Archives: Improvement

Speechless is completely how I feel at the moment.  You are all the most amazing bunch of people and the messages you’ve sent Oli have been so wonderful and heart-warming.  These messages are so important for encouraging him and letting him know just how many people are sending love and prayers his way.

Today has been another fantastic day.  Oli has been introduced to the Little Blue Book (he’s assured me the little black book was thrown away a long time ago).  The LBB holds all the dosage detail of his medications which allows him to be in charge of what he is due and when.  This is a very important step for him as it is part of a checklist of things that he needs to be able to do before he is allowed home.  As a CF patient, Oli has been used to self-medicating for years, however, this is a whole new area for him.  Oli has to learn about the drugs he takes and needs to remember to take them at the right times and in the right dosages.  It won’t take him long as he is used to taking regular medication but the list of drugs is HUGE so he’ll need to be a memory man for a while until it becomes second nature.

Another awesome step forward came within the Doctor’s orders, Oli has been told to go out for a pub lunch on Saturday! Even as I write I am grinning stupidly from ear to ear!  It’s so odd to think how quick these things are moving.  It has been three weeks since the transplant and in so many ways it feels like longer as we’ve been through massive highs and despairing lows.  It’s so amazing to think that this gift has changed our lives so quickly and so wonderfully.  Oli is doing so well and is making great progress, almost hourly it seems!  If you haven’t already done so, please consider signing on to the organ donor register at www.uktransplant.org.uk.  If you have signed up, please talk to at least one person tomorrow about Oli’s miracle, Emily’s miracle (www.pinkandsmiley.blogspot.com), Peter’s miracle (http://waitingforthecall.blogspot.com) , James’ miracle (www.ox28.com) and the other miracles that are waiting to happen.  Encourage them to think about signing up, too.

You are amazing, hope you’re enjoying the ride as much as we are x

This post has been a bit slow in coming, am really sorry. Thankfully though, it’s not for bad reasons as Oli is doing really well.

 Oli is now completely wireless, the vas-cath and catheter have now been removed.  This has caused much excitement as today Oli was able to put clothes on and feel more ‘normal’ (there are so many jokes about Oli + normal, you’ll have to think them for yourselves as there isn’t space for me to put them in).

Oli has also had almost all of his pills and potions stopped by his consultantas he wants to see how Oli manages without them.  This makes a big difference to his system as he did have a pharmacy’s worth of various medicines rolling around his insides, much to his kidneys dissatisfaction.

The days have been going brilliantly for Oli but the nights are still difficult.  He is getting increasingly homesick and from 6pm starts to get himself wound up about us leaving him and not wanting to be alone.  It’s completely understandable but it’s also something we really need to try and find a solution to as we don’t know how long it will be before he is home and we don’t want it to remain a problem.  It has crossed my mind that you guys could really help at this point.  Every comment that gets written and posted gets sent through to his phone so that even though he doesn’t read my posts, he sees your comments.  If you think of Oli at some point in the evening after 8pm, please leave a comment telling him just that and then he may not feel so alone.  I don’t know if it will work but it’s worth a try if it will help him feel less lonely.

There’s not really any more news as things are progressing steadily and with a definite upwards curve.  As a very marvellous man said to him yesterday “This isn’t the face of a worried consultant”. Yay!

In case you haven’t read it, please check out the ‘A message from your host’ post which is before this, it’s a very special post that I know you’ll want to read.  I wasn’t keen on writing over it but I’ve had my orders to keep everyone updated and now Oli can run faster than me I’d better not make him grumpy!

Today has been anothr great day, I really can’t think of a time when I’ve been as happy as this, it’s the best feeling in the world. 

When Oli’s Mum and I got in to see him this morning we found a sad and tired Oli who didn’t really want to play this game anymore, I think the night on dialysis hadn’t helped him get any sleep and the extra fluid around his body (all 8 litres of it, not nice) was making him so unformfortable that he didn’t know where to put himself.  Oli’s Mum got sent off pretty quickly to go on an apple juice hunt and I just sat myself near him, at the end of his bed.  After a couple of quiet minutes he looked at me and said “I need to pull myself out of this don’t I?” and we came to the decision that I was going to put some music on the cd player (thanks Kate!) and Oli was going to sit up and be more positive.  From that moment on Oli’s day just got better and better, and better!

The Big Head Dude Doc Man (who needs capital letters because he is that important) came in to see Oli and decided that the majority of his remaining wires, tubes and drain should be taken off.  We were so happy!  The central line, which has 3 or 4 lines in it and is in no way connected to the London Tube, in Oli’s neck has been removed and instead they have re-accessed Oli’s portacath which will be used for his IV drugs.  The arterial line (I don’t know what this was for, I think it may have been blood gases) from his groin has been removed, the final chest drain has been removed and he is no longer on the cardiac monitor. 

The reason for all of this, apart from being well enough to be taken off of everything, is because of all this nasty extra fluid.  The overnight filtering has really helped, last night 2 litres of extra fluid were removed by this dialysis machine, but the body will be able to shift the fluid much more easily if Oli is able to do more physio, which in turn is easier to do when wireless.  The lines in Oli now are the port when it’s in use, the vas-cath (in his groin where he connects up to the dialysis machine at night) and his catheter.  Hopefully the vas-cath will come out tomorrow and once the extra fluid comes down and they are needing to check his urine output so much, the catheter will also get removed.  I’m not sure how long they will give Oli the IV drugs but at some point they will stop using his port and give him oral antibiotics instead.

This evening Oli doubled his 40m record.  It’s so amazing!  I wasn’t there for it but Oli phoned me to tell me and the joy and emotion in his voice made me want to cry with happiness – this is someone who 3 weeks ago was really quite poorly and got out of breath getting out of bed, this really has been the gift of a lifetime for Oli, and for us.  Oli was telling me how he walked from his room to the end of the ward and back and said that the nurses were beaming at him and the kitchen porter guy (official title, I’m sure) was cheering him on and telling him how good he looked!  Oli also said how he met a nurse he hasn’t met yet, she asked him what he’d had done and that made him realise HE hasn’t told anyone yet – lots of people know but not from him, for the first time he said ‘I had a double lung transplant nearly 3 weeks ago’ and when he looked over and saw his nurse’s face, Oli could see exactly why this nurse did his job, Oli said it was such a picture.

This evening Oli was able to spend a lot of time with his Big Bro who has come up to see him for the weekend, this is the same legendary Big Bro who gave the butt kicking last week.  Wow, must this be a different Little Bro he is seeing!  Following his legendary form, Big Bro has set Oli a challenge that has been agreed to (witnessed by Oli’s Dad, so no getting out of it).  On April 10th 2008 Oli will run alongside his Bro and his Bro’s marines for the first mile of the CF Trust’s Tresco Marathon.  How unbelievable is that?!  I’m thinking that all those who promised to wield big sticks at the previous exercise programme might need to get those sticks out again!

Bring it on!

It’s Oli here. Hello! This won’t be long as it’s quite hard to type long things on my ‘berry and i’m still not up to much in the way of telephonic communication.

I really wanted to write to thank every single one of you for your wonderful prayers, thoughts, best wishes card, messasges and comments on the blog – all of which get emailed through to me on my phone.

I’m sorry i’m not replying or responding, but things are still pretty up and down and my hands are so shaky that texting is tricky. Kati’s update on the day will tell you much more, but things are improving greatly.

It means so much to get your messsages and read your words of support. I promise I’ll get round to a proper catch-up with everyone soon.

Take good care of yourselves cos i’m coming for hugs when I get out!

*Before you begin to read please make sure you are comfortable, this may turn into a long rambling post, apologies!*

Oli is doing so well.  I was really excited today because I haven’t seen him since Thursday and even then he was asleep.  I have to admit, I was a little nervous about seeing him because I didn’t know what to expect, in my head was a picture of a very poorly Oli attached to everything and not very communicative.  I was sooooo wrong!  Oli was sat in a chair, next to his bed, when his Mum and I walked in at 10.30 this morning. 

I don’t know how much you guys know but ITU has very strict visiting times, necessarily so, it’s a busy place.  In the morning visiting time begins at 10am and finishes at 1pm, there is a break for a couple of hours and the second visiting slot starts at 3pm and finishes for the day at 7.45pm.  I would have thought that the majority of people in ITU are heavily sedated and so the time could potentially pass by without them taking too much notice.  Unfortunately for anyone who is completely aware of goings on (if maybe a little confused and overwhelmed every now and then), the tiny visiting slots are very precious times that need to be filled with constant, loving company.

These tiny visiting slots are often made even smaller due to the current system of intercom admittance to the unit.  I really want to point out before I go any further that this is definitely not a criticism of the staff who work in the unit.  Every member of staff I have seen there has been working so unbelievably hard and doing their job of taking care of very poorly people. 

HOWEVER, the intercom system does not work as efficiently as the staff of the unit.  It works like this… Visitor presses intercom buzzer, buzzer is answered and visitor announces who they are and who they want to see, ITU person goes to check that the patient is ok to accept visitors and then returns to buzzer to let visitor in.  Sounds simple?  It should do, but it can take a long time for the buzzer to be answered, the ITU person can fail to come back to let you know if you can visit or not, the ITU person doesn’t press the admittance button to open the door so you have to go back and press the buzzer, blah, blah, blah. 

So today, Oli’s Mum and I arrived at 10am but didn’t get an answer to the buzzer until 10.30am and when we got to Oli we found him quite distressed as he’d been told that no visitors were waiting to see him.  It may sound small but it’s a BIG thing.  Try to imagine being hooked up to all kinds of things, alone in a bed for 14 hours without any form of entertainment, feeling scared and clock watching, hanging on to the hope that at 10am your Mum will come in and give you a hug.  I really felt for him when we found out that he’d been told that no-one was there for him, he had suddenly turned into a tiny, scared little boy whose Mummy hadn’t turned up to collect him from playgroup.  I’d love to help them find a way of making the intercom system run more smoothly, it makes so much of a difference to patients.

So ramble over and back to Oli.  He is good, he looks good and I couldn’t believe that he was sitting up, out of bed.  After the initial drama he was chatty, until he got tired, and seems to be completely ‘with it’.  His is no longer on kidney dialysis as his body has corrected the imbalance of sodium, potassium, etc.  He is on a little bit of oxygen, via nasal specs, but is largely as we left him on Thursday.  The drain for the important leaky fluid is at a good level and all things being well he will be drain free in a week or so.

Luckily for us the doctors came to see Oli while we were with him so we got to listen in to what they were saying.  The overall message from them is very positive.  They are happy with the way things are going and although they would like Oli to stay in ITU for another 24hrs, they are very happy for him to go back to the ward at the beginning of the week, once the ward has a bed available.

I have to say that at this point I am just so happy that Oli is doing well after the scare on Friday.  Friday hit us pretty hard as we’d maybe forgotten that it was still early days and been swept up in how well he was doing.  However, all credit to Oli and the doctors, they responded quickly and did what they hoped was the right thing and Oli has been so strong, physically and mentally throughout this.  To me he doesn’t appear discouraged that he is back in ITU after being on the ward so quickly after the transplant, if anything, it has made him more determined to do what he needs to do to get back to the ward.

We must remember that we’re still only just setting out on this journey.  We’re going to have lots of wobbles, hopefully not too many lows and more than a few highs.  I think my outlook is to enjoy the highs and take care of the lows when they happen. I want Oli to feel proud of himself for fighting so hard and to add these battles to his armour and use them to attack the next lows but it really helps him and us to know that we’re not alone on this journey and that you’re all with us every step of the way.  Thank you so very much for sticking with us, it means a great deal x

Sorry, have had that song in my head all day and it has had to come out somewhere! 

Oli has been on the exercise bike today!!! 

He managed 4 whole minutes and, much to his surprise, conducted a conversation whilst cycling.  Anyone who knows Oli, knows anyone with CF, has CF, is just plain rubbish at exercise (that’s my category), will understand that is pretty amazing and is definitely ‘up there’ in Oli’s list of All Time Greatest Achievements Ever.

His mood has remained buoyant and although I got there too late to witness it, I have it on good authority that he has been excited about all the things he will be able to do.

A slight bump in the road to recovery means that tomorrow morning Oli will be going back to theatre for a very brief operation to tie up something that is leaking very useful fluid (isn’t my medical knowledge astounding?!).  I have been told several times what the actual reason and procedure is but my brain is also leaking very useful knowledge.

This may sound like a step back and it will put him back on epidural and catheter again but it is in fact a really simple op (fingers crossed there are no complications).  Once Oli is over the sleepiness of the anaesthetic, he should be able to be tube free in a week or so.

I will of course let you all know how tomorrow goes but please be reassured that I’m not concerned about the op and so you guys needn’t be either.  I’ll let you know when to worry and when to cheer (and when to boo and hiss, just as it’s nearly panto season).

Today didn’t get off to a great start but has ended on such a high, even as I write I can’t get a stupidly happy smile off my face.

As far as I can gather this morning was pretty rubbish.  Lots of things happened all at once and although none of them were particularly drastic, they didn’t help improve Oli’s already negative frame of mind.  Big bro was there thoroughout the morning and after a while deemed it necessary to give younger brother Oliver (because you always get called by your full name when you’re about to get told off) a bit of a talking to about taking a fresh perspective on things and seeing that things may not be as bad as all that.  Big bro is a muchly big legend and after leaving Oli to think things through, Oli had the biggest turnaround I think I’ve ever seen.

I have to admit I haven’t seen Oli now for two days as I have a very important Uni’ interview next week that needs a lot of prepping for.  It hasn’t been much fun not seeing him,  especially when I know he has been having a difficult time, however now I know that this afternoon he has been chatting, laughing, exercising, and more  I couldn’t be happier.

I have proof of happiness, too.  At some point this afternoon my phone rang with Oli’s number showing.  My immediate thought was along the lines of “who could be ringing me from Oli’s phone?”, who else but the man himself!!!  Yay!  I couldn’t believe he felt well enough to even look at his phone, let alone call.  What’s more, we had a good few minutes chat, mostly from his end as I couldn’t stop repeating “I can’t believe you”re calling!”.  This evening more happy surprises came through as Oli sent me some text messages, and because he managed to link a few together to make another conversation put me back on cloud nine!

This really represents a massive breakthrough for Oli’s mental state, he’s had such a bad time over the past few days, being stuck under a big black cloud and taking the big black dog for a walk.  It’s so great to hear from him and know that he really feels happier and is able to look positively at his achievements and see what’s ahead in a positive light.

We’re on such a journey together, all of us, and we’re going to come across many ups and downs.  It’s so important to treasure the good as it’s often what can help you get through the bad.  It’s also really important to have a big brother to give you a kick up the pants every now and then! 

Oli’s progressing steadily now.  Physically it seems like everyday another tube/drain/wire is removed (I strangely now have an image of ker-plunk! – forgive me, I am very tired).  Even his catheter has been removed today, which although meant a big ouch, also means that the team are happy with his fluid outout and also means that he will have to physically exert himself a little everytime he needs to pee (sorry, too much information).

Mentally, he is taking things hard.  A lot of it due to the remaining tubes still pumping in various drug cocktails.  Anxiety is a big issue right now but the nurses are fantastic with him and have clearly seen all of this behaviour many times before.  Alongside the anxiety are confusion and disorientation, both of these add to the anxiety.

It is still very important to remember that it is early days, as I am writing this, Oli was just about to head into theatre this time last week.  Oli is progressing very well and hitting all targets that the team look for and is certainly not taking any steps back.  Physically, Oli is nigh on exactly where he ‘should be’ (a term used very loosely as recovery is a very individual thing and can’t really be generalised).  However, he is still very scared that something might go wrong. 

The support you have all given Oli so far has been phenomenal.  Please don’t stop your prayers and good wishes for Oli as he needs them just as much now as he did a week ago. 

Please also remember the donor’s family as I can imagine they are still very much mourning the loss of a loved one in the time when a lot of people are in high spirits for the approaching Christmas. I’m sure they’re not feeling too Christmassy right now and could do with lots of love heading their way.

Lots of love from me x

Not much more news again tonight.  Oli is good, his brain and the lungs have definitely begun talking more as his CO2 levels are brilliant and if he continues to breathe deeply then he may only need two more nights on neve, hooray!

The central line in his neck which takes the antibiotics into his system packed up this eve, just as he was calming down for the day.  After one numpty doctor and three numpty failed attempts to re-site the line in his arm, a clever nurse remembered his portacath (after some gentle prompting from Oli’s Mum) and the line was sited in one attempt.

We left Oli trying to get over the stress by chilling with his Dad.  Now he has no annoying lines in his neck, I hope he sleeps better, we’ll see.

***Now we’ve reached a kind of plateau where progress is good and steady, I might not update each evening unless there is something I think you’d like to know.  So from now on no news is good news and written news is super news x***

Hi guys, gonna be a short one today as am really tired this eve and my brain is just about to close down for the day.

Oli is good.  All his levels are good, CO2 is a bit high but neve is doing good stuff at keeping levels in check.

It seems like it’s going to take a couple of weeks for brain to make friends with the new lungs, a few messages are getting through from brain to lungs and vice versa but they’re not really best buddies yet.  We’ve been reliably informed that a couple of weeks will make them firm friends.

Oli’s very tired, drugs and lack of sleep are making an already tough job even tougher – however, as we’ve already seen, he is a super trooper and is toughing it out.  I think he may see the steady progress as a bit of a backwards step which it most certainly isn’t.  I know that not being ‘with it’ is frustrating Oli but we are happy in that these are the early days when Oli is so full of these drugs which make him woozy and play with his mind that actually, when he is up and running, Oli probably won’t remember anyway.

Night night everyone, sleep tight x