Smiles all round

Yet again, I was excited for my hospital appointment. After my weekend in bed I felt much better and was intrigued to see what Dr Whittle had to say about my mad week in hospital. I was starting to get some side effects from all of the tablets I was on. After a week of dieting my weight hadn’t budged since putting on my ‘steroid chub’ and I was beginning to get a lot of spots. I was worried my hair might start to thin because of the Eltrompobag. It was better than the steroids though. I was also interested to see how high Continue reading

Discharge letter and a bag of pills

I got up earlier than normal and got ready to have my treatment. I still felt stupidly optimistic for the day. Anurse came to get me and take me over to the Magnolia Centre for my Rituximab. He was lovely and was surprised at how excited I was to have my treatment. He gave me a new cannula, took my blood for my platelet count, started the drip and kept me company until my mum arrived to sit with me. She brought some treats for us to sit and eat while the drip continued. Time flew by. My fingers were so tightly crossed they had gone numb, ‘please have more platelets’ I begged myself. The nurse came to tell us the good news, 30!!! I could go back home again! He sorted my discharge form and medication to be sent home with. I also got given an appointment for the following Monday to see Dr Whittle. Continue reading

Pancake Day and Platelets!

Pancake Day!! More than anything today, I hoped I could get my hands on some Pancakes! However it was not the case. The day was very uneventful in terms of drama. My nose was still very sore from the cauterisation, and some of the chemical used to burn the wound had also burnt all underneath my nose. It looked horrible, and was very uncomfortable, but it was a lot better than another nose bleed. Everyone that saw me made a comment, thinking I was having another bleed because of the large red wound under my nose. Continue reading

Nose Bleeds!

Today I planned on going to see Rachel again, she was still in hospital after having to go into theatre because of an internal bleed caused by labour. It seemed she was having just as much of a bad time as me. Pat had been admitted into hospital too because of heart problems he was having. I couldn’t really complain my friends weren’t close by. It was weird how we were all in hospital at the same time. Pat and Aimy came to visit me early that morning; it was really nice to see them both. Pat had been given some good news, he was been discharged already because his symptoms had settled down. The doctor arrived just after Aimy and Pat left, my count still hadn’t moved so they still couldn’t do the Lumbar Puncture, thankfully it meant I wouldn’t be having one after all. Pat had being telling me about his bad experiences of them and it had put me right off! Continue reading

Eltrombopag

When I woke up the next morning I was very confused, it felt like the night before had just been a very bad dream. I still had a headache though and the nurses checked on me very frequently. I saw a very friendly registrar who did a few tests on me. He told me they wanted to do a lumbar puncture to test the fluids in my spine to make sure I hadn’t had a small bleed that the scan hadn’t picked up. Continue reading

Friday 13th (how ironic)

With the new information and new outlook on life I was feeling optimistic for my 2nd dose of Rituximab. The day before my appointment I went for lunch with Rachel, Tom, Aimy and Pat. It was lovely to see everyone as a big group. We all had a lot to catch up on and talk about. I think I speak for the majority of us when I say my cheeks hurt from laughing by the time we parted ways. Although I soon realised that smiling wasn’t the only thing that was causing my cheeks to hurt. All along the inside of my mouth were big purplish blood blisters which were very uncomfortable. Continue reading

Support, help and inspiration

Over the next few days, I through myself into research, reading articles and looking for easy accessible support groups or forums. I wanted to educate myself more. There were so many questions I had; a month ago I hadn’t even known ITP existed. I found that the UK based ‘ITP support association’ was a brilliant source of information. It included lots of strongly supported information about childhood, teenage and adult ITP; however the website lacked personal support. Continue reading

A Hospital Day

Monday day was a hospital day. I didn’t really know what to expect, or if the day would be beneficial. I hadn’t really thought much about it over the weekend. My first appointment was with the surgeon. I was seen almost immediately by a nurse who weighed, measured me and took my blood pressure. My blood pressure was a little higher than normal but nothing alarming. Despite my attempts to each healthily, I had put another pound on since the last time I was weighed. I wasn’t too disappointed; a person’s weight fluctuates a lot throughout the day (even though I had an empty stomach in preparation for my ultrasound). The surgeon came to see me almost immediately after my measurements were taken. Continue reading