Harefield update

3 Oct

Hi everyone,

I’m currently sitting in my room at Harefield Hospital where I’m staying tonight. I’m not on the ward but in the relatives accommodation here which seems better but actually think I would prefer the ward where at least you have the nurses for company! one random observation- they give you a welcome toiletry pack with the basic essentials, soap, shower gel and shower cap, and then a shoe shine kit?! How odd…. I can think of so many other things I might need before that!!

I’m here overnight as I’m having a 24 hour impedance study (which is a tube down your nose into your stomach to measure acid reflux). A lot of people get acid reflux after transplant but some people don’t know it, if left it can damage your lungs which is obviously something we are trying to avoid so Harefield now test all their patients within a year of transplant. I’m staying here overnight so I can get the tube taken out as early as possible tomorrow because as you can imagine, it’s horrid and uncomfortable!

I flew to the UK yesterday and stayed at Jane and Jims last night, got picked up by hospital transport this morning. I had the tube put in about 10am which I won’t describe to you but wasn’t very nice- I’m really not good with my nose and mouth being interfered with anyway but I had a lovely nurse called Anne do it for me, she was the one I always spoke to and saw when I was on the waiting list for my transplant so was nice to catch up with her. She said she really can’t believe the difference in me (always nice to hear!) I had to go for an xray after as that’s how they check the tube is in the right place, of course it wasn’t so I had to go back and she had to push it in further, that means though I don’t have to have an xray tomorrow now in clinic. I’ve also had a CT scan today to review the lungs following my rejection 2 months ago so fingers crossed that looks ok.

I’m now back in my room waiting for tomorrow morning! I have to carry around a little handbag with a machine which the tube is attached to and I have to enter into it when I eat or drink and whether I’m lying or sitting down. I also have to enter any symptoms like a cough or heartburn or pain. It’s important that I eat and drink as normal to make the test accurate but it’s really hard with a big plastic tube down your throat! Swallowing is horrible and so eating is the last thing you feel like doing!

It’s really pathetic because I lived with a nasal gastric tube for about 3 months and although hated it with a passion I did get used to it so you would think having one again wouldn’t be too bad…. It is! Anyway only 24 hours then it can come out and I can scoff a yummy croissant from the canteen and enjoy it πŸ™‚

Tomorrow I will just have a normal clinic appointment, bloods and lung function tests. I’m going to ask to see one of the more senior doctors as have quite a lot of questions I want to ask them this time, especially if (fingers crossed) I won’t be coming back for a few months.

Then tomorrow, I’m quite excited as going to stay with my friend Leanne to look after her until her baby arrives, hopefully next week…. We are planning a week of tea, biscuits and general slobbing and pampering…. It’s going to be great πŸ™‚ don’t have a plan for coming back yet, haven’t booked a flight so will play it by ear but hoping to go via Brighton for a Royle Visit (that’s seeing my sister for those of you who may not get the link!)

I’m not going to lie, the last few weeks have been hard, iv really been struggling off my anti-depressants. Physically, still experiencing side effects but they are reducing now thankfully but I didnt think the pills were necessary as i was so happy so i really didn’t expect to be struggling so much mentally now. I like to think of myself as a fairly tough cookie (just my own opinion) but I’m thoroughly miserable and fragile to say the least at the moment. I’ve been feeling really negative and cry at everything- half the time I don’t even know what I’m upset about! This isn’t me to be like this and I hate it, especially now that it makes me feel guilty because I should be feeling on top of the world having been given my amazing new lungs and my life back. I feel like I’m not making the most of it at the moment. I’m sure it will get better but will be discussing medication with the doctors tomorrow as don’t want to carry on like this.

Last week was the first anniversary of my wonderful Grandma. I can’t believe it has been a whole year since she died. It still feels very unreal and I miss her more than I can tell you, she was such a support to me when I was poorly, it feels so wrong that she hasn’t seen me better but I know how happy she would be and she was always adamant my operation would happen even when others weren’t so sure…. And she was absolutely right πŸ™‚ I visited her plot and we had a nice family meal (with the few of us left in Jersey) to mark the occasion, just wish she could have been there.

The weekend before last I went to my best friend from primary school- Miranda’s wedding. It was such a lovely day and she looked so beautiful. Alex and her are a lovely couple and I will add a sneaky photo when I get back home- because I loved her dress so much, I think it needs to be on my blog πŸ™‚ hope they are having a fab honeymoon xx

Today I saw my transplant co-ordinator Brian and gave him my letter to my donors family. I wrote it a few weeks ago and feel happy to have passed it on now. I hope the family will be pleased to receive it and find some comfort from it. I don’t want it to upset them but I think it’s so important that I try to thank them (words will never be enough) and assure them that I will never forget what they have done for me and also what they have been through. I think most people never receive a reply from the family and I’m fine with that, I’m not even particularly hoping for one- I just want them to know how grateful I am. Brian has checked the letter already and let me know that it’s good to go- they have to check there is nothing upsetting in there or you aren’t giving too much personal information. So I will just have to wait now to see if I get anything back. I think I would like to know a little more about my donor as it feels wrong not knowing anything about them, but not sure how much. I think the more you know, the more real the situation becomes and its harder to get your head around everything. I will just take it as it comes I think.

I saw the foot doctor in Jersey on Monday to finally get my delightful ingrowing toe nails sorted out…. He agreed that it needs sorting, particularly given the infection risk of me being immunosuppressed. He will just do the worst foot first and see how we go. He isn’t happy to do under a general anaesthetic unfortunately so I will have to be awake and brave…. Again not something I’m looking forward to- mainly because my feet are still half numb and I can’t bear to even touch them myself, let alone anyone else, hopefully when they put local anaesthetic in my foot, I won’t mind…. Otherwise hope I don’t kick the doctor in the face or something!! He suggested taking the entire toe nail off but I didn’t like the sound of that- how on earth would you paint your toe nails properly in the summer- that would look very odd! I’ve opted for the smaller operation of leaving some nail…. Priorities and all that! πŸ™‚

Not sure there is any other news really… So for now I will go back to feeling sorry for myself in this sauna of a room, honestly I’ve never know such effective heating!! It’s funny to think this is where mum and phil spent all their time when I was in hospital…. I hadn’t been in this part before so interesting to see….

Love Kerry xxx

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One Response to “Harefield update”

  1. Anonymous October 3, 2012 at 6:31 pm #

    Dear Kerry, You are brave and strong and determined: Never doubt this – it is the reason why you are still with us and you have every reason in the world to feel very proud of yourself. I guess there were bound to be hiccoughs, but they are awful when you are living through them. Dan sends his love and best wishes…I guess he knows better than anyone what you are going through. I suspect the adrenalin high of getting new lungs and being so active has worn off, too. But please don’t be hard on yourself. We think you are wonderful and you are so allowed to have down days.

    Thinking of you often, with enormous hugs from Carolyn, David and families xxxxxxxx

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