Friday June 12 - Tuesday June 16. Finished ATG treatment

The ATG treatment which is an immunosuppressive, is designed to stop my immune system attacking my bone marrow and consists of 4 long transfusions. The first bag which lasted 18 hours on Thursday June 11 went fine. I did have some minor side affects to it on Friday. Mainly consisting of itching and some small rashes, but this has since stopped. My blood sugar also rocketed to about 11.9, it should be within 4-7, but I think this may be because of all the sweets I've been eating since coming to hospital. As a result I was being monitored closely.

Almost as soon as I was up on Friday morning, after my breakfast and pills, another bag of ATG was being set up for me. Before I could have  the ATG my platelets needed to be above 30, mine weren't, so I had a quick bag of platelets before the ATG started. As Thursday's ATG had gone well, without any real problems apart from the itching that Friday morning, it was decided that the ATG could be sped up to about 15/16 hours. Once the ATG bag finished, which was just before 2am I had to have more blood samples taken from my Hickman Line, to ensure everything was still alright.


Before the transfusions on Saturday I tried to have a shower, as it would be nigh impossible to do so while hooked into a machine. Thankfully I have a Hickman Line protector that helps to keep it dry and clean for showers. It can be difficult to keep the part of the line that goes under my skin dry. As a result I had my Hickman Line dressing changed before my treatment continued. My blood tests that night had shown that my Magnesium was fairly low. I didn't even know there was magnesium in the body, I think it helps the muscles contract and stuff. Don't quote me on that. As such a magnesium transfusion was required while I had my 3rd bag of ATG. In a weird way this was quite cool as my Hickman Line has 3 lines coming out of it, meaning that I can have multiple transfusions at the same time. Now was my chance to have 2 transfusions simultaneously. This is how my life has become, I get excited about having simultaneous transfusions. The ATG bag was sped up to 13/14 hours as I've been coping well so far. The magnesium took about 2 hours. You can't really feel anything during transfusions apart from a slight coldness on the base of my neck/upper chest as they enter my blood stream.

My friend Jui kindly came up to see me on Saturday for a couple of hours and met my room mate Alvin. After my ATG was finished in the early hours of the morning, a bag of platelets was brought out for me, as they've been dropping quite fast during the treatment. I eventually went to bed just before 3am.

This has at least doubled since.

Sunday 14th was my 4th and final bag of ATG treatment! I woke up, had my breakfast and my ever growing collection of pills to take, as well as antibiotics and steroids. I required another platelet transfusion before I could get started on my final ATG bag. I had a couple more visitors in Olly and Smizz who came to see how I was doing.
My friend Alvin who I had been sharing a room with for the past few nights was going home that day so we said our goodbyes before he left. I was then moved to my own personal single room where I am now, which has been great so far. The final bag of ATG was scheduled to take only 12 hours. From now on I would be dealing with (hopefully minimal) side effects.

ONLY 1 MINUTE LEFT ON MY FINAL ATG BAG!!

Hadn't felt like this since my Birthday.

In terms of my physical well-being, Monday 15th has been the worst since I was originally taken to Lincoln Hospital on April 23rd. I woke up several times throughout the night with really bizarre dreams. I was up by 6am for more blood samples and the usual ops to be tested; blood sugar levels, pressure, pulse, temperature etc. My temperature had gone up fairly high to 38.9 and I was feeling really grim. The only way I can think of to describe it, is to imagine having a really bad hangover while having stomach cramps.

My recollection of yesterday morning is very hazy as I was continually slipping in and out of sleep, as well as an increased dosage of drugs, antibiotics and steroids. Because of how I was feeling extra samples were needed from me. This consisted of attaching fairly large vials which were already half full of solution to my lines, which would then take blood from me to be tested for infections. As they were already half full before they were connected to me, you could hear my blood going into them which was quite disturbing, but funny at the same time. It's strange sitting there with a nurse when you can both hear my blood spurting out. I then had another magnesium transfusion, this time sped up to 1 hour, as well as several more antibiotics transfusions. Because of the reactions I was having I also needed to have blood taken from my arms, which is disappointing as I was enjoying not being prodded with needles since I'd had my Hickman Line fitted. For some reason my veins were refusing to give any blood. The first 2 times the needle went in nothing would come out, but the third time was the charm. I was absolutely unable to even contemplate eating anything till late that evening.

I'm very observant.

My mum came up to see me at about 4pm while I was having a blood transfusion and left soon after my sister Grace and our neighbour Sam arrived to see me. Grace and Sam stayed for a couple of hours and left as another bag of platelets was brought out for me.

At around 11pm I was taken downstairs through the hospital for an x-ray to make sure I had no infections. The porter taking me wanted to push me in the wheelchair but I politely refused. The last few days I haven't walked any further than my bathroom and I wanted to use my legs. The x-ray only lasted a minute if that and I have since been told that everything is good which is pleasing. I didn't have a porter to direct me back to my room and ward after the x-ray, so I had to go find my ward (Davidson Ward) on my own. This was all going really well until I got into my ward and accidentally went into the room opposite mine, where I had a strange stand off with an elderly lady. I thought she'd came and stolen my room and I think she thought I was a nurse. I slowly backed out the room and went into the correct one where I soon had another transfusion of antibiotics.

Hickman Line holder has been a lifesaver.

As bad as I felt yesterday, I was in reality alright. It's more a feeling of strong fatigue and grogginess (just like a hangover) than any real pain. There's been no point where I've requested painkillers or anything. As well as this the staff were all very considerate and caring and certainly helped. I'm hoping that yesterday will be the worst that I feel during this illness. I've felt absolutely fine today so far, had more and more drugs, another antibiotics transfusion and currently waiting on my tests to see if I'll need any more transfusions today. My mates; Tom and Conor also came up to see me for a few hours. Bringing even more sweets and snacks. After my mates had left my mum arrived as well as my neighbour Barbara. I may be having another transfusion or two before I go to bed tonight.

Who makes pills this big?

For anyone reading this who ever needs to have a Hickman Line fitted. They can be quite uncomfortable and getting a Hickman Line Holder certainly helps. It also helps to keep them dry in the shower. I've used this site so I definitely can reccommend: http://www.centrallineholder.co.uk/

There's also pictures of me in the site if you can't get enough of my dashing good looks under 'Patient Blogs/Stories' and 'Patient Gallery'.