HOME!!!

So my Hubby travelled all the way to London for the day and bought the dog with him. I was so happy when I woke Thursday morning and text him to find out when he was setting off for his 3 hour journey, to which he rung me and told me he was about 20minutes away.

I dropped everything and rushed to beautify myself and make sure I looked as pretty as possible as I wanted him to be happy to see me and not forget what a wonderful wife he has while I’m away.

We went for breakfast and I finished off my neb regime, which is now even more ridiculous. 9:00 Pumolzyn Hypertonic, NAC, Atrovent, Salbutamol, Tobi, 14:00 NAC 18:00 NAC 22:00 Pumolzyn Hypertonic, NAC, Atrovent, Salbutamol, Tobi!!!

Then we went for a drive to find Ruislip Lido, I'm getting pretty good at finding my way around London without a SAT nav but I think we ended up in the right place by sheer luck this time as my directions were awful. We walked around the lido, with the pup and chilled in the sun. 1.2 miles around the lido and then we were off back to hospital for my IVs and neb.

We then headed out to lunch, I had a nice Thai chicken curry and most of a massive dessert, rock road covered cookie!! It was huge.

We went for another walk around the lido another 1.2miles and then before we knew it, it was time for Stu to head back. I was so happy to see him but he reminded me that he had Saturday afternoon or and Sunday afternoon and there was a big family get together for his brothers engagement, which I was missing this weekend so I was gutted.

So that evening I walked my friend Neil around the hospital, with his Mum Cath. He was at the hospital for assessment which went really well. I wore a mask the whole time, so I didn’t catch any nasty’s. We used to always mix pre TX which is very naughty of us and I don’t advise it to anyone, but we were always careful when it came to coughing ECT.

The Friday morning bright and early I was taken to the theatre for my third bronch. I warned them my throat was quit damaged and sore, so could they be extra careful this time. I have a large haematoma at the back of my mouth/throat. Off I went to sleep counting down the mils of propafol. I got down to 7mls!!

I woke up this time, no pain, no aches and my 02 being taken off straight away. I knew things were much better. I was wheeled back to the room; my mum was on her way. I decided I needed to get up and dressed and head to get something to eat. A vast improvement each time!!

Once I came Back I got the great news, I was going home that day!!!! My Broch was alot easier to shift and my lung function is up to 87% and 92% roughly another 10% to go but a vast improvement. We waited around for a few things and then hit the long road back to Devon, me chilling in the passenger’s seat with my sunglass’s and shorts. Home to my Husband and Puppy.

A whole lot to update

 
So I drove down to my Dad and Step Mum Nicky's on Wednesday. I had had some awful new that day that my nephew Lewis, my Eldest brother Lees baby, who's nearly 4months old, was sick and in peter pan ward Hillingdon hospital. This is where I used to go for my CF care as I used to live in around this area till I was 9, So me and my Mum who came up with me made our way straight to the hospital. My Brothers Children Nathan and Amy, Philip and Lewis were all there and I hadn't seen Nathan and Amy in years. It was so nice to see them and they still remembered me which I was surprised about, or whether they just knew a lot about me from my brother so they said they remembered me. Either way it was so nice to see them.

Lewis Has failure to thrive, he tastes so salty if you kiss him, he's vitamin D deficient and showing signs of liver problems. He was having a sweat test for CF despite having the heal prick at birth. My brother is a carrier, but his partner had never been tested despite telling her GP about Lee carrying the CF gene. I was so worried and felt devastated at the thought that he might have CF, I felt so drawn to be near him, feeling that maybe I'm the only one who really knows what might lie ahead of him. I'm getting much better with babies and I'm enjoying auntie cuddles with them (don't misunderstand me I am still not maternal) The tests came back negative, I'm so happy about this, but there’s still this nagging feeling. But I saw my old CF nurse form here who I am still in touch with and she said it was very negative. Despite this, there is still something wrong with him, I just hope he’s better soon and it’s nothing serious.

Peter Pan ward is the last place I saw Debbie, It was nice and upsetting at the same time.

Wednesday night I went and chatted with the lovely Sophie, she is only 3 weeks post TX but is far more together than I was at this stage. Here's a pic of us together. Doesn't she look great! Sophie is only 17 but she has a chance at life now.

Clinic on Thursday, I did my lung function 68% fev1 and 77% fvc it was 97% and 104% in last transplant clinic, I knew they would have to bronch me and sort this out asp. I was happy that the results reflected the same thing I had been experiencing in Exeter as I didn't want to be sent away for it to keep happening and not get sorted (camera to look into the lungs and take samples of tissue for rejection and wash out and flem or plugs, these are very beneficial post TX but not very successfully pre TX CF). I don't want damaged lungs again. I came back the same night for a bronch the next day. On re entering the hosp there were lots of fireman and one eyed up my mum and asked if she was ok, the silly women said yes, half way down the corridor I said 'why did you say that we could have done with a hand', 'oh yea could have bagged a nice fireman' she replyed as she turned round to continue to walk a wall of fireman were walking toward her, I have never laughed so much, we then met one of my nurse on the way, but I started laughing so much I was coughing really hard and then vomited from the irritation, I felt like my throat was closing up and kept vomiting and struggled to breath, I had already vomited 4 times on the way there due to coughing. The nurse rushed of and got me a wheel chair and wheeled me to the ward, I was put on 02 for a few seconds, My sats are still good but it was a horrendous coughing fit and my throat was closing up due to the amount I was being sick.

Friday, ready to be bronched.

It was possibly the worst Bronch I’ve experienced, I'm pretty sure I woke to them removing the scope and remember being very sick, I also remember coughing up a fair bit of blood. I had 02 on this is very common post anaesthetic and bronch thought, but I hate the leash. I felt sore

I had to have hydrocortisone as my throat started to close up straight after the bronch as the scope they used was HUGE, the secretions in my lungs were soooo thick, they needed a large scope otherwise they blocked the bronchiscope. The doctor came to see me a bit later and said It looks like a fungal infection and we were starting variconazole, also I needed to restart dnase, at which i said I'm still on this and did tell you yesterday, so we’re adding in hyper tonic saline and lots of bronchial dilators.

A few hours later and I was much better.

Saturday I was allowed out and spent the day with my step mum, did a bit of shopping in the lovely sun and bought a new sun hat to shade me as I'm not allowed in the sun due to immune suppression can cause a higher rate of skin cancer and I'm also on 2 drugs that when you just look at the sun you burn.

We also went for a walk around Ruislip lido, this small slop here I struggled to walk up post TX, for the first time I could breath but my legs were sooo weak and I'm proud I did walk up it, it was a huge achievement at the time, But now I can easily walk around the whole of the lido in 30mins at ease, I have come a long way.

I also spent another lovly day with her today and went and saw my dad.

I still have so far to go though, to become the person I want to be, the things I want to do with this great gift. I may have a small hurdle at the moment, but I will overcome it and this wheezing breathlessness with go away. I won't let it stay. The reason I want to do this, one because I love life, two because I want to achieve so much, three because I want to do it for my donor, four for all those who don't get this chance.


My beautiful friend mad's

Mad’s, is a brilliant girl I love her so much, her sense of humour is purely kick ass and she is undoubtedly a fighter. At the moment she is fighting for her life on ECMO, unable to have a transplant. I know ECMO is a horrible place to be and if you asked me if I would do ECMO again I'm not sure, not now I know what it’s like I don't think I could do it. So my sleeping beauty is a fighting battle not many understand and if she does by some miracle pull through, it won't be to a magical world of possibility that I woke to and even then it seemed bleak, it will be to the same pain, agony and suffering. I love her and I don't want her to be in pain. But I don't want her gone either, but that's for my own selfish reasons. I wish I would wrap her up and keep her forever. But that would be wrong. All I can say is mad’s do what’s right for you. I love you forever, the short time we were friends I felt like you understood me like no one else and I think I understood you to because you had been through some of the things that very few understood. Thank you for being my friend. 

Also Stuart,

I found this picture of Stu on his profile, it’s not quite how I knew Stuart but I think it’s a small window of time where he'd want us to remember him by. When he was well. I knew Stu since about November. He was declining after his transplant and unfortunately never recovered. He had a small window of time where he got to feel the freedom of life without CF lungs and their limitations, but it wasn't long enough. Stu passed away this morning in Harefield, I could have gone and seen him in ITU but I had this Fungus and I didn't want to share it with him and make him Sicker. We always had such a good banter, I will miss him, but hoope somewhere he is for once breathing easy.

So a long update with lots of thoughts. Tuesday I'm being rebronched and I'm hoping to go home that night to my husband and little girl Kia. I miss them a lot.

Wheezy Painful Lungers

So last week Stu was off and we hit the gym hard, I felt really good for it although started to ache a lot with DOMS (delayed onset of muscle soreness) I also knew my lungs still weren't right and were niggling at me the whole time

Then Saturday I had a training session for the bike ride, I felt really good and set of to meet a couple of others who were taking part. We had a talk through bike safety, comfortable seating positions and went for a little ride along the quay to figure out gears. Here's me with my posh gear.

Yes very pretty bike! You can sponsor me here http://uk.virginmoneygiving.com/team/kirstiesbigbreathbikeride I ask you also to share this link on twitter, facebook anything!!

I also had the start of my practical for ETM on Saturday that’s 11:30-18:00 of practical work on aerobics lessons, it was a killer. I was going really well to begin with and felt fine, then it came to the last 30minutes and my lung had a huge hissy fit, lots of coughing, extremely tight and I was struggling. I was sitting down coughing and ended up vomiting into my hand, I hope no one noticed as I ran out of the room. I was mortified. No one said anything if they did, but I felt so embarrassed and dreaded walking back in. That night I went home and tried to rest as much as I could. I ate everything in site as we did around about 4-5 hours of aerobics in the end, it was low intensity as we were figuring out our warm ups but do you know that burns around about 2000calories, then we had to teach them to each other which I would say was medium intensity as teaching uses so much more energy as your trying to talk and do it at the same time and you have to be correct on all your moves. So in all I probably burned around about 2500 cal’s!!! That’s huge. I was really hungry as you can imagine.

So Sunday came and as soon as I woke up I knew I wasn't doing well, I got ready and headed to my ETM course, I managed the exam for the warm up but had to finish before the song was finished as I was to breathless, I managed to fit in everything I knew I needed for the exam. Then I said I couldn’t do anymore as I was to breathless, can you imagine that, your at a exercise to music course saying yea I teach fitness pole dancing and I also want to be a fitness instructor teaching studio class's but I’m to breathless to finish a song!!! The thing is I know I’m fit enough to do this! I can do this easily, but something is wrong with my lungs.

We then went through the higher intensity moves, which really wore me out and was a lot of hard work, my joints also started to play up because I was getting a temperature. So we went on break and by the time we came back I had decided I needed to go home, I couldn't even just stay and watch I felt really ill. My lungs were starting to really hurt.

I went home and slept and ate again.

Monday came and I knew I wanted to be heading to Harefield, this didn't happen, to my dismay. Instead I went to Exeter hosp to see my CF team and they did all the necessary test my lung function was back down to 69%, my sat's were 95% from 100% which I know is still perfectly fine but it bugged me. I wanted that 100% mark. My blood test came back normal apart form one slightly odd figure, which could be nothing. But no infection levels, my sputum cultures from before were absolutely normal, they grew nothing. So I didn't even have an infection which we thought I did. I had excruciating pain in my right lung and had an x-ray which did show some shadows in that spot. So my consultant rung Harefield and said I defiantly needed a bronch as He wasn't sure what was wrong and was perfectly capable at firing antibiotics and good knows what but It wouldn't help and he could also bronch me but didn’t have the facilities for the samples. So they agreed to have me up in Thursday for clinic and I’m hoping a bronch on Friday. I’m really not the type to push to go to Harefield, there always spot on but most of the time I would rather stay at Exeter and let them treat me as they know what there doing and I can carry on working. But this time, I think its something else, possibly reflux and I want it sorted ASAP so my shiny aren't damaged and the quicker I get seen at Harefield and sorted the quicker I can put this behind me and teach and do my ETM.

This morning I feel much better and I also know that reflux works in these sudden drops, so its really making me thing it is. I don't feel like I get a lot of reflux anymore although I have a tiny bit recently and I am on all the medication that stop the symptoms, the problem with that is you still get the reflux coming up and spilling in to the lungs which causes damage and inflammation and imflammation is part of my big problem at the mo. If this is the problems then I need an operation on my stomach to stop it. Everyone says it’s a small op, but 6hours to me is quite a big operation and after ward you can't burp so no fizzy drinks otherwise it becomes painful and you can't eat as much either.

So anyway, I will soon know what’s annoying my puffers and well and truly squash it!!!

IT WILL BE MY WAY

Well Monday wasn't to bad, I went to the gym, taught some lessons and had a play on the pole, but by the evening I was wheezing, I was really struggling to get my breath in and started the nebbing routine. I haven't been wheezy like this since pre transplant when I was very sick, so Its scared me quite a bit. I did salbutamol, atrovent, pulmozyme and bramitob, but none of them barely touched it. I went to sleep Monday night hoping the wheeze would go. By Tuesday morning it was still there! I nebbed away but still I was struggling, I actually felt a bit breathless sitting down. This really started to worry me. Tuesday is usually me busiest day teaching so I really didn't want to have to go to the hospital, but finally I admitted defeat and went. my lung function had gone from 94% to 68%!!! I wasn't surprised, I felt pretty bad. The wheeze started to ease up but was replaced with a cough and bundles of dark flem. My doctor came to see me and decided I wasn't even allowed home to pick up my stuff as I had deteriorated in the space of 24 hours and he didn't know if I would carry on deteriorating at the same rate, if i did by the next day my lung function would be in the 30ies, the day after that there would be barely anything left! A really scary thought. I was hooked up to an IV antibiotic, every blood sample you can think of was taken, urine samples, the whole shabang. I was wondering whether I would be taken to harefield at this point as I was in exeter my CF centre. Mysteriously by the next day though I had improved alot! No wheeze! My lung function was back up! So after consulting with harefield they were happy for me to stay in Exeter.

Wednesday I suffered with my weird stomach problem, where my bowl just 'ok, iv had enough' and switches off, very pain full indeed. I sicked up litrally everything I had eaten and that was alot due to boredom. I put this down to my sugars going slightly loopy as I was ill, my bowl does it at any slight imbalance in things like sugars, electrolytes, magnesium's and so on. So paracetamol drip hooked up as I vomited away. As soon as the pain went so did the vomiting. I also decided that I would ease up on stuffing my face at this point, all the food wasn't really helping the situation and it wasn't helping my self esteem, I felt like a heifer lump and thing I must of also suffered from fluid retention as no one can put on 5kg in 3 days and drop it in 2.

Thursday the wheeze was back and I spent the whole day being frustrated and angry, stropping at my mum who was only there to help me with my ball, which was being slightly neglected, but is now very much back on track and I urge you all to email me if you can contribute a raffle or want to buy tickets, kirstiemils@hotmail.co.uk Any way, I was so frustrated as I didn't know what was going on, my body was out of control and there wasn't any answers I felt like I was in a vortex and being hurled back to pre transplant days. I was scared, something I don't often say, but I was.

Then Friday the wheeze was still there in the morning, rasping away and irritating me. Old man in lungs syndrome is the most annoying thing ever, I tried to cough the wheeze away which is stupid as it only makes it worse, you can't cough a wheeze out, its not flem! So I took my nebs and it actually went. I decided to go to the gym with stu, I wasn't sure whether it was a good idea, I could end up a wheezy raspy mess and be even more frustrated but I had to give it a try, my feeling of umpa lumpaness was still there and I need to get ride of my frustrations. It did me the world of good! I did level 11 on the bike that's a 3 level jump and i did that for 40mins. I was wheezing on and off, but by the end it had settled, I did my weight's, stretches, core and i used the brand new vibration plates, which when used correctly kill!

So there I was not thinking I wouldn't be escaping for a while and the doc comes in Saturday and yay I was allowed home on oral antibiotics, his words were 'your not the patient are you'

So what caused wheeziness, some random bug we don't know the name of yet, but it wasn't my pseudo, this is good news, It may mean we have got rid of the dreaded pseudo, as it didn't show up in any of my cultures. The bug I do have is a different sort but easier to handle and once its gone it should be gone for good, no colonisation like pseudo, cepacia or staph. I'm hoping it ate my pseudo up and took it with it. So lets hope both are gone. I am now on a wide spectrum antibio for 5 days.

What has this admission done, well certain aspects made me think back to my whole journey and the decisions I made, would I make the same ones again a second time round? Its hard to say until your right there in the situation.

When I first thought of transplant I was no where near needing it but thought instantly I would never have one. As soon as It came round that it might be a possibility I decided yes, yes I wanted to live. I wasn't ready to die. I wonder whether I would be able to do all those things again. I'm also very much aware that the UK as a general rule don't do second transplants, I think there are obviously exceptions to this rule. So I guess the the situation I would be in would obviously dictate my decisions. One of my nurses said 'when I sent you off in that helicopter, I was worried I was sending you to someone who couldn't give you the death you deserved' By that she means a 'nice' death, as pain free as possible, no suffering, going in peace surrounded by the ones you love. It always crosses my mind that had I died it would have been the most brutal of deaths, it still was the most brutal of deaths, I lived my death for what seemed like an eternity. In my mind I died somewhere in the midst of it all. Something no one can really understand, what it is to die in your mind and then have to re learn to live. That was simply the hardest thing.

So transplant is amazing and its given this hope that I might live a long (well long to me) life. That I have years to fill with things I never dreamt of, but theres still this deep uncertainty, this never knowing when its all going to come crashing down around you. What do you do then? I guess you do the same, you face it head on, maybe my decisions won't be the same and the out come will be different. But what ever happens..........

IT WILL BE MY WAY

Past your sell by writing date

Are you past your sell by writing date? I seem to be leaving it to late to blog and the words have disappeared. I have a few fabulously worded blogs in my head but I have left it to late and the words don't flow on to paper in the right order. Usually I am just to tired at the time, to physically exhausted to try and put my thoughts to paper. Thoughts that I want to get out there, but just never seem to be in the right frame of mind to write them.

My Dad and his wife Nicky came down this weekend, he had to have a suit fitting for the wedding and therefore an opportune time to spend time together. Its only when I see my Dad I realise just how much I miss him and Nicky. My relationship with my Dad has not always been the best, I spent 4 years being stubborn and not talking to him. It feels so silly now 4 years wasted when I might not have another 4 years to waste. It was defiantly both our faults though, but it doesn't make it any easier. It upsets me quite alot when I think how close I am with my Mum and Nan, I have such an amazing relationship with them, they are my support system and they know me inside and out and I am so blessed to have had such a fantastic relationship with them, but yet Iv had such a distanced relationship from my brother Chris, my Dad and Nicky. I just want more time with them and I think that will be my biggest regret in life if I don't get this transplant, because I do get on with them so well, it unreal and I love them sooo much. It makes me wonder how this distance was ever really there, but I do know why, something I can't talk about on this blog as its such a horrible family trauma, Its not for me to share. But I blame that for any rifts and faults in my family and like I say I love them so much I just hope I get more moments like the weekend, simple, nothing ott, just about being together and sharing each others company. I think that about somes up what I wanted to say about them and I hope if any of my family read this which I'm sure they will, I want them to know just how much I love and care for them.

Today I had clinic, I am very tired, my lungs are going down hill, shere exhaustion seems to haunt me every corner, but I can't seem to nap, not that Iv had much chance. I did lung function today it was its lowest recorded point 16% fev1 and 17% fvc I know Iv had lower, probably only 10% before, but I was simply to ill to do lung function then. Seeing the figure, its scary, I can simply look at them and wonder how I am even breathing, but I know I will carry on breathing with these mouse sized puffer.

Something I was thinking about this morning in the bath, my legacy, I think we all want to think we will leave something behind and I remember when I read Eva's blog, she was a bright light for many CF sufferers and she had a double lung transplant but suffered chronic rejection and unfortunately died, Eva Knew she was dying in the weeks up to her death and she wrote and talked of leaving a legacy. She did. I hope I can leave a legacy like her and in so many ways I draw inspiration from her and how she created such a whirl wind in her path. Will people remember me? Will I be forgotten easily? I just want to know Iv changed the world in some small way, leave a lung shaped stamp on this world. To read Eva's blog please click here. So on the subject of legacy and changing the world, I had  sign today that I was, a girl I use to travel on the school bus with is now school teacher and she talked about me during a R.E class of year 7, she has talked about me and organ donation and she also talked about me in terms of my perception of god and dealing my own mortality here is what I wrote

Well Interesting question really, I would be happy to answer. I think as a child CF I couldn't understand that god would do something like this to someone so I shunned religion and buried the Idea that god existed, because how could anyone suffer so much if theres a God, right? But on growing up and becoming more mature, I was always interested in religion and found each individual religion interesting and wondered what one was true. I think now I'm as ill as i am and I have to face my mortality, I find it extremely hard to comprehend that there may not be a God, that there is nothing waiting for me on the other side, I won't Breath easy, a phrase people use with CF when some one with it dies. Breath easy, Iv had so many friends die with CF, Its a great comfort to me that they are now breathing easy, the suffering is gone. I have to have faith that there is something out there, a place of peace. I know that if I don't get this transplant then ill defiantly be finding out.

I received letters and card from them today, I liked to think that that means I have implemented a small change on the young lives and that they understand what a illness like CF is, how important organ donation and how faith is important, not any specific faith perhaps but just believing that something is out there for us all a place of peace because I think it can be desperately lonely in times of need thinking there is nothing.

So I think that is it, a long and thoughtful blog indeed.

Bizy Bizy Bizy

OK so again I have been bizy bizy bizy, I am completely knackered to say the least I have been to Devon county show with Stu, Filming for the documentary I'm going to be in, cinema, longleat and finally today hospital.

Me and Stu have started our list of fun things to do on days off and generally just making the most of life, It has been great. To make it all a bit cheaper I have found out about a sneaky little thing that attractions and cinemas try to hide from you, Carers discount. If you are disabled and have someone with you who would be responsible for pushing you about, administering medication and general other carer like things out and about, it means that person can get a discount at most places and that discount is usually half price or free!!! These places don't advertise because they don't want you to really know about these things, but just ask, 'do you do a carers discount' they will be happy to give it to you then!!

Longleat was amazing and I really enjoyed it, we got home and by 6:30 pm I was in bed and then rapidly asleep, I didn't wake till 8:30am today when i had to get up for hospital. I was so tried it was unbelievable. Literally felt like i was unconscious rather than asleep.

Today me and mum ventured to the hospital, change of IVs same as ever Wednesday. I saw my doc and we discussed pegs again as I'm still stupidly skinny and under weight, 50.8KG you may think that sounds alot but I'm 5ft 8" so it really isn't for me. Some how I agreed to have a peg fitted in 5weeks time if I hadn't put on any weight. I guess I finally got to the point where I'm struggling so much with so much I can't be struggling to force myself to eat as well. I struggle to eat now because the shere breathlessness is just to much ot handle. Also as my weight gets lower I actually feel fatter, not fatter really but my tummy starts to stick out more, partly because I am really bloated at the moment as the bi-pap has a tendency to inflate my stomach leading to awesome burps and farts, but that's ok as my farts smell like roses. Partly because my arms and legs get so skinny my cf stomach becomes more sticky outy. So I have given in to the peg, if i can't get my weight up.

We then ventured off to have a little shop and I brought a few bits :-) but my 02 ran out as its been playing up and now I'm back home knackered again and ready for a sleep. Its nice getting out and doing things, but i have literally not had a days rest and now I'm well over due for one. I'm going out for lunch tomorrow and Im having the film crew over Friday to film with me and Stu but the weekend i am litrally going to rest with a few good DVD's!!

My friend Chantelle got her call the other day, I received a text at around 5am and the lung were a good match so it all went ahead at about lunch time. Everything seems to be going well, which I'm so happy about, fingers crossed it Carry's on a smooth ride for her. Me and Chantelle had our tx assessments all around about the same time and she went on the list a week after me, It was great to chat through and compare experiences and I hope I can soon chat through and compare transplant experiences with her soon, providing my call comes. I feels so happy for her, Chantelle has a little boy and therefore I feel it was so important for her to get her call as quickly as she did, so she can start to run around with her little boy!

On a nother transplanty note, here is the last article of the bombardment of articles the express and echo have done on organ donation, It has been a brilliant campaign, where they have included all points of view for organ donation and transplant. The last article is about me again as i am the face of there campaign Finale article also if you search the site for organ donation all the previous articles come up.

That's all I have to say for now, so I'm going to have some snack and a nap as I am exhausted.

Hospital, daybreak and giving up work

Well 6 days off IVs and out of hospital and I am back in Exeter rd&e, my lungs well and truly got the better of me. Struggling to breath, I was unable to stand this morning when my delivery of IVs came and had to sit on the floor while the deliver man sorted through everything. I simply was so breathless I couldn't stand. Iv decided the stairs in my house are now my enemy and I am unsure what to do about it.

By the time I had got back to bed after the delivery I was in a complete state. I was shaking with breathlessness. Unable to even sort my tubing out for my oxygen as I fumbled around panicking. kia curled up next to me and after 20minutes I decided I would ring my mum. she made her way round straight away, there before 9am, telling me enough was enough, it was time to go back to hospital, it was no good that I was so scared to even be on my own and I needed to be in hospital. I eventually agreed after tears streamed down my face as I said kia wouldn't know who her mummy was, she would think my Nan was her mum as she stays there when I’m in here. My mum said that’s not true, I was he mummy and she knew that.
I’m on tobramycin and cipro IV. Were going to try a few new nebs while I’m in, just to see if they make a difference, meropenem neb was mentioned. My doc just wants to keep me at a reasonable level where I feel safe and comfy to be at home.

I really have to say I’m get scared of all this constant infection.

It became quit obvious to me last admission that I was not earning enough money to survive, with barely managing to teach any lessons and the ones I was teaching I feel I am sometimes seriously putting my health at danger as I’m pushing my body so hard, when I physically don't feel well enough. So I have officially closed my accounts and I’m trying to claim esa, if I do teach any lessons it will be with what I’m allowed to earn whilst on esa, but I don't think I will be teaching that much if at all, at the moment, I don’t feel I can.
I’m really sad about this, but I’m trying to think of it as a positive thing, a chance to rest, enjoy time with friends and family. I don't want to just sit around all day, so I may look into studying, or things I can do post transplant. I also really want to concentrate on raising awareness for organ donation.

Also this week I’m meeting with express and echo as I’m now the face of there organ donation campaign inspired by me and doing a follow up interview with ITV west country about going on the active transplant list on the 28th (as long as the surgeons give the a ok Thursday) For those of you who missed daybreak here’s the link daybreak Interview.

I can't wait till Thursday when ill know a 100% that I am going to be on the list Monday.