I arrived home last Wednesday, with a bag of medications.
Rather than do a daily blog, which felt appropriate in the hospital, I will update this weekly.
Week 1
It was good to be home, in my own bed at night, and not repeatedly disturbed. Nevertheless there was a nervousness about not having the support network on the ward around me. For five weeks there had been a constant flow of people into and out of my ward, and now just my wife nudging me to take my medication.
I had lost about 4Kg in hospital, and definitely a lot of muscle mass. I could walk around easily enough and even get up and down stairs. My hemoglobin levels hovered in the high 80’s, which is where they had been before the SCT but I had then been transfusion dependent; the levels should creep up slowly over the coming weeks.
Each day I have managed a short walk outside, slowly increasing the distance. Walk is an exaggeration – more like a ponderous plod.
For the first few days I was sleeping a couple of hours in the afternoon. Tiredness comes on quickly, and sometimes I would just doze off in a chair. I fade early in the evening – no late night TV for me for a while. I’m getting 10 to 12 hours sleep a day.
I have some swelling round the ankles. The cocktail of drugs, and recovery from the liver condition are causing that. It seems to be easing, but finding shoes to walk in is a challenge.
We need to be very careful about infection while my immune system is suppressed. Fortunately we are heading into summer. We are limiting visitors, and certainly asking people not to visit if they have an infection.
The challenge, as my energy returns, will be finding things to do.
Weeks 2 and 3
I’m slowly doing more. I can walk a couple of miles at a slow pace now, though I can overdo it especially if it is hot. Some days are more energetic than others. I still have the odd day where I am very tired and prone to drifting into sleep.
Medically the balancing act continues. My blood pressure has crept up, and so the medications have been adjusted. I have swollen ankles, but that is probably the impact of some of the drugs on my kidneys. The weekly clinics are reassuring, and my blood counts are steadily improving.
We’ve taken advantage of the finer weather to have visitors and sit outside on the decking. We’ve also had garden visits to other people. For the most part we are isolating.
Psychologically it is a challenge to adjust to this slower pace of life and to let things unfold at their own pace. I’m inclined to push the envelope, and I need to do this without pushing too far. There are some key changes coming in a couple of weeks – a bone marrow test, and then a steady weaning off some of the stronger drugs take me to the next stage of recovery.
Weeks 3 and 4
Sunday marked day 60 after transplant, which is significant. I start weaning off the immune suppressant drugs, and yesterday they did a bone marrow biopsy that will advise if the graft has taken well. Blood tests indicate it has, and my counts are steadily rising. As the immune suppressants are causing a lot of my current symptoms then hopefully things will start to return to normal.
I feel a bit nauseous sometimes, and I have swollen ankles. I had a couple of alarming dizzy spells when out, which we attribute to me getting overheated – my lovely thick jumper and puffer jacket have been confiscated. I tend to feel cold, which is explicable in terms of my body recovering, but I do not notice getting too warm so I will have to be careful. My blood pressure is high, and various medications are aimed at lowering that, but reducing the immunosuppressants should help considerably. The balancing act in terms of drugs continues, but it should get easier as we go forward.
The thing to look out for is GVHD (graft versus host disease). That is where the donor white blood cells attack the host body, causing a rash and possibly diarrhea, which are treatable with steroids.
So, all things considered, it is going well, and the team at St James are happy with progress.
We are seeing more people, but still being careful about infection. Coffee mornings on our decking or in other people’s gardens are one way of doing that. There are a few outdoor eateries that we are exploring. I’m also starting to check in online with a few friends, or via phone. I’ve kept up my treasurer role for a charity, which is not onerous but is keeping my brain active.
It is easy when a new symptom turns up to catastrophise, but I am managing the anxiety. I meditate daily and do some yin yoga regularly which help considerably. My sleep is generally good, other than needing more trips to the bathroom in the night. Keeping active physically and mentally is really helpful, but counter balanced by a tendency to get tired. I try to walk a distance every day, but I sometimes overdo it. Some days I fall asleep in my chair, and sometimes I have a couple of hours in bed during the day.
Looking back, I can see a steady if irregular improvement. My hemoglobin is slowly creeping up – 97 a week ago, which is higher than it has been since diagnosis but still anaemic. Some days I feel much more energetic.
The next milestone is day 100.