Slight blip on the path to recovery but life continues

So Monday I woke with terrible chest pain, a sleepless night of tossing and turning and only being able to sleep on my back as the pain increased and felt like my heart had moved to where the pain was and pulsating through it causing me agony. Off to exeter hospital I trotted, I know any signs of symptoms of things not being right I have to get checked out due to my gastric/oesophagus issues and the possibility of refluxing into my lungs despite my fundo wrap. Also regardless of these issues anything wrong at such an early stage post transplant is amplified and can cause a lot more damage. I'm still shaken by my chronic rejection with my first transplant and so feeling very nervous about any little thing.

After a slightly fuzzy X-ray and a temperature I was transferred to harefield, put of tramadol for the pain and told I may or may not be bronched. Wednesday I was put on the emergency bronch list and starved all day for a bronch that never happened, but instead went ahead the next day. I dislike bronchs a lot, after waking up in agony from one with a collapsed lung.

I woke up still in the theatre, I usually wake in the recovery room, straight away blood came flying up from my lungs and most of it ended up all over me and some into a bowl. I hate it when you first wake after a bronch and those first few breaths feel really hard as they have been assisting your breathing through it, it like you've forgotten how to breathe on your own. That's how I always felt after using the bipap but 10 times worse because my lungs at that time weren't really sure how to breathe most of the time.

I was wheeled into recovery and continued to cough up a lot of blood, you cough up blood when they take biopsies, they always take biopsies with me now to check for aspirations due to gastric/oesophagus problems and chronic rejection. This particular bronch must have just caught a well perfused area as iv not coughed up this much blood since pre first transplant.

Later that day I was told that the bronch looked very clear and although there initial thoughts were infection there was no mucus in my lungs and it may be a virus which I seemed to have gotten over on my own. I would be allowed home as soon as my biopsy results came back.

Unfortunately the results didn't come back completely clear, I was told instantly that they were not at all worried and neither should I be. Easy for them to say but I'm still dealing with the emotional fall out of chronic rejection and being told I was going to die, so anything slightly squiffy worries me as i've said. It seems I have organised pneumonia, which I had as the very beginning of my chronic rejection and reflux issues. Organised pneumonia isn't a bug or infection as it sounds like, it's a immune response to something not quite right, it's inflammation in the lungs caused by the white cells, the treatment is a medium dose of steroids. Organised pneumonia is believed to be linked to reflux and the end of virus's or infection. So it could be from the end of my infection I have recently finished Ivs for or it could be a sign that my liquid/soft food diet and other precautions taken against reflux/aspiration is not working and either prof Hannah will have to have a rethink to see if there's any surgery he can do to stop it or I will have a peg fitted into my jejunum (small bowl) and be nil by mouth forever, the aim of this is to bypass my stomach so food doesn't reflux into my lungs. For now I'm on 25 mg of pred and I guess we will see if this helps and my lung function continues to improve and a biopsy will be repeated soon.

I remain worried, but obviously positive. I see myself as a very pragmatic person, a realist and there for will deal with this in the same way.

So now I'm back at my Nan's and life is continuing. Therefore leading me on to my good news and exciting week. Me and Stuart have made an offer on a house and it has been accepted! We are going to be home owns. This is a dream come true, I'm so excited that we got here, we made it all because of my two amazing donors, I will never forget them. Also it is nearly my birthday! I am so excited another birthday I didn't think I would make and there for feel it is slightly more special and a time to say thanks for all that I have. I cannot wait to celebrate the gift that is life.

Lastly I took my first walk for months with Kia yesterday on arriving home from hospital. It amazed me as I walked how effortless it was to breathe when before it was so hard, like every breath could be my last and how those tears ran down my face through pure fear, yet now I am standing here, walking without a single thought on how to breathe. thanks to my donors💕💕


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Dreaming wire free

I'm still recovering well, it seems like things are all heading in the right direction apart from a old annoying problem cropping up. My stomach does many magical painful things one of which is switching it's self off. Last night was the second time it's done this in this recovery. I was withering in pain and actually got to the point where I just though god this is never ending, the itu anethatist was brought down and then dosed me up on morphine until I passed out. A happy outcome. It got to the point where even my nurse didn't know what to do and all she could do was hold my hand and reassure me I was going to be ok.

Pain, pain is such a provocateur of emotions, how it can make you feel like your world is crashing down in seconds and anyone who has the power to take it away is simply a hero. I felt I truly didn't know how to keep going last night, surely I wouldn't keel over from the pain but I didn't physically know how I could handle any more.

I continue to dream of life wire free, house hunting, doing my sports therapy massage course, teaching pole, getting fit and having dinner with my hubby.

I can't wait to be curled up in our new house when we buy this autumn, surrounded by friends, family and of course Kia. It seems so idyllic and small but so tangible and perfect.

I'm hoping to be leaving hospital this week for a family wedding, whether that's full discharge or weekend leave we will see. I'm currently down to two chest drains and one neck line. I long for a full bath or shower.


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Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


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Lung collapsed, chronic rejection, radiation therapy

I haven't done a blog recently as a lot has been going on, so much that I wanted to wait until I had some answers. I still haven't got all the answers, well definite ones. So here it is.

Ever since my fundoplication, my lung function continued to drop and I felt more and more breathless, have more time off work and generally struggling.

I decided to get a check up at harefield and st Mary's as I was having problems with eating to.

My st Mary went ok.

Unfortunately, harefield didn't. Very out of breath in clinic and a lung function then of only 36% I was in for a bronch next day.

The bronch didn't go well, I woke up In incredible amounts of pain on high litres of oxygen and gasping for breath.

It wasn't until later that afternoon when I was sent for X-ray did we find out why, the nurse came in and announced the surgeon was here to fit a chest drain, I said what? And that was how I was told they had collapsed my lung. This is a small possibility during bronchoscopy when they take a biopsy and due to my continuing decline they decided it was appropriate to take a large biopsy.

The surgeon came in and described he would fit a drain and that should instantly make me feel better.

It was one of the most horrific sounding things iv ever had done, there was no pain, the surgeon made sure of that. But the sounds we horrific, the pushing pulling and general discomfort and feelings of suffocation were horrible. But I didn't cry once, I stared my dad in the face as he held my hand and stayed strong. I didn't want to upset him.

Since then my drain has been removed as my lung had come up, unfortunately not all the way and the bronch didn't come up with any conclusive results. Also the collapse gave me a nasty chest infection making me much worse.

So at the moment, I'm stuck on oxygen, very breathless when I walk and struggling to do stairs and exercise but preserving as its will help my lung come up.

So we get back to what's wrong with my lungs in the first place, well, it looks like I have chronic rejection although its not full confirmed, but I am starting radiation therapy and hopefully this will get me back to pre fundoplication lung function of about 45-50% if not it will stabilises me and we will have to look at my options from there. I'm also in talks with the surgeons about have my lung surgically restuck, but hopeful it will come up on its own.

So things have been really tough and how I feel about it all? Well I'm obviously very upset, I'm upset things have got this bad so quickly and I'm back to a very scary place of limbo, not knowing what the future will be. Can I say that you ever truly leave that place, where you think maybe you can see a future, that you can stop worrying that death is waiting around every corner, I think I was there. Either way, I'm loving, living and still breathing and that's what's important and I thank my donor every day for that gift.

Also here's a link from the week before I came in, of me on daybreak for cf week promoting organ donation and raising awareness of cf. Im very proud of this as I was extremely breathless and still managed to reliever my message, which is transplant saves lives and is a huge gift that I am forever grateful for.

http://www.itv.com/daybreak/health/cystic-fibrosis-transplants/#.Ucisoe4cHLY.facebook

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A perfect operation

So how did it all go? Well would you believe I'm back home! The morning of the op I met my surgeon registrar, he was really lovely. My notes said it was almost impossible for key hole and they would be likely to go open, it was the worst thing I wanted to hear, I was gearing myself up for a quick easy op thinking if I though it was going to be key hole enough I would almost will it to be. He assured me if he had to sit there for hours cutting through adhesions to make it so, he would. Unless my breathing deteriorated. He really understood how badly I didn't want open surgery. My anaesthetist was a lovely lady and she said although my lung function was a worry, she was more concerned with how fit I was and when I told her how hard I'd been working in the gym and swimming even since my drop she said she thought I was going to do very well! They were all obsessed with the fact I taught fitness pole dancing, thinking it was intriguing and required a heck of alot of strength and fitness. Which it does, I'm glad people are starting to realise the full implications of fling myself around a pole!

So I was first in, being the most complicated, I lay there being put to sleep playing my own little game against the anaesthetic. I went off to a blissful little sleep.

When I woke, I was calm and felt happy, I knew everything was ok. I knew the nurses were there to help me and make me comfortable and someone layed a blanket over my chest and told me it was for the pain as my lungs would be sore because they had pumped alot of air In my tummy that would be causing pressure. I usually panic when I come round but I just felt a huge sense that everything was ok.

I spent a night in st Mary's where I received alot of great care. I was in alot of pain because of this air in around my lungs and felt like they were collapsing. This was partially my fault as I hate pain meds so try to not use the Pca (morphine pump you press when you want pain relief) I'm also really allergic and had a severe eye infection after itching my eyes to much. I eventually realised I needed the pain relief and was getting myself more in a pickle when I didn't use it. I was also scaring the on call doctor with my cries of pain. I met a older cf guy called tony, he was also from harefield and had a transplant and was there for a fundo. We had a lot of laughs and talked about all sorts. I'm really glad I got to meet him and if you reading this tony, drop me a email.

I was then transferred to harefield with what was the dodgiest ambulance driver, no nurse, no pain meds and 2.5 hours of getting lost with the foulest language ever, unfortunately I got to harefield very shaken and collapsed on the way into the ward, the most embarrassing moment of my life, my legs just went, my husband caught me and the nurse all ran round panicking. I was in tears and just wanted to get up, cover my face and run to my room. Stupid legs for collapsing on me. I think that whole journey was just horrific and it drained me. We will be making a formal complaint about the driver.

So I settled In and the next morning woke up, got ready early knowing I was probably going to go home that day or the next, I didn't really need that level of care and would cope at home. Dr carby came in and said the same, he was very chuffed my op was minimal and said I could go and that was Wednesday.

Iv been chilling out going down the beach, resting making lots of soups and other puréed foods, I can't eat nearly as much, struggle to drink squash the most, it's agony. Have to eat 4-5 small meals a day and feel full at the end of the day with no need to eat anything. Now I can tell you it's a dramatic change, I love food, in fact I'm usually obsessed. So this new diets weird, It's nice as a little experiment, blending foods and tastes but I can see it is going to wear thin at points. I'm not suppose to be able to be sick and I know my surgeon didn't want me being sick, but I do find food gets stuck and then I bring up mouth fully of puréed food up over a space of an hour, it's very painful like awful intergestion, things you think would be ok aren't. Drinking liquids is really hard and I find tea the easiest as its warm and you sip it. Anything to hot or to cold is horrid and painful!

So over all, how do I feel? Well I'm nearly off pain meds now, although I'm not being stubborn any more if I need it I need it and I give in to a little oramorph. Mainly, grateful. I still don't know if my lung function is going to recover but iv got the best chance to make it happen. The surgery was beautifully smooth and I think the surgeons done a cracking job on the scars and there placement to make ab recovery easiest. I feel like all this frustration over getting the op arranged everyone came together and did there little bit of the puzzle and worked very well. What more would I ask for? I'm also chuffed to know that all my hard work on fitness has paid off and made the process much easier as the anaesthetist confirmed. That makes me really happy.

So now I'm looking forward to making maximum recovery and getting things back on track, I hopefully shouldn't need as many Ivs now as the reflux was causing lots of infections and I should have a good length of time away from admission. Fingers crossed.

I just want to leave you with something my hubby said 'whenever they open you up I think they let a little bit of sunshine out, because the weather is always good and you are my sunshine baby' I love it when he calls me sunshine baby, it just makes me feel brighter.

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Flu, recovery and mini break

So sorry everyone for being a bit slack, my last post was after my bronch where I was told I had a fungal infection. It turned out i actually had flu! Which thinking back makes sense, chest pains, really struggling to walk anywhere or do anything on the Friday and my lung function was down 40%. So I was put on immuno globins, methyl pred, tammi flu, colomycin, tobramycin, posaconazole and put in isolation due to the methyl pred making me very immuno suppressed and also being on a transplant ward with the flu obviously I was highly contagious and risky.
The admission continued to be absolutely awful. The drugs gave me terrible side affects leaving me feeling awful. My joints became loose and would randomly pop out of place causing horrendous pain, my diabetes went from virtually none existent to making me feel physically sick due to high sugars that weren't controllable due to methyl pred. I felt bloated the whole time and ate loads. My skin seemed translucent and I felt just dreadful. The methyl pred made me feel like I was on edge and a group of people seemed like buzzing bees. Being in large crowed places when I had my face mask on was a no due to the sheer anxiety it brought. By the time it came to going home I was practically running out the door screaming even if my lungs weren't quite up to it yet. I'm pretty sure I had to check myself and make sure I didn't just start running.
I managed to escape last Tuesday which was a complete shambles. I was told I would be going home Monday to find out transport was not arranged, neither was any of the tests I needed before I left arranged. I spent Monday running around trying to sort it all and feeling extremely fragile. I did not go home Monday but I was moved to the family accommodation 'for my own benefit' in other words cutting costs and leaving me on my own with no one around when I was really not well enough because they wouldn't fork out a extra few quid for my mum to stay with me or to send me home that day. I can certainly say there was nothing about park wood that was for my benefit. So Tuesday I headed home on transport and proceeded to spend Wednesday and Thursday in my local having bloods done. My stomach stopped working and my kidney function was off but although I spent a length of time in the hospital I was glad to finally me home and back where I felt comfortable.
Friday finally I started to feel normal, my sugars were getting better my renal function picking up and the high dose steroid were coming down! Those things are toxic and possibly one of the worst drugs ever! I describe being on them as having a battery shoved where the sun doesn't shine and you spend the rest of the time having your body trying to vomit them out your mouth.
So feeling much better but due back in Harefield Monday me and stu took a mini break driving via the coast and then up to Harefield. Leisurely stopping where ever and having some us time. I cannot express how much I missed him so a little us time was needed. When I'm away from him I tend not to talk to him very much and when I do I make the conversations short. It's all part of my survival tactic. If I shut him out it doesn't hurt as much that I'm not with him. So we went to the cinema, bowling, shopping in various places and eating lots of food! (High dose steroids still affecting my appertiate).
So clinic Went well after over a week in Harefield and not seeing one consultant I actually saw the main man him self (never seen him in clinic before since having my tx) I panicked at first when I knew I was seeing him, I wondered if I had done something wrong or some results had come back but no I think it was just one of those occasions to catch up on how ide been since tx and that I was actually quite poorly when I left and the nurse who organises clinic realised I was struggling to stand due to being short of breath. Always a good reason to make sure everything's ok. But yes actually I was doing really well, the few days away had done me the world of good, my breathing is getting back to normal, I'm still not quit there but recovering quickly considering and all in all It was a good meeting to touch base on a few things and made some of the confidence come back I had perhaps lost in my health due to being so poorly this time.




Me and stu before clinic
So all in all I'm ready to get back to the gym and start kicking ass! I was gyming 5 days a week before this, pole training, aerial acrobatics training and yoga. I full expect to be back doing all of that over the space of two weeks and also to cut down the copious amounts I'm eating, which to be fair iv not gained any weight on the steroids but lost it, but I can't live eating this much!
So now I'm back home, teaching but I still have a week off from next which is great as it really gives me chance to get my strength back. So a bit of a long slog of a blog. I will update soon on my progress getting back into my hectic schedule!
P.s I did ask stu to prof read this but he protested saying he likes to read it when he's on the loo so sorry for any mistakes! Lol
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Bronchoscopies, fungus and home sick

Today in harefield hospital I had my bronch, a camera was put down into my lungs under a GA they were washed and for the first time ever a biopsy was taken. The biopsy is checking for signs of aspiration (reflux meaning I need the fundo op) chronic rejection, acute rejection and antibodies rejection (I have developed donor specific antibodies).
Waking up form my bronch coughing spluttering, feeling like I was suffocating. Mouth fulls of flem were suddenly flying out my mouth, all I could think was I thought they were suppose to wash this crap out and I'm pretty sure none of this was in there before! I was still coming round but trying to sit up, the GA wouldn't allow me to by body was limp. They sat me up I was panicking, I had a 02 mask on and they just kept reassuring me I was ok and my sats were ok. After bring up loads of flem I was taken Into recovery. Then moved on to the ward. The rest of the day I spent in and out of sleep.
The doctors came round and told me they were pretty sure I had a fungus again Last time I had a fungus this time it was all In my right lung again, that although my ct didn't show a collapse all my lower airways were collapsed due to the amount of thick flem blocking them. So I'm now on caspafungin iv (spelling?) I don't know if I will undergo repeated bronchs again like last time but fingers crossed this drug clears it all up. I am on voriconozole permanently since my last fungal infection but in clinic last my level had dropped even though my dose had not changed so now there waiting for my level to go back up and hopefully this should all clear up.
My lung function yesterday was 72% so still on the up but a long way to go to 97%, I couldn't do it today due to the biopsy. Also since being In here and eating all the wrong foods and being fairly sedentary compared to my usually routine of work for 6 hours gym for 1 1/2 then teach for 3, some how traveling from work to the gym to home and eating in-between this all. My blood sugars have had a hissy fit. My body also doesn't agree with GA s so hopefully after a few days my sugars will start to get better.
For now I'm hoping to go home over the weekend. I'm missing my little ball of fluff (Kia) and my hubby. I can't wait to have a day with them Sunday. So fingers crossed!
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Exeter hospital to Harefield hospital

So my Ivs didn't seem to be working and yesterday in excruciating pain and lung function at 62% fev1 from 97% I rung Harefield, they advised that I wait till Monday and be reviewed in clinic. Well by the end of the day I couldn't handle the pain and developed a temp of 37.8 I decided to go to my DRs and get pain relief. They decided they were not happy with my numbers and I was to be admitted to exeter hospital with a view to go to Harefield on Monday still.

Since being in my breathing has improved and my numbers are up slightly at 69% the pain has gone as has the temp. Iv had a X-ray and ct scan both showing 'change' various different shadows that weren't there before. Harefield have now decided to have me up there tomorrow and I will get 'ambulanced' up, I'm not that sick but it's just there way of transferring me.

As I have said with any blip you wonder what the cause is, is it really infection? or something more sinister? you wonder whether this is the beginning of the end? you can't help worry those things but I'm sure whatever it is is treatable and will be sorted out ASAP and in a way I'm glad to be going to my specialist centre at least they can deal with it efficiently and make sure all the 'other' possibilities are ruled out.

I will keep everyone updated through Facebook, twitter and my blog and thank everyone for there continuing support.

Also here's the link to my itv piece http://www.itv.com/news/westcountry/story/2013-02-12/from-the-heart/

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Valentines day in bed

Well I wish it was that sort of in bed ;-) but no. On Sunday I had an awful virus and since my lungs have continually got worse. Tuesday I decided to ring up and get the ball rolling on IV antibiotics. Like I said in my last post my lungs haven't quite been up to par recently any way. So I started Ivs yesterday. Colomycin and tobramycin two drugs that preferably should not be had together as they are both harsh on the kidneys. My lung function is down a fair bit form 97% to 70% although 70% isn't a bad lung function, it is a huge drop and my lungs feel riddled with infection, my breathing has just got worse and worse, I'm wheezy, breathless, in a fair bit of pain and exhausted (the Ivs have contributed to making me even more so) This morning I couldn't face going In to next for my shift and I know I can't tomorrow either.

I know this is just a blip, like the many others and I will overcome it. I can't help feeling like pseudomonas is out to get me again and I wonder why I'm not able to get rid of it like other transplant patients, I do my treatments, I stay fitter than most but this bug seems set to haunt me forever. I guess when the do my ct scan they will find out if its caused any permeantIy
damage yet.

I hope you are all having a lovely valentines day and even though I'm not well I have stu here looking after me a rare event as he's usually working all the hours under the sun. He's also spoilt me with breakfast, presents and generally being very helpful.




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Poorly lungs

Feeling paper thin, weak and tired. My stomach twists and turns. Every fibre of my body feels exhausted, my limbs have become heavy. I curl up, I close my eyes, hoping when I open them again the sickness will be gone and the room will have stopped spinning. I don't remember Meropenum and tobramycn making me feel like this before?

I started IV's for my chest infection, My lungs don't feel any better, constantly coughing, I go from coughing up loads to unable to cough up anything, not because its not there but just because I can't, I can't move the flem, I can't feel where it is, The still foreign feeling of these lungs are there, Its strange as we seem to work so well together, but as soon as they are not well, I feel so un used to them.

Its not getting any better, the sickness, the infection, my body feels so weak, all energy sources feel depleted, despite eating lots the last few days. I cannot eat today, I cannot think of food, just the thought brings my stomach into twists and turns, begging me not to lay food on top of it.

Pain, there are pains, pains in the bottom of my lungs, scar tissue in the lining of my lungs from the operation that's been irritated by the infection, as I take a breath in the sharp knife intrudes deeper.

Reading this you would think it was a pre transplant blog, but its not. I hate feeling like this, I hate writing about it, complaining about it, but well, I still get ill, I just hope this won't last much longer and I will be back to enjoying my life. But for now, I'm going to curl up and watch the Olympics, Inspiration for when I feel better.

Something on my mind (none transplant or CF related)

I feel so angry today, so hurt and wounded. This is going to be somewhat of a cryptic blog but it’s about my feeling from past events.

I feel angry, angry at the person who created this situation, who wounded my family. The deceit and damage it done, I wish we could all forget and move on. Its not something we dwell on but every now and then, the damage becomes apparent.

I want to scream at them, I wish I could hurt them so badly, in ways I guess people wouldn't think me capable. The destruction is devastating and something that I wonder if it will ever heal.

I’m ok, I can forget, I can escape, but I guess it wasn't me it mainly affected. But today it feels like the pain is piercing me through the heart again. As I was reminded of the hurt, when I realised someone else was still in pain over it all.

Sometimes wounds just don't heal; they close up and are ripped open ever now and then.
I don't know why I have reacted like this, the reminder of the pain was days ago and usually I’m very unaffected by them, cold and almost distant to the fact, its like I forgotten and it all happened to someone else, I guess maybe I thought things had changed and others had moved finally moved on. I just wish I could take there pain away but I can't and that’s the hardest thing.