Tuesday, 30 June 2015

The stent is a go ahead!

I promised myself I would keep up to date so my blogs aren't boring and long! I hate reading myself so it put me off looking at the last post, which is another reason to excuse my terrible grammar, and all that, can't blame it completely on the long posts as I'm not the smartest cookie, but you get the idea! 

So I'm back in hotel de frimley! Aka the CF unit at Frimley Park hospital!
I've had a week full of hospitals. 
Had my little visit to Harefield to see carby! I was added onto a very busy clinic so it was short and sweet the actually time spent with him. Basically he hadn't heard thing about everything that's been going on, whoever my team at frimley spoke to at Harefield, it wasn't passed onto Dr carby, and because of how quick things had happened with vein narrowing and port being removed, letters hadn't been processed or reached Harefield yet.

Anyways told him briefly what's happened and what I had been told "hear say" that Harefield weren't keen or didn't want me to have a stent placed. He said ok ok let me ring Chris (my cf Dr) 
So mum, lee and I are sat there, so quietly, even a bit awkwardly whilst carby rings Chris to get this sorted, straight to the point, Chris explained in Dr language few mins later he's off the phone! 
Right so he now knows what vein it is, Chris was going to email over all the photo bit and radiology bits whatever they call it, just all the info from what scans showed up and Drs and surgeons reports. 
Dr Martin carby was going to bring it up and talk to surgeons at Harefield in there meeting on the Thursday (day after the clinic) and I would hear back with a final decision but he said he can't see why having a stent would cause any problems.

Massive weight lifted off my shoulders! And blood thinners not an issue as long as I'm put on the ones they can revert and not one of the "new" blood thinners. So was in there no longer than 15 mins and sorted! 
We also did ask how many surgeons do lung ruduction/lobar transplants and it's 3/4 of the surgeons which is fine. 
Just wondered if on a night a set of larger lungs became available for me that no one else was fit for or fitted and they could make them smaller, wanted to see how many of the surgeons are able too preform it! 
But 3/4 is good odds for me! 
I'm their target or something so on their  radar as they keep telling me, just gotta keep going and keep as well as is possible!! 

Since being at Harefield sooner than my yearly/6th monthly appointment, I got my 3 monthly bloods done to check anti bodies and All that. I avoided the weight which I am very pleased at now! 
 
So that week (last week) I had changed my I.vs on the Friday but started properly Saturday. Changed to ceftazadine and colistin, nothing unusually!
Well jheeze, hit me like a ton of bricks the sickness! I was already on home iv anti sickness, both of them and prior to the change, everything was good and working well, sickness was under control!

But not from Saturday onwards! I became very bloated and swollen in my tummy too, don't know if it was related, that went after a day or so. 
My last main meal was Monday night, had mash, honey and mustard stew with broc so yummy! But after Monday night I think I literally ate 3 ham sandwiches, an apple and jam on toast up to Thursday but most of that I had been sick shortly after so hadn't actually kept it down
and then I couldn't even keep fluids down over Thursday night, Friday mum decided I needn't to go in! 
I had been to the unit the day before, weak but I was fine, I couldn't walk and nor could I the day to Harefield due to feeling so weak from not eating or keeping down what I had eaten but the days I didn't have hospital I was in bed and hadn't washed for a few days, just life less! 
So Friday morning mum said right not even fluids staying down so need to go in and get on a drip and change drugs!
Luckily there was a free bed on the unit, got in by 3-4ish
And everyone was so great as usual! 
I was so weak and could barely talk and keep eyes open at first. 
Saw Drs and consultant, wrote up fluids, change drugs, added more anti sickness.
Around 7.30 just before drugs were written up, they had to weigh me to work out drug dose!
Well my weight has NEVER been so low! 33.3kg! Bmi of 15!!!!
Didn't believe, didn't want too! Dreaded turning around and telling my mum! 
It's like something mentally clicked I was like shit!!! They wouldn't even transplant me then if I got a call that night, and was so glad I wasn't weighed at Harefield on the Wednesday!!

Mum and I sat there for a good half hour in a bit of shock, and like right need to sort this out asap. Told her to bring feed bits up for ng tube, even though I was thinking if I can't keep fluids down how am i gna keep a tube down! but something hit mentally, it's like your natural instinct kicks in, and I managed to eat some crisps, some chocolate that night! 
The next day I saw Chris and I told him my weight and said I know it's not right reasons but can I go on Steriods get me eating if anything! 

Well cut along story short it worked and by Sunday afternoon I was 40kg! 
Little unsure if it's realistic, people are doubting the scale reading on Friday now, but I got on and off and honestly I didn't want it to be that low!! But that we will never no all that matters now is that I'm eating more and weights up, appetite is back! 

As I mentioned I was up at clinic Thursday, for bloods but I managed to speak to Chris then, as carby had spoken to him to give the go ahead, so now it's a matter of arranging a time when the vascular guy who will be inserting the stent is free the same day as the guy who inserts the new portacath! 

So my slightly vein problem! I know a lot of people will read this an judge me but I am only human and still a 24/25 year old woman despite having all this cf stuff and transplant bits I still want to feel good about my body! 
It's about where to place the new port! Now I was very lucky before, my first one was fitted when I was 9 then I grew boobs and had it moved up slightly when I was 15 but still was hidden in my boob, so unless it was accessed you actually never saw it! 
I've seen some awful ports been placed too high on the chest, where you can literally see the portacath sticking out of the chest and then skin is so thin it looks green and bruised etc! 
This is what I want to avoid! Otherwise I might as well have it on my forehead! I also lack in fat so boob is really my best bet! 
The vein side as in shallow side of me is worrying about more scars! And what happens if we agree on an area or placement, the surgeon and I and then I wake up and it's too high so I'm left with a port sticking out of my chest! How unattractive am I going to feel!? And what can I do!? 
I know there's so many more important things to be worrying about, but getting to my age in this situation with as little scars, procedures and war wounds as possible has been impressive compared to others, and I won't mind my transplant scars and marks because it's for the right reasons!! 
But silly cuts and marks from miss placed ports etc I'm not a fan off and don't want it added to my list!!! 

Anyways I'm saving pictures on my phone to show the surgeon exactly what I do NOT want to be left like! And come up with a plan we are both happy and agree too! 

Anyways that's me for now. I'm very hyped up on Steriods, can't seem to sleep! And can't stop eating! Also the Steriods are making the veins pop out of my neck again and pressure more present in my head! Stupid vein, can't wait for stent now to be honest! Just not looking forward to injecting blood thinners into myself until the levels are correct then I can move onto warfrin! 

Night all!! Much love xxx

Monday, 15 June 2015

Playing catch up!

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! 

Would also like to add, on Sunday I finished my weekend off by going to a friends charity cake bake in memory of her mum who sadly passed away due to MS she made some gorgeous yummy cakes and was a good turn out however it would be lovely to raise a bit more money, would really appreciate it if anyone reading this could spare a few pennies to donate to a great charity here is the link for her online giving page https://www.justgiving.com/abiscakebreak2015/?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=abiscakebreak2015&utm_campaign=pfp-share