So my mum said to me about 2-3 weeks ago "you haven't blogged recently" and I responded with "well there's nothing to blog about" famous last words and how I regret saying them now!! Hahaha
Going to try keep this as simple as poss without this blog dragging on...
So I had kept out of hospital and was doing pretty well! But started routine ivs to keep things under control and prevent any flare ups!
I can tell I was having better days cause I've been putting make up on a bit recently, I have also been spending more time with my sisters and I literally look like a tramp if I don't bother, so brows nails and lashes kept on top of now! Haha
I've recently moved into my parents house whilst I am on home Ivs, my husband leaves early in the morning and doesn't get back till dinner time so it's about 12 hours and my mum can't get over at 6 in the morning so it just made sense for me to move into my parents, takes the pressure of all of us to be honest and if it makes mine and their life easier, then I'm all for doing so.
I have a nice little sofa bed and it's sooo comfy!
and it's actually been nice to have some sister bonding time as I left home at 18 and they are 9 and 6 years younger than me, so now we have more in common although I'm constantly being reminded that I'm old!! But I remember being their age and yeah 24/25 is old-good bye youth! Hahaha
You may have seen back in March time I think it was when I mentioned that I had an mri scan and the results of that showed I had a narrowing vena cava vein, one of the main veins, this was causing me alot of discomfort, when I coughed my face would go red/purple and all the veins in my neck would bulge out and lips would go blue and it would take a while for this to go down and sometimes it would be worse and I would get a lot of pressure in my head, felt dizzy and it went blurry and felt like I had been hanging upside down.
We didn't want to mess about with it before and the plan was to keep an eye on it, but as I am on home Ivs at the moment it seems to get worse on Ivs (which is a lot of the time now) but for a few days after i started Ivs I felt more pressure and couldn't bend over as it hurt my head, when all the blood rushed to it.
But Monday (1st June) I was just sat there still on my bed and the veins were sticking out of my head and neck and mum was very close to taking me to a&e.
I had clinic next morning and we told one of my consultants Alex and she said that without a doubt my port needs to come out straight away and what we told her of night before she said sounded a bit dangerous and if that was to happen again before we manage to get port out then they might do an emergency port removal if I went to a&e. (The thought of that didn't sound appealing)
Now one great thing about frimley is not only is the cf unit fab, but because they are part of a general hospital they all know each other, so things get done a lot quicker.
The only thing we needed to wait for was Harefield to get back to my dr to see if I could have a stent put in aswell to keep the vein open and from closing again.
I went home instead of waiting around in clinic, there was no beds and it wasn't going to happen that day (I hoped anyway) I was getting quite emotional.
Because of my crappy lungs it's too dangerous to put me to sleep and I was so terrified at the thought of being awake to have it done.
So I just wanted to get home and relax and eat! I spent the rest of the afternoon very anxious and quiet and just trying to process what I'd been told. Just thought come on lungs come tonight so they can do it all in one go and I won't have to be awake for it all, kill two birds with one stone!
The next day, in the afternoon I got a call from Judith the cf nurse specialist at frimley, they are so great, they had organised it so quickly but my god I didn't feel like I had time to process it all! They said booked in for tomorrow (Thursday 4th june) but they were still waiting for Harefield to confirm, they didn't want to me to have a stent due to infections reason and you have to take blood thinners and obviously waiting for tx we can't do that.
so we waiting for them to see if it's ok to have a balloon done, it's called angioplasty, basically they go into the groin or neck and they feed a wire thru and a balloon and Inflat it to try open up the vein.
Then I was told I was going to have a picc line put in after.
I've had a port since I was 9 years old and then another one when I was 15 so a long old time, didn't like the idea of a picc line, felt like it's more obvious and I hate having stuff that makes me look and feel like an "ill person" I no that's a stupid comment as I wear oxygen but I dunno I'm use to that now, my ports always been so hidden, when accessed the tubing just tucks away into my bra. It done me well in my teen years!
The night before I had my friends over, tor and Rach and really helped distract my head and keep me busy and always good for a girly catch up. I stupidly drank a redbull around 7-8pm.
But after they left my head went into over drive thinking mode, I couldn't sleep, nothing I was doing was working hours went by so so quickly and before I knew it my alarm was going off to get up and get ready.
Anyways so I arrived at the cf unit at 9am
I was Put into a treatment room.
I didn't sleep a wink that night, and had my redbull to start me off for the day, looking back now the redbull was a massive fail on both occasions.
i was a mess, so so nervous, it was so unlike me, I normally handle these situations so much better but i was being pathetic, looking back now its so embarrassing.
i got to see chris and asked him to give me something to relax me, he wrote up some lorazepam but waited until I was in my room or just before to take it.
The reg from the surgery team, the ones who would be removing the port came down to do the pre op bits, tell me what was happening, sign bit and tell me off any risks or possible complications, normally the bits you don't really take much notice of cause they always say in a rare circumstance Bela bla this happens.
Then with a black marker I get drawn on my boob an arrow pointing towards my port! Covered my recently pierced ear studs ha and off she went.
Because i was a 10 minute procedure, i wouldn't be hanging around up at the theatre so i had to have a room to go back too. i felt so bad on the girl in the room leaving that day being chucked out early into a treatment room, but they had to get me in so they didn't hold up the surgeons and there little list for the day.
so room was cleaned i took the tablet, thinking id have an hour or so to relax. Was given my gown to put on which I took myself off to the bathroom to do.
I got in there and just broke down into tears as quietly as I could. I felt so sorry for myself and was trying so hard to just get a grip but I couldnt was so unlike me!
Mum called me after a while to see if I was ok and I knew I needed to just man up, get the gown on and go back out, but another part of me knew the longer I stayed in the bathroom, the longer it would be till anyone could take me down!
I literally came out bathroom, got into the bed and the porter was there to take me down.
They pushed me down on my bed and i just sobbed like the whole way, the tablet had done nothing, the redbull prob kept me more awake! Got to the threate and was put into pre op room, and then they said i had to say bye to my mum and i lost it, i was crying and crying and i remember saying to them, you wouldn't do this to an animal hahahahaha I'm so dramatic!
Mum left and I was just crying, one of the woman, an older lady started going on about my nail vanish on my toes (clearly trying to distract me and relax me) saying did my mum do it or something, I just ignored her and kept sobbing lol muppet I clearly didn't wanna talk about nail polish colours when I'm about to be sliced open awake like something from saw! Hahaha
so i go into the operation room, and they ask me to move onto the table, it was horrible and hard and i lay down and just sobbed my little heart out. the reg i think it was sat there and held my hand and they were asking what type of music i wanted on in the background.... i couldn't give a shit what music was on i told them....in a kinda angry jokey way, then adele someone like you came on and that song always makes me sad now for other reason so i said get this song off now!!
i had emla cream all over the area to help take the sting off for when they injected the local anaesthetic, and he kept it on and put the needle thru the cream and the tagemdam, that was weird but omg it was so painful, when local ananethetic goes in, it stings so much, he kept putting it in and more and it was just hurting so much and i was crying my eyes out! the surgeon walked off and the reg was trying to calm me down, talking so gentle to me, she was lovely.
5 mins later he comes back in and says right you and i aren't working well together lol i was like oh cheers, then this other guy, really cool looking, older guy pushes stuff into my cannula and they said right were going to put you to sleep, i was like i can't my lungs are rubbish I'm not aloud to be put under and he was like its ok we've spoken to you dr. then i calmed right down and just wanted to sleep and it all be done with, i said to the reg who was still holding my hand, please tell my mum, let her know whats going on.
they pushed more stuff in cannula and i was thinking to myself its not working, i remember as a kid i could feel it work instantly and i barely got to 5 when i use to count, then they took my oxygen off started messing about and I was like I need oxygen or something ha then they put a mask on then i remember just drifting off.....
The next bit is what I've been told.
so the reg went out and explained to mum what was going on, i was breathing for myself so wasn't a general ananethtic.
so they started removing my port.
Remember I said earlier about they have to tell you he risks and complication...yeah so I should have listened more because that happened to me.
when they began to remove it the port was imbedded into me or something, and it started breaking up and was becoming difficult to remove, they had to then ventilate me and put me into a general anaesthetic and what was meant to take 10 mins 20 mins max took 2 and half hours!!
So I'm told it was really difficult and once they started pulling the tubing bit out of my neck it broke away into the vein and they had to cut into my neck and they said i couldn't have been awake for that!
so maybe everything does happen for a reason! Also whilst I was asleep they done the angioplasty into my neck and they said it opened it up but weren't sure how long it would last and basically have to see if I were to get any more symptoms.
my mum said she was so worried because she was always told i couldn't be ventilated incase i didn't come off it.
i did really well with it all and i woke up in recovery, mum and lee arrived and i got my phone back and was taking plenty of selfies and chatting away, chris my other consultant came down and i was telling him how great i felt, clearly the drugs were giving me a buzz and masking the pain. i decided in recovery to start ordering chinese on just eat and by the time they pushed me back to the ward, the chinese was ordered and was almost there ready to eat, my mum went home as she knew i was fine and lee stayed with me!
the drugs started to wear off and the pain started kicking in, my neck was so sore, but they gave me some tramadol and i fell asleep, lee tucked me in, gave me a kiss and he left.
i was then woken up by a very handsome young dr, bit annoying as i was in a lovely sleep and the first thing I do when I wake up is go into a massive coughing fit, the coughing was fine it's the pain it caused in my neck that was unbearable, I couldn't cope, they wrote me up a very small dose of morphine 1ml infact, it did nothing, and caused more pain when pushing it thru my cannula, then the cannula went and had to come out. Had a baby one put in on other arm.. Jheeeze
Long story short as this blog post will go on forever otherwise!!
I slept sitting upright to prevent as much coughing as possible, Friday was very blurry and horrible they gave me more iv morphine then that cannula went on me so I was left with tramadol constantly but it made me feel so so sick and the after affects of the morphine, I was grey and couldn't even keep fluids down!
They got a picc line in around 3-4ish and finally had anti sickness once it was xrayed and good to use. They couldn't go all the way in because they didn't want to irritate the vein that was blocked before.
Saturday was a much much better day! Mum came up, picc line was working a treat, I felt more human after a night of fluids and not feeling like death from the iv morphine. The pain was still strong but bearable and I planned tramadol and paracetamol, was changed onto iv paracetamol which is really good and works so fast!! I was buzzing that day, I walked from the cf unit to the shops to get myself a drink and then got to the shop and it was shut haha made me giggle though, then I got in wheelchair and mum pushed me back to the cf unit the outside way and it was lovely hot and sunny and so nice to get some fresh air.
Then mum went home and caught up with family on FaceTime and waited for lee to come up. Must of been a couple hours later, I went all funny and shivery and my temp shot up to 38.7 and was too early for paracetamol, I didn't want blood cultures as veins were not in a good way so didn't need to waste them on blood cultures when I was due tobi levels the next day and normal bloods!
Once I got paracetamol inside me all went back to normal.
I ran a temp for a few days and my crp had gone from 28 to 162 but that was to be expected after having an op mainly inflammation, so everything was just a bit stirred up. I managed to get home on the Monday (8th June) and was so good!
Same Monday but night time around 10pm sat down to watch big brother and start ivs.
I start the flush and all of a sudden my arm felt wet and I got this shooting pain! Looked down at the picc and when I was pushing it thru it was coming out of the hole, not really sure how that works cause the line ends in my arm pit but it must of broken or curled around was a bit bizzar, took the dressing off to make sure I wasn't making it up and that it really was leaking from in side, got my mum to flush it whilst I held it in and the same happened, all leaked from the hole! Then the pain got worse and worse, it had been aching but I thought that was normal.
The pain continued to get worse and it stopped flushing all together. So my mum rang the unit and she said just have to go to a&e as it was only one nurse on.
I was in agony, just put my dressing gown on and off we went to frimley a&e. On the way my arm started going numb, literally it was painful but yet numb at the same time, was getting pins and needles in it and my hand and bottom of arm were freezing!
Got to a&e and it was packed!
As soon as they found out i have cf they put me in a different section of a&e (as they know of cross infection) and by this time I was crying my eyes out the pain was so uncomfortable.
(I've done a lot of crying and dramatic stuff recently what's happened to the brave George! Such a wimp now!)
And then was seen less than 5 mins after arriving. I could tell everyone in a&e prob hated me right then! But they can do one, I spend my life in this place so I'm entitled to a bit of vip treatment ESP as it hadn't even been 12 hours since I'd left the place!
Anyways was seen straight away and wheeled off into a cubicle once the guy done my blood pressure and temp etc.
Dr came and saw me and I explained how it was fine that afternoon and how I'd left the unit that day and how it stopped working that night and my arm was numb and I'm so much pain.
She had a little look and poked it and it was awful. She went off and spoke to other Dr and said they weren't keen on taking it out and want me to come in bla bla all I wanted was for this thing to get out of my arm, them to put a cannula in and I go home and sleep. So she did just that and they left a message for cf nurse so I would go up the next day.
Such a weird feeling having it pulled out and my god it was pouring with blood, had to put pressure on it to try stop the blood as its from a main vein so bleeds a lot more than normal ones, but my god the area was so tender and painful and the last thing I wanted was to apply pressure! They cut the end of the picc line off and sent it off for testing to check for infections etc.
Had cannula put in my wrist and off I went home and all I wanted to do was sleep and not be prodded!
It was gone 12.30am by time we got home so missed ivs that night and just went to sleep!
Woke up the next morning to do ivs and it was really uncomfortable, managed to get ivs in. However I woke up to my arm that the picc line had been in, so big and swollen. Literally so weird, it looked like i had a muscle but in the wrong place and my god was it tender!
It had all tissued up and was quite sore, I could feel the whole vein had tissued right up into my arm pit was tender and hard!
Then my cannula went and vein tissued up and went hard. Really by this point I wanted the floor to open up and swallow me!
My cf nurse called but had my mum answer. I didn't want to go up the unit I just needed a break from it all, been so full on since having the port removed.
I felt battered and bruised and just need time to heal physically and emotionally to be honest. Judith spoke to my mum and said that we need to get another picc line in and was upset that I had taken the first out in a&e but there's no way I could have kept it in, far too painful.
She said she was happy for me to take my cannula out if it wasn't working so that felt good, and she was going to call when she knows she can get me in for another picc.
It was Tuesday (9th June) and it was mums bday the next day so I didn't want it to happen then, and I got myself all worked up I was going to ask them to leave me until next week, so my body had some time to heal from it all.
But she called my mum later that day and said she booked me in for another picc line on Thursday morning. I had a bad day on Wednesday morning so I knew I needed to be on ivs and the only way to get them inside me was picc number too. So I agreed to Thursday and just dreaded it. The thought of them going Into the same arm worried me because of how sore it was.
We had a lovely afternoon for mums bday with my family.
Thursday morning came, was more relaxed than I thought I would be. Got there and I met the lovely guy who done the balloon procedure. He explained to me how bad the blocking was. He said the vein is barely open or was barely open, and he said it was remarkable to see it open, I was asleep obviously after having port removed but I'm told I went from being purple to pink once it opened up!
He got gowned up and met me in the X-ray room/theatre.
Was a very weird environment, compared to having the first picc line fitted in my bed in my room on the unit, this felt more like a operation type procedure (it wasn't Obvs) they didn't want mum to stay but I asked if she could just stay until I had the general anaesthetic put in as that stings like a bitch and I could squeeze her hand and she helps me breathe through it.
Well she ended up staying for the whole thing, she said it was so interesting to watch, they do a live X-ray thing on the big screens whilst feeding the wires and bits thru the veins.
It was quite painful, they couldn't find any veins at first and then they found a few but weren't good enough (no technical terms here btw) they finally found a vein and decided to go for it and then as they were putting wire through the vein collapsed!
Was gutted when that happened cause it meant they had to start all over again, he asked if I was on blood thinners, which I'm not, then asked if I had had a lot of lines in that arm. Mum said it was used a lot before I had my port when I was 9 so just useless basically.
They found Another one and used a paediatric line as vein was tiny, he spoke about mine being that closed he said its narrowing again as they were feeding the wire thru it wouldn't go past that point because the vein is closed so much even after having the balloon thing. He said it needs a stent and I also need a portacath again.
Once it was done he said right i see you again soon, it's not going to last long that one. (Nothing like positive thinking haha) and he just kept saying I need a stent the veins closing again. He's going to report back to Chris and then a plan needs to be made for a port to be fitted again.
So far so good still have this picc line in, working well, it's very sore and tender but I think I'm just not use to these picc lines so it's gonna take a while to adjust!
I'm worried about this vein of mine and what the plan will be next because it's been made very clear I need a stent but I would also need to go on blood thinners for a year once it's fitted to help the blood flow and prevent a clot, however I am on the transplant list waiting for a set of lungs at any time and have to be ready for major surgery so that's where the problems clash!
I have a proper clinic appointment this Friday 19th June with my consultant and I'm hoping to speak to Harefield because I need to know my options and how this leaves things etc.
Sorry for the long arse posts and hope I've not missed stuff out, I also realise I've been a massive drama queen this pass two weeks and I need to get a grip because if I'm like this over something minor, what the hell am I going to be like when I finally get my call for new lungs!? Haha
On a happier note, I've had a lovely family weekend with all my favs! And mum had a good old 50th she'll kill me for exposing her age! Ha I really wish my call would come soon so my life and my loved ones life aren't spent worrying and put on hold! It's now 9 months I've been waiting this time!
Some pictures from the pass few weeks
Love to all, thanks for taking the time to read if you managed to get to the end! And won't be so long in future!