Archive | January, 2012

Clinic- 23rd January

25 Jan

Hi everyone, just a quick update this week!

Clinic went well on monday, the doctors are really pleased with my progress. My lung function is up to 60% which the consultant said is fantastic at my stage- particularly given how ill I had got before transplant. They were pleased with all my bloods and took some more nebs away, leaving me on just 1 a day now which will hopefully stop soon anyway. More meds will stop after 3 months. The next step for me is to just carry on eating and walking etc and I need to make myself a bit more breathless when I exercise as this will increase my lung function more. It feels wrong making myself breathless now although will make sure I do! Im now walking completely without any aids, even on the stairs and I can now manage to sit on the floor and get up again (just about!).

This week has been really busy, sunday I went out for lunch, monday was a tiring day at clinic, tuesday I went food shopping and today I saw the GP, sorted all my old medication out that I don’t need anymore and cooked dinner for the first time in about 3 years!

It feels so good (although a little strange) to be out and about and treated like a normal person…. its a bit like the last few years haven’t happened! I am getting incredibly tired by each night though, its a fine balance between pushing myself and doing too much.

I keep being asked for a current photo, so at 9 weeks today post transplant- here it is….

I’m now looking forward to a weekend with Phil. Hope you all have a nice weekend 🙂 xx

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New photos!

18 Jan

Hi everyone,

I hate pictures of me being ill and have done my best to avoid them over the last few years but because everyone has been so kind and supportive I have put the photos of the different stages of my transplant journey on the blog for you to see. You can find them on the ‘Transplant in pictures’ page. Be warned…. Some of them aren’t too nice!

For those of you on the waiting list, please don’t be put off, the horrid photos are from on Ecmo because I was so ill, it’s not part of the usual transplant process! how I feel now makes every second worth it 🙂

Love Kerry xx

Clinic- Monday 16th January

17 Jan

Yesterday I had my first outpatients clinic appointment. I was looking forward to going as I was pretty sure that I was doing well although hadn’t felt great on Saturday so wanted to get checked. I wasn’t feeling ill on Saturday just cold and headachy with my sickness being worse than usual. I didn’t have a temperature and my lungs didn’t feel affected and I felt a bit better after an afternoon nap so I decided it was just tiredness and didn’t call the hospital. As it turns out that was the right decision because everything was looking good yesterday 🙂 it’s really difficult to know at the moment what is normal and what to worry about. Saturday was the first time I wondered if I should be getting looked at, but you also have to bear in mind you are going to have better days and worse days and you can’t phone the hospital all the time! The main things they say to look out for are temperature, weight gain (for fluid collecting) and a drop in lung function, although I am not doing my own lung function yet as my trachy hole not fully healed yet. I’m also very lucky to have a medical mother and aunt around me- I usually take their advice as to whether or not we call someone!

So yesterday, the doctors are happy with me, lung function is going up, fvc 53% and fev 59%, that’s with the trachy hole! I also got that looked at and the nurse said it is looking really good and healing nicely and won’t be too much longer before it’s closed. My x ray looks good and my blood levels are all stable. We went through all my medication and he said some of them can stop after 3 months and he took me off the horrid fungizone nebs which I’m really happy about because I really hate them! My weight is coming up slowly but steadily (and so it should be with the amount I am eating!). All in all a successful day and I even managed to send mum out for a burger king for lunch! I had quite a few questions which he answered and we also got a copy of the histology of the old lungs which was interesting. It confirmed that the lungs were completely useless and had been damaged by the ehlers danlos syndrome. I asked about whether it will damage the new lungs and they can’t say for definite but they do not think so, as the immuno suppressant drugs should protect the new lungs from that type of damage.

Im very tired today, It’s a long day at clinc, I had to get up much earlier than I’m used to, we left before 9 and didn’t get back until 5. I know some people travel much further than we do but I am still in early days of recovering and am used to my afternoon naps. I also didn’t take my wheelchair so I did a lot more walking and my legs are very sore today. It was really nice to be out of the house though and feeling more normal, I realised it was the first time at Harefield that I used the normal toilet and not the disabled one!

I had a lovely weekend seeing Phil, and he sorted all my stuff into my new upstairs bedroom which is now looking great and Jane and Jim can finally have their dining room back! I won’t see phil now til the end of the month as he is coming over every 2 weeks now I am better. It always seems a long time til the next visit though 😦 it was nice to see my cousins too who came home for dinner on Saturday night.

This week mum is back and we are taking it easy. Got some jobs to do around the house and it is Jims birthday on Wednesday. I am back to clinic on Monday again.

I know lots of people would like to visit and I can’t wait to see you all. For the first few months I have been told to keep visitors to an absolute minimum and I’m not allowed out in public unless not many people around, this is because my immune system is at it’s very lowest and my new lungs are very susceptible to infections which for newly transplanted people are very dangerous. These new lungs are incredibly precious and I have been through so much getting them that I’m not taking any chances of them getting damaged. So I will be in touch when I’m ok to have more visitors- please don’t think I don’t want to see you all!

I think that’s all my news… So I will say bye for now!

Love Kerry xx

Thursday 12th January 2012

12 Jan

Hello from home! (my uk home). 

Settled in very nicely, arrived home on Tuesday evening after a long day of hanging around the hospital just waiting for a few last bits from pharmacy! I was greeted by Aunty Jane and a lovely banner and balloon, very special 🙂 I had a wonderful home cooked casserole, decent mash potato and lots of veg made by uncle Jim and wolfed down the whole lot. Then I slept like a baby until 10am the next day in my new upstairs bedroom!

Wednesday I went for walk down to 5 houses down the road with Mum and back, she pushed the wheelchair in case I needed it, which I didn’t! Then I requested corned beef hash for dinner (my favourite! And can’t believe Jane had never tried it before!) then I decided to have a bath. Now the physios told me there was no way I would manage a bath for a few weeks yet cos I wouldn’t be able to get out. Me, being me, decided I wasn’t going to listen to that because I wanted a bath. I tried getting in and out first with the bath empty and found it easy enough so decided to go for it! No problems and felt lovely going to bed after 🙂 I decided that I needed some overnight snacks having been hungry the night before which really doesn’t help my constant nausea, so asked mum to make me a bovril sandwich and I had some grapes and an apple and some crisps!

Today we drove into Walton and had mcdonalds for lunch, then I came back and did 5 lengths of the patio and back outside (probably the furthest I’ve walked so far). 

Are you noticing a recurring theme? FOOD!! I am hungry ALL the time…. Mum has been laughing at how greedy I am!

I don’t have much more to update you on really, walking is coming on and most of the time unaided, I still need my stick for stairs and outside tho to help with balance. My legs are still weak and a bit wobbly. basically all going really well, still get very tired towards the evening and struggle with the tummy and sickness problems but with the amount of strong drugs I’m on this isn’t surprising. Hopefully will all settle with time.

I just still can’t quite believe that the huge mountain of the operation is behind me and all has gone so well since. These lungs are just doing so well, I hope I am doing my donor proud. I found out some details on the donor before I left, which I don’t feel is right to post on here, but it’s a strange thing to think about and I cannot describe the gratitude I feel towards them for the gift they have given me.

I’m back to Harefield on Monday for my first outpatients appointment which will be once a week. I probably won’t update the blog til after that now- unless I do something amazing before then!

Phil is over this weekend and looking forward to seeing him, not seen him since new year. It’s also Disney’s 4th birthday on Saturday, hope mum and dad spoil her as she will be staying with them…. Can’t believe she is 4 already!

Love Kerry xx

Home!

5 Jan

Well, today I woke up determined to conquer the stairs and get out of here and it worked! I did them all no problem and am now allowed home on Tuesday! I literally can’t wait… Won’t be coming back to Jersey until I’m a bit more recovered (I still have a lot of work to do and it does take time) and also I will be in clinic once a week here to be monitored (usually it’s twice a week to start with but he doesn’t feel I need that) so will wait for the appointments to get a bit further apart to make it worth the boat trip. Not sure if I have mentioned this before but you aren’t allowed to fly for about a year due to pressure on the join between your original body and the new lungs!

I also can’t drive for between 3 and 6 months which is a bit annoying but it’s something you need to be safe at and I’m definitely not strong enough at the moment!

So that’s today’s news. Have Dad here today and tomorrow which was lovely. Haven’t seen him since before Xmas and he was here to see the stair climbing…. And I used him for more talking practice!! 🙂

It’s been a good day today 🙂

Love Kerry xxx

Physio Update

5 Jan

I did 10 steps yesterday! 🙂

Wednesday 4th January 2012

4 Jan

Today it is 6 weeks since my life saving transplant and time for the first update from yours truly! I wanted my first post to be a bit more in depth but it’s taking me a while to think about everything I want to say so this will be an update on latest news then at some point in the hopefully not too distant future I will be writing about the ‘transplant tale’ from my point of view and my thoughts on it all etc!

Today started with a visit from Mr Simon, my surgeon, he just popped in to see how I was doing which was nice. He seems very pleased with me and was more interested in what bovril was (I have a pot on my table which I put on my toast in the morning!) can’t believe he has never seen it before!

So the updates…. Im still finding everything very tiring so bear with me if it’s a bit disjointed!

No longer have the acid reflux I used to have, I seem to be able to eat everything I want to which is just great given I lived off jacket potatoes for the last 4 months before transplant! I am still having major tummy troubles which is very uncomfortable and gone on a long time now. I’m told this is a combination of drugs, body being so weak and being tube fed only for a few weeks. My tummy is just taking a long time to settle but will do eventually (just hope it’s soon). 

I’m also suffering from bad nausea and headaches and I have managed to catch a cold this week. It’s not on my chest so hopefully will stay that way. These are all little problems but add together and just make you feel a bit miserable! The only other problems I have are itchy feet which drive me mad at night (medication is to blame) and numb legs which are still very weak and stupidly thin! Again this will resolve over time.

Now for all the good news and achievements:

Walking is coming on well, am now using a stick only- unless I’m very tired or wobbly then I use the frame but that slows me down!

Weight is going up slowly but increases everyday at the moment. My body is burning a huge amount of calories at the moment. I’m loving being back on the coca cola but sadly I seem to not like chocolate or Capri suns much anymore. The meds can change your taste buds. I’m not having any extra feeding or supplements and it’s just lovely to have my face back and no horrid tubes.

I’m wearing proper pyjamas and washing etc myself which is very nice and I don’t get breathless doing it! I need to get some proper clothes brought in and start being normal again, going to be weird after 2 years of wearing pjs! I’m also walking to and using a proper loo which is just great (it’s all the small everyday things you appreciate!). Iv just had a proper shower and hairwash like a Normal person which was just lovely. Can’t wait for a nice bath at home now.

I have been on the exercise bike to build up my leg muscles and I’m now starting on the stairs, this is the final thing to master before I can go home.

Dr Carby just been in to see me and said he has never seen me look so well. He is really pleased with my progress and was amazed it’s only 6 weeks since my op, he said iv done incredibly well especially given my state before transplant. We are set for home on 18th Jan (2 weeks today) , I just need the physios to be happy with my mobility, which isn’t quite there yet. If I conquer the stairs quickly then I can go before 18th. The Physio is coming back this afternoon to try some steps. Going to try really hard….

My trachy hole is healing but not enough at the moment so waiting for that but it won’t stop me going home now.

It shouldn’t be too long before I can come back to Jersey but it all depends if I get infection or rejection episodes. The first year is often tricky and you should expect a few problems but most of them completely treatable. For now  Aunty Jane is kindly letting me come back to her house til I’m ready to travel and it’s exciting as I’m going to have an upstairs bedroom! My poor cousin has had to spend Xmas clearing his room out so thank you James 🙂

Had my last stitches out yesterday. Aunty Sue was here to keep me company  and had the privilege of being the only person so far to see my scars. They are just amazing, two tiny neat lines wbich have already healed and faded. Goodness knows how he got the new lungs in! The huge benefit of having the surgery this way is they don’t break your sternum which all other surgeons do. This must save a considerable amount of pain because I really have hardly had any from my chest the whole time. I stopped any pain killers about 2 weeks ago, just taking normal paracetamol for my headaches this week.

Doctors have also started to reduce my medication and I am self medicating. You get given a ‘blue book’ which is your bible. Every day you write all ur medication out and times to take and also record your temp, weight and lung function. If any of these change by a certain amount you have to call Harefield and they will see you. There is so much to learn!

I had my first lung function tests with my new lungs yesterday and am really happy with the results. I was hoping for 40% as my starting point but the nurse warned me it might not be. My old lungs were 12% 6 months ago and yesterday’s scores were fvc 49% and fev 55%. and this will continue to improve as I get stronger and use the lungs more. It’s all just so amazingly clever. The team of doctors and nurses here are just brilliant.

So now I am having a Ct scan this week which will be used as a baseline for the new lungs. All my bloods and meds are stabilised and I’m getting my own spirometer so I can do my own lung function. Apart from that it’s just eat, put on weight and get stronger with physio.

All in all, great news and I’m really happy with it all. It’s just so amazing not to even think about whether you can breathe. I just can’t believe it’s all happened and I’m well now. 

I know it’s been said a million times but I can’t post and not thank everyone for all your lovely messages, support and prayers. Not to mention cards and presents. They have all helped me so much. This has been an incredibly hard journey but I’m really starting to feel the benefit now and for the first time in my life my body is behaving and doing what I ask it to (well with the exception of my tummy!)

I also want to ask you to keep my donor and their family in your thoughts. Their kindness is the reason I am here today and I will always be so grateful for that.

I am sorry I can’t reply to everyone individually, I have literally had thousands of messages! You are all so kind and I can’t wait to be able to catch up with you all when I’m back.

Gosh this is a long post, only meant it to be short! That’s another thing, I can’t stop talking! It’s just so easy compared to what I’m used to. I think I’m the only one enjoying this bit though!!

Lots of love Kerry xxx