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.

Bronch Bronch and more Bronchs

Well, I was re- bronched Tuesday and was hoping I would be sent home today. Things have not gone well. The bronch was far less painful; I think I was given some form of opiates. When I came round this time I was far less distressed although very tired and sleepy, but I was tired before my bronch. No throat swelling this time or vomiting, thankfully.

Two hours after I was ready to head out, I needed to see the sun and feel it on m skin. The sun always makes me happier unless I’m not in it.

I briefly saw my consultant in the canteen and she told me 'no wonder you can't cough your sputum up its it like cement' But that was all I heard, so I didn't have a clue what was going on till this morning. I hate not knowing, not knowing if I was going home, when I was going home, would it be Wednesday or would they decide to keep me in.  I had spent all of Tuesday hanging around in a grump not knowing what was going to happen, finally Wednesday came, The consultant came around and instantly I was told my flem was far too thick and they had a real hard time hovering it out of my lungs and despite feeling better for it I would feel rapidly worse if they didn't hover it out again.

I’m now on salbutamol 2-4 times a day atrovent 2-4 times a day NAC 4 times a day Pulmozyn 2times a day, hypertonic 2 times a day and tobi two times a day. Yes hefty Neb regime but I need to clear these lungs. My right side is the side that’s filling up. I’m worried about it now. Will I get rid of this fungus? I’m also on IV antibiotics to keep my pseudo at bay which is apparently still lurking around and yep I’m being re bronched Friday,

I have been so moody this last few days, me and my mum get on each other’s nerves after being together for too long, she’s my best friend but when you have to spend so much time with someone in a confined space than your both bound to get niggly. Today my body is an aching mess, my neck, shoulders and back are hurting. My jar feels like they dislocated it and my throat is a mess. Bronchs may work but they are a painful way about it. I feel the aesthetic is taking a toll on my body. I have propafol the same stuff Michael Jackson was having and I will tell you now, I don't know what he liked about it. Waking up with a hangover is not my idea of fun.

So tomorrow, my wonderful hubby is driving up to see me for the day with our puppy. I’m soooooo happy as I miss them both so much, we both disgusted how we didn't think we had the money with me not working but I think we both decided it was beneficial to us and we needed to see each other, As grump bum syndrome was taking us both over.

I’m very sorry to anyone who has had to put up with my bad moods, but it’s really hard being away from your husband, your other half and not feeling well. There’s nothing you can do but sit around and yes I am worried, I’m worried what this means, whether I’ll get rid of it? Will I be a permanent wheezy mess unable to exercise? I’m going to have to reschedule my EMT(exercise to music) course now as there is no way I’ll be back the weekends and I don’t think I can catch up on that much practical, even If I could make it back, my lungs aren’t going to be up for it. I feel devastated and scared that maybe this won’t work and I won’t get back to my best.

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

Auntie Kirstie

I want to share with you all my brothers great news, His first child arrived into the wolrd last on the 24th. A tiny baby boy. He has Big hands and big feet and wieghs  5lb  13 ounces. Hime and his fiance could not be happier.

I had the greatest privelige anyone could have, I got to name the baby. Chris and Caz asked me to name the baby  not long after they found out. I remember sitting there and counting what month it was due and I really thought I was never going to get to see him. I was heart broken. I took some time and with a great lot of thought. When it came to the names I wrote them in my notes on my phone. I remember thinking I have to tell him the names otherwise I won't get chance. I wondered whether the baby would know about there auntie. If my brother would talk about me when Im gone, I didn't think he would, i though it would be to painful for him. My brothers a very loving person and I don't think he could speak about something that could hurt him so much.

Any way the names were Kiera my baby name at which they decided to call it Kiera Kirstie Mills if it was a girl and Luke or Riley. They decided they liked both so Luke Riley Mills.


So Welcome Luke Riley Mills. Im so excited to get to know you.  Auntie Kirstie

Tears running down my cheeks as I look at him laying there silently. The smallest bundle of Joy. How can some thing be so perfect. I hold him his small body in my arms and kiss his head, breathing in the baby smell. Hes so warms and new. I rub my cheek up against his his skin is so soft. The tears are still running down my cheeks. Perfeftion.