As you will know, from my last blog post I wasn't feeling the love as caught a nasty bug which went straight onto my chest, I had Harefield clinic on Thursday the 4th April & low & be-hold I am still here from that clinic day (It's now the 16th) ! I thought I would write this now, as 1) I now have my laptop as finally saw my husband after 11 of the hardest days & nights, yesterday, 2) I'm still here so it's all fresh in my mind & 3) well, blantantly, just obviously bored to fook!
I was admitted to Firtree ward, from clinic after seeing Nonny (Dr Reed) my lung function & weight had dropped & my ct scan showed abnormalities. They had a bed & I was on the list for a bronch & biopsy the following day, I had brought my little case with me for enough supplies until around Monday with the hope I would be discharged to go home on more medication when they had the results. I couldn't have been more wrong!
Harefield Hotel
Room 16 On FirTree Ward
Firstly the bronch itself was a pure nightmare as the drug they used to bring me round from GA I was allergic to & I had several fits & ended up being put back under a fair few times, I remember fighting them for dear life, kicking out & trying to yell I couldn't breathe but no voice came out & I literally thought it would never end. I woke up in recovery just before 1pm, constantly being sick & bringing up lots of crap with the worst sore throat ever, I had gone down for my bronch at 9.30am - a ridiculous amount of time for such a straight forward normal procedure for us post txer's. I spent the rest of the day in & out of sleep & being sick, that day was a complete write off.... I saw one of the doctors the following Saturday afternoon & was told that I could provisionally book transport home for the Tuesday, they found alot of pus in my new lungys which they removed & now we were waiting on the results. So that was it, I was started on some anti fungal iv's & just waited for the weekend to come & go & for the results to arrive.
By Tuesday, the focus wasn't so much on my chest anymore but my blood results in the 'renal' department. My weight had gone from 46kg to 49.4kg in just a day sure sign something was wrong, (especially as I wasn't eating because the food in here is.... fucking disgusting!) I was refused discharge as had to have further blood tests & my immuneo's amended. Gutted wasn't the word, day after day the results became worse, & it wasn't until late Thursday night after looking at my fluid intake / output records that you could see my kidneys had very kindly packed in on me... I had a sleepless night with blood test after blood test, more obs & being catheterised. I started feeling quite unwell & pretty dam scared. It had been torture going without seeing my husbands face & touch everyday & now things were becoming more difficult I just had no where or no one to turn to. I was in fits of tears the majority of the time. I was also vastly running out of supplies, I had only brought 2 outfits to wear & had the boots I was wearing when I came to clinic, my battery charger had run out for my electric toothbrush & I basically felt 'rank'.
That's when Hannah came to the rescue bless her, she took the day off work & brought her sister up to see me on the Friday (when things started to kick off which was really helpful as I felt I coped a little better knowing I had company) She brought me a supply of clothes (although I couldn't get dressed because of my catheter) some drinks & even got me a kebab for lunch after getting the distressing news I was being moved wards, and then from there moving to itu to start filtering my kidneys. She lives in Portsmouth so I really appreciated her being there, & I was so scared. They helped pack up my stuff to lock away as your not allowed to take much in itu, obviously it's for extremely poorly people but I had to go there for precautions, I personally hate the place it's bad enough when your off your head on medication but when your 'with it' it brought back so many horrible memories from just 8 months ago....
The visiting restrictions were tight & it wasn't long before they had to leave, Keith another heart transplantee was with us too, trying to keep my spirits high but they soon had to leave & there were tears all round...
My View On ITU
I had a central line placed in my neck (still in now) ready for the dialysis machine & after setting it all up was pinned to the bed & couldn't move a muscle. This was pure torture for me, I am so independant that having to rely on people to pass me a drink or a bed pan & wipe my bum.... It's just really not nice! I didn't even have my phone as the cable was so short I couldn't reach & my head was pinned to the pillow so the tubes wouldn't move as they are so heavy it pulls your neck... Needless to say I didn't sleep a wink. I had the bear hugger heater to keep me warm as when your kidneys are filtered you are freezing & tremor like crazy, the lights were all on & constant beeping from machines & poorly sick people shouting out on itu - I felt so sad. I just wanted to shut it all out.
1.30pm the next day the doctors came round & said the results had improved & I could be moved back onto the tx ward. I was exstatic, just purely to get out of itu! I returned to the same room I had been on the morning previous but was obviously told I couldn't have the neckline or catheter out just in case. They monitored my bloods & urine output as had done in previous days.... To give you a perspective of what the blood results meant, before I was taken to itu my levels had gone over 700 - someone with cf & tx problems can live with a level of 240 for the rest of their life but usually for a 'normal' person it's around 80. On the Sunday morning, they seemed satisfied I was getting rid of fluids so was able to take my catheter out & get dressed but keep my neckline in. I had been wearing a op gown for the last 4 days & it felt so good to have a bit of normality again. I thought things were on the up until the doctors came back in later that day & told me my levels had shot back up to 505, I would need dialysis again but thankfully this time it could be done in my room on the tx ward by an itu nurse. I just cried & cried, why the hell was my body doing this to me? I feel like Im taking one step forward & three steps back each & every day....
Enough was enough, I hadn't seen my beloved best friend in 11 days so Stef took the day off work Monday (yesterday) & planned to drive up first thing. I started on the machine around 10pm on the Sunday night & came off it about 7.30am with the hope that it would kick start my little kidney beans back into touch after a little rest. The night was restless, again no sleep constant beeping / monitoring & freezing my tits off but I was extremely relieved I was in my own room, & the itu nurse, Cleo, I had looking after me was lovely.
Kidney Dialysis / Filtering Machine
In My Room (14) On Rowan Ward
I was too excited to even think twice yesterday, soon as I saw that door open & my husbands face at 9.30am I cried my eyes out, squeezed him so hard, I just didn't want to let go. He brought me fresh clothes, my toothbrush charger, the laptop and some lovely new slippers for me to wear around the hospital. We just spent the morning cuddling & talking & he was there when the doctors came round with news of my levels. 280 odd they were now sitting at currently, I had the day to record my fluid intake which had to be over 2ltrs & output - they were going to put off filtering for that night & I will get results again later today after they take bloods - we'll soon see what my body is doing now.... I was relieved Stef was in the room with me when I had them there, I made sure I asked all the questions that were bothering me. Now it's just the wait & see what happens later stage, I'm not holding my breathe, just got to take things day by day now. It wasn't long before my hubby had to leave for home again, the drive is so long & obviously he has work the following day. I worry about his health more than anything, tiredness & the fact I know he isn't eating as well as he should! It broke my heart, I will never leave it that long to see his face again, thats a given.
Together Again <3
New Slippers
A few positive bits before I sign off.... Stef's been sendng me lots of pictures of all our babies back home, I'm just desperate to get back home to them, our new arrival is even there & I haven't even met him yet... Stef collected Ace our royal male Pied last Friday, he's settled in well & I've fallen in love with just the odd piccie so cannot wait to see him in the flesh.
Ace Our New Bundle Of Scales
Male (Royal Python) Pied
Talking of my babies, I had some lovely people from back home send me in some laminated pictures of all my babies & one of Stef & I which has been an absolute godsend as I certainly didn't expect to be here so long. They will now be part of my Harefield Case for life - they have been a huge talking point with staff whenever someone has entered the room, they either think I'm off my rocker & soon sod off, or sit down & get a lesson in Snakes! So a huge thank you to those ladies that sorted that out for me!!
Goodies That Were Sent To Me From Lovely Peeps Back Home!
My Laminated Pics :)
I have had lots of lovely comments / & inboxes of support from friends near & far to get me though all this, if I don't reply it's not because I haven't read it so please don't get offended. I try my best to reply to each & everyone but with feeling so rough & tired I find it really hard to text to people individually. I much prefer to do one big update status on FACEBOOK so I'm not repeating myself all day, my shakes are extremely ridiculous now & I find it especially hard to text on the phone these days - never the less, the support has been incredible, so thank you....
Finally, I was asked over the weekend for the first time ever if I would be a godmother! This literally took my breathe away, I felt so overwhelmed that a couple could trust me so much & would like me to a be such an important influence on their beautiful child whilst growing up - This cheered me up no end also, so thank you to Jo & Jason for this amazing privilege. It's been a bloody hard slog this time round but there have been little lights here & there to keep me smiling.
Thank you to the guys that have popped in & said hi when they have been in clinic's too, you know who you all are. Now I guess there's nothing left for me to do but sign out & hope for a little ray of sunshine today, I would be soooo elated if things were starting to look up & I could get home by the weekend but will keep you posted as ever. Here's hoping my next blog is a happier one, coming from my home, where I belong after many husband & snake baby cuddles xxxx
Forever Supporting The Hospital That Saved
My Life & Continue To Do So At Every Stage...
Thank you as always for taking the time to read xxx
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