Could be quite a week

Plasma was ok today - hb levels stayed the same at 6.5. In preperation for the transplant (probably on Friday) if everything stays on track, I am going to have 3 units of blood on dialysis tomorrow. My hb is dangerously low for the operation so the blood should raise that. I was going to have an iron infusion today - I went to the ward and the nurses started preping the dose etc and looking for veins. I have no veins and the few that I do have I treasure. As the nurse was looking my consultant walked in and we discussed the actually benefit and need for the iron. As I was having blood the next day - we decided that I did not need Iron so I walked out.

I followed him into the blood room to have a cross match blood test (taken from the fistula) This is needed for the blood tomorrow. I mentioned to the doctor that the previous times I have had blood I have almost gone into anaphlactic shock. I got bumps all over my body and struggled to breathe. The blood is now filtered to remove the white blood cells and thus one should not react to it.

They will do another cross match for the transplant on Thrusday to ensure that all is good.

Emotionally I feel stable and calm, I think this is because I have become so used to hospitals, tests, dialysis, plasma over the past 2 years and especially the past 2 months. I realise that this whole process has been an emotional rollercoaster for many people (perhaps I have been in the easiest position in that stuff is just done to me and I am at the centre of it - I also have very little choice). The doctors that are trying this process and have worked hard to get to this stage - I reckon must feel some both emotional and professional stress and of course my close family and friends have had to be part of the waiting game and the treatment time.

I think in future patients should be told that the process can take 3 months - this is what I was originally told but for some reason it was then suddenly publicsed that it would only take a month. In my opinion it is much better to tell patients and all involved the longer time frame. This reduces expectation and building up of "final" stress levels.

Something people need to understand is that when the operation (transplant) is done this is just the next stage of this process. There are sure to be more obstacles and challenges ahead both in the short term, medium term and long term. Hopefully the transplant will take hold and from there we will see how things stablise. I think it is important that people realise that a transplant organ always needs special care and medical attention. It is not a natural place for it but medicine is becoming better and organ survival is becoming better.

Of to watch the Simpsons on the tv....

Evening.

Short post tonight. Want to get some sleep.

Did not sleep last night - eventually dropped off at about 4am, let myself sleep until midday. That helped

Dialysis was fine - took some photos which I will post tomorrow. Plasma tomorrow.

I have found something weird. I am finding that I am tearful when watching moving momenet in movies and tv. This is not normal for me I wonder if it is related to the treatment or perhaps just all that is going on?

Thanks to all of you who have contacted me and are reading this, it makes writing it easier..

Dialysis

Dialysis went ok today. Arrived at 1 and set the machine up. Got on at 1.30 and away by 6 pm. Sundays are good - no waiting around. Normal wait time is between 1 to 2 hours. That can be a real drag.

Going to try and get a fairly early night tonight - after match of the day. Have followed the doctors orders to eat calcium to stop me becoming hypocalciumic during plasmapheresis. Basically been eating cheese and drinking milk..

Not much else to say. Emotionally feel pretty stable and have not got butterflies yet. I am not looking for to having all the drugs put into me - basically in one day I will go from having a pretty normal immune system to basically nothing. But it is best not to think of that. I am given anti viral drugs and antibiotics to to and offer some protection.

It makes me think when people complain about having to take antibiotics - come and join my world tomorrow, that would stop the complaining.