Home Sweet Home...again!

Well, I did manage to escape this morning and after a 3 hr drive was back home by lunchtime. I was very proactive in organising this discharge and really hassled the poor doctor yesterday to make sure my prescriptions were on the ward last night. The consultant came round about 10am and I was sitting ready with all my bags packed and having just finished my final dose of IV steroids (after harassing the nurses to get it started first thing this morning ;-)) He clearly didn't notice the packed bags when he said I could get home tomorrow. My heart just sank - it was a beautiful day outside and I couldn't bear to stay isolated in that room for 1 more minute, never mind 1 more day. Apparently you are meant to stay for 24 hours after the last dose of steroids but I chanced my luck and asked very nicely if maybe I could just go home today. He paused for a moment before agreeing that yes I could go home tonight. Needless to say he was only 5 minutes off the ward and me and mum legged it to the car - I wasn't waiting until tonight! I did check with the nurses and they didn't see a reason to stay so I wasn't arguing with that. It's so good to be home again after what was a scary few days and I have been a little overexcited and unable to sit back and rest. Hopefully tomorrow I will be able to chill a bit more. At the moment the assumption is that the steroids will have worked and I will have another bronchoscopy in two months time, and lung function checked at clinic in three weeks. It would be amazing if I could top my 75%!

The other good news is that I also asked the consultant about removing my peg tube, which is still causing me a lot of pain. He said as long as I was eating then it was fine to remove it. My weight has still not gone up but I am wondering if that has been related to the rejection, so am hoping it might start to increase now. I phoned the peg tube nurse specialist who has told me to remove it at night as you can't eat for 6 hours after taking it out - because it will all come out the hole!! Nice ;-) It will probably need some dressings for a few weeks until it closes over properly and since I have had it for a good few years, this can take a bit longer. I am going to bite the bullet and take it out tonight, so that might prove rather interesting. Incidentally if you are wondering how it is removed, it has a wee water filled balloon which holds it in place - I just have to draw the water out to deflate the balloon and pull it out. Easy Peasy. I had to do this to change the tube every few months anyway so I know what to expect.

While the consultant appeared to be in such an amenable mood I decided to ask about a good friends wedding which is in 3 weeks time. Since I won't be over my 12 week period and also still on higher dose steroids, I thought he would say no. He didn't though! He said it would be ok as long as I was well, that there wasn't big crowds (it's a small wedding) and to avoid snotty nosed children. I think I can manage that ok. I am absolutely delighted to get the go ahead for this wedding and am really looking forward to it. I am due back in Newcastle for a clinic in 3 weeks time, just before the wedding, so please keep everything crossed that they find no reason to keep me this time.

I am also pleased to say that Seb treated me to a few tail wags again, although he looked rather surprised when I walked in the door. He hasn't been as clingy this time, so hopefully he is getting used to that fact that I might occasionally disappear but that I do eventually come back. I will hopefully be able to take him out for a walk tomorrow, as I was trying to avoid meeting anyone today. It will be interesting to see if the steroids have made any difference to how easy or hard I find the walk and I'm really hoping I just continue to improve from now on. I know there may be more set backs but for the moment I am just trying to stay positive and enjoy the fact I am feeling well today.

Rejection - UPDATE

Well I got some great news this morning - following further lab tests it looks like I DON'T have any humoral rejection at this stage (and fingers crossed I won't develop it in future). So at the moment I am dealing with the more straight forward cellular rejection which is very common in the first year and normally responsive to the IV steroids. I finish the IV steroids tomorrow and should be allowed to go home immediately afterwards, so hopefully we can get organised early tomorrow and get on the road asap. As I am very immunosuppressed again I may not be allowed any visitors at this stage but need to speak to the doctor for more details of the do's and don'ts. I will be due another bronchoscopy in a couple of months but I think I will be back down at out patients before then. They use lung function to monitor if steroid therapy has been successful - I would normally have this rechecked before going home but as it is a weekend I won't be able to do this, and certainly am not hanging about until Monday for the privilege. It is quite possible that I could have another episode (or more) of rejection in the coming year but fingers crossed this is my first and last.

Emotionally I took a bit of a battering yesterday and really felt so worried about the implications of this uncommon rejection. There were moments when I even longed to have my old lungs back - as poor as they were, at least I understood them and knew what to expect. With the possibility of two different forms of rejection looming over me I felt so out of control as I battled with an unknown entity. The fear of what might lie ahead was overwhelming at times - as much as I try and stay positive all the time, sometimes your darkest thoughts can bubble to the surface and it's pretty damn hard to ignore them. I am also cursed with having just a little too much knowledge, and as my friend Stef pointed out - ignorance really is bliss. The last couple of months with my false call and then the real call, have been an emotional roller coaster, and yesterday I just had that awful feeling of 'it's just not fair!'. Thankfully I have moved on from my wallowing and self pity, and with the good news this morning feel more ready to get on top of this rejection and back to my crazy new life. As always, it's onwards and upwards!

Rejection

Well as you can guess from the title my bronchoscopy wasn't quite as positive as I had hoped for. Despite oxygen saturations of 100% and my lung function going up to 2.14 litres (75%) the lung biopsies have shown evidence of acute rejection. There are 4 stages of rejection, with 1 being mild and needing no or little treatment and 4 being very severe. I am between stage 2 and 3, which means it's at a moderate level and requires treatment - which is 3 days of IV steroids (for my medic friends that's methylprednisolone 440mg/day) After the 3 days my oral steroids will be back up (to 60mg) and then be gradually reduced by 10mg/week until I am back down to 10mg daily. The consultant was very surprised that I hadn't been feeling unwell and that my lung function was up. I have been a little tired and breathless walking the dog but I had put that down to being unfit and overdoing things. After all I have no idea what normal is and all I knew what that I felt better than I did before the transplant. One positive thing about this is the fact I should feel even better once it has been treated, and my lung function may well go up further. Acute rejection is extremely common in the first year, and especially the first few months, so this is not unusual. It is also very responsive to the steroid treatment so hopefully it will be under control asap.

The only other worrying thing from today was that the biopsy also showed some evidence of humoral rejection, which is a different type of acute rejection involving antibodies (proteins my body has made to attack the new lungs). Apparently this is very uncommon in lung transplants and the treatment would be different to steroids. At this stage however it is only a MAYBE as there are other tests they still need to carry out to confirm or refute this. The consultant feels that in light of how good I am clinically, its entirely possible that further tests will eliminate this. I did ask a lot of questions but the doctor felt there was little point going into all the ins and outs until we know for certain whether I have this. Needless to say I am quite worried about this and although I know I need to wait on the test results, my mind is racing ahead and imagining all sorts of possibilities.

So, I'm back to isolation at the moment as I am being seriously immunosuppressed with the steroids. This does at least mean I have my own room again, as last night I was on bay with 3 other ladies. One was a young girl who couldn't stop vomiting and needed me to press her buzzer for her, there was an old lady who belched all night and wandered to the bathroom with her bum hanging out the back of her gown, and another post-op middle aged lady who appeared to be sipping vodka from her water glass (i kid you not). I put my head phones on and pretended to be very engrossed in my pay to view TV ;-) I suppose it helped pass the time..

Mum is staying down here, as Andrew has to go to work. I felt terrible leaving wee Seb again, and when he saw me packing my suitcase his wee tail went down and he moped about all night. He then tried to bar my exit the next morning by sitting in front of the door and refusing to move. Andrew said he was moping about all day, checking the front door regularly to see if I was back. I think he is ok now though so hopefully he wont be too huffy when I finally get home!

I will update if I hear any more news about the rejection, but I can't imagine I will hear anything soon. Fingers crossed its nothing to worry about and I get home soon and back to enjoying my new life.

Sunshine and Gardening

I've had a good weekend - keeping myself busy and enjoying the sunshine (with my factor 50 on!) Yesterday we were up early and at Dobbie's garden centre first thing, as I still have to avoid busy shops. I know it sounds like all I ever do is visit garden centres, but we are just catching up on all the garden plans which were previously put on hold (plus I had a 2o% off voucher which was further incentive ;-)) We got the final lot of plants for the rockery and also a variety of herbs so we can pretend to be budding chefs. It's so great just being able to wander round a shop and not feel out of breath - I still find it hard to believe! Also the fact I can get up and out the door that early. I know I keep saying this, but not having physio to do and not waking up with a splitting headache, feeling unwell, has made such a huge difference to my life already.

My azalea - in memory of my donor

Andrew has spent the whole weekend trying to dig the rockery and put weed fabric down. This is something we wish we had done last year when we first built the rockery, but you live and learn. I have of course supervised all the work. I did contribute today by cleaning all the patio furniture in preparation for Andrew painting it (its metal and has gone all rusty). I did offer to paint it as well but Andrew pointed out that the paint is highly volatile and is probably not very good for my wee lungs. Good point. So instead I decided I would feed all the plants, which involved mixing plant food in 5 litres of water. I am not allowed to do any heavy lifting for 3 months due to the wound, but somehow it didn't occur to me that lifting a watering can with 5 litres of water constituted heavy lifting. I may or may not have repeated this four times. Funnily enough it wasn't long after this that my wound started to throb. I ended up having to take a cocktail of every painkiller I had, plus a heat pack to try and ease the pain. It may be the single most stupid thing I have ever done. I just have a tendency to get carried away - mostly because I have been so restricted in the past couple of years that the feeling of being able to do physical tasks is absolutely wonderful. Thankfully the pain seems to have eased now, so hopefully I haven't done anything that will impact on the healing process and as from now I am banned from lifting anything heavier than a cup of coffee.

I have continued to walk Seb every day and he is loving it. I am now managing to do the same route as I did 2 years ago, but the main thing holding me back is still my general fitness. I do still become breathless on any hills but I'm sure this will improve with time and for the moment I just need to pace myself. Seb is still trying to get used to the fact I am moving around the house more. He is used to me just sitting on the sofa while he naps in his basket, but now that I am more active he has been quite unsettled. He insists on following me around all the time and I'm not sure if he is worried that I will leave him again or whether he is just hopeful that I might take him another walk!

Seb trying to find a shaded spot in the garden

On the medical side of things, my blood sugars have been much better the last couple of days (which might be why I have more energy). I spoke with the diabetic nurse, who said I was doing the right thing and just to keep gradually titrating up the insulin. She said it was ok to take my 3 sugars in coffee but to take some insulin with this. Although this means a couple of more injections a day, it is worth it for good sugar control .... and I really couldn't give up my coffee ;-)

I don't know if I will be blogging for a few days as I am off to Newcastle on Tuesday. I will hopefully be back on Thursday night after the clinic, unless I have any rejection in which case I need to stay for 3 days of IV steroids. Hopefully not though! I am still going to do my transplant questions post, although only one person has actually asked me a question. You are obviously all very knowledgeable or all too shy ;-) If you wanted to ask something but are put off commenting publicly, then you can use the guest book privately. Otherwise I am just going to make up my own questions which could prove interesting to say the least...

Hello, this is Seb. Mummy says I can have 10minutes on the computer, but then its my bedtime. I wanted to write my own message to Daisy and Minnie. I have to agree with you both about the horse poo. It is the best thing since sliced bread. In fact I even prefer it to pigs ears. Not only do I like to roll in it, but its also rather yummy. Papa D nearly had a fit when he saw me munching on it, and he tried to grab it from my mouth. I mean, calm down, its not like I was eating dog poo!

I must say its great being back with my mummy. I don't quite know what's come over her but she keeps taking me out for walks. I think maybe she has been taking drugs of some kind or she has had a stroke. Something must be affecting her brain. Not that I am complaining of course because I do love going on my walkies. She does seem to get annoyed when I stop to sniff things and she tries to pull me on. I just dig my heels in and throw her a look. I mean, is a dog now allowed a wee sniff? She also gets annoyed when I stop to pee on everyone's wheely bin but personally I don't know what the big deal is.

I am really enjoying having my own garden again. When I came home I went outside to tell everyone I was home but then my mummy told me 'that's enough!' and made me come inside again. She is such a spoil sport. To get her back I have started to scratch the back door pretending I want in, and when she comes to open it I just sit on the step and stare in the opposite direction. it drives her mad! She says silly things like 'i will count to 3!' and then she shuts the door again. I just wait until she sits down and then I scratch the door again - it seems to really wind her up but I think its so funny. I tried doing it to Granny T but she just told me to 'get in!' and I was too scared to do otherwise. She is quite strict.

I will have to go now because mummy says my ten minutes are up now and she wants to check her emails. I think maybe I need an email address. In fact I think I need my own blog then I can really start telling you some stories ....

Sugars, scones and pink nails!

I had a bit of a tired day yesterday and found myself struggling when I took Seb for a short walk. Impatient as ever I was really quite upset about this and felt like I wasn't moving forwards at all. I did however later discover that my blood sugars were really quite high, which probably explains why I felt so tired. It may have been something to do with the scone and jam and coffee with 3 sugars that I had earlier in the day ;-) It's hard trying to get the balance between controlling my blood sugars and gaining weight. When you have CF related diabetes you are told to continue with a normal diet and adjust the insulin accordingly because it is so important to keep you weight up. I'm not entirely sure if that rule still applies now I am post transplant, but I do still need to put weight on, so for the time being scones are still on the menu. The CF nurse has taken a note of all the blood sugars I have recorded and is going to show them to the diabetic nurse for further advice. I probably just need to start taking some insulin with snacks as well as meals, which shouldn't be too much hassle.

I also got some feedback on the peg tube situation. The CF consultants both agreed that I could remove the peg tube, however they also ran it past the outpatient clinic at Newcastle (who are now responsible for my care) and they were not keen for it to be removed. They felt it was far to early at this stage and should I have an episode of rejection or infection I may need the peg tube. They were also concerned that at the moment I am still underweight and need to put on at least 4kg to be at my target weight. I was really upset about this as it really is causing me a lot of discomfort. It become really painful when I am walking and is also waking me up several times during the night. It is in fact much more painful than my wound, which just seems counter productive to me. Newcastle did say that they cannot stop me removing the tube, but I feel if I do that I will look reckless and non compliant, and I don't want that to be their first impression of me. My plan at the moment is to suffer it until next week and discuss it with Newcastle team when I am down for my bronchoscopy. I am willing to use an NG tube if necessary for overnight feeds so hopefully I can convince them that it's safe enough to remove the peg. Fingers crossed.

Today I was less tired and managed a bit more. In fact I took Seb out twice! Just for short walks, but hopefully building up my stamina slowly but surely. He couldn't really believe his luck when I shouted walkies for the second time -he almost looked at me with utter disbelief. It's all very novel for him at the moment and he gets a bit overexcited about me taking him out. I'm sure this will wear off soon. My legs are also aching from climbing my stairs, which just shows how unfit I actually am. I don't think I had appreciated how much I had deteriorated during the 2 years on the transplant list. I still can't do as much as I could when first listed, so that tells me that the biggest things holding me back is the fact I am seriously out of condition. This is something that will improve gradually over the coming months and I will just have to work hard and stay focused. Already the stairs are starting to get a bit easier and I'm sure it will be no time at all before I can run up them. Maybe!

This afternoon my friend came over and we had a good catch up, which mostly consisted of me talking a lot. I'm just making up for lost time. I think she noticed a big difference in me, even with simple things like how I used to lean forward on the kitchen worktop while making coffee because I was so out of breath, but now I can just wander about the kitchen effortlessly. It's interesting to hear these things, as sometimes it can be so subtle that I don't notice the differences myself. Speaking of differences, something else I noticed is how pink my nails are! My nails, especially my toenails for some reason, were usually a dusky blue but now they are nice and pink and healthy looking. Simple, yet so significant.

I am thinking about doing a post explaining more about transplant and what this means for me. People have been asking questions such as 'do these lungs have CF?' 'will I still get chest infections?' 'can you get a second transplant?' I will try and answer some of these questions, so if you have any others (no matter how daft you think it might be) please leave a comment and I will do my best to answer them. This idea came from someone else's blog, but I thought it was a good idea so I am stealing it;-)

New Beginnings

Tuesday morning was spent making hundreds of phone calls trying to arrange uplift of all my equipment and try and arrange bloods tests and prescriptions. The chemist picked up all my portable cylinders but the oxygen concentrator company need permission from my doctor before they will arrange uplift! The CF nurse came and collected all my IV medication and old nebuliser (I have to use a new one in case bacteria are lurking in the old one). The wheelchair is getting uplifted in a couple of weeks and then I'm only left with the stair lift and bath board. I won't do anything hasty about the stair lift as any episodes of acute rejection or infection could leave me very breathless so it might be needed. I also don't really want to give the bath board back because it's great for shaving your legs, and Andrew likes it to put his shampoo and shower gel on ;-) It's a great feeling to gradually get rid of all these reminders of my life before - hopefully they will all be gone in the next few weeks and I can really have a fresh start.

In the afternoon mum and I took Seb to the local country park. He loved it! So many smells and new things for him to investigate. We just did a short walk round the pond, but it was great to get out in the fresh air and enjoy some nature. When we returned Seb collapsed in a heap and went straight to sleep - must have been hard work doing all that sniffing. He is being very sooky at the moment and on his absolute best behaviour. I wonder if he thinks we sent him away for being naughty! I'll try and enjoy the good behaviour while it lasts..

Yesterday I had to get bloods checked in the morning so the GP came out to do this. It was great being able to get up, showered and dressed and still be ready first thing. Not having physio to do is making a huge difference to my mornings, as is the fact I just have a wee bit more energy so can get myself organised that bit faster.

In the afternoon I dragged mum to the garden centre again. I wanted to buy a flower or tree to plant in memory of my donor. I was looking for something that would flower around the time of her anniversary. I eventually decided on a beautiful evergreen azalea which had bright cerise flowers in the spring. I got a lovely big granite pot for it, so I can take the plant with me should I ever move house. I also bought some other bits and pieces and poor mum had to push this huge trolley around while I sauntered around shouting instructions. Shame I can't lift anything heavy ;-) I saw a bird table I wanted (been looking for ages) but there was no way it would fit in the car, so when Andrew got back from work I insisted on going back to purchase the table, as he can fold the seats down in his car. I may also have purchased a bird bath (the old one blew over and shattered). Andrew continues to be worried about my spending since the transplant. To be fair I had kept birthday money for the bird table, although I hadn't budgeted for the bird bath. You have to live a little though..

The main problem I am having at the moment is with my Peg tube. For those who have followed my blog since the beginning may well remember me talking about this before. The peg tube is small tube that goes directly into my stomach and was used for overnight feeds to give me extra calories. I have had problems intermittently with this tube, where I get severe pain in the surrounding muscle. It is brought on with walking, so I think it has flared up because I am now more mobile. The pain is so bad that it stops me walking any further and is also waking me up several times during the night, despite the fact I am still on strong painkillers for my wound. I have asked the CF team if I can have it removed and they will discuss it today. The main issue with having it removed at this stage is the fact I need to put some weight on and have not proved that I can do this with eating alone. I did however suggest that I could use a nasogastric tube if I needed to feed a couple of nights a week for extra calories. I feel so frustrated that I should be exercising but am actually being limited by this. It seems counter productive to me. Anyway, I will let you all know what the outcome is!

p.s Seb says woof woof to Daisy and he agrees that horse poo is rather lovely ;-)

The Grand Reunion

Well, yesterday was the big day - when wee Seb came back home! He knew where he was right away and was desperate to get in the front door. When I opened the door I was treated to a few excited tail wags (a rarity from Seb) before he sprinted through to the kitchen and stood at the bark door. He then spent the next half hour outside barking at loud volumes and kicking up grass, just so everyone was quite clear that he was back in town. He was a little unsettled at first because he wasn't sure whether he was leaving with Anne and John or staying with us. He did bark when they left just in case they had accidentally forgotten him, but he soon settled down and was straight back into his usual routine.

After lunch I went upstairs and he followed me to the stairs and dropped his tail in a dejected manner, thinking I might be going out. He then saw me getting my boots on and began sighing loudly with despair. I then asked if he wanted to come with me - he cocked his head to the side with a quizzical look and then literally flung himself at me in excitement. He wouldn't let Andrew put his lead on.. it had to be me. We all went for a short walk and I took the route I used to do pre-transplant, which is a 10 minute walk, although make that 15 minutes to include Seb sniffing every tree we passed. I actually found it a lot harder than I expected and needed to stop a fair few times. I was a bit disappointed but Andrew pointed out that I still have the fitness of someone with 20% lung function, so it wasn't going to be that easy right away. I think I'm too hard on myself. Hopefully the more I do it, the easier it's going to get. Seb was pleased enough with his wee walk so that's the most important thing.

I was a bit bored in the afternoon because I have all this new found energy but am quite limited with what I can do at the moment. I offered to help Andrew paint the hut, but he thought lifting a paintbrush up and down would probably constitute putting pressure on the wound. Sensible man. I did hang the washing out though, and it's probably been well over a year since I did that!
I then caught up with a few things and made a list of all the people I have to phone to get all my equipment removed, so that will be todays task. The sooner I get rid of the oxygen etc, the better.

Since Andrew was out painting the hut I decided I would try and make dinner (not sure when I last did this). I was getting on really well until I lifted the pot to drain the rice, and I felt a searing pain through my sternum (breastbone). I sometimes forget that they did actually cut that bone and I think it is now held together with some wires (takes 4-6months to fully heal). I was told not to lift anything heavy but I didn't think the pot was that heavy. Needless to day I was very sore for the rest of the night and needed to take my stronger painkillers to try and settle it down. Very silly girl. It seems to be ok this morning though, so hopefully no harm done.

The other thing I did was order a medi-alert bracelet so that in a medical emergency the doctors would know that I have had a transplant. Newcastle advised me to do this because there are certain drugs, including some antibiotics, that can be fatal when mixed with my anti-rejection drugs. I am going to make a card for my wallet too, but thought I should have something to wear when I out walking Seb on my own. I managed to get one that is just a canvas strap with small metal disc, so it doesn't look too bad in the picture, although I will reserve judgement until it arrives.

I probably won't update my blog daily daily from now on, so if I don't post then don't worry, I'm probably just too busy enjoying my new lungs :-)

First Day home...

I had a great nights sleep back in my own bed and felt much better this morning for it. I still can't believe how much better I feel in the mornings compared to before the transplant (although I'm still quite partial to a wee long lie). I was up fairly early this morning as I have to take my first dose of anti-rejection drugs at 8am and I couldn't get back to sleep afterwards. I had a lazy morning fixing my eyebrows(!), washing and straightening my hair (everyone in Newcastle thinks I have mad curly hair) and generally beautifying myself. I finished all that and realised it was still only mid morning. Usually by mid morning I would just be starting my physio, having just about gathered enough energy to do so. This would take an hour, twice a day and more if I had a chest infection. That's two whole hours extra I have every day now (or two whole hours extra in bed!) IV antibiotics (which I was on regularly) would take up another half hour three times a day, so that's even more free time. I'm sure soon enough I will wonder how on earth I fitted it all in.

I then spent quite a while trying to sort out my medications into various dosette boxes. Although I no longer have 'CF lungs' I still have all the other aspects of CF (the GI problems, diabetes, osteoporosis, reflux etc) so I still have all my usual medications to take, plus I have acquired quite a few new ones since the transplant (immunosuppressants, anti-virals, antibiotics, magnesium supplements, various painkillers). I will hopefully be able to stop some of these tablets as time goes on but for the moment it feels like I am constantly popping pills. I also have to continue with my nebulised antibiotics twice a day to try and prevent infection in my new lungs - I will still carry some of my old bugs in my upper airway and sinuses which can then infect the new lungs, although I won't have the same problems with sticky mucus as I had before. I have however been able to stop all my inhalers and other nebulisers, so at least that's a bonus.

This afternoon I was itching to leave the house, so we decided to take a drive to the garden centre. We didn't want to go to the local one as it is always very busy and I have to avoid crowded places for three months. So instead we drove to the middle of nowhere to find a garden centre which wasn't too busy. Unfortunately they didn't sell bird tables, which was what I was looking for, but I did manage to spend quite a lot of money on new plants for the rockery. I am also not supposed to touch soil (I can garden with gloves though) so I just wandered around like Lady Muck pointing to various things and telling Andrew to put them in the trolley. He says it's worrying how much money I can spend when I am well....but he hasn't seen anything yet. I have yet to go clothes shopping.

It was absolutely great being able to wander around the garden centre without getting breathless. I can't remember the last time I was able to do that. I was rather overexcited by this and have probably overdone it a little, but I think it's all good exercise and will help me build up my stamina. Andrews mum and dad have also bought me Wii Fit to help me exercise while having fun. For those who don't know, it's basically a game for the Nintendo Wii, where you stand on this step and you can do various exercises, like yoga, hula hooping, running, ski-ing, muscle workouts etc. I am taking it easy just now though, so I don't put any pressure on the wound, but it looks like it will be great fun. Andrew seems to be enjoying it anyway and managed to keep 5 hula hoops going for 225 turns. I had no idea he was so flexible.. but you learn something new everyday.

I'm just going to take it easy tonight and look forward to, hopefully, another good day tomorrow. Wee Seb is coming home so I am really looking forward to seeing him and getting a furry hug. I'm suspect I am going to get the cold shoulder treatment, but I'm sure he will quickly come round when he realises I can take him walks again. It sounds like he has been having a great time at his Granny's, lying up on sofa in the conservatory all day and going to the pet shop once a week to spend his pocket money. I kid you not. It will be back to reality for him, but I'm sure he will be glad to get into his own garden and will probably spend most of the afternoon barking - just so everyone knows he is back in town.

Home Sweet Home!

Well the title says it all - I'm back home and it's a wonderful feeling!

It's been a long and tiring day as we had to be up at the hospital this morning to finalise my discharge. Typically there was a string of hold ups as we tried to get more medication since they changed my dose last night and locate the medication that should have been organised yesterday. I then had to get a blood gas checked (ouch!), go to outpatients to get information on blood testing at home, arrange a sick line for my time in hospital and various other bits and pieces. In between all that I attended my last gym session just to make sure I didn't slack off too much today. I nearly jeopardised my discharge when I told the doctor that I've been having stomach cramps since yesterday. He was obviously worried it was related to the C. Difficile infection, but I thought it could be related to the fact I am eating more and maybe not taking enough of my digestive enzymes to compensate. He suggested I stay the weekend, and I politely declined. He then spoke to the microbiologist, who felt it was unlikely to be related to the C. Difficile and his advise was to see how I was over the weekend and if doesn't settle they might start some treatment. It would just be oral tablets which I could take them at home, so I was allowed to escape after all. I'm pretty convinced its just the change in diet however, so fingers crossed it settles soon. After all that excitement it was after lunch so after a 3 1/2 hour car journey we didn't get back home until about 6pm.

Due to a bank holiday weekend next week I don't have to go back for my bronchoscopy until a week on Wednesday. We will have to travel down on the Tuesday because I have to be at the hospital for 7.30 am (!) to get bloods checked, and then we will have clinic on Thursday morning. Mum will take me down, as Andrew is going back to work on Monday. I'm glad the bronchoscopy is later than originally planned as it gives me more of a chance to settle back home and relax a little. In between I have to try and get my bloods checked on Tuesday, but they would rather I didn't visit the GP practice due to risk of infection, so I need to see if someone can come to the house and take them. I could always ask one of my doctor friends (you know who you are) but I have terrible veins so I wouldn't inflict that on anyone.

Although delighted to be home, it has been a strange experience. It was so surreal walking in the front door and looking around - the stair lift, the oxygen tubing trailing through the hallway to the big concentrator upstairs, portable cylinders stacked in the corner, my wheelchair, IV medication spread over the dining room table and the feed pump beside my bed. I don't need any of it now. How bizarre. It feels like I am watching this happening to someone else and I still can't quite believe that the biggest part of my transplant journey is now behind me. I know I still have many ups and downs ahead, but for the moment all is well... and that's enough for me.

Day 21- Thursday

Well the news for today is - I'M GOING HOME TOMORROW!!!!!! I still need to come back next week for my second bronchoscopy, but I think it's much better to go home in the meantime rather than hang about the not-so-comfy hospital flat. I'm not sure of the exact details on when I've to come back etc, but I've to head up to the ward tomorrow morning to finalise things and be officially discharged. My drugs were ordered today but they have changed the dose of my anti-rejection drug so I suspect we might be hanging about waiting on another prescription tomorrow. I think I will stay around long enough to attend the gym session as I'm sure by the time we get home I really won't feel like doing any exercise!

Apart from that exciting news, today was a generally a bit better than yesterday. I had an early start as I had to get bloods taken at 8am before I took my anti-rejection drugs. Annoyingly the doctor didn't turn up for another 40 minutes but he managed to get the blood first time, so I won't complain too much. I then had to get another chest x-ray and lung function. I assume the x-ray was ok as I haven't been told otherwise, but the lung function was down marginally to 1.7 litres (60%). They are not usually concerned unless the drop is greater than 10% and I was reassured by speaking to my friend Emily that the lung function does tend to fluctuate on a daily basis. I also spoke with another post transplant patient at the gym and he said his lung function had been up and down several times in the past few weeks, so I felt better knowing that. I was still a little worried that they would keep me longer to re check it, but when I phoned the ward this evening the nursing staff were certainly under the impression I was still going home. I'm sure it will be rechecked when I come back for my bronchoscopy next week anyway.

I also had my usual gym session this morning and I think I managed more than yesterday, probably because I wasn't as sore today. I have been fiddling with my pain medication so that the doses are a bit more staggered and this seems to have helped. The physio seemed really pleased so that's always a good sign. I don't think she will have time to do my 6 minute walk test before I go home, but they will do it at outpatient clinic at some point.

In the gym - see how fast those legs are going?!

The only thing getting on my nerves just now is my blood sugars, which are all over the place and constantly running high. I have been increasing the dose of short acting insulin by myself but it's not really coming down to an acceptable level. Hopefully I can see the diabetic nurse when I get home to sort out a new regime, as I suspect I will need some longer acting insulin to keep things on an even keel. I could do without the hassle really, but it's just one of those things I will have to get used to. The other side effect I am noticing now is a tremor from one of my anti-rejection drugs. It's not too bad at the moment and I really only notice it when trying to keep my hands steady - for example when plucking my eyebrows. Anyone who knows me very well will understand how important it is that I can pluck my eyebrows. Put it this way - if my body put as much effort into staying healthy as it did into growing my eyebrows, I probably wouldn't have needed a transplant. I get a 5 o'clock shadow on my eyebrows, I kid you not! Anyway hopefully this will settle down as I get more used to the drugs. It's just as well I'm not a surgeon, that's all I can say.

Well my next blog should be from home - how exciting! I don't know what time we will get back but I suspect it will be tomorrow evening. I will try and do a short entry at least to let everyone know I'm home safe and sound.....I can't wait :-)

The Final Interlude

Early days...

Those first few days in HDU saw me at my most anxious. Despite having generally pleased the doctors with my progress I remained fearful that something was going to go wrong and the worrying thoughts swirled in my head endlessly. I was generally calm when I had company during the day but in the evenings when everyone went to get dinner, I would start to feel quite panicky and anxious. I managed to distract myself with my music or the TV, but I found it so hard to believe that the transplant had worked and that all would be well. The fear of infection or rejection loomed in those early days and dominated my thoughts. This would bizarrely be punctuated by moments of euphoria, when I would allow myself to believe that all would be ok, to appreciate that I had received a life saving transplant and to imagine what my life could now become.

At first in HDU I was attached to so many monitors, drains, catheters etc, that it was near impossible to move from the bed. The physio would come in daily and with the help of the nurse manoeuvre me into the chair for a while. I would sit there just willing the time to pass until I could get back into bed. I knew however that mobilising early was vital to my recovery, so I dutifully obliged and tried not to look too huffy.

The pain was also a difficult issue for me in those first few days, as on arrival in HDU they realised my epidural was leaking so it had to be removed. This would normally have been left in for another few days, so we had to find alternative pain relief and it was a case of trial and error. I did have one very difficult night when they couldn't get the anaesthetist to come because they were doing two transplants that night, so I couldn't get my pain relief reviewed until the morning, by which time I broke down in tears when the consultant came round. It was a little embarrassing, especially since he is not really the touchy feely type but it did the trick and the pain team arrived moments later. They were excellent and kept me under close review for the rest of the day until we had the pain well under control.

I also worried a lot about my oxygen levels in the first week, as they were reading similar to pre-transplant and I felt I had not moved forwards at all. I couldn't see the monitor, as it was behind me, but I repeatedly asked what my oxygen saturations were. I was like a dog with a bone. As time passed though they gradually improved and I started to feel that I was finally making progress and the lungs were beginning to do their work.

As the end of the first week approached I became gradually more tube free and at least able to move from the bed, albeit with difficulty. The turning point for me was the removal of my chest drains, which were responsible for a lot of the pain and discomfort. Being tube free also allowed me to get out of the hospital gown and into my own pyjamas; so simple, yet mentally a huge step forwards.

It was towards the end of that first week that I started to update my blog, so the rest of my journey, is, as they say, history...

Day 20 - Wednesday

Today has been a very tired day and everything has seemed like hard work. I didn't sleep too well in the flat last night as the bed wasn't very comfortable. I woke up feeling very sore and stiff and despite taking all my pain killers I was still really sore by the time I went to the gym at 11am. This made everything seem that bit harder, especially since breathing deeply seemed to make my chest more painful. I did manage to complete the session though, and the physio was still pleased with my progress. I feel as if the exercises are becoming harder instead of easier, but I'm sure that's something to do with muscle fatigue and general tiredness. We discussed what kind of things I should do when I get home, and she agreed that walking is the best idea and I should just gradually work on increasing distance at the moment. I am not allowed to use a gym or swim for 3 months, due to risk of infection and also pressure on the wound. I don't think I fancy joining a gym though and I'm not too keen on swimming, so its no great loss for me. If I can end up taking Seb for a decent walk then I will be happy.

At lunchtime we popped back to Pat's to get away from the hospital for a while, although we had to head back for clinic at 2pm and also to get the NG tube removed for the study I'm helping with (was so glad to get that out!). I was under the impression I had an actual clinic appointment, but it was actually just an introduction to show me around and explain what happens when I come back down for outpatient appointments. I think I will have to come every couple of months to start with but this will gradually become less. I also had the chance to chat with another transplant patient, who has CF. He had his transplant 4 weeks ago, and we were talking about how tired we both felt, and how we still can't feel the full benefit from having new lungs. I think we both found it reassuring that we were experiencing the same things and it definitely helped put my mind at ease. I know I am expecting too much too soon, and because the improvement is happening gradually it is hard for me to see. The blog will be useful for me looking back and seeing how far I have really come.

I have also noticed an interesting thing today - that my body needs to relearn that I have working lungs. For example, when I had my old lungs I usually sat leaning forward with my arms resting on my knees, as this was the easiest position for breathing. I noticed today that I am still doing this, even though I can now sit back and not feel breathless. It's just become a habit and I am sure there are lots of other things like this that I am still doing. I think it will just take my brain a little while to catch on!

Tonight I am back at Pat's for dinner again and its so lovely to get some home cooked food. My appetite has still not been great, although I am managing to eat my main meals. I am still hopeful that this will kick in once I get back home and into more of a routine. I am still not sure when I will be getting home as I haven't seen any of the doctors today. The nurse at outpatients clinic said I will be due my second bronchoscopy at the end of next week, so she thought it likely that they will keep me until then. It is true that there would be little point in sending me home after the weekend for me to travel back down on Wednesday, however I was hoping for release this week. You never know though...

p.s It's nice to see Rena and Aunty Margaret posting - hope Aunty Margaret is recovering well from her surgery!

Day 19 - Tuesday

Today has been quite busy and tiring, but in a good way. This morning I was up early and determined to get to the gym on time today, which I did manage. It was the same routine as before - bike, treadmill, leg and arm weights. I found it really hard going today, but Andrew did point out that I am now walking over to the gym, instead of using the wheelchair, so I have in fact progressed further than I think. It's just my usual impatience showing through - wanting to be fit as a fiddle after only a few gym sessions. If only life was really that simple. The physiotherapist was really pleased with my progress and will be arranging to do a 6 minute walk test before I go home. This same test forms part of the transplant assessment, so it will be interesting to see how much I manage now compared to the test I did two years ago.

This afternoon I was taking part in a study at another hospital. The study is looking at an association between acid reflux (common after lung transplant for various reasons) and how this might contribute to the development of chronic rejection. Although the study is quite involved I felt it was important to take part, especially since chronic rejection remains a process that is poorly understood. The study involved a fairly large tube being put down my nose into my stomach. I then had to lie flat on my back while they asked me to take sips of water (very hard to do lying down!) and measured pressures in the oesophagus. After that they put a smaller tube down, which I keep in for 24 hours. This measures ph (acidity) and tells them whether I am suffering from acid reflux. They can use this data in conjunction with biopsy results to see if there is an association. I will have to have it repeated at 3 and 6 months, but hopefully that will be tied up with my bronchoscopy appointments so shouldn't be too much hassle. It's not too comfy having this tube in, but then I did NG feed overnight for years before I had my peg and it's very similar to that, so I'm sure I can cope until tomorrow.

I was then moved over to the hospital flats later this afternoon. Not sure what to say about them....basic is probably the best word. The living room has 2 hospital chairs and a TV that doesn't work, although to be honest I haven't watched TV in all the time I have been here, and I haven't really missed it. Even though its not the most salubrious of surroundings it is nice to be away from the hospital environment and enjoying a little more privacy. This evening we have come over to Pat's (mums friend) for our dinner, which is where I am at the moment. We had the most delicious steak, which after a few weeks of hospital food was a huge treat. It's strange to think that I should now have no difficulty putting on weight and will have to think about eating healthily and not the usual CF high fat diet. In fact the anti rejection medications are known to increased both cholesterol and blood pressure so I will have to be more careful with my diet in future. I think truffles will still be allowed though...

I still don't have a date for home, but I have an appointment at the transplant outpatient clinic tomorrow, so they might be able to tell me more then. I feel ready to go home whenever I am allowed. I know there is still a long way to go in the recovery process and I am likely to have ups and downs over the coming months, but much better to be back home sooner than later. I will try and go with the flow though, and at least I know that during the day I can pop over to Pat's, which makes a huge difference. I also still have to attend the gym in the mornings, so that will be ongoing until I get home. I will then have to devise a plan for myself to keep up the good work I have started. I am so motivated to do this though, having been unable to do so for such a long time. You have no idea how wonderful it is just to be able to walk the length of a corridor without getting out of breath. Even the simple things like brushing my teeth or getting washed (I used to sit down to do these things) are so much easier. Goodness knows what I will be getting up to once I actually regain some fitness and stamina....

Another Interlude

My memories of ITU...

When I woke in ITU around 10 am the following day I felt no pain at all. I was still ventilated so couldn't speak but gave everyone a massive thumbs up to signal that I was ok. The experience of being ventilated was so far removed from the last time, because this time I wasn't coughing or trying to cope with very poor lungs. Although I indicated for the tube to be removed, I was not distressed like I was before and I settled back down when told it had to stay in for a while longer. I also could not believe that I had no pain at this stage, due to a working epidural and the anaesthetic drugs. I was only allowed 2 visitors in ITU so poor dad had to stand at the window and watch from there but despite being ventilated I was able to wave cheerily at him and indicate that all was ok. I immediately began trying to write things on people’s hands again, but am told that I was just doing big squiggles which made no sense at all. Eventually the nurse handed me a piece of paper with the letters of the alphabet, so I could point to each letter. I spelled out various things..'What time is it?' 'What day is it?' 'What is that beeping?’ As the hours passed and I remained on the ventilator I became increasingly annoyed and spelt out 'I am bored!' to which the nurse quickly retorted 'well go to sleep then!'

This was easier said than done. For the first few hours I was afraid to fall asleep because every time I started to doze off, I stopped breathing and the alarm would sound. This was all just part of the process of weaning me off the ventilator and it wasn't too long before I was breathing on my own. The tube was removed around 4pm in the afternoon and I found, much to my horror that my voice was too hoarse to speak at first. It was probably also around this time that the epidural stopped working so well, and the anaesthetic drugs were wearing off...that’s when the pain really started. The doctor was on hand all the time in ITU though, so they did get on top of things very quickly and gave me extra pain relief.

Probably the first thing I felt after the tube was removed was disappointment. I had somehow expected to take a giant breath like I had never felt before, but instead I could only breath with shallow breaths due to the pain, and I felt no different than before. My mind was immediately racing with thoughts that the transplant had failed and these lungs were not working properly. The ITU nurses assured me everything was looking ok but I found it hard to believe them.

The rest of that evening is a hazy memory but I’m told everything was on track and I was settled after the extra pain relief. It wasn’t until the following afternoon that they started whispering in the background about my blood gas results. Unfortunately being a doctor I could interpret the results and realised there was something wrong. The doctor came into ITU shortly after and asked to speak to Andrew privately. My heart jumped with fear ...what on earth was wrong? He explained to Andrew that my xray showed some fluid (pleural effusion) and that my oxygen levels were not good, despite being on high flow oxygen via a face mask. He thought the poor oxygen levels was due to some collapse in the lower airways (common after surgery) and the fact I was unable to take deep enough breaths to combat this. He had decided to tell Andrew this privately as he didn't know how to tell me without worrying me, but I must admit that he worried me even more this way. I was just digesting this information when the consultant swept into the room, announced that there was some fluid on the xray, suggested it was rejection and decided that I needed a bronchoscopy the following morning. I was absolutely terrified. Still convinced that the low oxygen levels was due to some collapse, the other doctor prescribed me several different nebulisers to try and loosen any mucus in the airways and then in the evening decided to start me on c-pap. This is form of non invasive ventilation, which basically forces extra air into the lungs when you take a breath in. I was fairly comfortable on the c-pap and felt less breathless, and much to everyone delight the oxygen levels began to return to normal.

In ITU the visiting was very strict so mum and Andrew had to leave shortly afterwards, which left me feeling quite vulnerable and alone, despite the fact I had a nurse with me all the time. I think that was probably my worst night as I lay worrying about the bronchoscopy and what it might show, and also feeling so breathless that I was utterly convinced something was wrong with the lungs. After several hours of sitting upright wide awake and unable to sleep, the nurse called the anaesthetist to prescribe me some night sedation. Generally they are not too keen on using sedation in ITU but on balance it was better that I got some sleep.

By the next morning I was feeling more settled and not quite so breathless. On seeing the blood gas results, and after a repeat x-ray, the consultant decided that I didn’t need a bronchoscopy after all. I have never been so relieved. I had to stay on the high flow oxygen but this was enough to keep my oxygen levels up and I slowly began to trust that these new lungs were working after all.

Day 18 - Monday

I was late for my gym session this morning due to both the doctor and pharmacist arriving at the same time just as I was about to leave. It was a bit annoying because I missed the first half, so only got about 15 minutes with the physio. I did get to do some time on the bike and some leg exercises, but tried to make up for it later by walking up the stairs to the ward, which is something I would never even have contemplated before! It's strange having to change your mindset from 'I can't do that' to "I can do that!" and it will take a bit of getting used to.

The pain has been better today and I have only needed extra pain relief once, and that was due to the sheer stupidity of me twisting round to plump my pillow, resulting in me straining the wound. It's eased off now though, so no harm done. I will get Andrew to plump my pillows in future.

I also had another x-ray today, which was fine, and my lung function tests were repeated. It had risen to 1.88 litres today. The technician wouldn't give me a % as she said to be accurate it would have to be based on my donors age and height, and not based on mine. I understand what she means, but I still want to know the percentage of what's expected for someone of my age (plus the fact the other technician gave me this last week). Never mind, I worked it out myself and calculate it to be around 65% of predicted for my age and height. That's a pretty big jump from 50% last week and was probably helped by reduced pain today. Here's hoping I can still get it a wee bit higher...never happy am I?!

The doctors were pleased with my results and have decided that I can move to the hospital flats tomorrow. This is a major step towards home and I feel ready to make the move. I am unsure exactly when I will get home, as the consultant last week alluded to it being by this weekend, but a different consultant today said that most people stay around for the first month. I am still hoping for discharge soon, but am prepared to stay longer if need be. Although I am in the hospital flats I will still attend the gym sessions in the mornings and will catch up with the transplant team at the outpatient clinic, my first appointment being on Wednesday. I also had my final teaching session today, so I am all prepared to face the outside world again. Just wanted to note that they don't recommend me having flowers in the house for the first 12 weeks, due to bugs that can grow in the water. Not that I am suggesting people are going to send me flowers...but just in case! I have had some lovely balloons to cheer up my hospital room though, but they are all deflated now. Mum wouldn't let me inhale the helium to make my voice go funny. She didn't think that was very sensible after a lung transplant. Funny that didn't even occur to me...

An Interlude

Although Andrew has blogged from the start of this journey, I have lots of thoughts swirling around my head from the moment I got the call, my time in ITU and early on in HDU before I had access to my blog again. I've decided to write down some of these memories - apologies if this seems like I am going backwards, but I feel it would help me to share some of these thoughts - better written down than in floating in my head. Tonight I will tell you about the moment I got the call...

I woke from a deep sleep to the sound of the phone ringing. I glanced at the clock - 3.45am - I knew immediately who was calling. I stumbled out of bed, desperately trying to disconnect my feeding tube and untangle the oxygen, all the time saying "Andrew, Andrew..the phone is ringing". Silence. I finally got myself free and ran to the study, but as I picked up the phone it rang off. I tried to redial the number but at the same time my mobile started ringing in my bedroom - Dolly Partons 'Working 9-5" cheerfully indicated an incoming call and this time I got to the phone in time. It was one of the coordinators from Newcastle and she wanted to check how I was since I started the IV antibiotics. I was able to reassure her that I was much better, and in fact, my chest was probably about as good as it gets these days. Happy with this response she said that some lungs were potentially available and she would call and find out if the air ambulance was available. By this time Andrew had woken up and was sitting there somewhat confused and not quite grasping the fact I had just received 'the call'. I was very calm this time, although understandably nervous after my previous experience. I quickly got dressed and packed last minute items (I had list made up). As I moved around downstairs Seb wandered through with his eyes half shut, decided I wasn't doing anything particularly interesting and went back to his bed. The phone rang again and this time it was ambulance control to say they would be there shortly to take me to the airport. I calmly phoned mum to let her know and then in a moment of clarity remembered to cancel my online Tesco order which was due to arrive the following day.

The journey down in the plane was amazing, as the sun began to rise over Newcastle. Andrew captured a few photos with his mobile and it seemed somehow poignant - the sense of a new beginning.

On arrival at Freemans, sometime before 6am, it was the same routine as before - xray, bloods, examination - and then the dreaded wait. This time they were going to make sure the lungs were in a box and on their way before i was even anaesthetised...there couldn't be a repeat of last time.

We had only been waiting a couple of hours before mum and dad arrived - mum prepared this time with snacks and drinks for everyone, apart from me who was fasting in preparation. The coordinator was reluctant to get our hopes up but the initial tests looked good. I sent a couple of text messages, but I didn't phone anyone - I was fearful that this would be yet another false alarm and we would soon be on our way home again. I did however prepare a text message in case I was taken to theatre and was adding peoples names to the list, so that Andrew could send it once I had gone. He repeatedly told me this was a dangerous thing to do, as I might accidentally send it. Which I did. I then had to explain to a few confused friends that I hadn't actually gone to theatre yet but was in fact still waiting. Oh how we laughed, even though it wasn't really funny. Strange how humour becomes so black at these times.

At around 10am they took me to the anaesthestic room to get prepared, but were holding off on actually putting me to sleep until the lungs were on their way. It seemed so much more intense this time because I had much longer to wait on my own but at least I knew what to expect. I clearly remember the lines being placed and monitors attached, and the anaesthetists merrily chatting about how her brother in law lived near me. Funny the things you remember. My port was accessed due to being on IVs, so they were able to use this line to give the drugs. I slipped into sleep. The surgery took around 7 hours but I was kept asleep for around 24 hours, before I woke in ITU to the sounds of monitors beeping and alarms sounding, and to mum and Andrew standing there beside me telling me I HAD received the transplant.

Day 17 - Sunday

Today was overall another good day. I had a reasonable nights sleep but was still pretty sluggish this morning and would gladly have rolled over and gone back to sleep. I did try to get to sleep without the sleeping tablet last night but found myself nearly dozing off then waking up startled and anxious, so in the end I just took the tablet. I'm hoping once I get back home into my own bed this will settle down and I can get some sort of normal sleeping pattern back. I suspect as I gradually become more active during the day I will be physically tired out also, which will no doubt help.

I followed the same exercise routine this morning, with the bike etc. I found it much harder today but I think that's just the normal effect someone would have when they start exercising for the first time and wake up feeling a bit sore the next day. I didn't over do it though and just stuck to a steady speed on the bike and I got there in the end. I'm sure it will get easier as the days go on and I will probably look back and laugh at how hard 10 mins on the bike was!

This afternoon I had a visit from Andrew's mum and dad, which was really nice. Hello Anne and John if you are reading this tonight! They met Andrew at my mums friends (where mum and dad have been staying) so had brought Seb with them. Apparently he gave Andrew the complete cold shoulder and totally ignored him. He was a bit nicer to mum, but she was cutting up chicken at the time so he had an ulterior motive ;-) I suppose we did suddenly abandon him in the early hours of the morning and he isn't going to let us forget it in a hurry. I wonder what his reaction will be when I finally get home and see him...I wont be betting on a warm greeting though, that's for sure.

Mum then came in later this afternoon and we sat outside for a while in the sunshine. She had brought a hat with her so at least I didn't have to wear my wee hoody today. We ended up sitting out too long and missed the doctors ward round ...oops. I don't think there was anything much to say today anyway, as I wont be getting any more tests until tomorrow.

My main ongoing problem is this niggling pain in one specific area. I don't feel the oramorph is even that helpful for the pain, which is now like a toothache as opposed to sharp pain. I think the pain team will be back round tomorrow so I will see what they suggest. For the most part of the day it isn't too bad though so it's not a huge problem. The vision continues to be an issue and I still can't read properly as everything keeps going blurry, as if I need to blink and clear my eyes. I am reassured that Emily (friend who has had transplant) had a similar problem which did settle down eventually, so fingers crossed that clears up soon. I've also been having more problems with my blood sugars since I changed anti-rejection drugs. They are constantly running high, which is probably contributing to the tiredness. I have been trying to adjust my insulin but will most likely need to meet up with the diabetic nurse when I get home and sort out a new regime once everything settles down. It's still a small price to pay, and something that can be sorted out.

So all in all, it's been quite a good day and I can start to imagine going home now and coping with that. I can't believe how far I have come in just over 2 weeks...it feels like I have been away for months because so much has happened. So strange to think that in that little time my life has been turned around completely and will never be the same again. I am used to hospital discharge being associated with feeling 'a bit better' and just waiting on the next infection, yet this time I will be discharged and things will just continue to improve. What a wonderful thought..

Day 16 - Saturday

Although I started off very tired this morning, my energy levels picked up this afternoon and all in all its been quite a good day. I had a good nights sleep and for the first time was able to lie on my side for most of the night, instead of propped upright on my back. This made for a much deeper sleep, so much so that I really didn't want to get up this morning. I think I have a lot of catching up to do sleep wise, but its always hard to get a long lie in hospital. I had a nice bath (as not allowed to use shower) and even that really tired me out, so I had another wee sleep at lunchtime. I think that's allowed though :-)

After lunch I tackled the exercise regime, which was a 5 min warm up on bike followed by leg squats (with practice they are looking more like squats and less like pelvic thrusts, which is good for all concerned), heel raises, arm weights and then 10 mins cool down on bike. By the time I had done all that my legs were like jelly, but at least I know the muscles are being worked and it will get easier as time goes on. My poor wee legs have a lot of catching up to do! They also brought me a walking stick to use as a light weight for lifting arms above head. Mum was rather excited about this new addition and treated us all to a tap dance (of sorts) around the room with the stick as a prop. She really needed a wee bowler hat as well and the look would be complete. Thankfully none of the nurses saw this episode, or if they did they certainly aren't letting on.

Later this afternoon mum and I went and sat outside for a couple of hours and it was great just to get some air. The weather has been lovely here - must have been over 20C today, so I was well lathered up with sun cream. Unfortunately I didn't think to pack a sun hat in my transplant case (funny that), so I had to wear the hood of my tracksuit top on my head - you know the way little children wear them when they are pretending to be superheroes with a cape on. I did however refrain from running around pretending to fly.

Pain wise I have still needed the oramorph a couple of times today for the pleuritic pain, but overall I think it has been much better controlled and I seem to be moving around more freely. The wound itself is not too sore at all and the sensation is more of a tightness, as if you have a band around your chest. The wound is looking really good and very neat - they cut along exactly the same line as before, but its looks better this time (probably because the coughing made it harder to heal last time). I'm pretty sure it will only be a very faint line when its properly healed and really shouldn't get in the way at all. For anyone interested its called a clamshell incision and runs from one side (in line with underarm) under the breasts to the opposite side. Just thought I would mention this, as I think most people imagine the scar runs vertically down the chest (it can be done this way) but I think this scar is much neater and shouldn't really limit what clothes I can wear (important stuff!)

Otherwise medically, they are pleased with my anti rejection drug levels, so hopefully that will mean less blood tests. I am on two immunosuppressant drugs (azathioprine and tacrolimus) and these have been altered daily since the transplant to make sure the levels are just right. I am also on steroids, but these have been gradually tapered down, so hopefully I will just be on a very small dose soon (it really is making my skin bad, which although is the least of my worries, is annoying all the same). My magnesium levels are ok with the tablet supplements, although my vision is still blurry. It could be related to other drugs I am on, or to the surgery itself, but we are just hoping that improves as time goes on. The other good news is that my temperature has remained settled and my chest is sounding nice and clear, so its all moving in the right direction. I am also eating well enough, so fingers crossed I have said good bye to overnight feeds for good!

Well, I'll sign off now. Hoping for another good nights sleep and a similar day tomorrow..

Day 15 - Friday

Today has been a better day, both emotionally and physically. The pain has been much better and although I was sore this morning it has been better this afternoon, which made moving around so much easier. Less pain makes for a happier Jac. I also had a much better nights sleep which I hope will continue tonight. Fingers crossed!

I spoke with the doctor again today about the C. Difficile infection. As I remain symptom free, they are assuming that this infection was pre-transplant and has been treated by the antibiotic regime I was given post transplant (positive test results can remain for a while after treatment). After a 48 hr period of no symptoms you are given the all clear, so this means that I was still able to attend the gym today and hopefully will be able to continue this next week. I did much the same regime today - bike, leg weights, bicep curls and treadmill. I did alter the speed on the treadmill when the physio wasn't looking, just 'to see' what happened. It made me quite breathless, but in a totally different way than before. I have become so unfit over the past couple of years, that there is still a long way to go, but I am sure that I will be able to enjoy these lungs so much more as I regain some of that fitness. Once I am home Seb will become my main exercise, which is great because I am motivated to take him out for walks. I did this for as long as I could pre-transplant and even at times when I really wasn't fit to. His wee face and excited tail wag when you say 'walkies' is motivation enough for anyone.

Seb's face when told his mummy was away getting her transplant...

Seb a few hours later...clearly worried sick

Continuing on my good trend mum and I went for a short walk this afternoon in the hospital grounds. We didn't go far, but were able to sit out and enjoy the sunshine for a while, which does wonders for the cabin fever you get being stuck in a hospital room. Andrew had the day off to catch up with some work he has been doing over the past few days, so hopefully he will have made some more progress with that. I think he has also been allocated a room mate for his hospital flat, so not sure how he is feeling about that. Not so much privacy and no doubt will be a little awkward, but they really are limited for space in the flats, as they have done quite a few transplants recently, which is good to hear.

With regards getting home, the doctor wants to see how I am over the weekend with pain control, and all going well I might then move to the hospital flats for a few days next week before heading back home. Having now moved from the comfort of HDU and being back to the reality of a large busy ward situation, I think I will definitely be ready to move on in the next few days. The weekend will be quieter, with no gym sessions running, but I did ask the physio to get me an exercise bike so I can continue with that. She has left me an exercise sheet to follow, so I have no excuses for slacking now!

I also had a visit from the catholic deacon today. He has been in a couple of times to see me, the last time being a week ago, so he was stunned by the difference. I suppose I find it hard to see because I am seeing small changes day to day, but he saw a huge improvement since his last visit which was really encouraging to hear. He also said that I talk a lot, but you all know that is simply not true.

Would also like to say another thank you for the cards I have received - it's like my birthday every day! I reckon I can put them all up at home for at least the 12 week recuperation period. I don't think that would be too long...

Day 14 - Thursday

Despite taking all sedatives on offer, I had another rough night with quite a lot of pain in one particular area. It's a pleuritic pain - which is very sharp pain when you breathe in, cough or move. The doc said that he could hear a 'pleural rub' when listening to my chest which just indicates that the pleura (layer around lungs) is inflammed. This is very common post transplant, and todays xray showed no new signs so its just a case of waiting until it settles down. The pain team did review me however and increased the drug for nerve pain (which should help me sleep tonight), as well as encouraging me to take the oramorph as required at the moment to ensure I continue to breathe deeply and move around more. I have been taking this today, so the pain has been much more under control and my oxygen levels have also improved as a result of this. Another big positive is that my temperature has remained settled all day, so we seem to have overcome that small blip.

Exercise wise, I was able to attend the gym today with some other post transplant patients. We all moved round in a circuit, each having a go on different machines. I did some time on the exercise bike, 2 different machines for leg muscles and 5 mins walking on the treadmill. The upper arm exercises are still limited while the wound is healing. It was a good change getting out of my room to exercise and it is more motivating when you can see other people exercising, as you want to keep up (or is that just me?!)

Enjoying an ice lolly after the gym (face mask making it kinda tricky!)

The only piece of bad news I had today was that some routine testing has shown that I have C. Difficile infection in my bowel. This is an infection caused my the use of lots of antibiotics (which I was on pre-transplant) and can be quite serious when you are immunocompromised. At the moment I don't seem to have any symptoms from it, so they are not too worried and are not actively treating it. The drug they use to treat this infection is one which I was on for the first week post transplant anyway, so this might have been enough to deal with any infection that was lurking. It is also possible to carry this bug without being affected at all, so at the moment they will just keep a close eye on things. The only downside for me is that I now have to be barrier nursed, which means no wandering around the ward (although I can still go outside) and I suspect I might not be allowed back to the gym either, which is quite disappointing.

On a more positive note, I was moved from HDU today to a regular ward because I was the fittest patient in HDU - this can only be a good sign! I was quite nervous about leaving the comfort and saftey of HDU but since I was self medicating and self caring anyway it shouldn't really make much difference. The only annoying thing is that I am not allowed to use the showers in this ward as they run of a water tank, where as the transplant unit showers are electric, which have a lower risk of carrying bugs. I'm not quite sure how I am meant to wash my hair, but I suspect it will be a bath and jug of water....fun fun fun. Incidentally, I am not meant to use showers that run of water tanks at all post transplant so I'm not quite sure how that will work when I go on holiday...

I also had my lung function repeated today and it was 50% (1.43L), so almost exactly the same as last time. I must admit to feeling quite disappointed as I am desperate to see a big improvement and just dream of having near perfect lung function. The doctor said it will continue to improve over the coming months however, and that they are happy as long as it is stable at the moment. I just wish I could see into the future and beyond this immediate recovery period because at the moment I am still finding it hard to imagine myself doing 'normal things' like taking Seb out for a walk etc. I know its all small steps and it will come with time but its hard not to overanalyse things at this stage and there is a tendency to become fixated on numbers. I think the difference will be when I get back home into my own environment and start to discover all the new things I can now acheive.

In the meantime it's a case of trying to stay upbeat and positive and allow myself time to adjust and to recover. It's hard though, and at times I am finding myself quite emotional and teary for no good reason. It makes me feel guilty too, because I have been given this wonderful second chance through the gift of a complete stranger. A family is grieving for their loved one and I owe it to them, and to myself, to make the most of this new life. I know that I will do though, so I am therefore trying not to feel sorry for myself when clearly I have so much to be happy for. I'm sure the emotions will settle down as time passes and with each new day I am determined to make the most of this new life - the most precious gift I will ever be given.

Tx Update - Day 13 - Wednesday

Another mixed day really, but all the time moving forwards and everything progressing well. The temp was still a little raised this morning but has been settled the rest of the day, so they will just continue to keep an eye on this. The bloods were normal however, so no obvious signs of infection. My magnesium was still low today so had another IV boost, but they are hoping the tablets will now be enough.

I didn't sleep very well last night, mostly because I decided I wanted to try without the night sedation. After a few hours I finally gave in and took the meds, so managed a few hours kip before they kindly awoke me for bloods at 7.30 and then breakfast and meds at 8am. One of the side effects of my anti rejection medications is sleep disturbance and also added to the fact I can only lie on my back propped up doesn't make for the comfiest nights sleep. I think I will just take any meds on offer tonight and hope for a more restful sleep!

Exercise wise, I have been feeling really tired today but did do some more stairs with the physio and also met my self made target of 10mins on the bike. Woo! I went a walk to the main door with dad earlier but was being really limited by pain in my chest, and this making it hard to breathe deeply. I am also terrified to cough as this is still very painful. My oxygen levels were a little low tonight (91%) but the nurse felt it is because I am staying still and breathing shallow due to the pain. I foolishly haven't been asking for any extra pain relief because I felt this would be a step backwards, and was also unsure how much pain I should just accept as part of the process. The nurse explained that I should be pain free enough to be coughing and moving around freely, so clearly I should have been taking some extra today, but its all a learning process. The pain team will review me tomorrow but in the meantime I've just had some oramorph and the pain is a bit better, so I am sitting up in the chair now which should help get more air into my lungs. The biggest risk of not coughing and moving is that I get a chest infection and we really don't want to go there. They would like to see me moving around the ward now, using the ward kitchen and generally getting back to some sort of normality. This is quite strange for me, as I am used to being limited to my own room in hospital due to cross infection risks between CF patients - where as this is a completely different environment in which I don't even have CF lungs any more. It's such a strange feeling!

I'm doing well managing all my meds and taking control of my own care, but its quite overwhelming at times. I have gone from knowing my illness inside out, knowing what every twinge meant, knowing my treatments like the back of my hand, knowing when to seek help and when I could ignore something....but now it's all different. It's like I have been given a totally different illness to deal with now, and I will have to relearn how to interpret symptoms and how to manage my own condition, to know when to ask for help and when I can stop asking daft questions. I have been writing all my questions down as new ones keep popping into my head - I'm sure I will get the hang of it all soon enough though and I will be well on my way to being a post transplant pro.

I will probably be moved to another ward soon (I am still in HDU) as I am certainly well enough now. They do like to keep post transplant patients here as long as possible but as there are only 5 beds there is a lot of pressure to move people on. Another option is that I get moved to the hospital flats, which are in the grounds. This is where Andrew is staying at the moment (mum and dad are staying with a friends, as the flats are limited). I'm not sure which I would prefer to be honest, because from what Andrew tells me the flats are basic to say the least! I think it all depends on things like my temp settling, the pain being under control and such factors all coming together.

So, all in all I am marching forwards, but as always, probably trying to run before I can walk. I just can't wait to be feeling 100%, pain free and raring to go but these things take time so I will have to learn a little patience. It will be worth it all in the end, I am sure of that much.

Tx Update - Day 12 - Tuesday

Today has been a tired day for me. A combination of everything finally catching up and probably the sedative effects of medication. I think I forget that, including my pretend transplant, I have actually undergone 2 major anaesthetics and 2 surgeries in the past 6 weeks. I have also been feeling a bit viraly since last night and my temperature was raised last night and has remained borderline today. I immediately started panicking last night, as a raised temperature can be either a sign on infection or rejection. It is quite unlikely to be rejection at this moment in time, as my bronchoscopy results were so good from Friday, but the fact I had a runny nose pointed towards some kind of cold virus. I overreacted slightly and was worrying myself sick that this wee blip would turn into some major catastrophe. Thankfully the nurses who were on last night were able to calmly reassure me that this was not the case, and I managed to settle down for a reasonable nights sleep.

The doctors today said my chest sounded nice and clear, and my blood results weren't too bad, so they are not concerned at all at this stage. I just have to keep and eye on the temperature and take things from there. The only other negative thing physically is my persistently low magnesium levels (due to immunosuppressant drugs). I was getting IV magnesium when I had the central line in my neck, but when that failed we swapped to oral tablets since no one wanted to try and put a venflon in my rubbish veins. However, my vision is still very blurry and the magnesium level low, so they started me back on IV preparation today. These levels should improve as my kidneys get used to all the new drugs, so hopefully my vision improve soon, as this is really hard to see! ( not that its stopping me blogging mind you;-))

The excellent news of today is that I had another lung function test and it has risen to 51% (1.44Litres). The doctor said this is as expected and still has a long way to improve as the wound heals, and the new lungs settle down. Obviously everyone hopes for near perfect lung function post transplant but to be honest I can't even remember when it was last 51% (some time as school i suspect) so anything extra is a bonus.

I had an exercise session with the physio and we attempted some stairs. Since I have a stair lift at home, its been a while since I tried the stairs, so it was quite difficult. I did get out of breath, but the physio reassured me that this was normal and that it will get much easier as time goes on. I also did 9 minutes on the bike - so aiming for 10 tomorrow :-) I need to keep up with some arm exercises as I have a very stiff shoulder on one side, and have to be careful it doesn't heal with a poor range on movement. I'm sure i will have it flying above my head in the next few days...

The weather was lovely today, so we went and sat outside. I had to wear a face mask due to building works in the hospital grounds, so I did feel a bit of a dafty. The hot weather however brought a new issue to the forefront - the fact I now have to wear high factor sun cream, even in this country, as the immunosuppressants increase your risk of skin cancer. It's a small price to pay for future health though. It was great to get outside and experience the fresh air - plenty more of that when I get home!

My appetite has still been quite good today and mum brought in some home made truffles, which will definitely help! It is quite relaxed on the ward, and although I'm not really meant to be wandering about too much, Andrew can use the ward kitchen to make me hot chocolate and keep things in the fridge etc. so that's a nice touch when you are so far from home.

I asked the consultant today about plans for home, and he said I will go home when 3 things come together;
1. I am physically fit enough (only issue here at moment is the minor temp and magnesium)
2. The nurses are happy that I can do own medication and have had all the training (I think we are more or less there with this one)
3. I feel ready to go (although he said people often need a gentle nudge due to confidence)
The plan is to review things at the end of this week, and all going well I may have a discharge date for early next week! I know that I no where near home and dry, but what a great feeling (albeit terrifying) to think I could be back home so soon. Obviously we will be back down here for outpatient clinic and further bronchoscopy in the near future but much better to be back home in the meantime where I'm sure I will come on leaps and bounds.

Before I sign off for tonight, I must say thank you for all the lovely cards people have sent. Due to the bank holiday weekend there was a bit of a back log and I got lots to open today. You have no idea how much that helped me this morning, especially since I'm not having as perky a day as yesterday. It really cheered me up to have so many folk rooting for me. Likewise I really appreciate all the comments on the blogs....I can't wait for Andrew to bring the laptop in so I can read them all. Sad but true :-)

Tx Update - Day 11 - Monday

For some reason (probably just not enough distraction) I am getting a bit panicky in the late evenings and feeling quite anxious about everything and nothing. I'm sure this will settle down in the coming weeks though, and I have no doubt that some of the pain medication is contributing to some of the strange feelings. Despite this however, I had a much better sleep last night with the new pain medication. Although I was still awake quite a few times throughout the night, I was not waking up rigid with pain and asking for morphine. I managed to get myself back off to sleep and lasted all night without extra pain relief. Let's hope this will now continue and I can catch up on some much needed sleep!

There was a ward round this morning and the doctor was pleased with my progress so far, especially the bronchosopy results. He has however decided to change one of my anti-rejection meds (cyclosporin) to a different kind (tacrolimus), as the ones I was on can make me hairy. Eek! He hadn't realised how dark haired I was until the nurse pointed it out, which apparently meant I would almost certainly be troubled by this side effect. Not fancying the idea of shaving for the rest of my life we are swapping the meds now before it becomes an issue. I am also still having blurred vision which might have been related to my anti-rejection drugs, so I'm hoping this will clear up as its rather irritating (can't read a book or anything like that, and this is really hard to type). It could also still be my low magnesium but they are treating that, so not much more to be done on that front. I'm getting the usual side effects from high steroids - bloated moon face, generally swelling up and skin is looking bad - but this should clear up as they reduce the dose. Apparenty most people end up on a small maintenance dose, which is similar to the dose I was on for CF related chest problems anyway,so thats not a big problem.

I did well without the overnight feed last night, and did in fact eat more today that I have done all week. I am really hoping this is a sign that I can ditch the feeds for good, although i suspect they will make me keep the Peg tube in until they are sure my weight is steady. I have to now carefully monitor my blood sugars, as the steroids and anti-rejection drugs are playing with my diabetes control. With a bit of regular monitoring and adjusting of insulin this should be easy enough to manage.

I have continued with the exercise routine and had a couple of goes on the bike today- once for 7 mins and then for 8mins. Mum and Andrew kept telling me to stop, but I was listening to Dolly Parton's 9-5 on my ipod so I couldn't hear them anyway. (This sound track will forever be associated with my transplant, as that was the ring tone on my mobile when I got the call). Feeling that I was overdoing it, Mum did hit me with her newspaper in a bid for attention but I ignored her and carried on cycling. She might have just been trying to stop me singing along though. Andrew has evidence on his mobile, and it includes shoulder shrugging and general swaying to the beat whilst cycling. That clip will never be seen on this blog. I did feel quite breathless after the 8 minutes but it was a different kind of breathless than before - it wasn't a low oxygen levels, going to collapse feeling, but more a 'I've just exercised feeling' and I recovered quickly and was still able to talk (much to everyone's delight). I think that's the main thing people have noticed so far - that I speak for much longer and much faster, with little pause between. I remember only too well having to pace what I was saying because even talking made me out of breath, but now there is no shutting me up!

Getting fit! (this was taken before o2 was stopped)

Dad stayed with me this afternoon whilst Andrew and mum went to get some food essentials (including ingredients for mum to make me truffles!) They also had to buy me some more tops, because I can't get my arms above my head enough to get the ones I have on. I'm not complaining though. It was good that dad was here this afternoon though, as we had more teaching from the nurse and he could ask some questions as well. It was just more info about post transplant do's and don't buts I won't bore you with the details. I also signed a form to say that I am self medicating now, which is great - it means I can just get one with everything without waiting on a nurse to check things. I also have to take my temperature 4 times daily at the moment (and 2 times daily for the rest of my life) in order to pick up signs on infection or rejection early. There is a lot of new information to take in and alterations to my treatment regime but I'm sure I will get the hang of it soon enough.

Well, this is a really long blog so I won't go on any more. I hope its helpful for everyone to keep up to date like this - its helpful for me to write all this down as my head is spinning with new information. I do apologise if the detail is a little much, but then again its my blog so i can do as I please... :-)

Me and Andrew after a walk to main door

p.s Just a wee note to say Hello to Joan and Andy - great to hear you are keeping up with the blog. I'm sure we will be able to come and visit you all soon!