Archive | July, 2011

Friday 29th July

29 Jul

Just a quick extra post as I missed something out from my last one, I cant believe I forgot to mention it! My brother Ed has done something very special for me, check this out:

Very clever way of getting another tattoo past Mum Ed!! πŸ™‚ Only joking- I am very touched by the gesture, thank you xxx

Also, i went to the local hospital yesterday to see the respiratory care team there as I have been struggling the last few weeks. They wanted to check my blood gases and carbon dioxide levels mainly. Finally after 3 different people and 7 attempts my arteries finally gave in and let us have some blood! My CO2 levels are raised slightly but nothing requiring any action as such. I am going to try and come off the oxygen for little times during the day as my oxygen levels are really quite good.

The other good news is that my spirometry figures haven’t changed since Nov. I thought with how I am struggling with the breathlessness that my lung function might have deteriorated more, but was ‘pleased’ to see we are still at an FEV1 of 12%!

Finally my physio has got me into a class at the hospital starting on tuesday, 2 hours twice a week in the hospital gym. This will be excellent for me exercise wise but also motivationally I think, although can imagine it is going to be pretty difficult to start with. We will just take it slowly and see what I can manage. Any improvement is worth it.

The respiratory care team here is so good- they have really gone out of their way this week to help me and I am very grateful πŸ™‚

xxx

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Wednesday 27th July

27 Jul

Edgar’s 21st birthday- can’t believe my baby brother is 21, and I’m missing all the parties 😦 hope he is having a great time- I’m sure he is!

I’m going to apologise on 2 counts for this blog, firstly it has taken so long to get the energy to update you properly that now everything is a bit jumbled in my mind and I can’t quite remember what I am supposed to be telling you and in what order!Β 

Secondly, the last week or so has been hard, I try not to feel sorry for myself but life really isn’t easy at the moment and its not much fun. I have had enough of missing out on things, sitting on my own panting away in pain and hearing everyone having fun in the next room. Don’t get me wrong, things could be a lot worse and I’m so lucky with all the support I get, but I am beginning to reach my limit now. I never get a break from this constant struggle just to breathe and this week has been a real reminder that I really am not well and time is ticking. I am really worried that Harefield just won’t call me in time, I keep thinking it must be soon but it might not be… Im sorry- you will probably find this blog does not have the usual optimism to it, but I guess it can’t always!

So to fill you in on things since 10th July, first of all I had my check up at the local hospital to check things had recovered since my last admittance (which I saw from my notes was actually diagnosed as pneumonia and type II respiratory failure (which basically means my lungs weren’t working enough to get rid of all the carbon dioxide). Think I was lucky this infection wasn’t worse. I had another x ray and they were pleased with the recovery and gave me an appointment for 4 months.Β 

Unfortunately the very next day, I wasn’t well. I had quite a nasty pain develop and over the next few days was getting more and more short of breath. In the end after a really bad night, I went into hospital on tues 19th to get checked out. I will give you the short version of events because it’s all rather boring to be honest. They couldn’t find any infection or in fact reason for the pain and breathlessness, despite very thorough tests so basically it’s just a case of managing these symptoms of my lung disease and hope they lessen with time. The main change is they prescribed me liquid morphine, oromorph to help with pain and should lessen the breathlessness too. I was quite weary of taking this one but the few times I have tried it, it’s really worked. I take an anti- sickness pill with it and so far no problems. I am trying to keep it though for when things are extra bad, I don’t like having nothing left to try!Β 

They let me go home on Friday 22nd, just in time to see mum and dad before they went off to my cousin Jonathan’s wedding. Congratulations to him and Emma, looks like they had a fantastic day.Β 

I was cross last week to miss a little get together I had organised with some friends for Suzie’s birthday. It was my only chance to see ying-ying who is over from hong kong too so was a bit gutted about that.

On a nicer note, I really enjoyed a ‘Wheatley’ family get together the other weekend before I was ill, it was lovely to see everyone.Β 

So after I got home on the Friday, I spent a very quiet weekend being looked after by Jane and Jim. I was very antisocial and slept for most of it. I have been so tired, I can still barely keep my eyes open now. Slightly worried that it is due to high carbon dioxide levels again as I have a few other symptoms like shaking. Need to go back to hospital to get my blood gases checked tomorrow. I also have caught a cold so not very happy about that. Really hoping it stays at head level though (fingers crossed!).

Right now I am in a good state to be operated on and it’s so frustrating watching time pass without being called and then I get Ill again. It’s so important that the call comes at the right time and I don’t know how many chances at that you get! All I can do is keep my weight and physio up but the rest I am not in control of at all.

I am extremely proud of my weight, 40kg is a huge milestone for me. I feel positively chubby πŸ™‚ let’s hope I can keep it going. The first thing the sister on the ward said to me was “you have put on weight I can see!” usually that comment wouldn’t be met with such a big smile!

I have also been doing well at physio and climbed the stairs today for my bath all by myself πŸ™‚ it did take a while but that’s ok!

So phil came over on Monday and we celebrated his birthday a few days late by eating chocolate brownies (his birthday cake!) and napping- all very wild! I am disappointed that I’m not feeling good and able to make the most of this week. Phil is here until Sunday and it is our only week together in goodness knows how long. I really wanted to be on good form for it. Never mind, it is still lovely to have him here.

Well I think that is enough moaning from me, sorry not to be more interesting but I guess there is no point in this blog if it’s not realistic!

Will end by saying happy 5th birthday to phil’s nephew Owen tomorrow! I hate missing birthdays but I’m sure he will have a great day and be spoilt rotten!

Xxx

Saturday 23rd July

23 Jul

Just a very quick post to say hello and let you know I am back at home. I got discharged from hospital yesterday. Still got lots of resting to do and I am very tired but on the mend.

Will be in touch more soon when I have a bit more energy.

Oh and will just say Happy Birthday to my husband seeing as it’s his birthday today! πŸ™‚ he is in guernsey this weekend but will see him and celebrate on Monday.

Xxx

Wednesday 20th July

20 Jul

Hi everyone,

Just a quick update on behalf of Kerry….as some of you may be aware she has not had a great week or so and yesterday she was admitted to the local hospital with bad breathing and pains. She is doing ok and at present they are just checking everything out but are not totally sure what is causing it all just yet.

She says she is being well looked after and the doctors are being very sensible and thorough πŸ™‚

She is hoping to be back in touch with everyone very soon (she is currently iPad-less in the hospital, but I’m sure she won’t be without for too long!!).

Jo xx

PS Hot off the press….Kerry has just informed me of something very positive to add….she was weighed yesterday and has hit 40kg – a big milestone! Well done Mrs. M πŸ™‚ xx

Saturday 9th July

9 Jul

Only a short post this week as not much to tell!

I’ve had a nice week with Mum which included one afternoon with Dad and a day with my good friend Leanne πŸ™‚

We have done one supermarket outing and apart from that just been a quiet week, sleeping, reading, doing jobs and of course eating and exercising!Β 

I also enjoyed seeing my friend Suzie who was kind enough to come and visit me and brought these delicious cakes for me:

My weight has finally reached 39kg, that’s the heaviest I have been since being ill so I am very pleased with myself for that πŸ™‚Β 

This week not only marked a year of being on the transplant waiting list but 2 Β years since I last worked. It’s amazing how quick the years have gone! Just hope by this time next year I have a very different story to tell!

Xxx

Monday 4th July

4 Jul

4th July: Independence Day in USA, and yet tomorrow marks the official anniversary of my being placed on the active waiting list for a double lung transplant! Hmmm, somehow the dates don’t seem to fit together….!

Anyway, it has now been a month since I left my home in Jersey to temporarily relocate to the Uk. It has flown by but not uneventfully! But overall, I am so pleased to have made the move.

I think this would be a good time to say a massive (ongoing) thank you to Jane, Jim, James and Jacob who have been so kind and opened their home up to us and all taken turns filling gaps looking after me etc. You have all been great, thank you and it’s been lovely spending time with you all again xx

This week started off lovely with a visit from Kim but unfortunately Edgar did not make it due to a cold. He did however, send on some all important giant chocolate buttons so brownie points to him (although would rather have seen you Ed πŸ™‚ )

Health wise, it’s been a mixed week. I have been recovering from the chest infection nicely. Been less breathless each day and apart from the evenings when I’m tired, I haven’t had too much pain either. Mabel has been helping me with the walking and I have been really strict with my exercises and feel my legs and muscles getting stronger already. Steroids are reducing now and hopefully not much further to report until my clinic appointment next Wednesday at local hospital to check everything has recovered. I have had a few other little health niggles this week which I won’t bore you all with on here but they haven’t been very pleasant and have made me a little miserable!

Had a visit this week from Frances which was lovely and Phil has just left after being here for 4 days. He is in Jersey now for the next 10 days which I think is the longest we have ever been apart. Let’s just hope absence really does make the heart grow fonder…!

The question is, will it be me he is missing?! πŸ™‚

Life's been tough for poor Phil this weekend!

I don’t really have very much to tell you this week I’m afraid, it’s been quiet, keeping cool & rested, and i’ve read lots of books. Mum is back tomorrow night which will be great, feels like ages since I’ve seen her! Hoping to see Dad this week at some point too.

Finally and most importantly, this week is NATIONAL TRANSPLANT WEEK!
Please sign up to be a donor and spread the word…. Thank you πŸ™‚

Xxx