Sunday 29th May

30 May

Hi everyone! A lot has happened this week, both good and not so good but I have been very busy and that’s why this blog is a little overdue sorry! It is a specially long post, has taken me days to finish it, but lots has happened this week and it also may be sometime until my next post with moving to the uk this week. Just hope it’s not too boring for you all!

Poor mum caught my cold over the weekend although slightly different symptoms so we had to be cautious and keep apart. Thank you to everyone who always helps cover these situations, particularly my Nana who is always here at the drop of a hat, it is very much appreciated. I would like to list everyone who helps me but I would be here all day! 3 people that do deserve a special mention though are my lovely brothers and sister, Tom Kim and Ed. They are all so willing to help and give so much of their time, it’s about time I said thank you on here!

Next, an exciting story, on Wednesday I actually got dressed and left the house! I went down to the bridal boutique to watch Kim try on wedding dresses. It was so lovely to be there, it is a special part of her getting married experience that I really didn’t want to miss out on and I managed it all without a hiccup! Kim looked really beautiful in all the dresses and I can’t give you any more information than that! 🙂

Just as I was getting ready to go out on wednesday, Harefield hospital rang unexpectedly and I was quite relieved it wasn’t transplant time just for once! I thought that would be typical being rushed off the first time I’m actually looking forward to doing something out! Anyway no such luck, they were ringing to change my appointment for 3rd June. Now anybody who has seen me the last few weeks will know how much planning and thought has gone into planning my trip there, not to mention hundreds of pounds! I didn’t have time to think about it much on Wednesday but my appointment is now 8th June and one bonus is it’s actually Dr Carby’s clinic who is the main man! and as it turns out a few extra days to get ready is a very good thing!

After my busy day on Wednesday, I was so tired but then had a pretty awful night with no sleep. I was so breathless and just couldn’t stop coughing even though my chest muscles were refusing to move anymore to let me cough! The worst thing was I had a horrid pain down one side which I felt was perhaps more than muscular and wanted it to be checked out properly, having already had antibiotics the previous week. So after a whole morning of phone calls and waiting to hear back, I was admitted to the MAU (medical assessment unit) at the hospital. I went in the car with mum and Kim (2nd trip in a week!) and had usual tests and xrays. It wasn’t my usual consultant I saw later that day as he was away and not on call but the xray showed excess mucas in my lungs and an area of collapse in my right lung, right where the pain was. I am pleased I seem to be getting to know this useless body of mine, I am nearly always right about when something is wrong which is good because I always worry I am being too pathetic when I call the hospital but everytime so far it’s been the right thing to do. They started me on iv antibiotics and said the physios would come and help me get the mucas up ( lovely! ). Most people I come across on the transplant list have Cystic fibrosis and are no strangers to mucas and all the tricks to help, however my condition is very different and I have never really had anything that needs help before which although means I’m lucky, it also means I dont know what to do to help myself.

I had to stay overnight in the MAU which is a six bedded ward iv not been on before (not great infection control wise) but the worst part- it’s a mixed ward and guess how many females? That’s right, just me 😦 I also brought the average age down single handedly by about 30 years, it felt very odd. I even had a male nurse over night! Although apart from the snoring, they were all very quiet and sweet old men and didn’t try and talk to me too much! I had a fillet steak evening planned with Dad on thursday and he very kindly cooked it and brought it into hospital for me, so much more yummy than soggy sandwiches!

The next morning (Friday) my consultant came round and first of all got brownie points for complimenting my hair cut (not bad for a male doctor hey?!) and also told me there was no infection in the lungs which was great news and took me off the antibiotics. He explained that the collapse was from not using that part of the lung and not breathing deeply enough last week when I had the cold and pulled the muscle in my back. He said it should rectify itself in time. He put me on some long term pain relief so hopefully this won’t happen again. He also gave me some pills to help get the mucas moving and I later saw the physios who helped and left me with a flutter device which I have to use to help. He said it was up to me whether I stayed in until breathing was better or managed it at home and I opted for home. So they said if they were happy with me later that afternoon I could go. so about 5pm I got home (3rd journey in car this week- it’s all good practice for my trip!).

I was extremely tired when I got home but so pleased to be there. Usually when I’m not feeling right I’m happy to be in hospital as then I’m not responsible for my body and any decision making, however this time I was really not in the mood! It’s too close to my trip and I have so much left to organise that I just don’t have time for hospital stays! Obviously I would stay if they advised me too but I was determined this time I didn’t want to, I didn’t even pack a little bag to take with me which I usually do in case! Thank you to Mum for sorting that out and sitting with me waiting around the whole time. It is a bit disconcerting coming out of hospital not feeling better than when I went in but at least I know what is going on inside and it should just take time now.

The good news is they weighed me in hospital and 38.1 kg. Happy with that. Although I had a bit of a shock that it is only 6 stone. Had no idea how light I really am, I dread to think what my lowest weight is, probably 5 stone. Not good! The trousers I wore on wednesday which fitted me last trip to Harefield exactly a year ago, fell straight down when I stood up. I’m not lighter so it shows how iv lost muscle and my body shape has changed. Had to get my belt out!

Unfortunately was still coughing a lot on Friday night which meant I didn’t sleep great but Saturday I had more excitement. It was my brother in laws wedding and although I unfortunately wasn’t up to being there, the bride, Helen very kindly invited me round to see her before she left for the church. So dressed and in the car again (I’m getting used to it now I think!) and went to see Helen. She looked absolutely stunning as did the bridesmaids and they all had an amazing day by all accounts. Very sad I couldn’t be there but looking forward to seeing their photos.

I finished Saturday off with a visit from my lovely therapist Michelle and then a Chinese takeaway with Kim, Andy and my mum which was lovely. Was very tired as you can imagine so went to bed but my naughty husband failed to return from the wedding until 7am without letting me know which kept me awake worrying. He is in bad books today!! 

So this week is for sleeping, resting, packing and eating! There is so much to do. We now go on Saturday, condor luckily changed our boats for free which was great. Hopefully my next post will tell you how smoothly it all went (particularly the boat!!).

Lots of love Kerry xxxx

Special cake from Kim!

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8 Responses to “Sunday 29th May”

  1. Bill May 30, 2011 at 11:38 am #

    I know the feeling of partial collapse and know what you mean.Not being CF I also know what you mean by trying to clear chest of exess mucus.It’s something we have to learn.Glad you are “back up and about”.Keep well. Bill.

    • Anonymous May 30, 2011 at 11:56 am #

      Thank you for filling us in with all the details Kerry! We really appreciate you taking the time to do this. Thinking of you as you get ready for the big trip. Lots of love, Alison x

  2. Anonymous May 30, 2011 at 12:03 pm #

    Hi Kerry, Thank you so much for taking the time to fill us in on all these details! We really appreciate it. Thinking of you as you prepare for the big trip! Lots of love, Alison xx

  3. maria weston-dingle May 30, 2011 at 6:58 pm #

    Thanks for all that Ker. You write beautifully (a family trait). Haven’t you got an amazing family,all the lovely kind gestures(Geof and his steaks!).
    When you get here we’ll arrange to visit you (if allowed).
    Lots and lots of love from all here.
    Maria.
    X

  4. Jackie May 31, 2011 at 9:23 pm #

    Quite an epistle, Kerry! Well done for taking everything in your stride, despite the setbacks. Keep looking forward!
    Jackie x

  5. Sue Devereux May 31, 2011 at 10:57 pm #

    Hi Kerry

    Can’t wait to see you soon. Hope the journey over goes smoothly. Lots of love
    Sue x x x

  6. Mim June 3, 2011 at 9:41 am #

    Hi Kerry

    What a week you’ve had…..but all managed very well by you and of course your wonderful family :O)

    So glad you got out and about, especially to see your new sister-in-law, how nice was that! I always feel it is lovely to see the bride before she leaves the house, like a special sneek preview!! I hope your journey goes really smoothly and comfortably and that call comes very soon after:) We all send you our love and a BIG HUG and look forward to seeing back in Jersey soon. You will need another haie cut by then!! Mim Trev Dylan & Zak xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  7. Gerry Padden June 4, 2011 at 9:57 pm #

    Stay strong lovely lady, enjoy the midnight cruise with the two main men in your life,Phil and your lovely dad, keep looking forward, don’t look back, you are in our thoughts and prayers.
    love and hugs

    the Padden gang xxxx

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