Archive | June, 2011

Monday 27th June 2011

27 Jun

Hello everybody….. I’m back!! Sorry for the lack of information, it’s been a mixed week or so.

I will start with carrying on from my last post- had a lovely weekend with Tom (who bought Mum’s car over) and Phil here and even enjoyed an outing to a garden centre. Now we have a car here hopefully there’ll be more of these!

Other news this week, Dad has replaced Kim and I with two new “daughters” named Dot and Lu who have even had the privilege of going to work with him- wonder if they asked for endless coke and crisps from the shop like we used to?!

Dad's Kerry / Kim replacements!

Battle of the Favourites!

My favourite nebuliser died without warning- that was sad and a bit inconvenient but I do have a less efficient spare one and managed to replace it within a few days, kindly financed by the bank of mum and dad! ☺

Old Neb 😦

Another added bonus of my new home is being so close to my good friend Leanne, it’s so lovely to see here regularly. I’ve also enjoyed two nice visits from Grandma this week.

Now for the main event of the week; I woke up on Monday with a nasty pain in my side, saw the GP, got some medicine and hoped it would get better. It didn’t. It got worse, until Thursday evening, when I was really feeling quite poorly and had my first UK ambulance experience and was admitted to hospital. I was put in the Medical High Dependency Unit, which is part of the specialised chest ward in St Peters Hospital, Chertsey (conveniently, where Aunty Jane works!)

They diagnosed chest infection and I was dehydrated etc. I had one more worrying night where they threatened and tried me on the bi-pap machine. For those of you who don’t know, this is called a non-invasive ventilator and is the last resort before full ventilation- I hate this for 2 reasons 1) because it makes you scared (as you’re at the stage of needing it!) 2) it feels like you’re being suffocated and the mask is so tight and claustrophobic. The idea behind it is it forces the air in and out of the lungs for you and gives you a break. All good in theory, but on Thursday night I was not tolerating it. Luckily, my blood gases sorted themselves out without further intervention.

The hospital and the staff were all so lovely and very knowledgeable, feel very happy to be living close to this hospital now and glad to have made the links with them. They could have been better at taking blood though- my arms are really bruised in quite a few different places!

I came home yesterday and it’s good to be back and now I am enjoying a visit from Kim. Unfortunately I will not be seeing Edgar, as planned later in the week, as he has germs. Phil will be back on Thursday night.

So it’s a quiet week ahead for me, got a way to go to build myself up again and have strict exercises for everyday. The good news is I have not lost weight and I am 38.7kg today.

Finally, I need to introduce my new assistant, Kim and I have called her ‘Mabel’. She is not in the slightest bit fun or attractive but does make walking a fair amount easier! And no teasing please ☺

Mabel

That’s all for now.
Lots of love
Kerry xxx

Advertisements

Thursday 16th June

16 Jun

Just a quick post to let you know how it went today at Harefield.

We met Mr Simon, the head of transplantation at Harefield who was very nice. He said there isn’t a particular reason why I haven’t been selected as yet except for the fact that there are quite a few girls of my blood type and stature that are on the list, some of them longer than myself. Although he did say that he has been getting through this group more recently which is good news. He also acknowledged that I had been waiting a fair amount of time with no calls. It was a slightly strange appointment, I did feel that he was definitely assessing me as we spoke but wasn’t really sure what for!

Anyway, think i may have passed whatever test it was because he agrees with Dr Carby that I should do really well at transplant and basically, as we already knew they can’t promise anything but my profile will be raised now and he will keep me in mind. He is confident that they should be able to do something for me in time 🙂

We also had a very interesting conversation with him about the new ways they are doing the transplant operations and it all sounds very promising. I won’t go into all the details now as I am pretty tired after today!

So relieved to get today over with and to be honest it couldn’t have gone better. Dad just popped by this afternoon too so lovely to see him. He and Mum are off home tonight for the weekend.

Thank you to everyone for all your thoughts, prayers, texts etc, it means a lot 🙂 xx

Correction!

13 Jun

I made a huge error on my last post, a packet of giant chocolate buttons is actually a whopping 920 calories! Good job I read the packet again today! 🙂 xx

Sunday 12th June

12 Jun

This is a little fill-in post as I went straight into the Harefield news last time!

The boat trip over all went very smoothly, there was actually potential for great disaster as the boat actually left over 2 hours late and everyone was only boarded about 11pm- apart from us! We boarded straight away at 8pm with extra staff to help us, got all nicely set up in our cabin and we sailed round jersey waiting for the harbour to be ready to load everyone else. I was asleep before we even properly left! I felt a little bit queasy to start with and at the very end but apart from that no complaints at all. Again with disembarking, we were called first and they had turned our cars round for us so we were straight off! A short, uneventful drive followed to Aunty Jane’s house and we arrived there about 8.30am I think- all far too good to be true and I can’t praise the condor staff enough.

We then had a very nice relaxed Sunday and Monday, just unpacking and resting. Then on Tuesday, I surprised myself by wanting to go out. We drove to a big Tescos and spent ages in there, getting a few bits for my room we had forgotten and a supply of sweets for phil of course! (for those of you who don’t know my husband, he only eats haribo!). The sad thing is I really enjoyed this outing, it has been so long since I went to a shop and had a look at what I want! 

I also managed to get my new uk mobile sorted although was getting tired by this point and stopped listening to the salesman. He ended up giving us a rubbish deal but it was only a pay as you go so I have ordered a better sim online which should come next week. If anyone doesn’t have my new number, my jersey one is still working. All iv got to do now is learn to text on my new phone, I am so slow at it!

This weekend has been eventful, my cousins 21st party was last night, it appears to have been a great night. I’m afraid I stayed tucked up in my room (not from a lack of invite but wasn’t having a good breathing day unfortunately). I have now switched one of my nebs back to my spiriva inhaler which has really helped me.

Also I want to say a massive congratulations to my good friends Gem & PJ on the arrival of their gorgeous daughter this morning, Sienna. Can’t wait to meet her xx huge well done Gem xx

The other thing I need to share with you is the new love in my life- Giant chocolate buttons! I am seriously addicted. No joke I have eaten a whole big packet (one of the sharing packs) everyday since I have been here. 580 calories per bag. Enough said! Luckily they are half price in sainsburys at the moment!

Finally, my appointment to meet the transplant surgeon is Thursday this week. Please keep your fingers crossed for me. I will let you know the outcome in due course….. Just having a few quiet days until then to make sure I’m on top form. Phil will be back Wednesday evening which I’m looking forward to cos I miss him! 

Lots of love kerry xxx

Supplies!


Phil busy sorting my new room!

Wednesday 8th June

8 Jun

Harefield day! This is an extra special post just to update you on today’s developments.

I had my usual 6 monthly clinic appointment at Harefield today. We left just before 9am and drove up which took about 45mins. It takes quite a lot of planning with oxygen supplies etc but nothing compared to the last trip I did getting over here!

When I got there I met a couple of the transplant coordinators and nurses I know from before and they all commented how well I was looking and seemed pleasantly surprised that I was doing so well.

I did all my tests and gave my usual ‘gallons’ of blood (ok that is a slight exaggeration but it feels like it!) had xray and lung function tests and also an ECG and that was it for this time, nothing nasty! Then we went off and had some lunch in the cafe and then came back to clinic for 1pm.

We saw Dr Carby, (who is the main man), about 3pm and I really like him. I have met him a couple of times before and he is so nice and honest, very straight-forward. He could see the lung collapse on the xray but he agreed with Dr Lukszas advice and that it wasn’t a problem transplant wise. He also said that unfortunately my lung function is not any better than last visit which is slightly disappointing given I was quite unwell last time, but the good news is that it’s not any worse despite how ill I have been since.

Now comes the good bit: the bottom line is Dr Carby has always wanted to transplant me ASAP given my age and situation but the problem is (as we suspected) is that the surgeons are not picking me when the organs come up. This is because I look a lot worse on paper than in person. My low weight and recent hospital admissions and the late stage of my lung disease would make the surgeons think me unlikely to survive the operation and rehabilitation. However, Dr Carby is strongly of the opinion that this is not the case and feels I would do very well with a transplant. He is willing to recommend this to the surgeons and suggests given my new close location to the hospital that I come back next week to meet one of the surgeons so they can see this for themselves. Which of course we have agreed to. I’m very lucky to be getting this opportunity as I have been told before that the surgeons deliberately don’t meet recipients prior to transplant to make it an unbiased decision.

So we are waiting to hear what day next week I will go back but possibly monday or thursday. So fingers crossed. I’m really very pleased about this, obviously it’s still no guarantees but I really feel its promising progress- something we have been waiting a very long time for!

The drive back took a bit longer as got stuck in traffic and I’m very pleased to be home for an early night now. Will keep you updated as and when things happen xxx

Tuesday 7th June

7 Jun

Hi all, just a short post to let you know that I have arrived at my new home and all went smoothly on the journey. Settling in well and feeling very pleased to be here.

I have today to rest, then Mum arrives tonight and it’s off to Harefield for my appointment tomorrow. So fingers crossed for that.

Will post more details soon.

Love Kerry xxx