Tx Update - Day 6 - Wednesday 11:45pm

I thought the last blog was late but this is taking it a bit too far. I'm just back at my lovely NHS flat after making sure Jac was settled for the night, had all her drugs and everything she needed was within easy reach. I'll try to keep this brief, I need to sleep...

She's doing great today, some more important progress made. She did have a lot of pain overnight again last night which the docs were blaming on the remaining chest drains. These came out first thing this morning (2 large chest drains and a smaller wound drain) and her catheter as well. This gives her so much more mobility and just generally more comfortable. She's hardly got anything plugged into her at all now.

She then got a proper wash and got into her own pyjamas rather than a hospital gown, which is next to impossible to look dignified in.

We saw Shelley and her mum and they waved to Jac through the window. Shelley was looking really great so I think that helps Jac see what's possible in just a few weeks!

Physios were in again a couple of times, they are happy too. Mostly getting her to do arm and leg exercises as well as some deep breaths. This is all so so much easier now that the drains have gone. Main plan for the next few days is to keep getting her moving about as much as possible.

They are also slowing weaning Jac off the oxygen, sats are very good just now. She is also wearing the nasal canula instead of the face mask which allow her to talk more! Brilliant!

Her appetite is still not great, but then it never was. Hopefully start to see some improvement there soon.

Andrew

Tx Update - Day 6 - Wednesday 1pm

Jac still doing well today, all chest drains are now out as well as catheter. This will should help with the pain and make it easier for her to move around. I'll post more details later.

We've been getting lots of people asking for an address to send cards. Its ok to send a card but NO flowers or other gifts at the moment while she is so immuno suppressed (it seems balloons are ok but we've already got a room full! :)). The address is:

Ward 27A
Freeman Hospital
Freeman Road
High Heaton
Newcastle upon Tyne
NE7 7DN


Andrew

Transplant Update - Day 5 - Tuesday 11pm

These blogs are just getting later and later... Today has been very busy, lots of progress made.

She is now firmly installed on ward 27a (HDU) where she will stay for a good while yet.

Jac was given some nasal CPAP yesterday (forces air into the lungs to improve oxygen levels among other things) to see if this would help improve things before the bronchoscopy along with various nebulisers. This seemed to improve her blood gas results further. So much so in fact that the team had decided to hold off on the bronch (that's the slang name for it :)) until after an x-ray. After looking at the x-ray they then decided not to do a bronch at all as they were happy enough with the overall picture. Gases were good and also some doubt over whether fluid was in the lungs or in the space around them (which will be cleared by the chest drains anyway). This was good news.

While all this was going on the pain control has been worse overnight and early in the day due to the failure of the epidural which was just leaking. She is now onto oral pain relief (tramadol and oramorph). It took a while for the Pain Team to ramp up the doses until it started to take the edge off it. Around tea time they got it just about right and she was the brightest we have seen her since we got here. Sitting up, smiling (or rather cringing at her mum dancing round the room to "Workin' 9 to 5" on Jac's iPod). It was lovely to see her getting back to her old self.

And while all that was going on they removed the 2 upper chest drains. If you've never seen one they are most similar to a garden hose going through a largish hole in your chest into the space between your lungs. She has 4 of them. I think to say they are uncomfortable is an understatement. This is good progress because it gets her closer to being able to move around without things attached to her. Basically, they remove them once they have no more fluid left to drain. However, this evening she was getting a fair bit of pain from one of the sites where they had been removed. They were starting to get on top of it again before I left, her nurse for tonight was giving her a good dose of her pain meds. So hopefully she'll get a good sleep.

Andrew

Transplant Update - Day 4 - Monday 10pm


Sorry for the late update today. Today was very similar to yesterday she got up into her chair for a bit and tried to keep up the physio. She had a slightly better nights sleep so today was the first day that her eyes weren't trying to shut every five minutes. Pain control has also been a wee bit better, they moved the epidural this morning to a slightly different position on her back which seems to be blocking the pain more. She is still getting pain when coughing but is generally a little more comfortable, or as comfortable as you can be after that kind of surgery.

Blood gases were also slightly better today, they had actually been a bit border line yesterday so they had increased the amount of oxygen she was getting.

Also, she is being moved out of ITU to the HDU ward at some point this evening. I'll need to go along in the morning and see if I can find where they have moved her! So, in the broader picture everything is going well and she is about where they would expect her to be by now.

We have had our first small setback though. She is going to be given a bronchoscopy in the morning because there are some areas of consolidation on today's chest X-Ray. This basically means there is some fluid gathering in the bases of the lungs. This could be for a number of reasons. The most likely candidate at the moment is some early rejection of the new lungs. This is quite rare in the first week but always possible. Another possible cause is simply because she hasn't been able to breath deeply enough and cough properly because of the pain. Infection is the outsider at the moment. This isn't the end of the world. If it is rejection then that was guaranteed to happen at some point and can be treated. Similarly, if pain is the root of the problem they will get on top of it and give her help breathing deeper etc.

Jacqueline is a wee bit down about this and needs all your prayers, positive thoughts and wishes even more now.

I managed to show her all your comments today and it helped her a lot to read all the nice things people are saying. She also received the largest "bouquet" of helium balloons I have ever seen! thanks to Uncle H for that. We'll take it in for her tomorrow when she moves to the other ward.

Andrew

Transplant update - Day 3 - Sunday 10:30pm

Here she is! She was in a bit of pain when we took the photo but she was trying very hard to smile for everyone.

Basically today has been about starting to mobilise her. She was moved into a chair for a few hours and the physios were in to get her to do breathing exercises, deep breaths and coughs to try to clear any secretions that are gathering in her chest. She's been finding this difficult for a number of reasons; pain, dry cough and generally quite weak. She really has to learn how to cough all over again, something she was actually very good at before the tx, which probably makes it more frustrating!

They were also encouraging her to try to eat by offering her soup or similar things. That wasn't good enough for Jac though so she asked "Can I have some ice cream instead?" Fair enough!

The pain has been an issue for most of the day though. The epidural block seems to be very positional, its just very difficult to find the right position where its blocking all of the pain pathways. This seems to be what happened last night, she rolled flat onto her back, off her right side, and almost immediately her left leg went numb from the epidural and pretty quickly the pain in her chest subsided. They were upping the dose of the drug they put through it to see if that would help as well. Just spoke to the ward and the pain seems to be better tonight again, which should help her get some sleep.

Also, they were going to move her out of ITU and into HDU (high dependency) but there were no beds available. This is yet another sign of how pleased they are with her progress.

Andrew

Tx update - sun 8pm

Another random pic from my phone...

Jac still progressing well, she was up out of bed and into a chair today. She even managed to eat a wee bit of ice cream!

Pain is still a prob though, epidural just sometimes seems to stop working. They are giving her a wee boost of drugs just now. Will post again later with more details.

Andrew

Tx Update - Day 2 - Saturday 11pm

I now have a fairly decent internet connection thanks to my very kind employers who posted me out a company SIM card so I can use my 3G data card with my laptop (it's not HSDPA but it does the job). Sorry, had to get a wee geeky bit in there.

Jac still progressing well, she was extubated this afternoon and is now only wearing an oxygen mask. Oxygen saturations are excellent, hovering around 99% - 100%. All blood gas tests are coming back great as well, this looks like a good set of puffers.

She now has the epidural in as well which is intended to block all pain from her chest in the initial
stages of her recovery. However, this wasn't working very well this afternoon and evening and she has been experiencing a fair bit of pain and discomfort, even after increasing the dose. Just as we were leaving though they repositioned her onto her back and this seemed to magically get the epidural working! Just phoned through to the room and they seem to have the pain much more under control. All she needs now is a good nights sleep.

So, the plan now is to get her out of the bed tomorrow, start getting her moving about with a view to moving out of ITU sometime in the coming days.

Heres hoping this excellent recovery can just keep on going!

Andrew

Transplant update - sat 2pm

Apologies for the random picture, my phone will only blog with a picture :)

Jac doing good today, she is awake now and breathing on her own. She is still intubated so can't talk yet (which is a big problem for jac!) Lungs are working well and everything still going great. They are hoping to extubate later today.

Andrew

Transplant Update - Day 1 - Friday 7pm

Jac is now out of surgery and into ITU. She is looking good and doing well so far. There is such a long way to go though. The plan now is to keep her sedated overnight and then look at bringing her round in the morning.

We are all trying to recover a bit now as well and wait for what tomorrow brings.

Also, wanted to say thanks very much for all the wonderful messages of support we have received it really does help more than you can imagine.

I'll keep trying to post these regular updates this week because it's what Jac would do :)

Andrew

The Transplant

Jac's husband here, quick update (from my mobile) Jac is in surgery at newcastle finally getting her transplant.

The call came at 3:45 am, flew down again (this was the sunrise we saw from the plane) She went into theatre about 10:00. Lungs should be here shortly!

I'll try to keep posting updates here but apologies in advance if i don't.

Andrew

The Wedding

Well, I have just about recovered from the wedding - it was a great weekend and I had a lovely time. I was a bit stressed trying to get packed on Friday - not only deciding what clothes to take, but trying to make sure I had packed all my regular medication, IV antibiotics, oxygen concentrator and portable cylinders and another list of things we would need should I get 'the call' over the weekend. The car boot looked like we had packed for a fortnight instead of a weekend, but we got there in the end.

We arrived in time for the BBQ, and it was a nice relaxed evening, giving everyone a chance to catch up before the big day itself. For those who don't know, the bride was my university flat mate Anna, who I met on my first day in halls of residence and shared a flat with for the rest of university. We basically lived in a big town house at uni - there were 4 girls in the basement, including me, and 6 boys upstairs, including Andrew. We called it "The Flat" and it was a strange set up I suppose, with so many of us sharing, but it did mean there was always someone to talk to, and plenty of socialising. Anyway, all our flatmates were invited to the wedding, so it was great to catch up with everyone and it felt like old times.

The wedding itself was on the Saturday. I was so glad we were staying at the hotel, as it gave me plenty time to get organised before we headed off to the church. The service was lovely, with Anna's mum singing a beautiful psalm and her bridesmaid playing a solo on the flute. Afterwards, we all went back to the hotel for some drinks before the meal in the evening. The meal was lovely, and despite having a poor appetite at the moment, I cleared my plate without difficulty (Andrew was disappointed because I usually leave some for him). After the meal, there was a ceilidh band, and although I obviously couldn't dance, I enjoyed watching everyone else making a complete fool of themselves and the music was excellent. To top of a lovely evening there was a firework display in the grounds of the hotel, which finished the day on a high note.

On the Sunday, we were all invited over to Anna's mum's house for a buffet lunch, so it was a nice chance to chat about the wedding and start to unwind. The wedding was very close to where Andrew's parents live, so we popped in for a coffee before heading back up the road, collecting Seb from his granny's on the way. He looked mildly pleased to see us, but wasn't really that fussed about coming home. Charming.

Yesterday and today have been spent recuperating, which is a nice way of saying, I have not moved from the sofa. I feel that the IV's are starting to work now and my chest is getting clearer, so fingers crossed that this course will set me back on the right track. I still have almost a whole week left, so plenty time to see even more improvement. I have increased the dose of the weight inducing medication again, so have started putting weight back on, and certainly don't even look as if I lost any at all now. The headaches I was getting in the mornings have also cleared up, so my lungs are obviously feeling a bit happier now. Long may it continue...

I will leave you with a couple of photos from the weekend..

The Happy Couple!

Me and Andrew

Back on the List

I had my bloods checked today again and the results were a little confusing. My white cell count (WCC), which indicates infection, had risen since Monday (from 22 to 29 for any medical people), but my CRP, which reflects acute infection and inflammation, had fallen significantly (from 125 to 36). To confuse things further, I was started on a course of steroids on Monday, which can artificially raise your white cell count, which probably explains the conflicting results.

I have spoken to the transplant coordinator, who agreed that the WCC was probably higher because of the steroids, and also they will take into account the fact that my WCC is almost permanently raised anyway, due to chronic infection. She was reassured by the fact my temperature had settled and I am otherwise improving on the IV's. So the upshot is that should some suitable lungs become available in the immediate future, I would at least be considered and the transplant team would assess me themselves to check I was fit enough for surgery. That's as good an outcome as I could hope for :-)

Apart from a couple of hospital visits, I did have quite a good birthday week and managed to spend all my birthday money in about the space of an hour. We took the wheelchair on a wee trip to the shops for a couple of hours, and I bought some new tops and an umbrella with pink flamingoes. Andrew says he won't be carrying it for me under any circumstances. Sadly however the birthday week has come to its end and mum made me take all my cards down today. I am still refusing however to take down the (now wrinkled) helium balloons I was sent in the hospital. I think there's still a good week left in them yet..

Wee Seb is being shipped off to his Granny's again this weekend, as we are going to a friends wedding. It's a whole weekend of celebrations with a BBQ on the Friday, wedding on the Saturday and lunch on Sunday. I'm hoping I will be feeling ok, but since we are staying at the hotel I can at least have a rest whenever needed and will be taking my oxygen concentrator to have in the room with me. I am really looking forward to the weekend, especially since there will lots of friends there that I haven't seen for ages. I think a good catch up with friends could be just what the doctor ordered.

Well, I am writing this from home (yay!) although I did have to change to IV antibiotics today. My infection markers are still quite high, plus I have developed terrible headaches which wake me in the early hours of the morning. These are likely to be related to high carbon dioxide levels overnight, so is a sign that my lungs are struggling somewhat. I am using my oxygen 24/7 at the moment but hopefully can reduce this down when my infection has cleared up. Thankfully the doc agreed that I was fit enough to do my IV's at home, so I will just pop up later in the week to get my bloods rechecked, and hopefully it wont be too long before I am back on the active list.

It was interesting to find out today that the transplant team had been discussing my post op pain management with the CF team. They had been a little concerned that the pain seemed non responsive to some standard treatments, so have been considering alternative drugs they could use post transplant. Personally I think the main issue was that I had to continue doing regular physiotherapy for my CF with a wound across my chest - this was clearly exacerbating the pain, as was coughing in general. After a transplant I wont have dodgy lungs any more, so this should not be a great problem. Either way, it's good to hear that they were listening to me when I said it was 'still sore' and hopefully next time round they will have some tricks up their sleeves if I am struggling at all.

On a positive note, I did have a lovely 'birthday weekend'. I had some friends over on Saturday for a catch up, and bite to eat. Luckily mum was here on Friday and had pre-prepared everything for me, so I didn't have to really lift a finger all day, and Andrew was there to pour drinks, dish up the food and do all the clearing up. There are some perks to being ill. On Sunday my good friend Fi came to visit (with her lovely dog who ate all Sebs chew sticks haha!) Later in the afternoon another friend popped in with a birthday present for me, so all in all I had a lovely weekend and was thoroughly spoilt.

In my opinion everyone should have a 'birthday week' so I still have several days left of pampering. I don't take my cards down for an entire week either - I think you should be able to enjoy them for more than one day. So, on that note I am away to put my feet up and relax...

I've only been back on the active transplant list for a week and now now I'm off it again :-( I've been spiking temperatures for a couple of days, so went to get checked out at the hospital today. It's likely to be my chest (despite having just finished IV's less than a week ago) but they have also taken swabs from my wound just to ensure it's not a wound infection. I had to get some blood tests taken to measure my infection markers, and unfortunately these have come back as higher than Newcastle are happy with. After a transplant your immune system is suppressed to prevent rejection, so it would be dangerous to operate when I had an active infection. So for the time being I am not on the active list, until this infection is more under control. I have started some oral antibiotics just now, although I may have to change to IV's on Monday if things aren't settling. The doctor did phone and offer me admission after they had seen the blood results, but I felt we should give the orals a try first and I have the option of being admitted over the weekend if I get any worse. Keep your fingers and toes crossed that these antibiotics work.

On a positive note, its my birthday today :-) I am 29 years young - big party will be had next year. I've had my main birthday present (the ipod) since last week, but still had lots of other nice things to open. My friends are coming over tomorrow (another reason I didn't want to be admitted!) so hopefully a lovely day is in store. Seb has been shipped off to his granny's because last time my friends came over he was found munching on the pavlova left on the dining room table. He has no manners.

I will update on Monday and hopefully it won't be from a hospital bed!

The Dress Rehearsal - Final Part

I spent almost a week in Gartnavel hospital getting my chest back into shape, and allowing me some time to get myself strong enough for discharge home. As soon as I was feeling better I was keen to get home and finish my IV antibiotics there - I think the fact I had already packed my case before the doctors ward round allowed them little choice in the matter. I was so pleased to get home and back to my own bed...and of course, to see wee Seb. I was treated to a few excited tail wags, as opposed to the usual cold shoulder treatment, so maybe even he knew I was in need of some TLC.

I began to feel much better now that I was back home, and my thinking became clearer. Despite the infection being under control I wasn't allowed to go back on the transplant list until yesterday due to a certain antibiotic I was on (apparently this is my 'reserve' drug for any post transplant chests infections, so I cannot be transplanted while on it). It was probably helpful that I had the week to get myself organised - even just the practical things like repacking my 'Newcastle case' and buying some extra items we realised might have been useful. It also gave me a chance to let the dust settle, so to speak, and get myself psychologically prepared for round two.

I find it easier to cope when I can see the silver lining so have spent some time thinking about what positives I can take from what I am now calling my 'pretend transplant':-

• Although I have been waiting almost 2 years, I still never really believed that the call would ever come. A call did come - this means they were thinking of me and a match is possible. Often a second call will come soon after a false alarm, so for the first time the possibility of transplant seems real. For the time being, my fear of 'time running out' has been quelled.

• I seriously doubt the transplant team will forget about me in a hurry - this can only be a good thing.

• Even worse than what happened, would have been waking up with transplanted lungs that failed. I am forever grateful that the team realised in time and did what was best for me at that time.

• I now know what to expect - right up to the point of waking up in ITU. This means I'm about as prepared as anyone could be now.

• Even if I were to get another false alarm, the disappointment could never be as bad.

• The surgeon doesn't even have to know where to cut - he has a wee line to follow. I have toyed with the idea of tattooing on a small pair of scissors to indicate 'cut along this line' but I'm sure he will work it out.

• I now absolutely realise the importance of being at an optimal weight and physically as fit as possible, in order to recover well post op. I don't think I had ever given this enough credence before.

• I realised I had not packed enough clothes for a lengthy stay. My family realised they had not packed anything in advance and were all forced to visit the local Matalan to buy pants and socks. We will all be better prepared next time.

• Andrew's work now understand that he was serious about having to leave at short notice. They wont ask him to go on any work trips down south again.

• I have managed to convince Andrew that I required both an ipod and expensive headphones (I can't wear those in ear thingies) because it would be useful to have some relaxing music to help me sleep. Although its my birthday next week, these items had to be purchased this week ....just in case.

I am sure there are many more positives to take from what was otherwise an awful situation and I have to hang onto these, and just move forward now. I'm all packed and organised for the next call, but what I really need to do now is try and forget all about it and just get on with my life. Onwards and upwards, as they say....


p.s I have no idea why this keeps changing font and text size...I wasn't trying to be arty or anything ;-)

The Dress Rehearsal - Part 3

It was not long before I was stable enough to be moved back to the surgical ward. Amusingly when they went to collect my bed from the ward, they found my mum fast asleep on it. She awoke to the voices of two nurses outside the door speaking in hushed tones "There's someone in the bed!" "What will we do?!" Fortunately roused from sleep by this point she was able to reassure them that she was a relative and not some delirious patient who had just wandered into the wrong room.

I had been given a PCA (patient controlled analgesia) in ITU, which is basically a morphine pump which delivers the drug when you press a button. This kept me fairly comfortable for the first 24 hours back on the ward and I was even able to be helped out of the bed and into a chair for a few minutes by a rather enthusiastic physiotherapist, who insisted I had to be mobilised as soon as possible. At this point in time I was more concerned with the issue of my bare bottom peeking out the back of the hospital gown than I was with the pain of sitting up and getting out of bed, so I duly complied. It was extremely uncomfortable to move and I pressed the PCA button a few times to ease the pain. More of a distraction however, was the physiotherapist himself, who clearly used to mobilising people with tubes in every orifice, casually hooked my catheter bag onto the belt of his trousers as it were some stylish accessory. After a few minutes in the chair he allowed me to climb back into the comfort of the bed.

Towards the end of that first day I appeared to become very drowsy, and thinking it was related to the morphine, the pain team decided to remove the PCA and replace it with oral medication, including oral morphine if needed. For the rest of the evening this seemed to be working well enough and I settled down to sleep. I then awoke at 3am and the pain was unbearable. I lay there thinking "if this is the pain from a superficial wound then I will never cope with the real thing."I buzzed for a nurse and was given some tablets - I looked at them helplessly and thought 'these are never going to work!" Over the next few hours I was given various tablets and finally some oral morphine. I expected it to hit the mark but it did little to ease the pain, so being allowed to have it every hour, every hour on the hour I buzzed and asked for more hoping this time it might work. By morning I was in floods of tears pleading with the nurse to please get the pain team to come back - but they were very helpfully on holiday for the Easter weekend! After the ward round however they called an anaesthetist, who came and set me back up with the PCA. By this point I had had enough oral morphine to floor a small horse and was not remotely drowsy, so the anaesthetist explained that my drowsiness the previous day was due to drugs I was given in theatre, and not related to morphine. Finally I had control of the pain again and this eased things greatly.

Despite the better pain relief, it was inevitably still painful to cough which made clearing my chest very difficult indeed. This was made worse again by the Easter holiday weekend, since the on call physios were not familiar with some of the chest clearance techniques I use - so I pretty much had to take care of my own physio. This was something that required a good bit of will power but I knew I had to keep my chest as clear as possible so worked hard on this. However despite my best efforts the infection markers in my blood had started to rise, and it was clear that I now had a chest infection to deal with. Thankfully the transplant team were quick to act and started IV antibiotics straight away in an attempt to keep things under control. Unfortunately this chest infection meant I was now unfit for further surgery had another pair of lungs become available. I was understandanly upset by this at first, as I had almost hoped that by some will of God another call would come before I had even left Newcastle. In retrospect however, it was the best decision that could have been made. I needed time to deal with what had just happened - both on a physical and emotional level.

The next few days passed in a haze of morphine, as I continued to press the PCA button on a regular basis. We were in unprecedented territory pain wise, as they had never encountered someone who had exactly the same wound as my self - it wasn't half as bad as a post transplant wound (although you have an epidural in this case), but pretty sore all the same. Over those few days I had little to say - I didn't really want to talk about what had just happened, all I wanted was for the pain to go away and to go home. I had company all the time, as my husband and parents stayed with me, yet at times I felt alone and so far from home. As those first few days passed and the reality of what had happened began to slowly sink in, thoughts fluttered aimlessly in my mind and I found it hard to concentrate. The doctors kept reassuring me "you will get your transplant - it will happen" and suddenly I was filled with fear. I wasn't even sure I wanted a transplant any more - if I was struggling to cope with a superficial wound and some post op chest infection, how would I ever cope with the real thing? I tried to imagine the phone ringing again, and the coordinator saying to me "we have some lungs". Those words which would have previously filled me with joy, were now associated with fear and pain. Transplant had always been such a distant thought - something that may never even come in time and was perhaps only a fairy tale to chase. Now it felt so real - yet in reality it remained only a hope. The dichotomy of this situation - the being so close, yet remaining so far, was hard to process.

As the days passed and the end of a week became near, I focused on the physical aspect of getting better. We finally swapped the PCA for some oral medications and I coped well with this. I went for a walk along the corridor to prove to physio's and doctors that I was now 'mobilised'. The wound was healing well and all the dressings were removed so I could now shower freely. All in all, I was making a remarkable recovery and astounded everyone with my progress. Although I lost around 1/2 stone in those first few days, due to my recent weight gain I was still at a satisfactory weight for transplant and everything looked good.

A week after the surgery it was decided that I was fit for transfer to my hospital back home, where they could look after my chest more effectively. I felt very unwell on the journey back home - my heart was racing, I felt nauseas, disorientated, and feeling very hot I insisted on all windows being open in the car. It was snowing outside and my family had to put coats and hats for the duration of the 3 1/2 hour journey. On arrival at my hospital I was met by one of my physios and CF nurse - I have never felt so relieved to be in that hospital and for the first time in a week I broke down in floods of tears. There was much hugging from hospital staff and I was ushered into a familiar room, treated by familiar nurses and felt so much better for it. I was however still very agitated at this time and it was assumed that all my symptoms (the palpitations, nausea etc) were related to anxiety. However it later transpired that they were side effects of my pain medication and I felt like a different person when I stopped them - so much calmer and with clarity of thought (It was useful to find this out as I can ask to avoid those tablets post real transplant). I was so relieved to find out that it was the medication, as at several points I did begin to wonder if I was losing my mind.

Back in familiar surroundings, I improved rapidly. With the expert help of CF physios I could work hard on getting my chest back into shape, and now removed from the situation, I could stand back and begin to process the whole episode. As time passed, my anxieties began to melt away and I could regain some objectivity. I did want a transplant. Of course I did. I could now think of the real call without fear - I could imagine taking this journey again but this time the ending would be so different. I began to feel ready for the next time.

More to follow.. (nearly finished I promise!)

The Dress Rehearsal - Part 2

The words filtered through the haze of anaesthetic drugs and in my confusion my first thought was 'are you joking, because that's not very funny'. As he carefully repeated the words "You have NOT had a transplant" the words slowly sunk in and I realised that this was no joke. My eyes opened wide in utter disbelief, and tears began to silently fall. I was still intubated so could not speak, and instead lay in the silence that followed. My mum was wiping my tears, and Andrew was holding my hand. At that moment in time it was little comfort.

Unable to think clearly, or to communicate, I then became fixated on having the tube removed from my throat and tried to desperately convey this. As I tried to point at the tube, the nurse kept thinking I was trying to pull it out and would push my hands back onto the bed. I became increasingly irritated as she said repeatedly "in a minute" and "when you are awake" - I felt pretty much awake and could watch the minutes ticking by on the clock. I think the most distressing thing about the situation was that I still had my old lungs, so was coughing every few minutes, which meant she had to use suction to clear my airways. At least after the real transplant I will be waking up with healthy lungs and this should not be a problem. With the realisation that the transplant had not taken place, understandably, the pain also seemed to get worse - probably because it now felt so pointless and unncessary. I couldn't tell anyone it was hurting so instead tried writing out letters on the bed covers. Seeing that I was tying to write something out, Andrew told me to draw the letters on his hand and I was able to spell S-O-R-E and he could tell the nurse I was in pain. It wasn't long after this that the nurse finally decided I was awake enough and asked my family to leave so she could extubate me. She seemed to spend forever collecting pieces of equipment and fiddling with my tubes, before she finally asked me to cough hard and pulled out the tube. It was a blessed relief.

My family were allowed back into the room, and although I could now speak I suddenly had nothing to say. I did however have one rather unhelpful remark for my mum. To understand I have to explain that the day I got the phone call my mum had been telling me about a lady called Margaret Sinclair (who is soon to be made a Saint) that she had started praying to that day. So when I got the call my mum had said 'Oh, Margaret Sinclair was listening'. On finally finding my voice in ITU I pulled mum in close before muttering "Your Mary Sinclair is rubbish!" to which she quickly responded "Her name is Margaret, and she is not rubbish!" It was not one of my most mature moments, although I think we can safely blame the drugs in this instance ;-)

Soon after the extubation the transplant coordinator returned to see me again and offer more explanation now that I was more awake. He explained that the initial inspection of the lungs had been unremarkable - they had looked good and nothing unusual had been reported. At the point they clamp the donor lungs, a call is made to the coordinator to tell them to start surgery on the recipient (me). Around 35 minutes into the surgery the coordinator received a second phone call, which he expected was to tell him the lungs were on their way but it was instead to say there was something wrong with the donor lungs. After clamping, they perfuse the donor lungs with a preservative solution, during which time the blood will drain from the lungs. On performing this procedure the lower lobes of the lungs unexpectedly took on a patchy appearance - something similar to what can be seem in the victim of a road traffic accident (but this donor was not in this category) or in someone with a blood clot in their lungs (but this was also not the case). There was no clear explanation for this appearance and the surgeon had never seen anything like it appear at this stage before, but there was clearly some problem with perfusion in the lungs. He took the very brave decision to report the lungs as being unsuitable at this late stage. Much discussion took place within my own team, who decided that it would be much safer to stop the surgery now and leave me with my own lungs for a while longer, than it would be to continue and risk the transplanted lungs failing - possibly even that same day. It was very fortunate at this stage that the surgeon had only made an incision involving skin, fat tissue and some muscle layers - but he had not touched the bones or entered the chest cavity. If the call had come much later in the proceeding they may have reached a point of no return. On hearing this explanation I felt absolutely no anger or regret that they did not continue, but only relief that a problem showed itself in time, and not after the surgery when it would have been too late. Maybe mum's Margaret Sinclair was watching after all

More to follow..