Thursday, 1 January 2015

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Meeting One Direction, Christmas and the New Year

Hello everyone!

Happy new year!

Agh! I'm so bad at keeping up with this blog; that's a New Years resolution for me - update my blog more frequently! I have lots to tell you :-)! Where shall I start? Hmmm...

A month ago, we asked for a blood gas to be taken, as I hadn't had one done for 6 weeks and I had been having some terrible headaches. We found the CO2 levels to be high (9.2 kPa) which probably caused the headaches! So my parents and I started questioning whether the Optiflow had been used in the right way. After a week of trying to get to the bottom of this, my parents had a meeting with the Intensive Care consultant which resulted in changing the Optiflow settings to higher flows and lower oxygen concentration to help wash out the CO2. That was on the 28th November, after a very frustrating and tiring week! Generally my CO2 levels have not come down much but my oxygen concentration setting has been weaned down from the high 50's to 35%. We also discovered that having a few hours off the Optiflow has resulted in lower CO2 blood level readings. So, I want to get off the Optiflow completely.

I've been on and off a number of antibiotics as usual, including one called Tigecycline. I have been on this in the past, and it is a drug that causes me to be very nauseous. But this time, it not only made me nauseous, it also made me have low blood sugars, high blood pressure and it made me lose weight! Also, when I looked at the side effect profile online, it was stated that one of the common side effects was 'death'!! So I decided I didn't want to be on that drug anymore, and switched to another antibiotic - which also made me feel sick! I've also started more anti-sickness drugs; I have been on aprepitant, cyclizine and ondansetron all to combat my nausea.

On the 9th December, I travelled by private ambulance to London to meet One Direction for my wish with Rays of Sunshine Children's Charity! It was such an amazing day that I will never forget! We got up in the morning and I travelled in an ambulance with my dad, my nurse Carrie (who has looked after me a lot this year and last year), and two paramedics, Sue and Steve. My mum and sister, Imogen, travelled to London in our car. In the ambulance on the way there, I was so excited and nervous! Carrie was playing lots of One Direction songs on her phone all the way there! At one point I was worried we were going to be late, but we got there eventually! The meet up was at Elstree Studios. We were led into the building by the Rays of Sunshine volunteers who were all really lovely, and I met my wish co-ordinator! The room was decorated brilliantly - it looked so magical! A lady dressed as Elsa from Frozen greeted us as we came in, and there were people doing the hair and make up. We shared a table at the very front with another family. There was an added surprise - we met some of the boys from Stereo Kicks, who were on the X Factor. I didn't get to talk to most of them, but Jake Sims (my favourite ;-)) was really nice, and spent time chatting to me and asking who my favourite from One Direction is! After that, it was finally time for the 1D boys to arrive! They came into the room and they were sitting so close to me - Harry was literally a few feet away! When he first came in, he said hello to me straight away - and he nearly fell on top of me! Haha! We had all written questions for the boys down, and we had the chance to ask them a question each. They are so down to earth. A little boy went up and sung with them too! Now it was time to meet them! Harry came over to our table before the photos. He hugged me and was chatting to me and asked if I liked the burgers, to which I said 'I don't know, I'm vegetarian...' And he said I could eat the bit of lettuce in the bun with it ;-)! I went up to get a photo with all the boys and spoke to them all. Liam said he loved my shoes. Harry pushed me in my wheelchair back to my table, but he had to push me back because then we had a photo with all my family with the boys too! And another photo with me, the boys, Carrie and the ambulance crew! I think they were pretty chuffed they got a photo too! All of the wish families got a photo with boys and the chance to chat to them too. It was lovely to see the smiles on all of these brave children's faces - having a great day that they'll remember forever, and just having a few hours to forget about the worries and stress that their daily lives hold. Rays of Sunshine is a really good charity, and they really made sure everyone had a special day! It was time to say goodbye now, I wanted to stay longer! Everyone got a signed t-shirt, a bottle of One Direction's new perfume 'You & I' and two tickets to their On the Road Again Tour next year! I am so grateful to everyone that helped make the day special for me - Sarah (the ward sister), Debs (the ward clerk), Carrie, Sue and Steve (the ambulance crew), my lovely mum and dad (ooh, and my sister Imi too!), the brilliant staff at Rays of Sunshine, and of course the One Direction boys! I gave the boys management a drawing to give to Harry, along with a message asking to follow me on Twitter, and a link to my blog, but I'm not sure they've got to him :-(! I'd really appreciate if you could please tweet @Harry_Styles to follow me @idkharriet_ if you have an account on Twitter! :-) Thank you! You may have seen the article about the event in The Mirror, the Metro and The Daily Mail online :-)! It was weird seeing my photos all over Twitter too (with some people cropping me out - cheeky!!;-)).
















This year I had two AMAZING advent calendars! I don't really like normal chocolate advent calendars, so this year I got some beauty ones! Each day leading up to Christmas you get a beauty product! I had a Boots No7 one and a Tesco Beauty one. I've got a lot of make up and perfume now!

For Christmas I got to go out with my family to a lodge in Cheddar for a few nights, after a lot of unnecessary hassle from the doctors! We told them about a month before that we would like to go out for a few nights at Christmas, and as the time got nearer, we pushed them to discuss it with us. As the time got closer, we pressed them more and more to make arrangements for us to be able to go out for Christmas. With less than a week to go, they finally said that it would be against their medical advice, because I am 'so dependant over night'. We pointed out that we do most things ourselves in here anyway! Then they came back with other reasons such as I would need too large a supply of oxygen for the three days, which we quickly disproved. For nearly a week, they came back with new reasons everyday, none of which stood up to scrutiny. We were adamant we wanted to go out, and told them that we thought they could make it possible if they wanted to, considering we've been stuck in Bristol for six months. Finally, with only a few days to go, the ward sister pulled together all the arrangements for us to be able to go. :-) I got an ambulance with my dad on Christmas Eve and mum and Imi went in our car. It isn't too far away from the hospital - about a 30 minute drive. We arrived there early afternoon. It was the same lodges we stayed at last year for Christmas. I felt much more well this year though. It was lovely to spend quality time with my family outside the hospital. I love my mum, dad and sister so much. They're not just family, they are my best friends too! I missed my doggy, Cookie, though :-(! My dad did my IV cyclizine through my PICC line when I needed it and unfortunately I was sick twice, and both time my NG tube came out, so dad had to put new ones down! But he was really good at it, and it went down really easily! I hurt my foot because when I stood on it, I twisted it a bit, and it still hurts now and is hard to put weight on it, so I think it may need an x-ray!! Hopefully nothing too bad has happened to it though, I can still move it. Despite those few minor things, it went pretty smoothly and I was able to use the Optiflow in the lodge. On Christmas Day I got lovely presents! I got some purple Beats headphones, GHD hair straighteners, a Polaroid camera, remote control helicopter, One Direction tour DVD, Soap and Glory gift set, some clothes, a NutriBullet and lots more! I also got some Bleach London hair dyes, so I'm either going pink again, or purple and blue! My sister got an iPhone and she hasn't stopped using it since! I ate tons of Ferrero Rocher chocolates over Christmas and I even had a bit of Christmas dinner too - we're vegetarian, so I had nut cutlets, roast potatoes, Yorkshire puddings and veg (better than turkey tbh!). Not forgetting the true meaning of Christmas though - celebrating the day Jesus Christ, our saviour, was born :-)! I am so blessed to have an amazing, caring, loving mum, dad and sister, and I'm grateful for everything they have done for me. I'm also grateful to the people who have been supportive whilst I've been in hospital. Whilst many people who we thought we could count on have not been there for us when they should have been, the people who truly care for us have been lovely and very supportive. Some people who are meant to be family have not been as supportive as they should and could have been, and some people who I thought were my close friends no longer bother contacting me, but I've met some really kind friends too, that I know will be always be there to cheer me up when I'm down and who understand the struggles. I think it's really important to be thankful for what you do have, because some people don't have a family who loves them, don't have friends who care for them, don't have a roof over their heads or food on their plate, don't have good health through no fault of their own and who feel very alone. So thank God for what you have got, and pray that everyone who is feeling helpless finds comfort in the new year! :-)




Yesterday was a bit crazy! For a while now, my heart rate has been quite high, but yesterday morning whilst I was still asleep, my heart rate went up to 160 bpm! I woke and it went to 170 bpm, I coughed and my heart rate then went up to 190 bpm! I felt sick so I had my cyclizine which normally pushes my heart rate up a little bit anyway, and it went to 200 bpm! And at one point when I coughed it went to 230 bpm! This went on for about 3 hours. I had an ECG done, and then the cardiologist registrar came up and did another ECG. He found irregularities in my heart beat. A strange thing happened then - when the cardiologist was still here, I had a forceful cough and suddenly my heart rate dropped by 30 down to 150. The registrar went away and discussed this with the consultant and reviewed some of my drugs. Two of the drugs (Aprepitant and clarithromycin) are known to cause heart issues, so these two have now been stopped. 

My liver values have been quite high recently, which is probably due to some of my medication. I have put on more weight, and I am now over 41kg!! :-D

The whole situation about Manchester is pretty frustrating! They still aren't trained on the Optiflow up there, and they are telling us they have no beds available right now, so for now we are stuck in Bristol. Hopefully we will soon be able to go home, as I think it would benefit us all being out of hospital in our new house, where we can have a nice fresh start and hopefully build up my strength and get me well and fit again! It will also be nice for me to get into my school work as I have missed a lot of school, and for my sister to start her new school.

I hope this new year will be a better one, and that I can get better! I would love to be off oxygen and get walking again. Early last year we bought tickets to see One Direction in April 2015 in Dubai and I really really would love to be strong enough then to be able to go on an aeroplane and see them there - it would be amazing! I'm determined to make it happen one way or another :-)! Please pray that I will be fit for then! I hope that everyone has a brilliant year this year. Remember those who aren't here today, be thankful for all God has blessed you with, and pray that you will have the strength to overcome any obstacles in your way. 2015 is going to be a good year!

I have designed some CF Warrior t-shirts, and I will set up a page to order them on this week, so if you'd like to order one, check back soon! I will be selling them for £16.00 each, with £2.00 postage and packing for the UK. I can also ship worldwide, but obviously p&p will be more expensive.



Some of the money I make on my t-shirts will towards making 'hospital packs'. I've had this idea for a while. My idea is to make little 'packs' with presents for people spending time in hospital. The boxes will be personal, with little gifts to make the hospital experience a little more bearable! If anyone knows of any businesses that you think would donate items to put in boxes, or if you would like to make something to put in the boxes, it would be great if you could contact me :-)!

Thank you all for reading!

Love,

Harriet x x x

Thursday, 6 November 2014

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I'm getting stronger!

Hi everyone!

During the past couple of weeks or so I have been continuing to make some progress, although the past week has been difficult because I have been struggling because my nausea has got worse again. I have been continuing to work on building some strength and 10 days ago I walked for the first time in months (since before my last stay in intensive care)!! I know that all of the bed exercises and then the seat-to-stand exercises that I’ve been doing have helped me to build up to this, but I also know that my nutrition improving has also played a big part. I can actually see some quadriceps (front of my thighs) muscle building! It felt so amazing to walk after so long! 


Mum and Dad helping me walk!


A few days ago, I started doing a bit more specific upper body exercise, with shoulder raises, gripping exercises and throwing and catching. It was good, and I feel stronger there than I have for a long time, too.

I last weighed myself a week ago, and I’d put more weight on again! Here’s how my weight gain has gone:-

03/10                     32.3kg
13/10                     34.7kg
18/10                     35.3kg
24/10                     35.9kg

30/10                     36.25kg

My albumin level has gradually come up, too, and was 28 earlier this week :-) That’s the highest it’s been for nearly six months!


Some of my blood results...

Two weeks ago they cultured Stenotrophamonas maltaphilia from one of my samples in the lab. This is the only bacterial pathogen that I have grown this year, and it is a bug that is multi-resistant, and they don’t know if it causes significant lung issues. They haven’t been able to test for antibiotic sensitivities, so I am on another two week course of ciprofloxacillin. Apart from the steno, I am still growing Exophiala dermititidis (the fungal pathogen).

10 days ago, we were told that the lab-tested sensitivities showed that the Exophiala is now “not as sensitive to the Itraconazole (anti-fungal drug)" that I have been on for a long time, and that a newer drug, Posaconazole would be more effective. So, I gave the Posaconazole a go for 24 hours, with a double dosing for loading. Unfortunately it made me so nauseous that I basically couldn’t do anything, including eat or do physio. Because of this I switched back to Itraconazole tablets, but I have had to change to IV Itraconazole, because although I was having 800 mg a day, they still were not reaching therapeutic levels in my blood. I've also gone back onto Caspofungin as I have been having temperatures.


I have started getting red patches and itching all over every evening when my daily dose of intravenous Caspofungin is going through. It has been driving me mad. So, I have started having Piriton to try to keep this under control. The lab tests suggest that the Exophiala isn't sensitive to Caspofungen, but I have been on Caspofungen a couple of times during my time in Bristol, and my chest symptoms have improved, so it seems to be an important drug for me. The difficulty is that this seems to be another drug that adds to a degree to feelings of nausea.

I started weaning down on my Vapotherm settings, and I swapped over from the Vapotherm machine to an Optiflow machine. So far, so good, and the Optiflow is generally more comfortable. I want to keep weaning to get off the Optiflow as soon as possible, so that I can start walking further, and start getting out and about again. I haven’t been out of my hospital room for more than a month.

Some nice things have happened over the past few weeks, too. I watched the repeat of the X Factor the week before last (it was dreadful!), had a cheese ploughman’s at 2am (to add to the X Factor cheese), did some Facebooking, and went back to sleep at 4am (3am, because the clocks went back). My bodyclock is something else, these days! The Halloween X Factor was much more entertaining by the way!




Also, I had some really exciting news. My first choice wish with the Rays of Sunshine charity, which I was previously told would not be possible, is now going to be arranged…I’m going to meet One Direction!!!! I'm so excited! I started up a kind of 'campaign' on Facebook, Twitter and Instagram, to try to get to meet them! Lots of people posted a picture I put together for my  #HarrietToMeet1D campaign, and the mum of a girl with CF who was meant to be meeting 1D through Rays of Sunshine, but had decided she didn't want to anymore, contacted me and said it may be worth contacting them to see if I could take her place (as only one person with CF can go to these meet ups due to cross-infection risks), so I got my dad to ring them up straight away and they said they were already going to offer it to me! I was over the moon!!! I can't wait!





I have started using Twitter again a bit more in the last week. I've had a lot of tweets and follows from celebrities! Here is some of the tweets I got...



























I also got this weird tweet from James May...




What's his problem?!

Today we had a meeting with the doctors about transferring me to Manchester. They suggested that I could transfer on Monday, however it would be a transfer to High Dependency, as they are not yet trained on the Optiflow on the Respiratory ward. They can't tell us how long it will be until they are trained to use Optiflow on the ward yet, so I'm not sure whether I want to go until they're trained because I don't want to be stuck in HDU for a long time when I don't really need to be! It is very much a Critical Care environment, similar to Intensive Care, and my parents wouldn't be able to stop at night either! :-( So, I'm going to try weaning off the Optiflow, starting with having 30 minutes off to start with and gradually building it up.




A card from my friend Lily :-)!

Thank you for reading!

Love,
Harriet xox

Monday, 20 October 2014

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An eventful six months!

Hello everyone!

Sorry that I haven't updated this blog in ages! A lot has happened in the past 6 months...there has been a lot of ups and downs and I've been very busy! At the moment, I am in Bristol Children's Hospital again - I have been here since the 29th of June, the day after my birthday! So, I'm going to update you on what has been happening since I last updated my blog!

In May, I went into my local hospital for an admission, to start NG tube feeding again as my weight had gone down. The admission turned out to be longer than planned, as my CRPs - infection markers - had risen (but only to 16). Because of this, I could not go to the McBusted concert in Birmingham! I was gutted. But the kind nurses and doctors all put some money together (100 pounds in total!) for me to treat myself with! I had a horrible stay in hospital because I was forced to have some really unfair conversations. 

After the admission, I was looking forward to going to see One Direction in concert in Sunderland, however the consultant in Exeter would not give us a 'Fit to Fly' letter, so I unfortunately had to miss out on that concert too...:-(! I did get the chance to see One Direction in Wembley Stadium though! I loved the concert, the boys were amazing! I was still feeling very nauseous though, and near the end of the concert, I was sick and we had to leave early. We broke up the journey to London by stopping by at Cardiff on the way there. I was meant to go to a Little Mix concert there, but I was very tired, and had to give the tickets away. On the way back from Wembley, we stopped over at Bristol.

A few days after getting back home, I had to go back into hospital because my CRPs were up yet again. The day after being admitted I got a very bad gastric bug, which turned out to be the rotavirus. My albumin (blood protein) level, which had previously been normal, dropped into the low twenties (normal is between 35 and 50). 
Because of this, the worry was that fluid might begin to accumulate around my lungs (pulmonary odema). My albumin reached as low as 20, and the doctors said that if dropped any lower they would use a human albumin infusion to bring the levels up for the short term. I was put on Optiflow (like Vapotherm) to ease my breathlessness and in an attempt to "wash out" some of the excess carbon dioxide in my bloodstream. During the following two weeks, I had agonising pain in my abdomen and back. I was put on stronger and stronger pain killers to help my pain. Eventually, I was on lidocaine patches, paracetamol, oral morphine and tramadol, but nothing seemed to even touch the pain I was in. I spent my birthday in hospital and the pain was worse than ever. I didn't have a very good birthday, but I got some lovely presents - my parents and sister got me an iPhone 5s! The nurses got me two big cakes - a strawberry cheesecake and a chocolate cake - but I felt too sick to even try any of it!

Throughout this time my local consultant was trying every day to get an urgent inpatient transfer to the regional tertiary centre where the specialist gastric team are based. While I was waiting I had x-rays ultrasound scans and an MRI scan, and had daily visits from the pain nurse and anaesthetists in an attempt to find something that would reduce the pain. I also saw the Orthopaedic consultant, who confirmed that pain was "nothing to do with muscle or bone" and was therefore likely to be solely a gut issue. It had previously been asserted by both local respiratory consultants and a transplant consultant from London that my abdominal and back pain was largely contributed to by postural issues, which I always felt was wrong, so it was good to get this opinion from a specialist orthopaedic consultant.

On Sunday 29th of June I finally got a bed at, and transfer to, the tertiary hospital in Bristol. The two hour ambulance transfer was horrible, and I didn't have the best of starts on the ward, but one thing that gave me some instant relief from some of the pain was that they switched the tramadol from oral to intravenous. I was suddenly needing more oxygen and my breathlessness was worse. The following evening we found out that my potassium level was 2.7 and my albumin level had dropped suddenly and drastically to 15. I continued to feel worse with my chest over the next few days, and on the 3rd of July, in the evening, I started coughing up substantial amounts of fresh blood. The respiratory consultant on call came to see me and outreach nurses from HDU and ITU also visited. The ITU consultant in charge was also alerted. Thank God, after a couple of hours the blood had reduced a lot and eventually stopped coming up completely.

The following day, Mom and Dad suggested using a few different antibiotics that Mom had been reading some research papers on, and that they thought were worth trying. One of the antibiotics is an antifungal, which has been shown in research studies to work synergistically with an oral antifungal that I've been on long term. Mom and Dad had been asking our local respiratory consultants for some time to try this combination, to try to eradicate the Exophiala. Thankfully, the consultant at the tertiary centre went for it, because I felt some big improvements. My breathlessness got much better, and my oxygen requirement went back down. The results from my blood tests started showing some good trends too. The most exciting one was the Beta D-Glucan, which is a marker of the presence of fungal pathogens in the body. In me this had been extremely high, at over 500 for more than a year. At it’s lowest in mid July it was 66. This was amazing news for me because anything below 80 is considered normal levels! My CRPs had also come right down to 4. 


Back to my gut issues...during the first two weeks in Bristol I had loads more tests and scans, including a capsule endoscopy. I had to swallow a capsule containing a camera, which then transmitted images to a recorder which was attached to a belt around my waist. This gave detailed visual information on every part of my digestive tract...nice! ;-) I could see inside my body with an iPad app! It was very weird!

I was put on on an "exclusive" diet on July 12th, which basically meant that I had to exclude all food other than the broken down liquid feed which goes through my NG tube...I couldn't even drink orange juice, and I've drunk tonnes of orange juice every day for longer than I can remember! This diet wasn't fun, but I started to see some small steady improvements each day; my potassium levels seemed to be stabilising and my albumin and total protein levels were slowly rising (with albumin reaching 20 at one point), some of my other nutritional markers started creeping up too.
The really frustrating and worrying thing was that I was still losing weight each day, though. I continued to have some pain, although it was better than it had been, and nausea and vomiting continued to be a major issue. I had to have new NG tubes passed down every few days, due to vomiting them up.

I got to the point where I was able to get out of the hospital for a few hours some days; I managed to go to the shops, cinema and to the hair dressers to get my hair dyed pink! One of the gastric consultants suggested that I could start eating a few of my favourite sweets again, which I tried over the course of a couple of days. But then, my pain and nausea started getting worse again. The anaesthetists and pain team had to become more and more involved. One night, I was put on a morphine pump - it took until after 4 am for me to be able to sleep! The pain team prescribed a new anti-sickness drug which wiped me out completely. For pain relief, they added in buprenorphine patches and fentanyl lozenges. The pain, nausea, albumin levels and weight continued to get worse for weeks, but my chest remained in a relatively good condition compared to how it had been during the previous year. I was in more and more pain everyday, and the nausea and vomiting got worse and worse until eventually it was continual throughout the whole day. On Saturday August 16th, I suddenly started finding it really difficult to breathe, and was put on a Vapotherm machine to help. My albumin level had dropped to 13, and I was retaining lots of fluid, so they decided to give me an albumin infusion. After this my breathing got worse and the following day my nausea and vomiting, which it seemed couldn't get any worse, some how did get worse. I was exhausted, and my vapotherm settings were being pushed up and up in an attempt to support my breathing. I started feeling worse every time I had something pushed through my PICC line, and it was suspected that I had a line infection. In the early hours of Monday August 18th, my oxygen saturation kept dipping,  despite my vapotherm settings progressively being pushed up. The intensive care team came up to the ward and checked my blood gases. My carbon dioxide was over 11. I was given a number of bronchodilators in nebuliser form, which brought the CO2 level down a bit, but not enough. I was rushed down to intensive care with respiratory failure, where they put me on a bipap machine to help me ventilate, and they took my PICC line out in case it was infected.

I can't even remember being taken to intensive care. and don't remember anything about my first couple of days there. When I did start to become more aware, I started asking how I ended up there. I was confused because my chest had been in a better state than it had been for a long time, and there were none of the usual clinical signs of infection. It all seemed so sudden, too. 

Being in intensive was really hard again. It is so different from the ward in many ways, the environment and atmosphere is very different. They don't provide anywhere for someone to stop with you, either, but my dad stopped next to me for the whole two weeks, just sleeping on chairs next to my bed. My chest continued to be very clear throughout my time in PICU, and for some reason, from the day I was rushed there, the symptoms of my gut issues were greatly improved.

On the first day that I was in intensive care, my mom and dad had a meeting with my named consultant about the dangerous position that I was in. She proposed that they needed to just concentrate on stabilising my respiration and said that because of the risk of the bipap inducing vomiting, they shouldn't feed me via my NG tube, and said that my gut had "failed". Mom and Dad argued that my gut, although badly compromised, had not failed, and that if they did not feed me I would have no chance of getting out of intensive care. They agreed to start on a very low amount of continuous feed (10mls per hour), and to build it up slowly. I continued on bipap, with the settings slowly being weaned, for two weeks, 

After two weeks in intensive care on bipap, I had been getting some pain in the right side of my neck for a few days, when my physio noticed that there seemed to be something that might be air in my neck. I had an x-ray, and it was confirmed that the bipap had caused air to build up and collect in my neck. I was put on Optiflow, and then Vapotherm, at a 100% oxygen concentration, to help disperse the air. The following day, because vapotherm can be used on the ward, I was allowed out of intensive care and back up onto the adolescent ward. It was the 2nd of September. It's not exactly home, but it's so much better than being in ITU.

On the day that I came out of intesive care, my CRPs were 9, but two days later they were way up, at 160. And so started a roller coaster of bad days and better days, and lots of antibiotic changes. One new antibiotic, which I'd never been on before (Fosfomycin), made me feel really ill, and had to be stopped after two days. My vapotherm settings have been weaned down, and have then been put back up again a number of times. 

After my intesive care stay, because I lost even more weight and muscle, and was stuck in a lying position in bed for two weeks, I was left unable to walk, or even take my own weight enough to allow me to stand.

My gut issues have cotinued to improve slowly, and about a month ago, I was told to start trying some easily digestible foods orally. I first started trying the type of crisps that melt in your mouth, Quavers, Skips, and Monster Munch (Pickled Onion flavour, of course). Then I started trying some simple, low fibre cereals like Frosties and Sugar Puffs. As the weeks have gone by I have been able to eat more and more varied foods on top of my 2,500 mls of NG feed. The day after I stopped one of my antibiotics, Tigecycline, my nausea improved massively and I ate 4 meals, plus snacks. It's still been tough. because, as my digestive system is getting used to eating more solid and varied foods again, I have had  lots oif discomfort, but I am working through it all as best I can. It is working, because I have suddenly started putting a good amount of weight on. I was weighed on the 13th of October, and was found to have put on 2.5kg (5.5lbs) in 10 days, and then on the 18th I had put on another 600g (so thats's nearly half a stone in two weeks). My albumin level which has been really up and down, but very low for months, is now at 22, which is the highest it's been since being admitted to hospital nearly four and a half months ago. I am so pleased, and just want it to keep going up with my weight, and getting stronger.

The doctors here have been in contact with Newcastle hospital about the possibility of transplant. At the moment, my weight and albumin level is a problem, and I can't be listed at this point in time. It upsets me that transplant isn't an option, should I need one. However, I am now gaining weight, and my albumin levels are rising!

I try to keep myself occupied in hospital, but it can get very boring sometimes! I like talking to people on Facebook - I have made lots of lovely friends with CF on there - and I also like reading, drawing, watching films and chatting to my family. I've been sent lots of sweets from America from some of my new CF friends (yum!).

A few weeks back, we had a week organised by Readwell, a charity which gives books to children in hospital to keep them occupied, where some authors came to visit the ward. I met Henry Winkler (the Fonz) and Alex T. Smith (author of the Claude series). I also got free signed books from them and from David Almond, the author of Skellig. It was a fun week, and I found it fun talking to the authors as I would like to be a writer myself!

I would really like to be able to get well enough to get out to the ward for short periods of time. I would love to get to the shops and the museum/art gallery! I'm having a wish granted by Rays of Sunshine - a shopping spree! So I want to get well enough to do that.

In the last few days, I've been having abdominal pain and felt a little more nauseous. I hope this is just a short term thing, that will go away soon. The doctors are not too concerned, though, so that's reassuring.

Ooh! I almost forgot to tell you this! My family and I have a new house - in the Lake District! I'm so excited to move there. I will miss Devon a bit, but I'm looking forward to a new start in the new house! This means that I will also be under the care of a different hospital - the Royal Manchester Children's Hospital. A date hasn't yet been set for my transfer to the new hospital, but hopefully it will be soon.

Thank you for reading! I hope you're all well :-)! I will try very hard to update more often! You can follow me through my Facebook page and friend request me if you'd like! I love talking to new people, so just message me if you want! I hope you like the new look of my blog too!

Love,

Harriet x x x


Me on the Bipap


I had a visit from Louis the chihuahua!

My crazy mother! ;-) 
Before going out to the cinema to watch The Fault in our Stars

Me and Imi, my weirdo sister (but I love her!)
Some crafty bits I bought

Cinema tickets

Aww, my cute little Daddy ;-)! I think he was tired!



Sweeties from America!

My lovely birthday cakes - I didn't get to eat any!

Mmm, cheesy chips!

Outside the hospital

Getting my hair done

My swollen hand, after a cannula went wrong!

I wasn't allowed milk when I tried this - so I had to pour my feed over Sugar Puffs! It was surprisingly nice!

My sister and some children from the hospital school with Henry Winkler
My pink hair!



Wednesday, 23 April 2014

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Easter

Hi everyone!

Hope you all had a good Easter. I got lots of yummy eggs ;-)




I've been using my bike a lot in the past week! The first time I went on my bike, I did 1 kilometer, and I am now up to doing 2.5 kilometers! It's hard work, but every time I try to push myself a bit more. I have been going faster and further each time. I feel I am getting a lot fitter, and I really enjoy using my bike.

I haven't had such a good week in terms of eating, however, as I've been sick a lot! This won't be helping my potassium levels, which have been really low for a couple of weeks (2.6). A lot of the time when I eat, I feel nauseous and full, and my stomach hurts. When I cough after eating, I'm sometimes sick. I really hate feeling like this! 

Some more exciting news, though...I have started spending some time completely off my cylinder oxygen, for the first time in 8 months. The day before yesterday was the first time, when I spent 20 mins off, and today I spent 1 hour and 10 minutes off. I will keep pushing this, like when I was weening off the ventilator in intensive care, and hopefully I can get off the oxygen therapy completely. My lung function is generally stable, but my peak flow has improved. If I can start putting some weight on, hopefully my lung function will come up some more.

Yesterday, I went to my main CF centre, which is always really tiring at the moment, because it takes nearly 2 hours to get there, and then we spend 2 to 3 hours there before travelling back. I was really sick all night when I got back. I also came away with a CGM (continuous glucose monitor) fitted again, which is really uncomfortable. I'm feeling better today, though...trying to get plenty of potassium in, from supplements and coconut water (yuk). Dad's got me drinking peppermint tea at the moment too, to try to help my stomach...what a weird diet I have these days.

On Thursday, I went for a meal with my friends, Phoebe, Mollie, Beth, Laura, Kya and Millie at Pizza Express. I had a lovely time. It was the first time I'd seen most of my friends in about 10 months! It was really nice catching up with everyone. Here are some pictures of my outfit and from the night:






Next month, I'm going to Birmingham, to see McBusted play at the LG Arena with Phoebe! We're going to stop in a Premier Inn. I'm really excited! In June, I'm seeing One Direction and Little Mix! I'm addicted to concerts ;-)!

Thank you for reading!

Harriet xxx

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