Day 9 to Day 32

Sorry for the delay in posting, but it's probably an understatement to say that the past few weeks have been a bit of a nightmare. I finished my last blog post by saying that it seemed that I had reached rock bottom - well I was wrong. It got worse.

In my last blog I mentioned that they thought I had an infection, and this seemed to be getting worse. However, on the night of Day 8, my temperature spiked again. Through Day 9 the temperature seemed to be controlled, but I was feeling very weak, and couldn't eat very much or take any tablets. My temperature spiked again at 5am on Day 10, and my blood pressure and oxygen intake also dropped. My consultant, Dr. Clark, came to see me at 8am and made the decision that I should be moved to the High Acuity Unit downstairs. They put me on oxygen and after an hour it was decided that I should be moved to the new Queen Elizabeth Hospital to their Intensive Care Unit. So, I was taken there in an ambulance, and was put in a very large room with lots of monitors. As well as all this, I seemed to be developing a red, itchy rash all over my body - which was very uncomfortable.

During the day I seemed to stabalise a bit, but there was very clearly still an infection present. Dr. Clark made the decision that I should have my hickman line removed and a new temporary line put in, just in case the infection was in the line. These procedures took place about 10.30pm that night. It became increasingly clear that the hickman line was the source of the infection, as when it was removed, I had a bit of a septic reaction with shivering and a high temperature. Once the line was out though, everything seemed to begin to settle.

On Day 11 my rash seemed to get even worse, but the itchiness reduced when I was given Piriton. I was also still feeling incredibly queasy. I received my last lot of chemotherapy (ever hopefully). Day 12 improved as my mouth was not as sore and I was able to start eating some soft things. I was also told I could go back to the Beatson! However, the ambulance did not come earlier enough to return me that day, so I did not move back until 9.30am on Day 13. When I finally did return I received a warm welcome from everyone, which was lovely.

Here is a photograph of Natalie, who was the nurse that looked after me in ICU - you can tell I wasn't feeling my best. As my mouth was so sore, it wasn't really possible for me to smile:

From Day 14 onwards I slowly started to improve, eating a bit more and managing to walk around the ward a little. They also slowly reduced the pain relief and eventually took it off completely as my mouth healed. The problems that still remained, and still remain to this day, are a feeling of nausea, especially in the morning, and a strong sense of fatigue. However, both of these things are to be expected post transplant and could last for a number of months - but I'll get there.

By Day 19 my blood counts were beginning to improve. (This bit is a bit difficult to explain as it is all scientific, but I'll give it a shot) - Basically, when I received my TBI they were aiming to make my blood counts fall to 0, i.e. my red blood cells, white blood cells, and platelets. This meant that when I received my donor cells, then my body was less likely to react to the new cells. As my new donor cells began to make themselves at home and duplicate, my blood counts slowly improved. In order for me to go home my neutrophils (the white blood cells that fight infection) had to reach 1 - on day 19 they were 0.3, so had slowly started to creep upwards.

As my line had been removed and replaced with a temporary one, on Day 20 I had to have the temporary line removed and replaced with a PIC line. This is basically a line that runs into your arm. The procedure was a little uncomfortable and I felt quite weak afterwards, but after a few days the new line felt quite comfortable.

On Day 24 my blood counts still weren't moving up very quickly, so the doctors decided to give me an injection of growth factor. This acts as a stimulant to try and push my body into producing more blood cells. This seemed to work very effectively as on Day 25 my blood counts jumped up from 0.3 to an incredible 3.5! This meant that I was basically free - and I was discharged on Day 26!

Whilst I was in the Beatson, the nurse looking after me was called Pauline, who was the most amazing person, and I'm very grateful for her care and the care of all the other nurses:

I was obviously very happy to be home, especially so near the festive period, but the joy was not to last long. On Day 28 I started to develop a temperature so we rang up Glasgow who referred us to Aberdeen - and I was straight back in hospital, only this time it was closer to home. It seems clear that I have another infection, but the doctors are not quite sure what the source is, so I have to stay here until they have done a number of tests. It's looking increasingly more unlikely that I will be home for Christmas, but I will keep hoping - if I am not, I will just have to make my own Christmas a week or so late when I am home!