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
No comments:
Post a Comment