Thursday, 29 March 2012

Update- Last days in hospital, coming home

I have just got back from seeing my consultant haematologist, who we hadn't seen since before I went into hospital. I had a blood test and he was happy with all the levels and with my general progress since having the transplant. He said that my itch was probably to do with the chemo still in my body and should just wait for it to go, tiredness was expected still. I am due to see him again in two months time.

The last couple of days in hospital were ok. Was obviously very itchy and tired, but apart from that, much was the same. On the Tuesday morning, very early, a whole team of doctors came to see me. The consultant, two or three registrars, a couple of juniors and two medical students. Never have I felt more intimidated in my entire life whilst I was sprawled out on the bed in my pyjamas. The consultant did all the talking and checks, whilst all the others just stared and took notes. He said that he was happy enough for me to go home in the next couple of days, which I was naturally delighted with, having been in hospital for over a week.

On the Wednesday I was allowed home. WOOOOOO. It was a bit of a shock to the system as I had been away now for exactly three weeks. I was shattered. I got home and went straight to bed. It was the day of Purim, so my sister and a good friend had organised a Megillah reading at our house for that evening which was lovely, although I fell asleep half way through. The next couple of days my routine hardly changed. I still wasn't eating at this point so was literally sleeping, watching telly and sleeping some more.

A couple of days later I had to go back to the hospital for a routine blood test and to see the chief  transplant nurse. My blood levels were not good and had dropped quite considerably. They sent me back home with the same injections to boost the level of white blood cells and told me to come back next week to see if these had made a difference. They had and my levels went back to normal and the nurse called and said they weren't too concerned to call me back again and should wait until (today) when I was due to see the consultant again.

Monday, 5 March 2012

Not your average Friday...

I hadn't felt great most of Friday morning. Very light headed and my blood pressure had been pretty low, as well as my temperature on the increase. I had been  given an energy milkshake to compensate for lack of eating and to try and boost my energy. This resulting in most of it being thrown up, luckily caught in a bowl, but none the less... This was the first time I had thrown up or even felt nauseous since starting the transplant. Not a bad record. Eventhough I felt slightly better after having thrown up, I felt that the day wasn't going to end very well... And I was right.

From this, I had felt pretty rough for the rest of the day and spent the rest of the day in bed trying to sleep, which is really difficult when you can't stop scratching. I later got up to go to the toilet, came out feeling very light headed, my mum saw and ran over, shouting for my dad who caught me as I fainted. Next thing I know, I'm sat on the floor with my arm stretched over the doctor's leg, six to eight nurses running around trying to get me to come around. After a couple of minutes, I'm aware of what's going on, I had to wait on the floor for a few more minutes. They then moved me to the bed where I had to lay with my legs in the air to get the blood flowing back to my head and was hooked on to drips of fluids and a jelly like substance.

After coming back to slight normality, the doctor came me a full check over, put me on another platelet infusion had a look at my picc line and was not happy, She thought it looked infected and wanted it taken out straight away. There went picc line number two! The nurse removed it and it did look gross. She sent the end off for testing to check whether it was infected or not. Now that this has been removed, anuthing IV goes through a canular and they can take blood the normal way. This is not ideal, but the best they can do, and I'm not sure they want to fit a third line.

As for the rash, which is still quite dominant, they assumed it was an allergic reaction to anti-biotics (penicillin) and have subsequently taken me off it, but now they might think it is to do with the GCSF injections I have been having to top up stem cells (the same injections as before the stem cell harvest) but I had my last one of these today. We shall see what the result is. As well as this allergy, my skin has become very sensitive to the dressings used to cover up various wounds and has blistered around the areas the plasters once were. They're pretty minging, just have to wait for them to go on their own.

My hair and beard which had also started to grow back, are now falling out again. Going to need some more hats...

Right, I think that's it for the meantime! If there is anything I have forgotten, I shall add it to the next post! X

Friday, 2 March 2012


I have now been in hospital since Sunday and am completely neutropenic which means I have no white blood cells, so am very prone to infection and basically have no immune system. Since being admitted, I have completely lost my appetite (totally uncharacteristic I know!) and haven't eaten a meal in over a week. I pick at meals, but can rarely eat more than 2 or 3 mouthfulls. This is in addition to having a really sore mouth and being in a lot of pain when I swallow...

I have also come out in a rash all over my body, you'd think I'd be used to rashes by now, but this is like no other rash I have ever had. It is so itchy, red and hot. They have been giving me piriton and other anti-hitamines, but they don't really seem to be helping. Unfortunately. There is nothing worse than being constantly itchy! They do think that this rash is being caused by an anti-biotic I had been prescribed. They have since stopped the anti-biotic to see if this was the cause.

Since being here, I have also had to have 2 platelet transfusions, where they have been so low, that they have to give me more. They have also put me on drips for de-hydration (despite the fact that I have been drinking) but this causes low blood pressure. My hair and beard are also starting to fall out again :( but that was to be expected even though they had started to grow back. Will try and update again soon!