Archive | May, 2011

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! ๐Ÿ™‚

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 ๐Ÿ˜ฆ 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!!ย 

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!


Wednesday 18th May

18 May

Hello, the weeks pass so quickly!

I have been arranging everything for my trip to the uk, trying to think of everything we could possibly need to organise, it’s like a military operation- there seems an awful lot, especially thinking ahead as it may be some time before I’m back in Jersey. I’m sure I am going to forget something major! A big thank you to Aunty Jane who is sorting lots out on her side for me xx

For those of you who have been fortunate enough this week not to hear me moaning about it, i have had a stinking cold! I have felt really rotten but I have been quite lucky that although I do have a cough, it hasn’t made my chest too bad and I have avoided increased steroids this time. Interesting fact that I didn’t know: Harefield will refuse a transplant to people too reliant on steroids over 10mg because your body won’t heal properly after the operation. I am currently taking 10mg daily and although the odd increased dose is fine, you just want to keep it to a minimum.
Anyway, back my horrid cold, you know it’s not too bad if I’m moaning, it’s when I’m too poorly to complain that you need to worry. And iv moaned lots this week! Have no idea how I managed to get this cold, no one else has had one!

The harsh thing is, I didn’t just get a cold, I have had 2 really nasty days of heartburn and gastric reflux. Monday night I was sick 8 times after a few mouthfuls of veg. It’s very hard for me to breathe and be sick, especially with a runny nose and it wasn’t much fun. Especially when phil decided I was making him feel sick so he had to go in another room and couldn’t help me.
Cue: super mum to the rescue again! Thanks mum xx
Anyway, now got even more tablets and hoping they will prevent future similar episodes. I really can’t afford non eating days. I have reached 38 kg which I’m very pleased with but still want to be more by my trip.

On Saturday, Michelle the lovely therapist who helps me, came and worked on my tired muscles and she said she could feel I have put on weight. I hadn’t seen her since my last hospital stay so really pleased she could notice the difference.

Think that’s about all I have to tell you for this week, it has really been quite a boring week, just concentrating on breathing and surviving!! Sorry no pictures either this week! Xxx

Wednesday 11th May

11 May

Hi everyone,

I’m having a fairly good week, been feeling ok apart from a few aches and pains and the odd wheezy night. Had a couple of nights lacking sleep but not a bad week in all.

It’s been a busy week trying to get jobs done and plans made for my uk trip. I had a good conversation with the transplant team at Harefield, obviously we don’t know anything more about a future operation but they are supportive of my deciding to stay in the uk for a bit from the beginning of June. There is still a lot to work out but am getting things in order so I’m ready and trying to think of everything that needs to be arranged! It’s a big decision as to how I get to the uk, no options are ideal but I think we have decided on the overnight boat, I don’t really have any experience of this one but I’m told it’s the best if you aren’t a good traveller.

The most exciting part of this week has been my lovely kind friend Mim sorting my hair out for me. It had grown so long and thin and shapeless, I hated it. She has given me a lovely new style which will be much quicker and easier to manage and as Phil kindly put it- I ” look like a normal person again”. Such a one for compliments, my husband!! I am going to impress you all by adding a photo of it to this post- a little treat for those of you who read to the end! ๐Ÿ™‚
they say ‘a change is as good as a rest’ and that’s exactly how I feel this week. I have been adamant since I got ill that I don’t want photos taken of me, but I have suddenly realised I hardly have any for the last two years. So these are the first ‘poorly’ photos to be publicised, it sounds silly but it’s very weird to see yourself so differently to how you think you still look.

I don’t think I have much more to report this week, still munching through the Easter eggs, don’t they taste so much better than normal chocolate? Weight is coming on well 37.7kg now. I’m aiming to be 38. Something for my appointment on 3rd June so fingers crossed. The heartburn tablets seem to be doing their job (when I remember to take them enough time before the meal!) so that’s good news too.

Also just want to say, thank you to everyone who leaves me messages and emails, it’s always so lovely to hear from people and I’m very touched by all your kindness. ย I do reply, it just takes me a while I’m afraid. I can’t believe how many people actually do read my blog, I need to think of how to make it more interesting….. Apart from getting the obvious transplant that is!

Lots of love
Kerry xxx

Saturday 7th May

7 May

Today was my sweepstake day, 7th May. There is now only 45 mins or so left of the day and I’m in bed in jersey- a transplant is therefore not looking very likely! I’m a little bit gutted I didn’t instinctively know my date and get it right (was secretly hoping I would!).

Anyway never mind, tomorrow is a new day and may be the one….

Other news, my weight is creeping up. Am 37.6kg today which is fairly decent, still go a way to go though really to hit that 40kg.

Hope everyone is having a lovely bank holiday weekend. I’ve just popped a sleeping pill so will say goodnight for now! Xxx

Wednesday 4th May

4 May

I thought it was about time I updated you all as to how I am getting on!

This is a rather exciting update because I am using a bluetooth wireless keypad with my ipad to type, it’s tiny so proving slightly harder to use- this may take a while ๐Ÿ™‚ it’s quite cool though- bright pink and made of soft rubber so it rolls up after use.

Anyway, back to more important things- like … me!!

Its been a week and a half since I got home. It took a few days to settle and feel better and then the second half of last week was pretty good. I felt much better than I have done for a long time. its still very hard work just doing the basics like washing and eating but i’m afraid thats just how things are now, it wont get much easier. I need to try and move around a bit more and do some walking- when breathing allows, that will get my muscles all a bit stronger which be important during transplant. The good news is I have managed to bring my oxygen down to a lower level since coming home which is good progress.

The weight has gone up slightly, I am 37.2kg today but its not really enough- really need to work on that. I have been getting through the easter eggs very well but been having terrible heartburn with every single meal at the moment. Its not fun and stops me from eating enough.

I had a clinic appointment today at the hospital, it takes a LOT of effort and planning to get me and sufficient oxygen down there for not a lot to be said and then time to come home! I have to say I was impressed with myself managing the car journey without any fuss or panics. That sounds silly but would have been impossible 6 months ago.

The consultant was pleased with me today and gave me a new tablet to try for the heartburn so fingers crossed for that to work! The main thing I wanted to discuss was my impending appointment at Harefield on 3rd June and how I am going to get there. He seems to think that Harefield will agree to follow ups being ok in jersey given the amount of travelling I would have to do. We have left it that he will discuss with Harefield. I am sceptical that they will agree but we will wait and see!

If I do have to go, at the moment I am thinking of going by boat and staying over with Aunty Jane (who lives in a convenient spot and very kindly doesn’t mind a houseguest!) for a while after and just see if I get that all important call any quicker. Obviously there is a lot to sort out between now and then though so nothing set in stone at the moment!

It’s just so difficult to know what the best thing is, I could really do with a crystal ball at the moment!!

It’s now getting late and been a busy day for me so I am off to eat more Easter egg then get to bed! I am still sleeping well on my lovely sleeping pills and he said today I can carry on taking them so happy days!

Love Kerry xxx