Yesterday I had my first outpatients clinic appointment. I was looking forward to going as I was pretty sure that I was doing well although hadn’t felt great on Saturday so wanted to get checked. I wasn’t feeling ill on Saturday just cold and headachy with my sickness being worse than usual. I didn’t have a temperature and my lungs didn’t feel affected and I felt a bit better after an afternoon nap so I decided it was just tiredness and didn’t call the hospital. As it turns out that was the right decision because everything was looking good yesterday 🙂 it’s really difficult to know at the moment what is normal and what to worry about. Saturday was the first time I wondered if I should be getting looked at, but you also have to bear in mind you are going to have better days and worse days and you can’t phone the hospital all the time! The main things they say to look out for are temperature, weight gain (for fluid collecting) and a drop in lung function, although I am not doing my own lung function yet as my trachy hole not fully healed yet. I’m also very lucky to have a medical mother and aunt around me- I usually take their advice as to whether or not we call someone!
So yesterday, the doctors are happy with me, lung function is going up, fvc 53% and fev 59%, that’s with the trachy hole! I also got that looked at and the nurse said it is looking really good and healing nicely and won’t be too much longer before it’s closed. My x ray looks good and my blood levels are all stable. We went through all my medication and he said some of them can stop after 3 months and he took me off the horrid fungizone nebs which I’m really happy about because I really hate them! My weight is coming up slowly but steadily (and so it should be with the amount I am eating!). All in all a successful day and I even managed to send mum out for a burger king for lunch! I had quite a few questions which he answered and we also got a copy of the histology of the old lungs which was interesting. It confirmed that the lungs were completely useless and had been damaged by the ehlers danlos syndrome. I asked about whether it will damage the new lungs and they can’t say for definite but they do not think so, as the immuno suppressant drugs should protect the new lungs from that type of damage.
Im very tired today, It’s a long day at clinc, I had to get up much earlier than I’m used to, we left before 9 and didn’t get back until 5. I know some people travel much further than we do but I am still in early days of recovering and am used to my afternoon naps. I also didn’t take my wheelchair so I did a lot more walking and my legs are very sore today. It was really nice to be out of the house though and feeling more normal, I realised it was the first time at Harefield that I used the normal toilet and not the disabled one!
I had a lovely weekend seeing Phil, and he sorted all my stuff into my new upstairs bedroom which is now looking great and Jane and Jim can finally have their dining room back! I won’t see phil now til the end of the month as he is coming over every 2 weeks now I am better. It always seems a long time til the next visit though 😦 it was nice to see my cousins too who came home for dinner on Saturday night.
This week mum is back and we are taking it easy. Got some jobs to do around the house and it is Jims birthday on Wednesday. I am back to clinic on Monday again.
I know lots of people would like to visit and I can’t wait to see you all. For the first few months I have been told to keep visitors to an absolute minimum and I’m not allowed out in public unless not many people around, this is because my immune system is at it’s very lowest and my new lungs are very susceptible to infections which for newly transplanted people are very dangerous. These new lungs are incredibly precious and I have been through so much getting them that I’m not taking any chances of them getting damaged. So I will be in touch when I’m ok to have more visitors- please don’t think I don’t want to see you all!
I think that’s all my news… So I will say bye for now!
Love Kerry xx