Saturday, 19 April 2014

Recovery continues.... Transplant story pt 3

So my new 'home' Wednesday through to Friday was in a step down type of ward. It wasn't quite as full on as ICU, but it had more closer care than the general ward. There was generally 1 nurse for 2 patients here, rather than 1 on 1 in ICU. My first day in there felt quite strange as there were windows overlooking the lake so I had my first glimpse of the outside world again, and I could tell what time of day it was!

I started to learn the new hospital routine for timings of meals and how the staff shifts worked. Although to start with it doesn't feel like much, every shift change and meal time is something to mark the passage of time passing... when you're still on a lot of medication and pain relief it is hard to hold on to a normal sense of time, so seeing a new meal trolley be wheeled in, or the sun setting outside you can almost figure out whether you're coming or going.... ALMOST!

I still had my lovely magical morphine button, which I could press for a dose of morphine every 10 minutes... I think on the Thursday they increased this time to every 15 minutes as it would appear that while I was awake I was getting a little trigger happy with it... They told me initially not to be too scared to use it, and press whenever I felt I needed it... so I do and they increase the time! Pft!!

Wednesday evening I dozed quite a bit, and I think I was properly settled for sleep by about 8pm... it wasn't long after the evening tea trolley round by any means. By the time the night staff were settled in their spots I was well away, just waaking for brief spells to press my morphine button or have a sip of water. I did get some proper sleep that night, despite being woken early by the start of the day routine... sometime between 5 and 6am.

On the Thursday I had a mass visiting.. firstly I got a lovely surprise visit from a fellow CF post transplant friend. This was a little odd as we had previously only talked online due to infection risks... now we're both post transplant the infection risks aren't as high so we could actually meet! I was also still quite a little 'woo' due to the medication so I probably didn't make too much sense to her! But it was lovely to come face to face with her for the first time, and finally put a face to the name! Later in the day I got mass family visit- my brother and his girlfriend had come down from Scotland to see me, my dad brought them, and then Glen and mum came too... kind of thwarted the 'only 2 visitors at a time' rule but meh... the nurses didn't say too much. It was a bit strange as my brother hates anything remotely medical so it was obvious he was uncomfortable seeing me with all the wires and tubes etc. This was made worse by the fact that the doctors decided it was the right time to try removing a couple of the drains. At the merest mention they were going to do something he was out the room like a shot. Everyone but mum left me (I wanted someone in with me) out came the gas & air (lovely stuff) and first off they removed my neck line and replaced it with a long line in my arm - that was what I mostly wanted the company for as I'd had a LOT of bad experiences with placing long lines before I had my port- after they did that (very gently and almost pain free... well done Will!) it was time for the 2 remaining drains to come out (the other 4 had gone sometime before then, but I don't remember when!) The right side came out ok, but the left one was a nightmare. This was the one that had been leaky throughout the week, and also uncomfortable most of the time. It took more than the others to actually get it out (gas & air didn't really mask it any where near enough!) but as soon as it was out things took a bit of a turn...

The doctor suddenly looked a bit panicked and got the nurse to quickly put pressure on my side. She stepped in a pressed down on the area while he just did a runner, having mentioned something about finding a surgeon. The nurse stood putting pressure on my side but not really saying much about what was happening. I started crying and using the gas & air more to try to calm down, then I was told that it probably wasn't such  good idea to be using it so much so they turned it off... Mum was trying her best to stay calm, and calm me down, but wasn't really successful on either front. After a little while (and another nurse and the doctor coming back) I was strapped up very tightly with thick bandages and it was explained that there was an air leak around the drain site and they were waiting for the on-call surgeon to come and have a look to see if a few extra stitches would be enough, or if I'd need to go into surgery to fix it. Things calmed down a little, although I was terrified to move (or really breathe) and once all the paraphernalia had been cleared away the rest of my family were allowed back in and it could be explained what had happened as I clearly looked a lot more shaken and upset than when they left me. I got a visit from Paul (tx co-ordinator) around that time- not sure if it was coincidence or someone had told him to come see me- he made light of the situation and was joking with me that if I didn't start to move and breathe like normal he'd come and tickle me... I gave him quite a strongly worded threat that if he came near me to tickle then he would regret it (I can't remember my exact threat but it wasn't the most friendly as my dad told off later for being rude to Paul!) Paul took it on the chin and just said at least that would require me to move! He left me with a warning that next time he saw me he hoped I'd moved or there would be trouble. After that we all calmed down somewhat. After a while the surgeon came and had a look and it was decided that extra stitches was all that was needed and to just see how things went over the next 24 hours with it- if it continued to weep then it might need more doing to it. Fortunately, once the extra stitches had gone in that was the end of the drain site saga!

That night I was very tired and emotionally drained after the day's events but for some reason didn't sleep as well. I didn't get off to sleep until a LOT later and then kept being woken by one of the other ladies in the ward. She had major issues (I think due to the medication she was on) and kept hallucinating and trying to 'escape' her bed, then lashing out at the male nurse who was trying to help me... the female nurses couldn't handle her as she was quite a large lady. After a rather broken night's sleep it got to Friday and it was decided that I was now ready to be moved to the general ward. They were in the process of deep cleaning a bay ready to open up, so I just had to wait and see if it was going to happen today, or the day following. After the night I'd just had, I was hopeful to get moved!!

As luck would have it, just before lunch I got told the new bay was ready and I was to be moved after lunch... the next thing I know, my stuff is getting put on my wheeley table, and I'm told they're moving me before lunch so did I want to walk or got by wheelchair. As I didn't know where I was going (how far I'd have to walk) I opted for the chair. Glen arrived moments before I was moved so was able to help grab the cards behind my bed and any other bits not thrown on my wheeley table and off we went. I was the first person in the ward so I had the pick of the beds... one bed had already been ear-marked so I picked one in the opposite corner as it had a shelf above it and I figured that made sense to display my cards! Also being in the corner I could keep myself away from people as much as possible in a shared ward! I know that sounds anti-social, but being a CFer I'm used to being in single rooms due to infection control, so sharing a bay was very alien to me and knowing that generally everyone was a LOT older than me, I knew that I wouldn't do well with being stuck with 'old people sleeping noises'!

After a while a lady from my previous room got wheeled in and took the bed next to me as we 'knew' each other- we'd shared a fan the previous evening. This was my first surrogate nanny- Pauline. By the time it got to dinner the room had 4 occupants- me, Pauline, Jean (also from my previous room) and Daphne (surrogate nanny no.2) As it turns out, Daphne & Pauline, despite both being in their 80's, were a real laugh and certainly brightened my time in that bay. We all got on really well and looked out for each other, helping out with things if one of us needed it....

Friday, 11 April 2014

And I was in surgery....transplant story pt 2

Today, as I'm writing this, I am exactly 5 weeks post transplant. I am going to try to go through the past few weeks as best I can... although I will be relying on Glen and mum to fill in a lot of the blanks from the early days as I was on a LOT of drugs and don't remember much from the 1st week! So here goes....

Now, from my POV, as I left the room in the wheelchair, there were no tears... things were rather different the moment I was out of view. At this point, my mum collapsed into a pile of tears and Glen was left standing dealing with his own emotions as well as a quivering wreck of mum! (Dad hadn't quite reached the ward yet so it was just mum and Glen) I believe she had just got herself back together when a nurse stuck her head in and asked if they were ok, which set her off again! Poor mummy!

The operation

This was quite an epic op, even by transplant terms. It lasted approximately 10 hours from when I went under to being brought out into recovery. Normally with a double lung transplant, they take one lung out at a time and the body relies on one existing lung while they replace it with a new shiny one, then switch them over... however my poor little lungs were too weak to work singularly, so they ended up having to put me on full bypass and remove/replace both at the same time... ultimately making it harder and more risky. (Bypass was the old way of doing lung transplants, but in recent times, they have started doing it one at a time so it just made the surgeon revisit his old school days!)
Once inside and trying to remove one of my lungs, it was found that one was severely fibrosed (stuck) to the chest wall itself, making it a lot harder to remove. In trying to remove it, it led to a lot of bleeding, ultimately meaning that a blood transfusion was necessary. I lost a lot of my own blood, and I believe ended up needing about 6 pints given to me, which is about 2/3s of what is in the body normally... There was an issue with the blood given, it wasn't quite the right blood group (I'm a little hazy on this point so forgive me if it doesn't make sense!) so they gave me the best match they had available, but it meant that I had to have some kind of injection afterwards to deal with the difference... it also means that there's something that needs to be thought about more IF I was to get pregnant (once I was awake and they explained this to me, in my drugged up, groggy state I pointedly told them it wouldn't be an issue unless I could give birth to puppies as that's all I'm interested in!)
I think (assume) everything else went well with the surgery... It isn't really something that I've questioned too much really. It happened, I don't need to know all the details! Maybe along the line it's something I'll question a bit more, who knows?!


So after the op I was brought out into recovery. I was on a full ventilator and hooked up to so many machines and wires etc I must have looked pretty scary. My family were obviously glad to see me after the op, but it must have been hard for them to see me like it. Glen wasn't allowed to take a pic at this stage as I hadn't given permission beforehand, but I'd have been interested to see just how many things I had attached to me at that point! I'm weird I know! I obviously had brought my Fluffy bear with me to the hospital, and at this point mum asked/stated that I needed my bear with me for when I woke up, so could he be left with me. The nurses weren't phased by this and made sure that he was always tucked securely under my arm at all points during my time in ICU. Even when they were moving me around to wash me etc, they lovingly kept him safe them put him back in place in my arms!! Aww. One of the nurses even told me this proudly once I was awake!
I was kept under full sedation the rest of Sunday and then I think they started bringing me round once I could manage off the ventilator by myself. This was sometime on Monday. Mum and Dad were both there with me but I got quite agitated that Glen wasn't. I couldn't speak - both because my throat was pretty wrecked from the ventilator tubes and also because I couldn't get my brain and mouth to link up and perform the job of speaking! I could make noises to start with and used my arm to try to spell out in the air Glen's name, but ultimately, Mum & Dad sucked at trying to figure out what I was trying to say. In my head I was screaming Glen's name and getting really upset, but I couldn't get what I wanted to across. Eventually Mum twigged and realised I wanted Glen called.
At some point on Monday, 2 of my CF nurses popped in to see how I was doing after my old clinic had finished which was lovely. I don't remember a lot of what was said, but the kind thoughts of the CF  team were passed on and appreciated. I think I was tried on ice chips, then small sips of water that afternoon and I believe a yogurt that evening.
Time kind of merges into one long blur in ICU as I don't recall there being any windows or sources of outside light, so it was difficult to judge what time of day it was. I know I tried some jelly and ice cream. The ice cream had a lovely flavour but I felt sick. At breakfast time I tried some porridge, but the housekeeper had been aware that dairy was seeming to make me feel sick so she made it with a mix of water and soya milk... I actually managed to eat something!
I'm not sure why my eyes are shut?
 By the Tuesday I was wearing my glasses and able to see everyone that was coming to see me! It's quite novel being able to see who you're talking to! They all seemed to know me really well and for the most part I didn't have a clue who any of them were! I saw one of the transplant consultants who explained everything had gone well and I was looking well, but they wanted me to start moving a bit so they were going to bring in the physios to try to get me to stand... less than 48 hours after my op and they wanted me out of bed?!! So sometime later a pair of physios arrived to discuss how things were going to proceed, they took up positions and told me what to move, when and how. One was on the duty of moving all the tubes, wires and drains out the way of my very weird moving body (it felt like I wasn't really in control of any of it) while the other fully supported me as I moved. So I was perched on the side of the bed, my legs dangling, sitting upright- this felt more than enough for me, but the physios weren't done. They taught me the technique that would hold me in good stead through the first week of recovery... the '1,2,3 rocking motion' to get momentum going before trying to stand. I was very nervous about standing, I didn't feel like my legs could work, let alone would they! After several minutes of me trying to convince them it was too soon, they won (obviously!) and we started rocking ... and I was stood up! They still weren't done and requested that I try to step on the spot... I'm not sure how many steps I managed, but I did a few... then was practically falling back down as I was SO tired. Now they were finished with me for the day! They got me back into bed safely and left me with the promise that 'tomorrow we'll have you walking'! WHAT?!!

Wednesday morning came, I had some more porridge-y stuff which went down a lot easier. I saw Debs the consultant again who said that it looked likely I would be moved out of ICU today, they were just sorting out a bed in the transition ward (step between ICU 1 on 1 care, and the general open ward) She also told me something incredibly interesting (and amazing!) that despite getting my call on the Saturday night, come Sunday night another set of lungs had come up as an exact match for me, and someone had been trying to contact me until someone else told them I was already in ICU after the surgery... 2 sets of perfect lungs in 24 hours! OMG! What the chances of that happening are I have no idea, but had i been able to at that point in time, I probably should have bought a lottery ticket as it was definitely my few days! Someone was smiling down on me that weekend that's for sure! The phsyios returned, complete with a porter guy and wheelchair. Plan for today was to stand up and go for a walk around the unit with a wheelchair behind me in case I needed it- of course I'd need it!! As it was approaching the time for me to be transferred to the other ward they half planned on me walking round there myself! As it happened, the paperwork wasn't ready so I had to stay in ICU for my walk... but I did walk the entire corridor to the other ward entrance. this surprised everyone, especially Glen and I. Along the walk I passed the surgeon that did my op and he was pleasantly surprised to see me so far from my bed (I didn't know who he was at this point and had to ask Glen after!) I also passed Debs again who joked that I was breaking out... she was starting to know my dislike of being in hospital already!

It was after my 'little' walk with the physio's that it struck me how easy it was to breathe... it hadn't really hit me until then, as all I'd been doing nothing but laying down. When I got back to the bed (before he was thrown out for my drain to be re-dressed) Glen asked if I noticed anything.... I looked around me and was a bit puzzled, "You're not coughing, or out of breathe!" and he was right. I'd just walked up and down the corridor and hadn't coughed once. Other than being uncomfortable I felt fine... sign of good things to come :)

 On the way back to my bed, one of my drain sites started to leak...well it was less of a leak and kind of like a downpour down my side... so before I could be wheeled round to the ward I had to be cleaned and patched up again... Glen got thrown out the bay with no explanation so he was left standing in the corridor holding Fluffy looking a little lost! Bless! Clean and tidy, I was put in the wheelchair and taken round to my new 'home' for the next few days.