This is the 3rd attempt at this post... the first time it published of it's own accord with me having only typed my pointers before getting too sleepy to continue... then when I went back to it it had disappeared. I made a start on the actual post, got a couple of paragraphs in, saved then when I went back to it it had reverted back to the one that had disappeared... so I decided to delete it entirely and start over... hopefully this time I will get all the way through the post and it will appear as intended! So here goes... 3rd time lucky!
Friday afternoon I spent getting used to the new general ward. There was a lot less nurse contact and much more too-ing and fro-ing. It was a 6 bedded ward, but until Saturday (or maybe Sunday) we weren't at full occupancy. Friday afternoon I got visited by my dad, brother and his girlfriend, which was nice apart from me being told off like I was a little girl again by my dad because I wasn't eating right. I was starting to feel a little ropey (which turned into 3 days of feeling awful) and didn't particularly feel like eating a cooked dinner, but I was constantly being watched by 4 sets of eyes and being harassed every time I put my fork down to 'keep eating and stop talking' (very reminiscent of when I was a kid and that's how EVERY meal time went without fail!) This stirred up the old stubborn side in me and made me even less inclined to try eating. This was annoying on 2 counts, as the food was actually something quite nice, I just didn't feel up to eating it... but also it seemed every time I did pick up my fork (not knife or spoon, just fork) it set the heart rate monitors into alarm mode so I'd get a nurse come running in to check I wasn't fitting! I resorted to ditching the fork and attempting to eat with the spoon... until I just plain gave up! I talked to Glen later that night about just how much Dad's attitude had upset me, stirring up all the childhood crap revolving around food which I've tried so hard to work past over recent years. He understood and just generally made me feel better about where I am with food now and to just try as much as I can. He knows how to get my brain back into the right frame!
As mentioned, Friday was the start of me feeling pretty ropey. This lasted really until the Monday. I started off a bit heady, dizzy and nauseous... but this ended up including fever feelings, slight hallucinations and generally all I wanted to do was curl up and die! I had visitors over the weekend but could barely speak to them as opening my mouth or eyes was causing me to feel worse. I must have made great company that weekend! I then felt guilty and bad that they'd come to see me curled up in a ball not interacting at all. The Drs were loathed to put me on fluids (never did get to the bottom of why) despite me, my family, the nurses and the ward sister practically begging them to put me on a drip. They said I could physically drink so I should be! Helpful when anything going in my mouth was making me practically throw up... but I was stopping myself because I knew it would severely hurt my chest to heave! I was brought in a fan in an attempt to control the hot/cold flushes (I think the ward sister was feeling very guilty about not being able to get me some fluids and was trying to do anything to make me feel a little better!) and the dietitian came to see me and we agreed that I could do some bolus peg feeds while I wasn't eating by mouth... I only actually did a couple of these over that week (rather than the couple a day they wanted me to!) but it was the start of getting something into my tummy. I don't know what caused that bad few days, it could have been a bit of a bug caught from someone, or it could have been from the medication... or just anything else really... either way by Monday I was also feeling very 'chokey' and was struggling to breathe clearly. I was being told that I had to come off the oxygen tubing, but the way that I'd been feeling over the weekend- quite gaspy in addition to all the other stuff- I refused to come off it as I felt like it was just going to cause my body more problems. The consultant kept telling me I would be ok without it, but I still refused! It was decided that because I wasn't coughing anything up, was very rattly in the chest and generally felt chesty they would do a bronchoscopy on the Monday or Tuesday to have a look into my lungs and hopefully clear any muck that was lurking down there. This thought scared me... but I'm jumping ahead too many days!
Saturday morning I was finally offered a bath. This was exciting, but also a little worrying. My chest had been fully cut open, and I was a little panicked at the thought of getting my chest wet... paranoid maybe, but I worried that getting the wounds wet might make them split open or something daft. The nurses assured me that it would be fine! So I got my stuff sorted- including the long debated pjs from the previous Saturday after I got 'the call' and toddled off very slowly to the bathroom. I had too get over my independant and proud thoughts and actually let the nurse help me undress and wash in the bath- this was horrid but a necessity. Anyhoo, once the bath was run and I was ready, I sat on the little flying chair. It was a strange and kinda fun device which lifted you up off the floor, about 3 feet straight up, then over the side of the bath and then down into the water. I had my bath and finally got my hair washed (divine after over a week!) it then was time to start 'flying' back out the bath... the nurse started to raise me up.... and shudder, shudder... stop. I was about 2 foot above the bath water, dripping wet and the chair had got stuck. The nurse threw a towel over me, kept bashing at the buttons but nothing happened. Several more towels were thrown over me before she rushed off for help. About 5 minutes later and 2 nurses and the chair was finally moving. I got dressed and eventually got back to my bed. My 'nannies' were starting to wonder where I'd gone as I'd been gone for so long! After this adventure, I was pretty tired and had to have a rest!
The strange thing having spent most of the previous week laying down is that my body had got used to not moving much. Although my chest was feeling better than pre-transplant the struggle with moving around was a) pain, but mostly the muscles had started to waste away. The effort to move was part mind of matter, although I also had to take things easy and not try to do too much too soon. At one point I realised my fan had been switched off at the wall, so I bent down to switch it back on... all ok...until I tried to stand up again, and I could not get my legs to straighten or support me. I was physically stuck in a crouched position behind my bed! Not for the first time, I had to mentally shout at my legs to start working and do what I wanted them to: "C'mon legs, you know what to do, you've done it before! Don't make me call for a nurse to help!" Eventually I managed to claw my way up the wall and practically fall into bed. I then got told off by me 'nannies' for trying to do things for myself and I should have asked. The thing was, I wasn't intentionally being stubborn, I just honestly didn't think bending down and getting up would be such an issue!! From this point on, the physio sessions I made more of an effort to try to tailor what we did to getting my legs supporting me easier.
So the Monday afternoon I was taken down for a bronch. I was really scared about the concept of it as I knew it wasn't a full anaesthetic. Memories of waking during my peg operation and feeling everything in my throat really freaked me out and I was dreading this happening again during the bronch. Before they took me down I kept insisting they give me as much sedation as possible, I wanted to be aware of nothing at all. They assured me and said they'd see me down there. One of the lower doctors warned me about the consultant's taste in music, and told me that if I didn't like All Saints to make it very clear or I'd have their album on throughout the procedure! Mum was allowed to come into the procedure room with me until they were ready to put me out as they could see how scared I was. There were 2 lovely lady technicians who were trying to chat and calm me down- we had a browse through the CD collections and decided on some Nickelback (best available!) then the consultant arrived and it was time to start the sedation. Mum was asked to leave and things got a bit drowsy then... I don't remember much else after seeing the consultant at the bedside (they took my glasses so I couldn't see even if I was awake enough!) although the music got changed while I was still part with it, and I apparently told the consultant that his choice of music sucked! I came round a couple of hours later back in the ward with mum next to me. We were told that things were looking quite infected and very 'gunky' down there, but everything was healing well and looking as good as it could. Once I'd worked off the sedation and started to feel more with it, I started to notice the chesty feeling was already better. I did cough (ouch!) up several chunks of yucky stuff (sorry!) over that evening, but the gaspy feeling (and the other horrid stuff from the weekend) was improving.
From being on a shared ward with people coming and going all day and night, it was incredibly difficult to get any proper sleep. Even at night once all the lights went down and things got quiet there was still lots of beeping, shuffling, bangs and general disturbances. I don't sleep very well in hospital at the best of times, but given the pain and difficulty in getting comfortable for any length of time, I was finding getting any real sleep near on impossible. I'd sleep for short spells, then be awake for hours. Numerous nights running I was still awake and playing on my phone until 3am. The nurses would come in to check and ask if everything was ok, if I could have it, then I'd have some stronger painkiller in order to get another hour or so of sleep, but generally I'd just sit up in the dark resenting all the sleeping ladies around me. I would normally finally get off into a proper sleep around 4-4.30am... just in time for the morning rounds to start anytime from around 5am...joy! After many nights of this, I did have a very weird experience of waking one night to having all the curtains pulled in the ward (our end never pulled them in the first week as we preferred being open and able to chat as soon as we woke up!) I opened my eyes (without my glasses on so everything was blurry) to be surrounded by blue curtains. Without glasses, and sleepy eyed it felt very much like I was in a tent. I could hear really strange noises and nothing seemed to make sense to me. In my waking state my first thought, and absolute feeling, was that I was in the middle of a battle and in a field hospital recovering from some war wound!! I was very disorientated and confused by why I was in a battle and in the field hospital as I couldn't see that I was obviously injured. I scrabbled to find my eyes and after a few minutes an orderly came in to do my weight and blood pressure... things started to sink back into place as to what was the real world... for those five minutes or so, I was quite scared and confused. I can understand how it must feel to be in the beginning stages of Alzheimer.
During my time on the general ward, we had 2 people temporarily placed in the room who had got their call and was waiting for the all important 'we're going to surgery' moment. One girl (probably mid 20s) was sat in with us for several hours. She was on oxygen and looked very frail. From listening to her story, she had been called about 4 times int he past month, all to make the several hour drive to Pappy, sit in the hospital for hours only to be told it wasn't for her. She looked very tired, both physically and mentally, but still had a smile on her face, even when the co-ordinator came in to tell her that again, it wasn't right for her. After this, I had a lot of explaining to my 'nannies' about the whole process, how mine differed and why she had been sent home etc. This made them a lot more aware about the process. When Daphne's family came in later on, they were told about the girl and so I got more questions about the process... I like to think I educated as best I could and made them more aware of organ donation and being on the register etc... so much so, Daphne's daughter told me the following day that she'd gone home and registered as a donor :)
The second lady that came in during my stay was a foreign lady- far eastern- who didn't speak much English. Paul was her co-ordinator and I woke up one morning to hear him right next to my bed (the other side of those lovely blue curtains but still only a couple of feet from me!) Once I'd woken to the stage of moving around, I got up and opened my curtains had a brief chat with Paul then tried (with Daphne) to communicate with the girl. It came down to charades about which organs I'd had done and she was having. We were also trying to calm her down and generally have some form of talk to pass time, but it was hard. After about half hour Paul came back, told her to get gowned up as it was all a go! She got her new heart that day. From seeing Paul a few days later she was doing well in ICU.
During my week on the general ward I had my 28th Birthday. Not how I imagined spending my birthday, but ultimately, my new shineys were an awesome present. The Tuesday was also the first day that I was starting to feel 'normal' after my horrid weekend and bronch, so I could eat and hold conversations and move around etc without fear of being sick or collapsing etc. Both my mum and dad came up during the day, then Glen joined me in the evening. All the staff that came to see me throughout the day wished me a happy birthday, and I received lots of cards. I had no birthday cake (or pancakes as it was shrove Tuesday too) but I had new shineys and could breathe so I couldn't complain too much! As I was feeling the most human I had done for over a week when Glen left that evening I decided to take a walk with him part way out to the car... ok I didn't get far- just to the end of the ward- but it was quite a trip as I had to walk back on my own!
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| The end of the ward after my first proper walk |
During my birthday week, there were also another 2 transplant patients who had a birthday so the transplant team decided to throw us all a joint party. So on the Thursday afternoon, we all had our treatments sorted and then the day room was decorated with balloons and cakes arrived!! All levels off staff from nurses, physios, dietitians all the way up to the lead consultants and surgeons made an appreance. We got sang to, and then had to cut (and eat) the cake. There was a lot of general mingling and chatting. Lots of congratulating and comparing of wounds, and experiences etc. A very lovely hour or so which made me feel like part of a family. This was spoilt by the physio team mooching round, rounding up all the patients (and any family members) and carting us in convoy down to the gym for a long exercise session! They say it was to burn off the cake we'd all just munched, but I think they were just being mean! It started with a 10 minute warm up (which resulted in no coughing and SATs of 98% which amazed me!) then I moved onto doing about 5 minutes on the bike, which as I was holding a conversation throughout showed the physio I could be worked harder (next time!) the hardest part for me was getting my legs to stand again afterwards!! We then had a 10 minute cool down and then the convoy was taken back up to the ward. This was the first of 2 gym trips I had during my stay. The second one didn't follow lots of cake which I DID complain about! It again started with a 10 minute warm up, but this time I did 5 minutes on the bike and several minutes on the stupidly high treadmill, practically needed a step ladder just to get on it! Then we had the 10 minute cool down again... my legs behaved a bit better but again, NO coughing or breathlessness and my SATs remained a very healthy 97+
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| A collection of piccies Glen took of the party: including the lovely spread of cakes, us blowing out the candles and cutting the cake, then general mingling of staff. |
After my party and gym session it was back to chilling as normal in the shared bay, I was still severely lacking in the sleep department, and by the Friday evening I was obviously looking pretty damn ropey as one of the cardio doctors (who I had got chatting to in the step down ward on my first night out of ICU) had come in to see one of his patients, but then come over to chat with me (mostly because I'd told him off the previous time he'd been in and 'ignored me'!) We were talking in general about how much better I was doing (last time he'd seen me was amid the drain saga!) and I commented on the fact that things would be so much better if I was able to sleep etc... he paused, queried the availability of side rooms (I had the ward sister doing something to me at the time) she said that 2 rooms were free, but needed cleaning after people had left... he then disappeared from the ward with a sly grin and 'I'll get it sorted' A while later he stuck his head in the ward door, smiled and said 'All done' then left grinning. about half hour later, a nurse and the ward sister came in, told me to load everything onto the bed or wheeley table as I was moving to the side room! Next thing I knew, off I went to the room outside the shared ward, it even had it's only toilet!! No more traipsing down the corridor for a wee! That first night, I had my lights out when I wanted and had such a peaceful night, I was actually smiling when they came in in the morning as I'd finally slept (almost) properly!
On the Friday ward rounds, the consultant had pretty much demanded that I get out the ward over the weekend (especially as it was due to warm up slightly and be bright/sunny). He started off by asking if I had visitors planned and if so, maybe a walk to the lake would be nice, then in the next breathe he demanded that I get whoever to take me out for a Sunday lunch somewhere 'get out the hospital grounds and get a good lunch inside you'... what can I say, but I had to obey my doctor's orders!! On the Saturday Glen came up and he wheeled me outside to the pond. As soon as we were in eyesight of the lake, I hopped out the chair and was ready to start walking. He followed along behind me in case I needed to sit urgently, but I did a whole lap of the lake before needing to sit down. I wandered over to a bench where we enjoyed a snack (it was sunny, it had to be an ice-cream even though it was still quite chilly!) Snack over, and starting to get chilled, it was back in the chair to be wheeled back up to the ward. Getting fresh air and seeing the outside world properly was lovely, and really lifted my spirits.
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| On my 1st walk outside. |
The following day, my best friend Zoe and her partner Stuart came up to see me. The visit started with my birthday presents which was cool... Always nice to be greeted with hugs (gentle!) and presents!! Once I 'd got the ok from the nurses, we headed out into the big wide world. Stuart did an ok job of 'driving' my chair down to the car, although I think he still needs practice at turning! Once down at the car, I had the fun game of trying to figure out how to get in, be safely strapped in without the belt touching anywhere that hurt (all my chest!) then when we arrived at the pub I had to figure out how to get out the car... those maneuvers were challenging, but the call of a pub sunday lunch was enough!! We had a really nice couple of hours sat chatting and eating, I felt like a 'normal' person as there were no signs of me being different in any way. It was lovely until it got to be time to head back to the hospital. But all good things have to come to an end I suppose.
And so it was then Monday, and with the consultant saying that he couldn't see a reason why I would need to be in any longer than the end of the week, the next few days was all about prepping me for home. I had my medicine lessons, my serious talks about all things post tx- including rejection and infection and other possible complications etc. I had many visits from the pharmacists to prepare my take home drugs. Come Thursday it was Home Day!! I got packed up in the morning and told I could stay in my room until Glen arrived after work... but by about 2pm a nurse came in and said they needed the room earlier so I had to go and wait in the day room with all my stuff shoved in the nurses office. I went round to the step down ward to visit Daphne who had now had her operation and was recovering there. I took her a bar of choccie as I knew she was struggling to eat, but loved all things chocolate. Her face lit up and she genuinely looked happy to have a bar of Dairy Milk!! Glen arrived around 3pm and it was time to head home!! It felt very surreal heading home without oxygen etc but also lovely at the same time!
