Another Week, Another Admission At Harefield Hotel.......

I know my body, & although it was amazing to be home, I knew things still weren't right. They still aren't but I'll explain that in a moment. I struggled through the week, trying to rest here & there but also trying to move about & improve my mobility, I didn't want to give in & use my stair lifts so I pushed myself up the stairs, even if it took me 20 minutes or more. Slowly the fluid in my legs & upper body was dispersing, but the more I preformed my lung function daily, the lower it was dropping. I just knew I was heading for bad news in clinic day.

My lung function had dropped to 0.96 Fev1 the morning of clinic, I was now extremely anxious & booked to see Nonnie at 2.30pm. I spent the day with the lovely Emma & Joey (new tx friends, amazingly, Joey was just 4 weeks post) having a giggle but waiting nervously until I was called. As expected, the news wasn't good & I was promptly on the phone to Stef telling him I wouldn't be coming home. I was admitted to Rowan & awaiting a bronch & biopsy for the following morning. My heart was still only working to the ability of 47% & as my lung function had again fallen again I needed to be sorted. My head was all over the place, I just wanted to be better. I was in tears constantly & just needed a hug, but being so far from home, I had no one to console me.

I was first on the list for bronch on Tuesday so was woken at 6 to be showered & gowned. After wheeling me down at 8am, they spent ages trying to canulate me to get me off to sleep but failed miserabley with four attempts at my crappy veins. I was eventually put out by the horrible stinking gas which for the rest of the day made me so sleepy & sick I just wanted to be left alone. The following day I saw my consultant Dr Carby who explained that he thought the reason for my lungs being so badly behaved was because of the acid reflux I suffer from. (The impedance test I had a few months back I tested positive for) Basically acid from my tummy has been leaking into my new lungs & this can damage them quite significantly which would explain the constant drop in my lung function, to treat this, you need whats called a fundo operation. In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter. The operation is often done via key hole surgery, during recovery, most people are on a liquid only diet until you can start swallowing foods again (some foods depending on the person you will have to avoid as you cannot digest) & you will not be able to vomit again, at all. I was in desperate need for this operation, but Dr Carby explained that the damage could already be done to my sparkly little puffers & if this is the case, they could only hope to stabilse me. He wanted me to see the surgeon over the next couple of days to see when I could scheduled for the operation. My biopsy came back & confirmed organised pnuemonia & mild rejection which is consitant with the fact I need the fundo op & my lungs are extremely inflammed. My steriods have been increased to a high dose for the next month to see if this helps.

So that was the 'technical stuff' but my head was in all seriousness buggered. I am usually really good at admissions, I get my down days for sure as would anyone, but I have done this all my life & just got on with things, yet this week I was finding things increasingly difficult. I was still coming to terms with what happened with my heart only a few weeks ago, (& the fact it still isn't working properly) I have had a lot of issues going on in my personal life which I have been struggling to deal with, & the week I was at home I was becoming increasingly emotional with concerns about other people & the worry of my lungs becoming worse. This admission & the uncertainity of everything just brought me down even more, I felt like I was just waiting for answers every minute of every day & no one really had any, every few hours I would just burst into tears, then my tears would turn to anger & frustration. I can't explain so much in words but I was in a dark place. I was missing my husband immensely, he is usually the only one that can talk sense into me & tell me to snap out of it or that things would be ok, but he couldn't be with me, I just had his voice at the end of the phone every evening & it was hell.

I did have some lovely messages from people as always, & a few visits too this time round which did me the world of good & proved to me I wasn't suffering alone. On clinic day, (Thursday) Emma & Joey popped in & my beautiful Sarah & her mum Ros, it was fantastic to see them & she spoilt me rotten bringing me some much needed calorie filled goodies, as did fellow cfer Emily (who is waiting for her lungs) & husband David who I finally met (from a far as they stood outside my room because of cross infection issues) they had brought in a beautiful bag of goodies for myself & Kirstie who was in the room next to me at the time. It was lovely meeting them & I really do hope she gets her call soon.... On the same day as clinic, My Hannah banana came up with her sisters & her mummy that I finally met after talking to a lot over fb, we spent a while day giggling & munching away & finally my old CF nurse from Exeter surprised me with a visit too & she treated me to a lamb shish kebab for lunch over a cry & a catch up. Was a bit like a bus that day, wait for one & they all come at once but it did me the world of good.... I slept like a log that night!

So where am I at now I hear you ask? Well, I'm home. I was discharged on Saturday & got back about 6.30pm. I finally saw the surgeon, Professor Hanna about 10pm Friday night. Me being 'me', typically, my case is complicated as I have had so many bowel operations in the past so the operation won't be done via key hole like most, they will need to open me up properly, I will also loose the feeding tube in my tummy (my mickey) Prof Hanna is going to speak to my consultant first about the complications & then hopefully get me in ASAP for the operation. I have a feeling I'll have to chase over the next few weeks to make sure I am not forgotten about, I really need this operation & my case is urgent but it all depends on how busy they are also... I had another ultrasound on Friday which showed the clots in my arm have dispersed but I have a big one in my jugular (neck) which if moved could be very dangerous so I'm back on warfarin for at least 3 months as well as clexacine injections daily which hurt like a bitch! As the treatment for the organised pneumonia / mild rejection is just a higher dose of steroids, I could go home to 'wait' for the op. Nothing else can be done... I'm in too minds about this as obviously don't want to deteriorate further but least I get to see my hubby & babies!!!

So now I am home my focus is to rest & also work hard on gaining more strength to get me through the next stage of what I hope will be a good recovery from the impending fundo... The operation itself I think will be done at another hospital too which complicates things a little more. They are usually preformed at St Mary's in Paddington, so I am now trying to get a little pot of money together so my husband is able to be with me during the 'operation stage' If he takes time off work it will be again unpaid & then we need the fuel money to central London & money for him to stay in B&B's / eat & drink whilst I have the op done, as soon as I am transferred back to Harefield he can return to work again & I will get on with things like I normally do, but I really want him with me during the operation in case there are further complications. It sucks when you have to think of the financial side of things too as well as the stress of up & coming health problems but needs must!

I am not as positive at the moment but it's not due to giving up, I think I just have so much worry & stress going on in my head it's not doing a lot for my mind, body & soul. When I am down, I know my body is also suffering, & sadly so does my poor husband, he hates to see me so drained. I think of my donor every single day & vow never to give up on this precious gift he has given me. I have to keep on fighting, there is so much I want to do.... So onwards & upwards again.... Let's hope my name is called for this procedure in the not so distant future & I can start getting back to 'Being Kimberley'....

Thank you as always for taking the time to read. xxx

July - A Month I Will Never Forget....

As you can see it's been a fair while since I last blogged & a lot has happened in that time. We celebrated our second year wedding anniversary, I hit the grand old milestone of 30 years old, had my lungs first birthday, and, very nearly passed away. Yes, you read that right....

I'll start from the beginning. I had a lovely week on the lead up to my 30th Birthday, I had arranged to see friends on each day, have little plans here & there & spend quality time with people that were closest to me. I did start to feel unwell in myself however, my lung function was slowly declining & I was struggling to climb the stairs in my house, I vowed to keep a close eye & enjoyed the celebrations. Stefan & I went for a beautiful meal at Memories for our second wedding anniverary, the food, atmosphere & evening were pretty much perfect in my eyes.

 

Very Spoilt

 

Lucky Lady

 

Beautiful Gifts

In the week I had visits from my girlies & a few trips out. I went to Paignton Zoo with Sarah & Leo, Cockington with Hayley & Chase, Jo & Honor came to see me, went for brunch with Bex & Aimee & the lovely Southams took me to lunch at the steam packet. I was incredibly spoilt, from cards & pressies in the post from my wonderful CF / TX friends & lots of snake cakes to fill my tummy!!!

 

Dave & I @ Steam Packet

 

Leo & I On The Choo Choo @ Paignton Zoo

Stefan & I spent a day of go-karting / mini golfing & being adandoned in a giant paddle boat swan! The UK was having a heatwave at the time & as much as I love the sunshine, it was unbearable. All you wanted to do was jump in the nearest pond! A few days after my birthday I decided to bring my clinic appointment at harefield a week forward as I was getting concerned with my drop in lung function & the ability to do my stairs.

 

Love

 

Mini Golf! (I Won!)

 

On The Swan

The weekend before I was due to go I started feeling really breathless, to the point I felt like I should be on oxygen, I don't have a SATS monitor at home so just carried on regardless & prayed for Monday to hurry up so they could get me sorted. On the Sunday before I went, I saw my friend Kimmy, she took me for a late birthday lunch at the Steam Packet (although I knew I was unwell as my appetite is the first thing to go & I struggle to eat a thing) she had bought me a beautiful Pandora bracelet with the charm K on it. It was stunning & I was absolutley made up. We had a lovely afternoon, (me in the shade) just catching up, but as I made the attempt to get back in her car to go home I really started to struggle. Stef & I went to Exeter that evening to see the girls from Exotics, it was still mega hot even with fans on in their house & I was really fighting for breathe. I was so worried, the morning couldn't come soon enough, what the hell was wrong with me? Was I just suffering from the heat?

 

My Snake Cake From Aunt Mo

 

Snake Cupcakes From Alley x

 

Snake Cake From Hayley, Kaci & Chase

As soon as we got home I put myself on a nebuliser but it didn't help, I had to be up in a few hours to get ready for the trip to Harefield so I knew I wasn't going too get much sleep, I then started to vomit white and yellow froth. I finally got about an hours kip when my alarm went off & I slowly started getting ready, I was sweating, my head was soaking wet yet I was shivering so badly & wrapping myself up in my playboy fleecey blanket. Steve my driver arrived & Stef helped me into the car. I couldn't help notice Steve's face when he saw me, he said all the colour had drained & I looked extremely poorly. The drive seemed to take forever, we usually have a right laugh, a lot of banter & a mc d's brekkie but not today, I couldn't talk, I felt sick, I was freezing, or so I thought but I was dripping with sweat. We eventually got to Harefield & Steve wheeled me into clinic, Lindsay took one look at me & put me in the back treatment room & I was started on oxygen & regular ob's. No tests for me that day, I waited for a bed, all day.... I don't know what I did with the time, I think I was just drifting in & out of sleep in the chair, (I was unable to lie down) but I finally got onto Rowan about 6pm. Thank god I thought, now treatment can be started & I'll be ok. How wrong I was.......

My breathing very quickly became more erratic, it felt like my heart was going to explode from my chest, I was moved from nasel specs onto the mask from 10 to 15 litres of oxygen, heart rate was 165 bmp, 'that's not your heart rate' the nurse said, 'it is' I tried to tell him, I could feel it, he checked my pulse, 'oh my god it is, that's not right'... Over the next hour I had several blood gases done, my infection markers were through the roof, my temp was hitting 40, my SATS were dropping below 80 & my heart rate was increasing, in came more doctors, the itu staff & physio, I was put on bi-pap to try & ease my breathing but it just wasn't working. I was absolutely petrified. Stefan was at home asleep & had no idea what was going on, I was completely alone. They made the decision very quickly to take me to ITU, 'can someone please call my husband' I tried to gasp as they wheeled me around. When was I going to see him again? I just wanted him to hold my hand, tell me it was going to be ok. But I knew he was in Devon, even if he left straight away he would still be about 4 hours & I didn't know if I would be alive by then. Last thing I remember was 2 people on either side of me, one at the top by my wrist, one by my foot, trying to put arterial lines in me & then a man telling me they were going to let me sleep so the machines could breathe for me, a mask was pulled tightly over my face and I was gone.

'Kimberley, Princess' I could hear, 'Kim, we're going to remove the tube now' I opened my eyes 2 days later & Stefan & a nurse were staring right back at me. I was alive. I had made it, what the hell had happened? It was Wednesday evening Stefan explained to me & something had gone very wrong with my heart and I had suffered respiratory failure. They had bronched me when they first intubated & ventilated me but found nothing, but my heart was working to the ability of 20% which was incredibly poor & something the team had never once seen before. (Typically me) They had taken a biopsy of my heart & I was on a huge concoction of drugs to try & combat the infection / virus / whatever it was they thought I might have. I was told I was incredibly poorly & at the same time extremely lucky, if I wasn't in Harefield when I was, I certainly wouldn't have been here today. My left arm had ballooned whilst I was ventilated so my picc line was removed immediately & I had an ultrasound which revealed several huge blood clots all up my left side and across my shoulder & neck line. Another complication to add to the mix. I was told I would be on ITU for a while & was shortly moved to a sideroom of my own as contracted C Diff (basically the squits) so had to be barrier nursed as well as everything else. Stefan was incredible, I don't know how on earth he coped on his own again, but he made sure he was there for me during my time on ITU. I can't imagine what he went through, I knew nothing, I was out of it, but he was the one who was told to prepare himself for the worst, having to answer all the questions from the doctors about what I had done that could have caused this. I would understand if I was to blame, but I am always so careful and there literally is no reason, to this day we still have no idea how or why it happened.

A week on from ITU I was eventually moved onto Rowan's HDU square. I was still barriered so wasn't allowed visitors (other than Stef) or allowed out of my room. Whatever it was had completely wiped my body out, I had so much muscle waste & fluid retention, I was huge, so bloated, I had put on 8kg in fluid, going from 47kg to 55g! I couldn't walk, I had no energy & I just wanted to sleep - all the time. A week on from being on the HDU Square I was then moved to the corridor which was a bit nicer as was much more quieter but I was still barriered. How the hell am I going to get better if I can't even walk about I thought to myself? The physio's brought in the steps which yeah, ok is some kind of exercise but not a great deal. I was still struggling with mobilty & I hadn't lost much of the fluid, My arm had been in a sling since ITU to try & reduce the swelling from the blood clot's & I was started on warfarin which I will be on for the foreseeable. They are unable to bleed from my left hand side at all & I was getting so frustrated as now I don't have a line in, it take's about 8 attempts for them to get blood from me & they were doing this daily. I was also on iv's so had to be canulated which were tissuing faster than they were putting them in. I couldn't wait to start to feel better. It wasn't until I was in this room that I started to pay attention to my phone & what was going on around me, I was so poorly before I didn't have the energy to even read a message or talk on the phone. The messages of support were overwhelming, it was lovely to read so many people were praying for me and willing for me to fight. I can't thank you all enough.

I am now home. I was discharged on Friday after 3 weeks and got home about 10.30pm. 5 days in and sad to say I am still struggling and there isn't much improvement. My lung function is the worse it's ever been but I am praying that it's just because whatever it was wiped me out so much it'll just take time for me to get it back again. I am struggling with stairs and walking around still but trying a little more each day as well as getting plenty of rest. I am still unable to have visitors, mainly due to the fact I am not great company but hopefully this will improve as the weeks go by. I am back to harefield on Monday, slightly worried as to whether they will keep me again and if they sent me home too early, my infection markers were looking good, it's just the fact my body is so wiped out it's taking so long to get any form of strength and mobilty I had back. I would say, this episode by far was worse than me even going through my transplant last year. We have reverted back to Stef doing everything for me again at the moment, from carrying me, cooking, and washing my hair. I have been extremely emotional looking back to what happened and just how lucky I am. My hero donor got me through it once again and I am just so grateful to be here. I never ever want to put my husband through that again, times are still tough, but I hope over the next few weeks I will come on leaps and bounds. I have a lot to be thankful for, and once again the amazing staff at Harefield saved my life.

 

At A Friend's Wedding Before I Became Poorly

 

In My Snake Dress June 2013

I am on heart medications now as well to control the function of my little ticker, amazingly my kidney beans coped well throughout the whole ordeal so well done to them! Here is a summary of my discharge letter for those interested in the technical terms of things... Mrs Kneil was admitted with sepsis. She acutely deteriorated requiring increasing oxygen (15 litres sats 77%) She went into type one respiratory failure with metabolic acidosis & was taken to ITU where she was intubated & ventilated. She was started on a sliding scale as BM were uncontrolled, ECHO showed reduced ejection fraction (heart working to the ability of) 20% with global hypokinsia. Her admission was complicated by swelling of her left arm, ultrasound showed thrombus (blood clots) in left brachial veins, left axillary & left subclavian, vein as well as the left superficial cephalic & left internal jugular vein, she has started warfarin which should be continued for at least 3-6 months. Mrs Kneil also went onto have a CT head for persistant headaches, no abnormality was identified but she was noted to have hypertension. Repeat ECHO showing mild global systolic dysfunction now at 47% (heart working to the ability of) .

There is so much I want to do now to make up for being so poorly. I had my lungs first birthday on Rowan, not where I wanted to be, but very apt I guess. When I feel a bit better, I want to spend time with Stefan and go to Longleat or somewhere like that, make the most of what we a have whilst we have it. We knew this would never be a cure, life is so short, so precious, it goes to show that anything can happen in the blink of an eye - don't ever take anything for granted, I know I won't, love laugh & live. xxxxxx

 

The Most Amazing Person In The World

I Could Never Be Without

Love Him So Much

My Rock xxx

　

Sorry this blog is so long winded. Thank you as always for taking the time to read. xxx