiet Christmas – act like you’re about 20 years older!”
The other thing he predicted was that being at home would make me feel “wiped out” for a while. He couldn’t explain why, but even though I’m feeling fine in my little room in hospital he said everyone going home says the same. There is just something about being in normal everyday surroundings (I have a feeling there’s also something to do with have had quite strong chemotherapy!). He said some people get depressed about it, but he encouraged me not to, because it’s absolutely normal and after a few months I will feel much better.
At about 4:15pm yesterday the registrar came along to remove my Hickman line. I had been expecting this to happen this morning, but it didn’t matter getting it out of the way early.
It wasn’t easy though. It’s supposed to be a 15-minute job. It took him an hour.
I know I’ve described this the last time I had a Hickman line, but it won’t hurt to repeat. The line is held in place, once the stitches have been removed, by a little cuff on the outside of the line, under the skin, which is designed to allow scar tissue to bind onto it and hold it in place. So removing the line involves cutting away that scar tissue so that the line can be pulled out.
In my case not only was my line deeper under the skin than usual, but there was muscle as well as scar tissue holding the cuff in place, so it was really difficult for the doctor to cut it out. It was all under local anaesthetic, by the way, but I had to ask him to top it up on two or three occasions. It felt like he was digging, and he commented that I should have been a body builder or something with the amount of muscle there!
Anyway, eventually it came out, and I’m just a bit sore.
So after, ironically, my best night’s sleep of the whole stay, I got up and packed my suitcase. And then I sat and waited like an excited child sitting on his suitcase waiting to go on holiday.
One of the transplant co-ordinators came round in the morning to go through things I need to know about looking after myself at home. It comes down to staying away from crowded places and people with illnesses, and sticking to a special diet for about the next 6 weeks. I have a follow up appointment on 11th Jan in Southampton, but if I have any other problems (like if my temperature goes above 37.9C or I feel unwell) then I need to contact Basingstoke hospital straight away.
She also emphasised how tired I will feel for the next few months.
Before I was able to go home a couple of other bits needed to be ticked off the checklist. Pharmacy had to get a bunch of pills up to me to take home (the TTOs). But the main thing was that I needed to be given a prophylactic (preventative) drug for a particular type of pneumonia. That is given via a nebuliser, but it has to be done in a special room with air filtration. So it’s by appointment, and my appointment was at 4pm (there were a lot of patients going home today). That’s when it was supposed to be! But they were running very late so it was more like 7pm! And by the time we got away it was almost 7:30pm. Tedious waiting!
All I had to do in the meantime was wait, read, write, watch TV. But at least the time has finally come to go home and enter the next phase of my recovery… and just in time for Christmas, which was not expected three weeks ago. Thank you everyone who has been praying for that. And thank you everyone again for all your encouragement and positive comments that have really kept me going.
I’m going to stop writing daily entries now, but I will update at some point on how the longer and more tedious part of the recovery is going.
Happy Christmas and God Bless you all!