Sunday, 27 March 2011

Harefield - the 1st meeting

I havent hardly been home or sat down for too long in one place since my last blog on monday and im knackered so this weekend, i have done very little other than watching tv, reading the paper and eating!! Anyway, on to the important matter of my trip to Harefield hospital.

We got there early tuesday evening and got in the room and watched tv and took in the surrondings. We then drove out to a beefeater which i found on a iphone app (yay for iphone) and i stuffed my face with a big burger and then a brownie!! My poor mummy who never gets ill was really bad and didnt eat, was up all night coughing and was very tired. She felt really guilty for being ill during this time but i just joked that they might offer her a transplant and think we was there for her!! :)

I didnt sleep anyway. Mum was coughing, i didnt have many pillows, i was hot which makes me cough and i was nervous. We was up early as the appointment was 9.30am. I threw up all my juice outside the entrance which was a good start. We met the transplant co-ordinator who explained what would happen that day, gave us abit of information and then i signed a consent form to allow them to test certain things. The morning was spent doing different tests, all of which i have had before: lung function, weight, blood pressure and sats, urine and sputum sample, chest xray, heart ultrasound and ECG, and bloods. What a performance in the blood testing place!! I had a line in already because im on ivs so i asked them to take it from my port. They could do it but everyones port is different so i told her about mine. The blood came out fine like it usually does but she had to take loads for all the tests (think there was about 12-15 bottles). After the first 30mls she changed syringes and then got my mum to keep moving the syringe about to keep the blood moving so it didnt clot. Then another woman came in and started putting the blood in bottles whilst the woman was still taking the rest from the end, I had 3 people in the room doing different jobs....i like to cause a scene and at least people knew i was there lol!!

After the test we got to have a break and some lunch. In the afternoon was a talk with the doctor. The 'main' man, Dr Carby, was away ill (just my damn luck lol) but the man we saw was lovely and spoke to Dr Carby over the phone anyway. We saw him for a hour and left at 3pm. He didnt say much about transplant, just the main info about getting on the list and what happens when, or if, you get the call. He wanted to know more about me, my health history and how CF affected me. He looked over some of the results of the tests they did that morning and said all of my other organs were fine except my lungs. I know that they are scarred and damaged, thats obvious, but its still not nice to see it in the xray or CT scan. There is an area in my top left lung that is bad and they are giving me a course of tablets incase there is a CF bug hiding in the area called Aspergillus. After that, he said that looking at the info given, and bearing in mind the test results that come back in 10 days are ok, then they are willing to look at moving me onto the next stage of transplant. This will mean me being admitted to a ward in Harefield for 3-4 days for more indepth tests and talks.

I left feeling ok about the day and we eventually got home at 5pm and i feel straight asleep until half 6. So now we wait until the results come in and try not to think about things too much until they do. I do want to go ahead with transplant as my life isnt the best quality now, but i need to take things at a certain pace in order to get my head around things. If things move too quick, thats when i panic and start to back out.

In other news, it was another busy day thursday and friday. Thursday was my best mate Stephs birthday so I went shopping for her pressies, cake and balloons which I then dropped off at Frankie and Bennys. She had never been there before so me and her family surprised her with a meal there and it was a great night. Friday I finished my ivs so went and had my needle out and spoke to Lance and Jen about Harefield and the tablets are being sorted to start next week.

x Lots of love x

1 comment:

  1. Sounds like you had a really busy day! I know what you mean about not rushing things. I think it's important to take things at your pace so that you're in control! It sounds like the team at Harefield are really nice too.

    Hope you're ok!