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....
Saturday, 19 April 2014
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?!
Recovery
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!
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.
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?!
Recovery
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!
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? |
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.
Friday, 21 March 2014
17 days and it happened!! Transplant story pt1
22nd of February 2014, 11.55pm home phone rings. I'm literally climbing into bed so Glen picks up the phone in a huff. (gruff voice) 'Hello...... uh, yea I'll just get her'... And my life is forever changed!
The moment the phone started ringing, I knew what was happening. It was MY call. Glen came into the bedroom, meeting me in the doorway, passed me the phone and said it's 'Paul, the transplant co-ordinator from Papworth'. Me "I know". Now, I didn't know exactly it was Paul (at this point I didn't even know Paul) but I knew it was the tx team. (I have to say now, a LOT has happened, I've had a LOT of drugs and my memory is shoddy at the best of times, so if I get things in the wrong order or slightly different to how it really happened I'm sorry, I'm trying to piece it all together in my head still)
Paul " Hi Karen, this is Paul from the transplant team. I don't think we've met yet, but we soon will. We think we have some lungs for you. We're organising an ambulance car to come out to you, it should be with you within an hour so you don't need to panic. I suggest you pack some overnight things and your tablets and get whoever you want to ride in the car with you ready.... (stunned silence from me)... it's ok to be scared, go on, have a swear if you want.... how do you feel?"
Me " I'm not much of a swearer... oh my god. I don't know what to think... what should I pack" Meanwhile Glen was floating about the doorway and started mouthing 'should I call your mum?' I nodded and he scooted off to call her from his mobile.
Paul went on to explain that the team was just starting out on their journey to where the donor was to assess the lungs. Initial reports were that they were good and the team were hopeful that this would be a go-er. He told me to keep calm and he'd meet us when the ambulance arrived. If there were any updates between that time he would call me.
I came off the phone and just dropped the F Bomb in Glen's face... it just came out! It didn't make me feel any better but it just slipped out. We hugged for what felt like minutes but was probably only a few seconds. I couldn't stand still. I reasoned I should probably get changed out of my PJs so that was my first job. Glen made it his mission to find me an overnight bag. Those jobs down I knew I needed my tablets sorting and some overnight stuff. The drug cupboard got ransacked and emptied into a baggie then I sat in front of my PJ drawer. I must have sat there for 5-10 minutes just picking up 1 set then another. All of a sudden picking just the right set of pajamas for after the operation seemed the most important thing in the world. I couldn't possibly come out of the operation and wear the wrong set! How warm would I be? Would I want long or short sleeves, cotton or fleecy? I didn't feel suitably advised to make this decision! (Looking back, this was my mind having it's meltdown trying to process the phone call and the situation... and I don't think I picked the right set given all my deliberation!!)
Mum arrived, we hugged. (No-one had cried at this point, which looking back I'm quite surprised!) We discussed whether I should call Dad yet, but we figured it would be best to wait until the ambulance was here as I knew from other people's experiences, you can get a call to say its not going ahead at any time. Seeing as he lives over and hour from me we figured it was best to wait until we were on our way before disturbing him.
I got everything in my bag that I thought I would need, then realised I wanted a picture of Glen and Judy for by my bed for when I woke up. This upset me, as it was something I was going to get done specially. Coming so out the blue I didn't have a picture so we then had to hunt for separate pics for me to take. Luckily I had one of each that got put in my bag.
We then realised that with mum and Glen coming up with me (and the potential of being up there a LONG time) we had an issue with all our dogs. I was in no state to think about things, so mum and Glen figured it all out. Mum went to our next door neighbour (who luckily had only just got home so we didn't have to worry about waking them up) with both our key and her door key. She explained what was happening and said that someone would be round in the morning to get the keys so they could sort out all the dogs. The neighbours were rightfully shocked but happy to help.
Around 1am the ambulance car arrived. Mum and I got in and Glen drove my car so we had means of getting home. The lady was having issues with the sat nav (she was new to this area too so wasn't too sure of where to head) As we went to leave our estate, Glen turned left as you should, but she turned right. a minute later Glen was phoning to find out why we'd gone the other way. I said the sat nav was taking us a different way to the A12, just go the normal way and we'd meet him there. Turns out the sat nav was playing silly buggers so she switched to using her i phone and we went via Chelmsford and Stansted before heading to Papworth! Scenic, but not the time or situation to be enjoying looking at the stars through the sunroof.
I called Dad to let him know. He was pretty damn surprised to have me calling him around 1.30am on a Sunday morning... he asked what I wanted (normally I would have been daft and said just a chat or something) I firstly told him I wasn't drunk and it was something big. I explained and he said he'd get himself sorted to leave, but wouldn't leave until we had arrived at the hospital and knew more.
Around 2.30am mum and I arrived at the hospital and things started to feel real. Glen was only about 5 minutes behind us so I didn't panic too much. We found our way in and was met by a blue scrubbed man (Paul) he knew who I was and guided us up to the ward and into a side room right away. I said Glen was just parking up so would need guiding up, off mum went to find him. Paul explained I would need to have some bloods done, do a urine sample and do a few other little checks. The tx team were with the donor and assessing them. They would know more within the hour.
I had the bloods done and started being prepped by the nurses etc. Around 3.30-4am Paul came back looking pleased. He said the lungs were looking great, and they were now on the way to us at Papworth. It was going ahead! He estimated that I would go down around 5am. I called Dad and told him to get here asap. He estimated he'd arrive around 5am too.
4.30am I gowned up, and did the obligatory thumbs up photo with Glen. I figured I needed to broach the negative scenario and explained a couple of songs I wanted and what I wanted people to wear! That negative side over, we fell into silence.
4.55am having spoken with the anaesthetist and surgeon etc and everything been accepted and signed Paul came in with a wheelchair and said it was time. I hugged mum then Glen. Told them both I loved them and would see them soon (still no tears!) Got in the chair and was wheeled out the room. We went past the nurses station and they all smiled and wished me luck and said they looked forward to seeing me back on the ward after. We went down the corridor and turned into the theatre area. At this point I was more shocked to see it was the same place that I'd had my peg done last year... as we were going through the maze of corridors it was all so familiar because I ended up in the exact same theatre room! I got into the prep room and hopped up onto the bed. A moment or two later Paul came back in and told me my dad had just arrived, did I want to see him. I said I was happy to, but as the team were already attaching wires and all sorts I said it might freak him out too much so probably not (the team looked relieved as I think they wanted to get on and didn't want to wait for a family moment!) he asked if I had a message and all I could think of was 'I'll see you when I wake up' hardly profound, but it was the best I could do! They took my glasses off me, and I don't remember any more!!
The moment the phone started ringing, I knew what was happening. It was MY call. Glen came into the bedroom, meeting me in the doorway, passed me the phone and said it's 'Paul, the transplant co-ordinator from Papworth'. Me "I know". Now, I didn't know exactly it was Paul (at this point I didn't even know Paul) but I knew it was the tx team. (I have to say now, a LOT has happened, I've had a LOT of drugs and my memory is shoddy at the best of times, so if I get things in the wrong order or slightly different to how it really happened I'm sorry, I'm trying to piece it all together in my head still)
Paul " Hi Karen, this is Paul from the transplant team. I don't think we've met yet, but we soon will. We think we have some lungs for you. We're organising an ambulance car to come out to you, it should be with you within an hour so you don't need to panic. I suggest you pack some overnight things and your tablets and get whoever you want to ride in the car with you ready.... (stunned silence from me)... it's ok to be scared, go on, have a swear if you want.... how do you feel?"
Me " I'm not much of a swearer... oh my god. I don't know what to think... what should I pack" Meanwhile Glen was floating about the doorway and started mouthing 'should I call your mum?' I nodded and he scooted off to call her from his mobile.
Paul went on to explain that the team was just starting out on their journey to where the donor was to assess the lungs. Initial reports were that they were good and the team were hopeful that this would be a go-er. He told me to keep calm and he'd meet us when the ambulance arrived. If there were any updates between that time he would call me.
I came off the phone and just dropped the F Bomb in Glen's face... it just came out! It didn't make me feel any better but it just slipped out. We hugged for what felt like minutes but was probably only a few seconds. I couldn't stand still. I reasoned I should probably get changed out of my PJs so that was my first job. Glen made it his mission to find me an overnight bag. Those jobs down I knew I needed my tablets sorting and some overnight stuff. The drug cupboard got ransacked and emptied into a baggie then I sat in front of my PJ drawer. I must have sat there for 5-10 minutes just picking up 1 set then another. All of a sudden picking just the right set of pajamas for after the operation seemed the most important thing in the world. I couldn't possibly come out of the operation and wear the wrong set! How warm would I be? Would I want long or short sleeves, cotton or fleecy? I didn't feel suitably advised to make this decision! (Looking back, this was my mind having it's meltdown trying to process the phone call and the situation... and I don't think I picked the right set given all my deliberation!!)
Mum arrived, we hugged. (No-one had cried at this point, which looking back I'm quite surprised!) We discussed whether I should call Dad yet, but we figured it would be best to wait until the ambulance was here as I knew from other people's experiences, you can get a call to say its not going ahead at any time. Seeing as he lives over and hour from me we figured it was best to wait until we were on our way before disturbing him.
I got everything in my bag that I thought I would need, then realised I wanted a picture of Glen and Judy for by my bed for when I woke up. This upset me, as it was something I was going to get done specially. Coming so out the blue I didn't have a picture so we then had to hunt for separate pics for me to take. Luckily I had one of each that got put in my bag.
We then realised that with mum and Glen coming up with me (and the potential of being up there a LONG time) we had an issue with all our dogs. I was in no state to think about things, so mum and Glen figured it all out. Mum went to our next door neighbour (who luckily had only just got home so we didn't have to worry about waking them up) with both our key and her door key. She explained what was happening and said that someone would be round in the morning to get the keys so they could sort out all the dogs. The neighbours were rightfully shocked but happy to help.
Around 1am the ambulance car arrived. Mum and I got in and Glen drove my car so we had means of getting home. The lady was having issues with the sat nav (she was new to this area too so wasn't too sure of where to head) As we went to leave our estate, Glen turned left as you should, but she turned right. a minute later Glen was phoning to find out why we'd gone the other way. I said the sat nav was taking us a different way to the A12, just go the normal way and we'd meet him there. Turns out the sat nav was playing silly buggers so she switched to using her i phone and we went via Chelmsford and Stansted before heading to Papworth! Scenic, but not the time or situation to be enjoying looking at the stars through the sunroof.
I called Dad to let him know. He was pretty damn surprised to have me calling him around 1.30am on a Sunday morning... he asked what I wanted (normally I would have been daft and said just a chat or something) I firstly told him I wasn't drunk and it was something big. I explained and he said he'd get himself sorted to leave, but wouldn't leave until we had arrived at the hospital and knew more.
Around 2.30am mum and I arrived at the hospital and things started to feel real. Glen was only about 5 minutes behind us so I didn't panic too much. We found our way in and was met by a blue scrubbed man (Paul) he knew who I was and guided us up to the ward and into a side room right away. I said Glen was just parking up so would need guiding up, off mum went to find him. Paul explained I would need to have some bloods done, do a urine sample and do a few other little checks. The tx team were with the donor and assessing them. They would know more within the hour.
I had the bloods done and started being prepped by the nurses etc. Around 3.30-4am Paul came back looking pleased. He said the lungs were looking great, and they were now on the way to us at Papworth. It was going ahead! He estimated that I would go down around 5am. I called Dad and told him to get here asap. He estimated he'd arrive around 5am too.
4.30am I gowned up, and did the obligatory thumbs up photo with Glen. I figured I needed to broach the negative scenario and explained a couple of songs I wanted and what I wanted people to wear! That negative side over, we fell into silence.
Just before I was taken away!
Thursday, 30 January 2014
It's official... let the waiting begin!
So as of last Friday I officially joined the lung transplant list. All the forms and consents have been signed, appropriate discussions with Drs, surgeons and tx nurses and with a few strokes of a pen... that was that!
Didn't seem like a big deal at the time... it was only the following evening (Saturday) having been admitted for a bit of an MOT that it suddenly hit me... they could call me at any time... meaning right there and then while I was sat in the hospital. I then started panicking about it and got into a bit of a tizz and physically had to tell myself off for being stupid and it really wasn't the best thing to do when laying in bed trying to sleep!
I've tried not to think about the reality of it all too much while I've been in... hospital's can be very bad places to do too much thinking... especially when you're on your for long portions of time. This is why it's taken till now to update here as by writing this, I'm confronting the harsh reality of it all. My potentially long wait has now started, on the other hand I kind of need to be ready at any moment's notice to drop my current life and accept a huge upheaval in terms of major surgery. This part doesn't scare me for me... I'm scared for my family having to sit and wait through it all... I'll be asleep! The fun and games then begin in post op recovery... Having closely watched everything that's been going on in the lives of friends who have been through the op recently it gives me great appreciation (and a bit of forewarning) of what to expect... but I don't think you could ever be fully prepared for something like this!
All I know is, once I've got those new bad boys in my chest, we're going to need SOOOO much money just to do all the things I keep thinking of that I want to do!
Didn't seem like a big deal at the time... it was only the following evening (Saturday) having been admitted for a bit of an MOT that it suddenly hit me... they could call me at any time... meaning right there and then while I was sat in the hospital. I then started panicking about it and got into a bit of a tizz and physically had to tell myself off for being stupid and it really wasn't the best thing to do when laying in bed trying to sleep!
I've tried not to think about the reality of it all too much while I've been in... hospital's can be very bad places to do too much thinking... especially when you're on your for long portions of time. This is why it's taken till now to update here as by writing this, I'm confronting the harsh reality of it all. My potentially long wait has now started, on the other hand I kind of need to be ready at any moment's notice to drop my current life and accept a huge upheaval in terms of major surgery. This part doesn't scare me for me... I'm scared for my family having to sit and wait through it all... I'll be asleep! The fun and games then begin in post op recovery... Having closely watched everything that's been going on in the lives of friends who have been through the op recently it gives me great appreciation (and a bit of forewarning) of what to expect... but I don't think you could ever be fully prepared for something like this!
All I know is, once I've got those new bad boys in my chest, we're going to need SOOOO much money just to do all the things I keep thinking of that I want to do!
Saturday, 11 January 2014
Busy busy decision making!
Wow! Firstly a milestone has been passed on my blog... over 1000 page views. I wouldn't have thought that my ramblings could have been than interesting to other people.... but I must be doing something entertaining! Anyhoo... thanks for reading and let's see if I can get to 2000 quicker?!! Teehee!
So the new year is 11 days in, and it doesn't really feel like I have stopped. Back to work has cut down on the home time that extra bank holidays allow, so when I have had days off, I've been cramming things in all over the place.
New Year's eve I started looking at wedding venues online just for something to do sat down. We decided that it was worth going to look at the one that appealed most to us from the pictures, so I emailed a request. That was Tuesday- we viewed it on Saturday and had confirmed it by Saturday night.... then paid deposit by the following Tuesday! We also have the officiant booked so we have a date, time and venue all sorted!
I've done a first run of dress shopping (potentially found 'the one') but put it aside in the shop to give me a couple of days to decide if it is the right one... going back later today with mum for a second trying on session. We've picked the colour scheme, and rough reception theme... provisionally booked cake, photographer and hairdresser (all people we know!) so we've been making decisions left, right and centre... but there's still so much more to do! And all in less than 6 months!! EEEEEEK!!
So the new year is 11 days in, and it doesn't really feel like I have stopped. Back to work has cut down on the home time that extra bank holidays allow, so when I have had days off, I've been cramming things in all over the place.
New Year's eve I started looking at wedding venues online just for something to do sat down. We decided that it was worth going to look at the one that appealed most to us from the pictures, so I emailed a request. That was Tuesday- we viewed it on Saturday and had confirmed it by Saturday night.... then paid deposit by the following Tuesday! We also have the officiant booked so we have a date, time and venue all sorted!
I've done a first run of dress shopping (potentially found 'the one') but put it aside in the shop to give me a couple of days to decide if it is the right one... going back later today with mum for a second trying on session. We've picked the colour scheme, and rough reception theme... provisionally booked cake, photographer and hairdresser (all people we know!) so we've been making decisions left, right and centre... but there's still so much more to do! And all in less than 6 months!! EEEEEEK!!
Friday, 3 January 2014
Holidays, proposals, transplants, a nutcase at 37,000 feet and fraud! (Oh and Christmas is coming!)
Firstly, sorry this has sat as a draft for a few weeks, completely forgotten due to Xmas etc. Bad Karen! Anyhoo... here's what I had written in the middle of December...
What a title?! Fill you with a sense of intrigue?
So firstly, my holiday is now over and I'm cold :( We had a lovely time... Fortunately I was relatively well throughout (which looked a little dubious given the few days running up to leaving I felt like a pile of poo! Especially as on the morning of travel I had a bit of a bleed from my lung.) The humidity hit me a little harder than I'm used to, and it took a day or two to get used to. Luckily I had my little 'BeePee' o2 machine which had different settings so I didn't struggle too much with my sats, although my heart rate was super high for the first few days. What was needed? A LOT of chilling out in the sun with a book... bingo! Food got a little tiresome, although they catered for veggies (and also were happy to arrange individual meals upon request) I got sooo tired of chips and pasta. Twice a day for almost 2 weeks I was on carb overload!
The biggest news for me from holiday is that upon arrival Glen proposed so I'm now the very happy owner of a pretty sparkly ring and have the joy of getting to plan our very special day! Both our mums knew it was happening, but they were still super happy to hear the news.... even if Glen did forget to tell his mum directly! I can't believe my mum was able to keep the secret for so long... I'm surprised she didn't burst! I won't bore you too much about how he did it... but it involved Love Heart sweets!
Also while I was away, I checked in on Facebook just to see what was going on, and found out that a very good friend of mine got the gift of life and received her double lung transplant. After that, I made certain that at least twice a day I found my way to the free wifi area to keep an eye on her progress. When I first read she'd gone down (albeit the day after it happened!) I didn't know what to do... I wanted to cry, and cheer, and tell someone... but I was in a queue waiting to make dinner reservations and had to contain myself until I'd rushed back to find Glen. I'm so happy for her and glad to hear she's getting stronger each day :)
We did a lovely jeep safari trip towards the end of our stay so that we actually saw the island, and I'm so glad we did.... Antigua is a beautiful country with many gorgeous sites and a lot of history that they take so much pride in (even their bad parts of history they're still proud of as it's what made them who they are) We as a nation could learn so much from them! The couple we shared the day with were lovely, and ended up being friends we bumped into regularly round the hotel (and even on the same flight home!). Our guide found out we'd just got engaged and proceeded to serenade us both while driving along a very bumpy track... very awkward- on both counts!!
Our flight home was eventful... and not in a good way! We were mostly all boarded when it became apparent that a man 2 rows in front of us was agitatedly looking for something and went to see the stewardess. About 10 minutes later a member of security escorted his wife to the plane from the airport terminal. She looked like she struggled up the stairs (I thought she might have been ill, scared of heights or disabled etc) eventually she got in and to her seat. The plane took off and we were coming home. A short while into the flight I started to notice that she would shout at her hubby... thinking 'ok, end of holiday blues, domestic!!' Her shouts gradually got louder and more colourful. I then noticed that one of the stewardesses was banging on the toilet door and asking if they needed any help, then heard the woman shout back something which must have been a yes, but she had barricaded herself in so the door wouldn't open. Eventually she came out and was shepherded back to her seat. Things got more interesting when she started throwing things like pillows and jumpers over her head to the people sat behind her (the row in front of us), then she got up and started shouting at them because they complained about her. The husband was warned to get her under control or she would have to be restrained. After more shouting and throwing of stuff, she barged into the galley and helped herself to water (as the staff refused to get her anything while she was throwing stuff) - by this time they'd moved the couple directly behind her and cleared the seats... we were now the closest to her!- For a moment or two I thought her nice big tumbler of water was coming directly for me, but this was hastily forgotten as she made a dash for it down the aisle. All of a sudden there was a shouted 'NOW!' and about 8 members of cabin crew swarmed over her and manhandled her back to her seat and promptly restrained her... several seat belts around her body and chair (and later found out, a pair of handcuffs!) After that I was quite freaked out and got a bit sick so tried to sleep it off, but every time I'd start dropping off she made a stoopid noise. I know she was restrained, but I was a bit jumpy that she'd somehow escape and go on a rampage! I think I can honestly say that that was my first flight where I actually felt scared! Eventually we landed at Gatwick and had to wait for the police to decide what to do with her... arrest her... before we could all get off the plane.
A few days after getting home I checked my bank account online, and found that my current account had been attacked by some Korean fraudsters who had taken several hundred pounds. I called the bank immediately and they were really helpful and got the money returned to me within the hour... only problem was that my card got instantly cancelled and a new one ordered... a week before Christmas! I was set out into the world of Xmas shopping with no personal bank card... luckily I had the house card and my credit card so didn't suffer too badly, but Glen did have to pay for my work meal out as I couldn't get any cash out!
And now it's 2014!! Christmas and New Year have passed and everyone's back to work and depressed about the weather!
My thoughts for this year.... it can't be any worse than last year! Not just for me, but for so many people I know, 2013 was an awful year. I'm so glad to see the back of it! 2014 has promise to be a brilliant year... I'm starting to do some research into our wedding, complete with a trip to look round somewhere this weekend... with wedding, comes a mini-moon (a full on far away honeymoon will likely have to go on hold until my chest is better), I;m likely to be listed for transplant within the next few weeks so you never know, by the end of 2014 I could be puffing away with some shiny new lungs?!! We're having our hallway decorated in a few weeks to make it look soooo much nicer and fresher than it is now. I think it was a big reason that people were put off buying our place last year. If we have time and money then we both want to move... but maybe we should hold off at least one major thing for the time being?!!
Oh and my friend who had her tx before Christmas is doing fantastically... I'm so happy for her and looking forward to hearing about all of her adventures, which sound like they might be starting with going to the gym and big shopping trip!
Now for the picture... what could it be??
What a title?! Fill you with a sense of intrigue?
So firstly, my holiday is now over and I'm cold :( We had a lovely time... Fortunately I was relatively well throughout (which looked a little dubious given the few days running up to leaving I felt like a pile of poo! Especially as on the morning of travel I had a bit of a bleed from my lung.) The humidity hit me a little harder than I'm used to, and it took a day or two to get used to. Luckily I had my little 'BeePee' o2 machine which had different settings so I didn't struggle too much with my sats, although my heart rate was super high for the first few days. What was needed? A LOT of chilling out in the sun with a book... bingo! Food got a little tiresome, although they catered for veggies (and also were happy to arrange individual meals upon request) I got sooo tired of chips and pasta. Twice a day for almost 2 weeks I was on carb overload!
The biggest news for me from holiday is that upon arrival Glen proposed so I'm now the very happy owner of a pretty sparkly ring and have the joy of getting to plan our very special day! Both our mums knew it was happening, but they were still super happy to hear the news.... even if Glen did forget to tell his mum directly! I can't believe my mum was able to keep the secret for so long... I'm surprised she didn't burst! I won't bore you too much about how he did it... but it involved Love Heart sweets!
Also while I was away, I checked in on Facebook just to see what was going on, and found out that a very good friend of mine got the gift of life and received her double lung transplant. After that, I made certain that at least twice a day I found my way to the free wifi area to keep an eye on her progress. When I first read she'd gone down (albeit the day after it happened!) I didn't know what to do... I wanted to cry, and cheer, and tell someone... but I was in a queue waiting to make dinner reservations and had to contain myself until I'd rushed back to find Glen. I'm so happy for her and glad to hear she's getting stronger each day :)
We did a lovely jeep safari trip towards the end of our stay so that we actually saw the island, and I'm so glad we did.... Antigua is a beautiful country with many gorgeous sites and a lot of history that they take so much pride in (even their bad parts of history they're still proud of as it's what made them who they are) We as a nation could learn so much from them! The couple we shared the day with were lovely, and ended up being friends we bumped into regularly round the hotel (and even on the same flight home!). Our guide found out we'd just got engaged and proceeded to serenade us both while driving along a very bumpy track... very awkward- on both counts!!
Our flight home was eventful... and not in a good way! We were mostly all boarded when it became apparent that a man 2 rows in front of us was agitatedly looking for something and went to see the stewardess. About 10 minutes later a member of security escorted his wife to the plane from the airport terminal. She looked like she struggled up the stairs (I thought she might have been ill, scared of heights or disabled etc) eventually she got in and to her seat. The plane took off and we were coming home. A short while into the flight I started to notice that she would shout at her hubby... thinking 'ok, end of holiday blues, domestic!!' Her shouts gradually got louder and more colourful. I then noticed that one of the stewardesses was banging on the toilet door and asking if they needed any help, then heard the woman shout back something which must have been a yes, but she had barricaded herself in so the door wouldn't open. Eventually she came out and was shepherded back to her seat. Things got more interesting when she started throwing things like pillows and jumpers over her head to the people sat behind her (the row in front of us), then she got up and started shouting at them because they complained about her. The husband was warned to get her under control or she would have to be restrained. After more shouting and throwing of stuff, she barged into the galley and helped herself to water (as the staff refused to get her anything while she was throwing stuff) - by this time they'd moved the couple directly behind her and cleared the seats... we were now the closest to her!- For a moment or two I thought her nice big tumbler of water was coming directly for me, but this was hastily forgotten as she made a dash for it down the aisle. All of a sudden there was a shouted 'NOW!' and about 8 members of cabin crew swarmed over her and manhandled her back to her seat and promptly restrained her... several seat belts around her body and chair (and later found out, a pair of handcuffs!) After that I was quite freaked out and got a bit sick so tried to sleep it off, but every time I'd start dropping off she made a stoopid noise. I know she was restrained, but I was a bit jumpy that she'd somehow escape and go on a rampage! I think I can honestly say that that was my first flight where I actually felt scared! Eventually we landed at Gatwick and had to wait for the police to decide what to do with her... arrest her... before we could all get off the plane.
A few days after getting home I checked my bank account online, and found that my current account had been attacked by some Korean fraudsters who had taken several hundred pounds. I called the bank immediately and they were really helpful and got the money returned to me within the hour... only problem was that my card got instantly cancelled and a new one ordered... a week before Christmas! I was set out into the world of Xmas shopping with no personal bank card... luckily I had the house card and my credit card so didn't suffer too badly, but Glen did have to pay for my work meal out as I couldn't get any cash out!
And now it's 2014!! Christmas and New Year have passed and everyone's back to work and depressed about the weather!
My thoughts for this year.... it can't be any worse than last year! Not just for me, but for so many people I know, 2013 was an awful year. I'm so glad to see the back of it! 2014 has promise to be a brilliant year... I'm starting to do some research into our wedding, complete with a trip to look round somewhere this weekend... with wedding, comes a mini-moon (a full on far away honeymoon will likely have to go on hold until my chest is better), I;m likely to be listed for transplant within the next few weeks so you never know, by the end of 2014 I could be puffing away with some shiny new lungs?!! We're having our hallway decorated in a few weeks to make it look soooo much nicer and fresher than it is now. I think it was a big reason that people were put off buying our place last year. If we have time and money then we both want to move... but maybe we should hold off at least one major thing for the time being?!!
Oh and my friend who had her tx before Christmas is doing fantastically... I'm so happy for her and looking forward to hearing about all of her adventures, which sound like they might be starting with going to the gym and big shopping trip!
Now for the picture... what could it be??
Tuesday, 19 November 2013
What a girl goes through for a holiday!
Random excitement burst..... BACKSTREET BOYS ARE COMING TO THE UK IN 2014!! Woop!
Now, back to the reason for the post!
For most people, when a holiday is approaching, the biggest issues are deciding what clothes/shoes to take, book/entertainment and how much money to take with you.... for me, add numerous other complications into that.
First off- insurance. It took me about 3 weeks to get a full and accurate insurance quote to cover me for everything medical. This process involved me crashing about 4 different company quote engines, talking to sales reps numerous times, then eventually them holding their hands up and saying 'we haven't a clue what to do with this, we'll get our specialist underwriter to call you direct'. Another 2 long conversations with her later and I finally get my quote. This amount would easily pay for another adult to come along on our 2 week all inc Caribbean holiday. Money warning bells in my head started chirping, but Glen being the voice of reason said he would rather pay this and know that whatever happens to me on holiday, it's covered.
Insurance check, next up... oxygen. Flight oxygen is easily sorted... an email to Virgin to reserve it, then get the docs to fill out their medical form so they can have everything tied up prior to departure and job done. Problem being I'm on oxygen 24/7, I need something for the time I'm not on the plane.... my research started with the British Lung Foundation for their advice (as CF Trust very kindly ignored my email!) After getting a list of some companies that may be able to provide oxygen in some form, and contacting them direct I established that due to travelling so far, I wouldn't be able to get what I have at home (numerous cylinders) so I would have to source a concentrator. I eventually found 2 companies which did portable machines (POCs) which could run off batteries and both ac and dc mains... so effectively can be used anywhere. I asked for a couple of quotes and eventually settled on the one to accompany me in my travels. I should be getting that next week a couple of days before I fly so that I can have a play and check that I can work it while I have people on hand to help me with it!
To get me tip top for the duration I'm away- so I'm as best prepared and hopefully to prevent any problems while I 'm away- I begrudgingly agreed to a 3 week IV course :( I fought for only 2 weeks, but no it had to be 3!! I am now on the last week of them (hazaa) but it hasn't been a smooth course this time around. My first week I was on 3 drugs, thrice daily. From start to finish each dose took approx. an hour (setting up, mixing administering and clean-up) this in itself led to an incredible amount of tiredness. With IVs, they have to have a minimum amount of time between each dose, and with having it 3 times a day, this results in having to get up early for the 1st dose, or the bedtime ones get too late. I generally do the 1st dose, then back to sleep for a while, but it is still broken sleep. For the first time in a long while, I did suffer with proper side effects of headaches after every dose that first week which was one reason (the other tiredness) I asked to have the number of drugs reduced to 2 for the second week. 2nd week, headaches stopped and dose time dropped to about 25 minutes, which felt like bliss (and lunch was only 1 drug so even quicker!) My only problem that week was that I seemed to pick up a 24hr stomach bug and couldn't eat (struggled to keep biscuits and water down)... even my anti sickness IV didn't touch it :( Luckily that passed and I got right back on the eating!! Yesterday my drugs were changed about, still on 2, but one of the ones I was on before has now run out nationally so they no more to give me! My combination now has seen me return to the one that was dropped form the week before, so I hope I don't get headaches back *fingers are crossed*
In clinic yesterday I saw the dietitian who had seen me on day 1 IVs and my weight had dropped a teeny amount (1kg) but this was mostly to the fact that I had decided to run an 'eu naturelle' test and see what my weight did without doing any PEG feeding between clinics. (3 weeks off feeds) I was surprised I had only dropped 1kg, but she was a little concerned about it only because of holiday approaching and I won't be feeding while away. So asked me to try to put that kilo back on before I go away. Saw her yesterday, and had she not of been wearing tights, I think it would have been safe to say that I knocked her socks off!! I put gained back that kilo lost, plus another 1kg so yesterday recorded my heaviest EVER! I now have a BMI of 21! I'm now excited to be going on holiday with an appetite to see if I can put on weight abroad, with no feed or dairy (I hate foreign milk!) helping that along is that I've been put on a week of steroid tablets to try to help my chest inflammation. Last time I had these tablets I ate like a frigging horse, and my appetite is already more than it was then.
I've been preparing bit by bit my holiday drug stock take. When you have 6 pages of repeat prescription from the GP as well as about 4 things you get direct from hospital, getting together enough tablets, inhalers, anti-biotics, pain relief and plenty of 'just in case' items takes a lot of thought! Over the past 2 weeks I've done multiple stock takes to see what I have of everything I take, and when the current amount will run out, therefore how much do I need to order in before I go, and what will I need to order before I'm home to have ready for me to come home to.... I'm getting there, last GP run is going in tomorrow (I hope!) so hopefully by Monday I should be able to pack my holiday drug holdall!
Lastly, the normal holiday packing panics... 'will I have enough xyz?', 'how many bikinis should I take?' (Will I feel comfortable showing my stomach with the PEG, should I take swimsuits?!) More importantly for me, I need to decide what books I'm taking, and when to start my holiday reads. When I'm on holiday, and don't feel guilty about doing nothing but reading, I get through books like they're going out of fashion. Glen isn't a big reader, and won't take books that I'm bothered about reading so I need to make sure I take enough to keep me going for 2 weeks, but not too many so it is too heavy in the suitcase! I know here, techie folk are screaming 'Get an e-reader'... I have a kindle, but I save my big chunky (serial) books specifically for holiday so I can get my teeth into them. Ho hum, busy weekend packing clothes and choosing books!
Lastly, having been watching lots of Australian Masterchef and looking through recipe books and food-y programmes etc, I have an interest in making yummy things. So weekend before last we decided to attempt Black Forest Roulade (v.1) we got all the ingredients sorted and started... the choc melted fine, the eggs didn't seem to want to whisk into peaks... even after Glen giving it such a good go for a long time... me being the 'bosher' I just decided to go with it and see what happened... the bit that struck me as we have severely gone wrong was the point in the recipe when it said to 'spoon the mix into the tray'... mine just poured and almost overflowed the edges of the tray. As it was cooking it looked kinda like an alien creature, when it came out I then could not separate the baking paper from it. We had somehow managed to create a gooey, crispy, chewy chocolatey (papery) mess. It cooled and went in the bin. The house smelt good though! This week between us we found alternative techniques to try to iron out those... kinks! This weekend... Black forest roulade v.2... and look for yourselves below! Not perfect, but a darn sight better and at least it looks ok (from one side, the open side looks a bit like roadkill!!)
Now, back to the reason for the post!
For most people, when a holiday is approaching, the biggest issues are deciding what clothes/shoes to take, book/entertainment and how much money to take with you.... for me, add numerous other complications into that.
First off- insurance. It took me about 3 weeks to get a full and accurate insurance quote to cover me for everything medical. This process involved me crashing about 4 different company quote engines, talking to sales reps numerous times, then eventually them holding their hands up and saying 'we haven't a clue what to do with this, we'll get our specialist underwriter to call you direct'. Another 2 long conversations with her later and I finally get my quote. This amount would easily pay for another adult to come along on our 2 week all inc Caribbean holiday. Money warning bells in my head started chirping, but Glen being the voice of reason said he would rather pay this and know that whatever happens to me on holiday, it's covered.
Insurance check, next up... oxygen. Flight oxygen is easily sorted... an email to Virgin to reserve it, then get the docs to fill out their medical form so they can have everything tied up prior to departure and job done. Problem being I'm on oxygen 24/7, I need something for the time I'm not on the plane.... my research started with the British Lung Foundation for their advice (as CF Trust very kindly ignored my email!) After getting a list of some companies that may be able to provide oxygen in some form, and contacting them direct I established that due to travelling so far, I wouldn't be able to get what I have at home (numerous cylinders) so I would have to source a concentrator. I eventually found 2 companies which did portable machines (POCs) which could run off batteries and both ac and dc mains... so effectively can be used anywhere. I asked for a couple of quotes and eventually settled on the one to accompany me in my travels. I should be getting that next week a couple of days before I fly so that I can have a play and check that I can work it while I have people on hand to help me with it!
To get me tip top for the duration I'm away- so I'm as best prepared and hopefully to prevent any problems while I 'm away- I begrudgingly agreed to a 3 week IV course :( I fought for only 2 weeks, but no it had to be 3!! I am now on the last week of them (hazaa) but it hasn't been a smooth course this time around. My first week I was on 3 drugs, thrice daily. From start to finish each dose took approx. an hour (setting up, mixing administering and clean-up) this in itself led to an incredible amount of tiredness. With IVs, they have to have a minimum amount of time between each dose, and with having it 3 times a day, this results in having to get up early for the 1st dose, or the bedtime ones get too late. I generally do the 1st dose, then back to sleep for a while, but it is still broken sleep. For the first time in a long while, I did suffer with proper side effects of headaches after every dose that first week which was one reason (the other tiredness) I asked to have the number of drugs reduced to 2 for the second week. 2nd week, headaches stopped and dose time dropped to about 25 minutes, which felt like bliss (and lunch was only 1 drug so even quicker!) My only problem that week was that I seemed to pick up a 24hr stomach bug and couldn't eat (struggled to keep biscuits and water down)... even my anti sickness IV didn't touch it :( Luckily that passed and I got right back on the eating!! Yesterday my drugs were changed about, still on 2, but one of the ones I was on before has now run out nationally so they no more to give me! My combination now has seen me return to the one that was dropped form the week before, so I hope I don't get headaches back *fingers are crossed*
In clinic yesterday I saw the dietitian who had seen me on day 1 IVs and my weight had dropped a teeny amount (1kg) but this was mostly to the fact that I had decided to run an 'eu naturelle' test and see what my weight did without doing any PEG feeding between clinics. (3 weeks off feeds) I was surprised I had only dropped 1kg, but she was a little concerned about it only because of holiday approaching and I won't be feeding while away. So asked me to try to put that kilo back on before I go away. Saw her yesterday, and had she not of been wearing tights, I think it would have been safe to say that I knocked her socks off!! I put gained back that kilo lost, plus another 1kg so yesterday recorded my heaviest EVER! I now have a BMI of 21! I'm now excited to be going on holiday with an appetite to see if I can put on weight abroad, with no feed or dairy (I hate foreign milk!) helping that along is that I've been put on a week of steroid tablets to try to help my chest inflammation. Last time I had these tablets I ate like a frigging horse, and my appetite is already more than it was then.
I've been preparing bit by bit my holiday drug stock take. When you have 6 pages of repeat prescription from the GP as well as about 4 things you get direct from hospital, getting together enough tablets, inhalers, anti-biotics, pain relief and plenty of 'just in case' items takes a lot of thought! Over the past 2 weeks I've done multiple stock takes to see what I have of everything I take, and when the current amount will run out, therefore how much do I need to order in before I go, and what will I need to order before I'm home to have ready for me to come home to.... I'm getting there, last GP run is going in tomorrow (I hope!) so hopefully by Monday I should be able to pack my holiday drug holdall!
Lastly, the normal holiday packing panics... 'will I have enough xyz?', 'how many bikinis should I take?' (Will I feel comfortable showing my stomach with the PEG, should I take swimsuits?!) More importantly for me, I need to decide what books I'm taking, and when to start my holiday reads. When I'm on holiday, and don't feel guilty about doing nothing but reading, I get through books like they're going out of fashion. Glen isn't a big reader, and won't take books that I'm bothered about reading so I need to make sure I take enough to keep me going for 2 weeks, but not too many so it is too heavy in the suitcase! I know here, techie folk are screaming 'Get an e-reader'... I have a kindle, but I save my big chunky (serial) books specifically for holiday so I can get my teeth into them. Ho hum, busy weekend packing clothes and choosing books!
Lastly, having been watching lots of Australian Masterchef and looking through recipe books and food-y programmes etc, I have an interest in making yummy things. So weekend before last we decided to attempt Black Forest Roulade (v.1) we got all the ingredients sorted and started... the choc melted fine, the eggs didn't seem to want to whisk into peaks... even after Glen giving it such a good go for a long time... me being the 'bosher' I just decided to go with it and see what happened... the bit that struck me as we have severely gone wrong was the point in the recipe when it said to 'spoon the mix into the tray'... mine just poured and almost overflowed the edges of the tray. As it was cooking it looked kinda like an alien creature, when it came out I then could not separate the baking paper from it. We had somehow managed to create a gooey, crispy, chewy chocolatey (papery) mess. It cooled and went in the bin. The house smelt good though! This week between us we found alternative techniques to try to iron out those... kinks! This weekend... Black forest roulade v.2... and look for yourselves below! Not perfect, but a darn sight better and at least it looks ok (from one side, the open side looks a bit like roadkill!!)
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