I’m writing this from my ‘hotel room’ in the hospital. I came back up to Leeds yesterday afternoon. Missing most of the hot sun sat on the train. Typical. Luckily the sun was up here too and has been really nice all day today.
This is my second trip to Leeds and the plan was to meet with the Psychiatrist, Dr Hosker, today and then have CT and MRI scan tomorrow. And work from my hotel room in between. The hotel is provided for patients free of charge and a small fee of £35 per night for those visiting patients. To be honest when you are staying in the hospital and not paying stupid prices for hotel this £35 seems really reasonable. The rooms are spacious and comfortable. If the surgery does go ahead then they have said since I live a fair bit away from Leeds, once I have been discharged they will put me up in the hotel for a few days before I go back home. Just in case anything happens I am nearby. Not all hospitals are equipped to deal with living donor complications.
So. My appointment with Dr Hosker was at 9.30 this morning so I met with Katie (on of the coordinators) at 9am to catch up and go through some bits before hand. We went through what would probably come up in the meeting with Dr Hosker and also through the list of potential risks that come with the operation and after. I don’t know if I mention these stats before but they are two they mention a bit, I’ve noticed. Fatality is 1 in 200. Touch wood, no deaths recorded in the UK. About 1 in 5 have minor complications after surgery such as a chest infection or wound infection. Now this next stat I’m not sure if I’m remembering correctly but hopefully I am and not mixing it up with another. After the op i will have a number of tubes coming out of me for the first couple of days including one that will go in my upper body which they (if i remember correctly!) say there is about 15% chance of this nipping the lung and causing it to collapse. Good news is they know how to rectify it if this happens. Katie also told me about injections that they would give me the night before and for about 6 weeks after to prevent blood clots.
Next up was my meeting with Dr Hosker. He was really nice. His mission is to find out if potential donor’s are stable enough to make an informed decision. You go through your back ground, which for me includes depression. How you came to make the decision to come forward. The possibilities of post op pain and recovery triggering depression. They say there is a link between the post op and depression but this can be for a number of reasons including when the transplant doesn’t work out for the recipient. This isn’t relevant to me since I am altruistic and I don’t hear the outcome, but if you are donating to a family or friend it could be hard to deal with a negative outcome for them. Another thing that seemed really key throughout his questioning was my ‘support’ network. I never really though about as a donor needing a supportive network around me. But I have great friends who I know be helpful! If they aren’t I will blog about them :). back to the post op state of mind we decided it was best that i continue my medication throughout the surgery rather than stopping to avoid any relapses.
After I’d finished with Dr Hosker, I went back to meet with Katie who needed to retake my blood as they weren’t able to process my blood group from the last lot. I’ve never been squeamish to the point I could be sick. Until today. My vein decided it didn’t want to play nice and we had to wiggle the needle around quite a bit to get the flow going. For some reason I decided to watch and then continue to watched as the blood flowed. Never again. By the end I was flushed, my forehead was sweating and I was about to vom. It probably didn’t help that i’d not had breakfast. After I went to eat a fry up. Because what else do you eat when a fry up is on offer!?
Later in the morning Katie called to let me know Dr Hosker had given the ok. (I’m taking this as I’m certified not psycho!) Which meant tomorrow’s scans would still go ahead.
Then around lunchtime Katie called again to tell me they had my blood group back. A negative. Apparently there is only 6% of us A negs in the UK.She also decided to add some more tests for today and tomorrow. Chest x-ray this afternoon. Then in the morning, an ECG to check my heart and Spirometry test to check my lungs. This test looks to see if their are any current problems or the possibility of a problem happening in the future.
Whilst the hotel part of the hotel is nice. Not like your normal hotel. Just being here 24 hours feels like longer. You see some of the same staff, patients and visitors over and over again and it’s weird to think I am in here 24/7 for a couple of days and I’m not poorly. It can also be quite a boring and lonely place. So couple that with being unwell must be quite exhausting for the patients. I wish everyone I saw today a speedy recovery.
p.s Congratulations to my friend Natalie for running the London marathon the other week. Absolutely amazing. She looked knackered at mile 19 (sorry Nat!) but when we saw her again at mile 25 she looked great. Then in the pub she looked as if she hadn’t even run! If you fancy donating to PSC Support through Nat’s page please visit here
Post Marathon in the pub
And here she is crossing the finishing line