Wednesday June 24 - Tuesday July 14th. Back to being an outpatient

Its been a long time since my last post. I am back to my usual routine of twice weekly visits to the Haemotology Outpatient Ward at Kings Hospital, and I didn't want to bore everyone with continuous posts about transfusions.

Blood & Magnesium.

Not being an inpatient is great, I was beginning to go stir crazy spending two weeks in a small room. It's good being able to walk more than four steps from my bed to the bathroom as well as being able to go outside. Since I left Hospital as an inpatient I have been trying to occupy myself with things to do, as I am still quite limited in what I can and can't do. I'm not able to do anything strenuous, be in crowded areas due to my low immune system, drink alcohol etc. Its not exactly what I had planned for being a 21 year old. I have been out a lot with my family, such as going out to restaurants and being all cultural by seeing plays in the West End, as well as seeing my mates.


It's strange falling back into the routine of being an outpatient, its like I'd never stopped being one. Currently I'm still on lots of pills but I have recently stopped being on steroids which were part of the ATG treatment to help prevent side affects. To add to my usual transfusions of blood and platelets, I am now regularly having Magnesium transfusions, which I have had every time I have been back as an outpatient bar once.


The ATG treatment is still kicking in within me and I am taking 100mg of Ciclosporin tablets twice daily which are part of the ATG treatment. They cause my hands to shake slightly, but not quite as bad as Tom Hanks in Saving Private Ryan.

I'm just keeping the rhythm.

I was advised to go to a support meeting by my clinical nurse, and in all honesty I really did not want to go as it didn't seem like my kind of thing. And, well I was right. I left after about 30 minutes into the 3 hour meeting. I like to think that I've been fairly positive with all that has been going on since April, but I was the youngest one in the meeting by a fair bit which can be quite off-putting. Not everyone there had my illness, in fact most didn't. I felt that a support group can't really offer me much support if I am so clearly the odd one out through age. I won't be going back.


Yesterday (Monday 13th) was my busiest day at hospital since I had left being an outpatient. I had a clinical meeting booked with a Doctor who would be discussing my treatment and how things are going. I arrived early at hospital in order to have my blood tests taken before the meeting. During the meeting the Doctor referred to me as "the one who had sailed through the treatment", oh yeah, that's me, sailing through. This is basically as I haven't expressed any real side affects while in hospital which is why I was there for 13 nights despite being warned that I could have been there for 3 weeks. He asked me how things were going and if I had experienced anything, I mentioned my shaking hands which seems to be expected. I have also been having some problems with my left leg. Every few days or so, I will start getting a pain right at the top of the leg where it connects to the body. It's not a horrific pain but it's not particularly nice and can make movement fairly difficult. He asked me to lie on a bed and I had to lower my trousers while he felt the top of my leg. Again, my choice of boxers that day wasn't great as they had loads of robots on them.
We then went through my blood test results which he received during the meeting. My blood, platelets and magnesium are still fluctuating a lot which is why I'm receiving so many transfusions. I was told that I would be having 2 transfusions of blood, one platelets and one transfusion of magnesium.

After the meeting I went back into the ward to get my transfusions. I left around 7:30pm, making yesterday a fairly long day.

IT COULD BE YOURS!

Too much free time.

Thanks again to all those who are joining the Anthony Nolan register which just requires you to answer some simple questions and spit in a tube. Hopefully I won't be needing to find a match, but it is a great charity that helps a lot of people, and if the ATG doesn't work for me, I too will be looking for a bone marrow match. Please if you can donate blood to the NHS too, I can't underline enough how I am draining the brilliant NHS of all its stores of blood, platelets etc.

Thanks Conor

I would of added the picture of Suneel's but the language in the photo probably wasn't safe for some eyes. Cheers Suneel.