St Jude's Storm

As everyone knows at the weekend it was forecast that we had a big storm coming over much of England and Wales and Hertfordshire was predicted to be right in the very midst of it all. Rob spent a bit of time on Sunday tidying garden furniture amd making things as safe as possible. 

I have made some good progress while I've been home, but we have been having a few night time struggles. One night we were up all night because I couldn't stop coughing: the swelling in my chest where the main join is to my new heart and lungs is helping to cause this and is gradually going down, so this will get much better soon, but nevertheless it is a bit of a pain from time to time until it does. Another night I went to the loo in the night after a very deep sleep, and my new heart didn't like that one bit and decided it would tell me so, a near faint: I have to remember that when an old heart is removed and a new heart is transplanted the nerves to the heart are severed. These nerves tell the body when you are moving about and without them the body has to rely on just chemical reactions, which are much slower to kick in, therefore you need to slowly warm up before you do anything to give this process time to work. So I'm drumming into myself: warm up, warm up, warm up before you move, especially when you have been laid down for hours in a deep sleep! My mistake, but I'm still learning, sometimes the hard way! The next few nights I had trouble sleeping, because I've started getting some discomfort with my chest wounds, but again, it is something to be expected and it will pass soon, so there is much light at the end of the tunnel.

So, Sunday night I went to bed with my head full of the expected storm on top of everything else. It was a quiet but restless night again with the usual problems and when we woke yet again around 5ish the storm was raging outside. We looked outside and things looked fine though, we couldn't see any damage and the big tree that is at the front of the house was still standing thank goodness and the summerhouse roof was still on! Rob made us a hot drink and it was shortly after that, that the power in the whole village went off. We had no phone signals, land line, internet or anything to find out what was going on. We had a battery powered radio, but the most local radiofor us,  which could have given news was affected too and we couldn't find out what was happening. 

Eight o'clock nebuliser time came and went, the nebuliser only works on electric, so I coouldn't take either of them to help my breathing and one of them is an important anti fungal drug, amphotericin, helping my lungs. Rob managed to get the landline working and we needed to phone Papworth anyway with a few queries, so we explained what was happening to them. I was also supposed to be at the doctors that morning, but when Rob went down to check what was going on, they had no power or phones either and all the doctors were working from the Stevenage centre and Knebworth was left in limbo. There was little else they could have done. 

Hour by hour passed and the power showed no sign of coming back on. This made me feel really vulnerable and stressed if I'm really honest. I feel very vulnerable in my present state at the moment and to not have the full security of my own home, knowing I am missing vital drug therapy and struggling to find any information whatsoever as to what was going to happen was really beginning to upset me. We also have a month's supply of my amphotericin drug, which needs to be kept in the fridge and as hours went on, the fridge temperature was slowly creeping up, so another worry. It made me realise just how vulnerable sick and elderly people are in these types of situation. 

Luckily we have fantastic friends, who came to our rescue, they happened to be in and live in a nearby village that had power, so off we went like two evacuees to their house, so we could get warm and I could take my nebulisers. Thank you Ilaine and Richard for being there for us when I was beginning to feel really stressed and upset. While we were with Richard and Ilaine, we got word from our neighbours that the power was back on. We had lifted candles, torches and the lot out ready for later, so this news was such a relief! So after being well looked after, Ilaine had made a room all warm and cosy for us and made hot tea, we set off back home with huge relief. 

When I got back, there was a most beautiful, big bouquet of gorgeous autumn flowers at the front door, sent by all the members of Papworth PH Matters Support Group. This made me cry, it was so thoughtful and kind of everyone and had arrived at a very apt moment. Again, it is all you wonderful friends, when the going feels tough, that pull me through and keep me going and now I'm sitting here nice and relaxed again. Tomorrow will be a new day! 

On the news tonight, the storm has wreaked havoc across the country and three people have lost their lives. I reckon more lives may have been lost if were not for all the warnings we were given about what was to come and the fact that many workers and commuters heeded them, despite the inconvenience. It is better to be prepared and it not happen, than not to have warning and be caught off guard and end up in a dangerous situation. 

So all's well that ends well for us, but I'm keeping that torch close by tonight as they are still fiddling, trying to get the power back on in some of the nearby villages! Let's hope they get their power back on soon, I know how stressful it can be especially if you are vulnerable in some way. 

Home Again, Home Again!

Getting back to hospital on Sunday evening didn't feel so bad. I was still in the same room, I hadn't been sure whether I would be or not, so it all felt very normal and secure and I knew what was what. I had a gruelling few days ahead that if I'm really honest I wasn't looking forward to.

Monday started quite easily and I was shown how to take my own lung function tests. When the man came to show me how to use the little hand held device, which records it for you, we recognised each other. I had met him regularly as he had done lots of my lung function tests when I was under the PH team, so it was good to have someone I know show me. Using the little device is easy, you just take a deep breath and blow into it, you have to do it 3 times and then record the best reading in the famous little blue medication book. The lung function test has to be done every day, along with taking your temperature and weighing yourself. All these things can give indicators that you may have infection or rejection and you may feel alright and not know. If you suddenly gain a few kilogrammes, then you have to phone the transplant team; if your temperature is suddenly higher, then you have to phone the transplant team; if your lung function suddenly drops more than ten per cent, then you have to phone the transplant team. They drum it in to you, you do not sit and wait to see if things improve, you phone them straight away. This will be a bit of a learning curve for me as I'm a bit of a wait and see how I'm doing person, but I know I will not have to hesitate or it could be life threatening. I guess you learn to live with this. 

Lung Function Monitor

Tuesday came and for me this felt a big day. I had been getting myself quite worked up about it since Sunday, it was time for another bronchoscopy and a biopsy of my new lungs. The biopsy would show if there was any acute rejection. Just being newly transplanted that word 'rejection' fills me with complete horror, I think it will always scare me, but I hope over time I will be able to make an easy peace with it and live with it. They explained to me that it is quite normal to find some rejection at this point and that if this happens they will treat me with intravenous steroids for a few days then all should usually be fine. This reassures me, I have every faith that the transplant team will be able sort out whatever happens to crop up, I have to have. It is all done and dusted and I'm a bit sleepy. The plan was to go back to theatre an hour later to have my Hickman Line removed, but it was postponed at the last minute until the following day and I was glad, one procedure like that is enough for one day. It was PH clinic day and I had a lovely visit from Denise and her husband, which cheered me up. Ruth's husband popped up with a card and pressie too and I was disappointed I had put her off visiting as I had expected to be back in theatre, so I missed meeting Ruth unfortunately. I can feel a trip to Norfolk coming on when I feel better! 

The Famous Transplant Bible

The results of the bronchoscopy and biopsy would be through later in the day on Wednesday, and I was told if everything was fine, I would probably be able to go home. So I both dared to hope and dared not to! 

Wednesday came and I was taken back to the operating theatre to have my Hickman Line removed. This felt very unreal, the last time I was wheeled in there, it was for my transplant, I felt unnerved and also scared as I didn't know if this was going to be painful or not. Tuesday had felt difficult as they had had to make many attempts at putting a cannula in before my biopsy, which had been painful, three different people tried several times, my veins were just saying enough is enough! Wednesday they needed blood tests, same again, several attempts. I never used to have a problem with this, but it was all getting painful and my arms and hands were black and blue, so I didn't really feel like facing much more at this point. Probably very pathetic I know compared to what others have to go through and that's what I kept telling myself. Removal of the line wasn't too bad, it just hurt when they injected the local anaesthetic, there isn't much fat for injections on your chest and neck! Then they calmly talked me through as they did each bit. It was soon over, I had to have stitches, so I've acquired yet another war wound! 

The most significant thing for me was that the removal of the Hickman Line finalised the removal of Pulmonary Hypertension. It is all gone now, there is none left and nothing of it anymore and I am more than daring to hope for the future, hoping to go for a walk, hoping to walk round the shops, hoping to feel better again. When all these chest wounds have healed I'm going to stand under a shower and sing! One of the nurses found me in tears, I just said I'd had enough. How could anyone, unless you have had to have this medication and illness, and there are only a few of us, ever begin to understand what the moment feels like when it is gone?

The nurses worked hard all day on Wednesday to make sure everything was ready for me if I was able to go home. The Transplant Doctor came to visit me around 5 o'clock with a massive, beaming smile and told me excitedly that I had no signs of rejection and therefore I would be able to go home, which was brilliant news. Unfortunately, as well, they have found a problem with one of the 'joins' they have made to my new heart and lungs and they want to keep a close check, so I will have to have another bronchoscopy in a week's time, which they would not normally do at this point. I've also got a persistent, awful cough, which could be connected, but again, in these early stages it is hard to tell. I am going to be admitted to the day ward, so they can do all the checks they need. I am not going to worry about this, they will have had to deal with this type of problem many times before I'm sure. I'm just going to get myself home, get myself fitter and build myself up more, ready for when I go back. 

So Wednesday evening and it's home again, what a lovely feeling, this time home properly ready to start a whole new journey and new life after Pulmonary Hypertension. 

Welcome home!

A Special Treat

On Friday I was given the good news that they were stopping the IV antibiotics and all my test results looked good, so if I would like to, I could try going home for the weekend. I was so excited, it felt like such a major milestone, yet I felt ready and confident to do it.

Home again, jiggety jog

Leaving Papworth and driving home in the car felt very surreal, as though it shouldn't be happening really. Once we arrived home and got inside a whole flood of emotions hit me at once and I started crying for the first time. I don't really know what for - everything - the shock and trauma of events since I left home; my donor, we had just been given some information about them that I had requested; just the fact of still being alive and standing in my own home again; it goes on ...

It was quite late, so we sorted the evening's medication and then I got an early night, that felt special too though, my own bed and next to Rob once more. 

With some of my cards and presents

The next few days were spent getting to grips with the medication. We had to run a hospital regime really, first round of drugs at 6, nebulisers at 8, a whole host of tablets with breakfast at 9, more tablets at 10 and 12. It feels quite a regime with little lull in the morning. This will get much better in time though. Things quieten down as the day goes, with just a few more nebulisers and tablets at tea and supper time. So we felt we managed this well, but compared to managing the medication I used to be on it felt a breeze. 

I need one of these at home!

I tried out things like having a bath, now that was fun! I managed to get in alright and I used my step and small bath chair I had from my Pulmonary Hypertension days. Getting out was another matter, because of my scar and injured sternum and ribs, I am unable to pull myself up like a normal person and I suddenly found I was far too low to attempt it safely. So there I was stuck in the bath thinking, 'oh no, we're going to have to phone the fire brigade to hoist me out!' Somehow in the end we managed to do it, but I will definitely need to use a higher bath stool next time. It was finding out those little simple daily things that this weekend was about though. 

I'm beginning to get some of the drug side effects too. One of the drugs, Prograf, can make you shake. I didn't think my shakes were so bad until I tried to pluck my eyebrows and had to abandon it as a dangerous mission immediately! 

A friend brought a pressie round to give to Rob for me and was stunned when I came to the door. She gave me some lovely chocolates, which I enjoyed, I've got to eat for healing, so guilt free chocolates, you can't beat that! 

In the garden (with the Michaelmas Daisies)

I enjoyed a walk around the garden. I had been waiting all autumn for a huge display of Michaelmas Daisies and thought I would miss them, but they were out at their best and I was so pleased I got to see them. Small pleasures, enjoying simple things was the weekend. 

Rob cooked a lovely roast dinner and we had a quiet afternoon before all too soon it was time to go back, which felt quite hard. Rob loaded the car and I stood and had one last, big glance at the house before we set off back to Papworth. 

The weekend went well, we are fine with the medication, I've found some things I can manage and some things I can't, but I feel confident and motivated to get home properly now and really start getting on my feet. 

When I got back to Papworth, I was still in my old room, so that felt good as I know what's what and knew I would probably get a decent sleep on my own.

Now for the next phase in my recovery.....

Two Weeks Post Transplant

This week has been a week of ups and downs, but fortunately many more ups than downs! Saturday was lovely as they allowed Rob, Oli and the girls to take me over to the canteen for a drink and then as it was a nice day they took me round by the duck pond. It was lovely to get out into the fresh air at last. Everything felt a bit surreal. It's taking a long time for it to sink in that I've actually had my transplant.

After such a nice day, followed a bad night, where I had breathing problems and everyone sprang into action, ECGs, X rays, blood tests, nebulisers, doctors and consultants - all in the dead of night. By morning they were treating me with nebulisers and diuretics, there had been a problem with fluid on my lungs and tackling the fluid has been an ongoing problem all week. I have had to have IV diuretics to cope for most of the week and now I've managed to go on oral diuretics, which is a step in the right direction. Now the aim is to work towards not needing them. 

I was also put in isolation because they found traces of MRSA after my first bronchosopy and again they went straight into action. I had to have two, two hour sessions a day of IV antibiotics. Now a third of the population carry MRSA, so it is all quite normal, but when you are hospitalised and frail and have open wounds there can be a big threat, as well I am heavily immunosuppressed with little immune system at the moment. This morning I was taken off the antibiotics and told all should be ok, they have just done another round of swabbing everything to get a finall all clear. So all is going in the right direction now on that front. 

Apart from those few things, everything else has been going really well. Last Friday I could hardly stand up, this Friday I have just done four rounds round the ward and done ten minutes on the exercise bike. So not just small steps (excuse the pun), but leaps and bounds. My apetite is still poor, but I'm managing to have a good go at every meal, so again much better than a week ago and all going in the right direction. 

One of my biggest challenges this week has been to learn and understand about my new drugs. I am now self medicating and administering my own drugs. Everything is written in a little blue book, so nothing is taken twice or forgotten. It would be life threatening to do either of these as the drugs are keeping a delicate balance between stopping rejection and avoiding infection. There are regular blood tests ongoing to manage the right levels of drugs. 

This week has also felt special because of all the good wishes, cards and pressies you have been sending me. They have been keeping me going and encouraging me on and they have really helped me. It sometimes feels like you have to have a lot of 'mind over matter' and all your good wishes have just helped carry me along each day! 

I am so excited about life at the moment. 

Sleepy Hollow

Kath spent the first few days post transplant on Monday 30th September (Day 1) in an induced sleep - here are some of the entries from the diary I kept for her of those days:

Tuesday 1st Oct - Day 2 (my birthday!)

• Phoned at 6.30am for update - no real change
• Got to hospital at 10am - straight in using batphone and sit with you 
• Nurse jenny said: lungs doing ok - oxygen reduced down to 40% and sats 90%; heart is the issue - very slight improvement on last night but not where they want it to be so support from heart balloon pump machine (noisy piece of kit about size of R2D2); no significant bleeding; keeping sedated - overall stable and just taking things as they come
• The sight of the stacks of machines, ventilators, chest drains etc doesn't seem quite as daunting this morning even though have only had a couple of hours sleep so I am slightly less 'teary' when I see you  
• Am amazed at the nurse who is covering you for 12hours - does not stop once twiddling, checking medications ('plate spinning' as I call it) all the time chatting to you as if you're awake - terrific stuff
• Doctors kick me out at 11am so grab b'fast and pop up to Transplant Unit  - bump into Sita and Mickey! Had a good chat and they gave me reassurance. Good to see Sita looking so well
• Back to see you - physios do rounds and say chest looking very clear
• Consultant Jaz appears - lungs ok, heart sluggish - can take some time. Prob keep you asleep next couple of days - 'reasonably positive' for outcome. I think, well 'reasonably positive' sounds better than 'we have concerns' - gotta take the positives
• Sarah, Rose, Oli and David arrive
• Treat them to a BigMac for my birthday (we joke about 'happy meals') 
• Home and sleep for an hour, back to hospital for 6.00pm
• Evening - sugars very high is an issue - was as high as 22 down to 17 wants to be 6-10 range. Getting 40ml insulin to help which is v high dose. Lungs still ok. Giving furosemide to help wee - if no good will have to put on dialysis - hope not!
• Had a bit of a black moment but spoke to my brother who quickly snapped me out of it - phew.
• Saw Transplant Coordinator Ann - very very supportive and positive - stressed this is not unusual - Mr Tsui (Clinical Director and Surgeon who did op) keeping close watch and he seems ok that making progress if very slow
• Met night shift - Sarah and Oli come to see you at 8.00pm
• Leave at 9pm - home at 10pm - Rose had chinese and cakes with candles ready. Happy birthday!
• Have glass of wine - bad mistake - very tired; do Social media updates and bed at 12pm, wondering what the hell have we done? Soon learn that night-time is not best time of day to reflect on stuff as it can all go a bit Pete Tong 

Wed 2nd Oct - Day 3

• Phone hosp at 6.30am (no calls from them in night - phew) after usual crap night's sleep; wake to find someone has jumped on my chest in the night
• Steady night, improved sugar levels, off insulin
• Media commitments
• Helpful email from my friend Doc Martin (as he shall now be known) who has been there, done it got the T shirt (these become a daily feature - my thought of the day from him and prove invaluable coping with what lies ahead in next 24hrs each day)
• Hospital for 10.30am - O2 down to 22 (yey). Steady if slow improvement. Physios happy (yey again), X ray done - some shadowing on lungs 
• Bianca (transplant nurse) takes me for tea. Sounds like you were very very poorly at outset but they seem quite a bit more positive now. Tell her not to be too nice to me as I am constantly just one nice comment away from welling up. 
• Trying to wean down heart drugs but blood pressure up so will be slow. Keep you asleep today. Still on R2D2 the heart pump machine (boo hiss)
• Another nurse who was on on Monday just said you were really poorly post transplant, a little improved yesterday and much improved this morning but still poorly obviously. So you were worse than we actually realised on Monday. Happy I didn't understand this at the time as it was bad enough seeing you then anyway.
• Lunch at hospital, go and see the Pulmonary Hypertension nurses - they are all delighted and smiling for you. Home for 3pm
• Sarah and Oli come up at 5pm
• Started to open eyes WHAT!!??- Sarah rings me; Rose, David and I drop everything and hotfoot back to Papworth; we learn they are just reducing dose to make sure your senses are ok but won't wake you properly just yet
• Moved your arm (woo hoo)
• Saw Mr Tsui - said heart much improved - bestest news!
• Keep you sedated tonight and try and wake up again at 6am in morning
• Went for dinner nearby in Elsworth - same place as Monday night but we are all more relaxed and less zombie looking. Good food but service sooo slow 
• Come back at 9pm to see you for an hour. More eye opening
• Home at 11pm, media commitments, think about donor family and what they've been through but decide not to dwell on this yet as there will be time for this when you are home and we can take stock; 12pm bed

Thursday 3rd Oct - Day 4

• No calls in night again - phew, though 'jumping chest man' has been again, the bastard
• Got to Pap at 7am as want to be with you when you 'come round'
• Wouldn't let me see you (prob 'cos trying to settle you, as subsequently learn your heart rate went mental up to 200 when they tried to wake you, so they had to 'shock you' to get your rhythm back. Bloody glad I didn't see them with the paddles shouting 'stand back' as I would have freaked out. Totally. They say it's normal. To you maybe, I reply.
• They let me in at 7.30am and stay with you for half an hour - your face has a lovely colour today and none of that rubbish iv induced blotchiness you've had for last 2 years. I tell you this but you can't hear me. Sing 'I'm Still Standing' to you - softly so the nurses don't think I've lost the plot. Chat to you and tell you what's been happening and tell you off for not giving me a birthday card. Am a bit weepy. Girl's blouse.
• Not responding to commands but eyes open and leg arm movements so sedated you again and will retry at 10am
• Doctor said lungs ok and heart playing catch up but 'par for the course' - no signs of major anxiety from team which is reassuring  
• Went for bfast - came back at 9am - went into rest room and lovely Anne (one of the Transplant coordinators) came in, so had a chat. No one is panicking which I am taking as a positive sign you are heading right way. 
• Then came back to see you and Jaz said would leave waking you till 5pm and in meantime would try to reduce support of heart drugs and try and get you off heart machine pump as thought the drugs might be starting to irritate you ironically.
• Biggest issue is trying to wake you without you freaking about the ventilator stuck down your throat into your lungs (I mean, who wouldn't freak?)- this is what happened this morning when your heart rate went to 200. 
• Jaz basically wants to try and reduce reliance on all the equipment i.e. all the machines 'that go ping'.
• Rose, David came but doctors doing rounds so they shoot off to Cambridge instead. Sarah was coming but put her off till this eve when they try and wake you.
• Popped in to see Bernice who is back in Baron Ward (trying to bulk up) and came back to see you at 11am. I bloody well hate CF.
• Keep opening you eyes but not responsive - tell you that you are very naughty. Am a bit teary (again) - what a wus.
• Platelets being ordered to enable R2D2 balloon pump to come off this afternoon. Don't really follow this but if that bloody machine comes off, who cares? 
• Noon - been here for 5hrs....
• Left at 12.30
• Home for lunch and kip for an hour (wow that felt good and discover 'jumping chest man' only does night visits), get back at 5.30pm - Sarah, Oli already here
• Off the heart pump for two hours (4pm) and staying stable - AMAZING - this is biggest step for me to date. After some debate decided they are going to try and wake you later this eve.....the suspense is killing us...
• Turned off sedation at 6.30pm - now we wait.... I go to the visitors room with Oli to let the girls be with you to see you wake hopefully. David at his house tonight.
• Coming up for 7pm...what's going on?!!!
• Went in just after - lots of thrashing and eyes opening - allegedly squeezed a nurse's hand 
• Can't get you awake so go for a Ruby at Shilpa's up the road (highly recommended btw) and bump into Oli's aunt and uncle in there - weird. People actually go to Papworth Everard OTHER than to go to hospital? Had never occured to me!
• Back at 9pm
• SMALL SQUEEZE OF MY HAND!!!
• All drugs majorly reduced; but you are getting agitated about the ventilator so, as it is getting late, they choose to sedate you again (1/3rd of dose you started day on though) and will try again to wake again in morning. 
• If you continue to react badly they will do a tracheotomy and this will make it more comfortable for you when you wake. We resign ourselves to this.
• Much reduction in all the drugs today and getting rid of R2D2 is a big step forward. And the bay sounds so quiet without its racket....

Friday 4th Oct - Day 5

• Usual crappy sleep but must have dosed off long enough for 'jumping chest man' to do his stuff; phone nurse at 5am - to give drug to help wean off the ventilator and switch off propanol at 8am. Here we go again.....
• Get there at 8.30am but am not allowed in till 9am - you're groggy but recognise me and Sarah and nodding your head and we start blubbing - I quickly go and play team tag / swap with Rose (you can only have two relatives in CCU at a time) and bawl like a baby (jeezus, again?) in the waiting room and shakily text family and friends. 
• We play team tag for an hour - you can't remember why you're here (we tell you) or getting the call. Smiles at girls - squeeze hands and lots of nodding and shaking - you are able to move hands feet . Blow kiss at Rose
• Try to calm you about ventilator - heart rate's ok. Then get thrown out. 
• Stacie is in clinic today so we all go and see her - she has balloons and an emotioanl card for you. Cuppa. Try and get back to see you but can't.
• Saw Anne - reckons you won't need trachi - yes!
• Get talking to another chap whose fiancé is in theatre having her double lung and heart - unbelievable - two in a week
• Got to see you again about 12.30 - coming much more responsive with eyes getting more focussed and following people in room 9though you are having some delusions - probaly a blog on these sometime!- and played tag till 1pm - you were a bit icky and but we couldn't move you as it upset your heart so they cleaned you up and gave you some help 
• Lots of squeezes and nodding and new trick - kisses!!! Made me cry repeatedly. (Man up Graham!) Shrugs is also a new trick
• Went for lunch while they cleaned you, went to duck pond (the weather has been great thankfully) then it was quiet time (2-3pm) so rested in waiting room. Rang your Mum
• Bumped into Jaz - has asked them to take ventilator out - and after that next thing to aim for is to take chest drains out
• He said needed to be careful with drugs as you tend to react to them - we know!
• Back at 3pm to see you - more of same - hand squeezes and smiles
• We go for tea and walk round duck pond
• Came back at 5pm and ventilator is out!!!
• Here are some of your first words...I need a drink; Have I had it done?; Whats up?; I love you; Can I go to sleep?; I love you too" - more blubbing
• At 6.30 we go to Poachers for chick ham pie dinns back at 7.30pm and see you for 15 mins blew me a kiss bye bye
• Hospital said you were settled when rang at 11pm
• All knackered, media commitments and bed

Summary

Those first few days were incredibly tough but Team Graham is a strong one and we spent much of the time in each other's company and allowed ourselves to have a laugh and a joke amongst all the worrying moments. The support Sarah and Rose gave me was immense and, in turn, they had the support of Oli and David which was of great comfort - especially when I was at hospital on my own and I knew that they had company. The nursing staff over these days were brilliant - compassionate, caring, unstinting (is this why they call it CCU?) - the NHS at its finest and we all knew you were getting the best possible treatment.

So that's the end of my guest blogging for now as, with you awake, I leave you to take over the reins (collapses into bed.........enter 'jumping chest man' stage right)....

No Ordinary Day.....

It seems a little unfair on Kath after all her blogs that I get to pen the first one after her transplant but I was always under strict instructions to keep it up to date when it finally happened. Apologies to her regular readers that it has taken me so long but our lives have been turned upside down over the last few days.

So......we can hardly believe we are here and it has actually taken place. The name of Kath's blog seems to have take on a certain resonance since last week and the words in her last entry look almost prophetic now when, discussing the average two year wait, she said "we have reached the destination we have been travelling towards for the last few years."

We had spent a relaxing day on Sunday in the garden on a warm and sunny day which happened to be our wedding anniversary. The conversation had inevitably turned to Transplant with the same conclusion that it was the right choice for us. 

Just as well.

Having made up Kath's iv meds as usual at 6.30am on Monday morning I got back into bed with a cup of tea and the phone rang. Our phone never rings at this time (not even for PPI chasers) so we knew it would be Papworth. 'A possible match. We want to bring you in straight away'.

Kath is calm while I run around like Corporal Jones - contact girls, contact Kath's Mum, get dressed, pack suitcases in my car, ambulance arrives, follow ambulance, call friends and family as I follow behind using hands free, and keep chatting to Kath in vehicle in front. We had imagined the call would come in the middle of the night not Monday morning rush hour. Watching all the commuters with Monday morning blues while we were making a life defining trip seemed incongruous to say the least.

By 8.30am we were on the ward being told the retrieval team were still with the donor so we wouldn't know for a little while whether we were a go or not. Whilst we had priority we were told two other patients were being brought in as back up, one for the heart, one for the lungs. We assumed neither was on the urgent list otherwise they would already have been in hospital and given priority to us.

As the time ticked by, we tracked Rose's progress back from Uni as Oli, Sarah's boyfriend, had gone to fetch her. Meantime, Sarah told her boss at work and arrived to join us with the wait. We knew that false alarms are common place so we were trying not to get too worked up, knowing that we could be back home in a couple of hours. The transplant coordinator, Paul, popped in from time to time but without much hard news until 12.30pm when he appeared with a gown for Kath and said he was 99.99% sure we were going ahead. He would know within five minutes if it was 100% and if so, then Kath would be going down to theatre  pretty much straightaway.  So Kath gets into her gown and for the first time we start to believe that it might actually happen.

12.40 We're on. Kath becomes serene - fully accepting that this is now going to happen an giving herself up to the transplant team. I wheel Kath down to theatre with Sarah and say our goodbyes. Sarah and I try and hold it together (with limited success) we walk back to the ward to collect get her things.

We manage to eat something in the canteen or at least pushed it round the plate awhile. Sarah makes me smile "I know we've been waiting for 2yrs so I think we should have been better prepared". We pass the time chatting and she leaves at 4.30pm only to return at 6.00pm with Oli and Rose. We settle in the critical care relatives room which is actually quite comfy with large settees, soft drinks and a TV. As we find out later in the week this room can get very busy in the week at times and especially at weekends but on the evenings it is quiet and on Monday night we have it to ourselves. Paul pops in occasionally to let us know what's happening and at 7.00pm he says it will be another couple of hours but the new organs are in and all is ok though they are redoing one of the connections to the heart, so he suggests we go and grab something to eat. We do just that and, despite looking like a group of zombies, go to a pub in nearby Elsworth where we all sit with glazed expressions looking blankly at the menu. Oli in particular is zonked having been at work in London at 5.30am then driven to Bournemouth and back to get Rose and then to Papworth. He is close to passing out but manages the meal (just) and we head back for 8.30pm.

We then get introduced to 'Papworth-Time' at 9.00pm when a critical care nurse says we should be able to see Kath in half an hour. Two and a half hours later we are becoming frantic and have by now discovered the red 'batphone' in critical care so we try to find out what's going on. Profuse apologies, taken longer etc etc. At 11.30pm we are led in to see the surgeon Steven Tsui (the clinical director and lead transplant surgeon at Papworth). To be honest not much of what he said sunk in with me (but the kids pieced it together for me afterwards), but he warned us that the new organs were very tired after the ten hour operation, especially the heart, and would require extra support. He didn't say anything necessarily to unnerve us but it was clear from his comments that Kath was very very poorly at this point and he warned us about some of the problems she may face over the next 48hrs. Finally at midnight, we were able to go and see her briefly. By this stage we were all exhausted and seeing her lying there almost lifeless in the dimmed lights was tough. Very tough. For all of us. As we were ushered gently from critical care shortly afterwards we had an extremely tearful group hug as the emotions of the day just overcame us.  

After half an hour and more tea, we were strong enough to drive back home for 1.30am at which point  Rose's boyfriend, David, joined us having hotfooted it back from Exeter Uni. After updating friends and family, I collapsed into bed...both happy and scared witless in equal proportions. 

As Sarah had said earlier, you have two years to prepare, but nothing can actually prepare you for the reality of it all.

Rob