A week since my last blog post & what a week it has been! I went to Harefield for clinic as planned, lung function as expected was down by their machines to although I didn't feel unwell in myself. By the time I came to see my doctor after a long wait in the afternoon as they were running behind, my palms were sweaty & I was extremely nervous.
Although there wasn't much to be seen in my X-ray, Dr Reed explained that my crp & white blood cells (infection markers) were high & my lung function was down by approximately 20% a hell of a lot considering & this could be a danger. Although I had it in my head I wasn't going home, I was still struck numb when she said you need to stay & I'll bronch you tomorrow...
I ran out the room in tears, rang Stef to tell him & couldn't stop shaking, by the times I calmed myself down & walked back in to pick up my case one of the staff nurses told me there was no beds for me so I was to go home & return again on Monday.... A sense of relief sweeped over me, closely followed by what the hell? Surely if I'm at risk I need to be sorted now? Stupid as it sounds all I kept thinking of was, Shit! Plan B! I'm going to make Stef miss his Plan B concert....
I got home late that night in a bit of a state, glad to be home but also really wary of becoming poorlier & what the hell were we to do about the concert!
As I was home, this meant we could go to Stefan's cousins wedding on the Saturday, we were invited to the meal & the party was a few hours later, we had both discussed that as it was in a busy venue (as well as being a Saturday) we would attend as much as possible but as soon as it started to become full of people, I would quietly make my exit so not to put myself more at risk. The morning of the wedding my lovely friend & hairdresser Jeanna, styled my hair for me & put in an extension piece. I am losing so much hair now from taking my immuneo Tacro, I feel extremely embarrassed about it & wanted a bit of volume to make me feel womanly again. It felt brilliant after she had finished, we went home to rest for a few hours & then I put my new dress on (bargain in the sale) & made our way to the do....
Although there wasn't much to be seen in my X-ray, Dr Reed explained that my crp & white blood cells (infection markers) were high & my lung function was down by approximately 20% a hell of a lot considering & this could be a danger. Although I had it in my head I wasn't going home, I was still struck numb when she said you need to stay & I'll bronch you tomorrow...
I ran out the room in tears, rang Stef to tell him & couldn't stop shaking, by the times I calmed myself down & walked back in to pick up my case one of the staff nurses told me there was no beds for me so I was to go home & return again on Monday.... A sense of relief sweeped over me, closely followed by what the hell? Surely if I'm at risk I need to be sorted now? Stupid as it sounds all I kept thinking of was, Shit! Plan B! I'm going to make Stef miss his Plan B concert....
I got home late that night in a bit of a state, glad to be home but also really wary of becoming poorlier & what the hell were we to do about the concert!
As I was home, this meant we could go to Stefan's cousins wedding on the Saturday, we were invited to the meal & the party was a few hours later, we had both discussed that as it was in a busy venue (as well as being a Saturday) we would attend as much as possible but as soon as it started to become full of people, I would quietly make my exit so not to put myself more at risk. The morning of the wedding my lovely friend & hairdresser Jeanna, styled my hair for me & put in an extension piece. I am losing so much hair now from taking my immuneo Tacro, I feel extremely embarrassed about it & wanted a bit of volume to make me feel womanly again. It felt brilliant after she had finished, we went home to rest for a few hours & then I put my new dress on (bargain in the sale) & made our way to the do....
Ready for Zara & Reece's Wedding!
We actually stayed all night. The wedding itself was a small affair with close friends & family so I didn't feel I was putting myself at risk (although you never can tell if someones got a bug or not) as the night went on people said their goodbyes so it became quieter until it was just Stef & I & the bride & groom. Zara looked amazing, & we were so proud of Reece. I was really pleased we could make it, & I had the best night out with my husband as we rarely get the chance to let our hair down. I danced the night away, first time in years - all thanks to my beautiful donor. That night was for him!!
Zara (The Gorgeous Bride) & I
Stefan with his Uncle Ringo & Reece (His cousin & the Groom)
The 4 Of Us Doing JagerBombs!
Sunday made me pay with vengence & I wish I could have said it was alcohol related, but I hadn't felt that poorly in a long time. My chest was wheezing & stabbing me with pains, I was bringing up gunk & coughing more than I had done in months, I felt sick constantly & couldn't bring myself to eat until Stef made me in the evening try some dinner. My head was spinning & all I wanted to do was shut my eyes, I could barely walk myself to the toilet, it was quite frightening as felt like history was repeating itself. I knew Harefield the next day wouldn't go the way I hoped but this time I didn't want them to send me home. We made the hard decision over the weekend & sold the Plan B tickets. Even if I was well enough to go & was home the Monday night, the environment would be a nightmare - concerts get so crowded, full of people sweat & alsorts, we knew it was for the best, although devasted, Stef kept reassuring me, he'll tour again... "Next time we can go in the Summer, when it's warm & an outside venue so you aren't at risk" he said. Of course he's absolutely right, concerts come & go, I just felt sad for him as it was me that got it for him as his 'treat'...
I was up again at 3.30am that Monday morning having my nebs & meds ready to go to Harefield, Steve rang & their was a problem with the battery, Lady Lungs was travelling that day too, so I had the pleasure of his company for the day, I waited & waited & he finally got me at 9.30am... Then Dave an hour later. We arrived at Harefield for 2pm instead of the usual 10am - Opp's what a day already & I hadnt even been seen! Still it can't have been helped & I let it go over my head. All my tests were done in a matter of minutes so we could be seen by the consultants asap, my lung function had increased slightly but as we were so late by bloods hadn't yet come back, my name was called & I went to speak to Dr Reed again, (Nonny) I told her about the day before & feeling unwell & although my lung function had increased just a fraction we decided it was best to stay in & get me sorted. My bed was ready & I was first on the list for a bronch & biopsy the following day. Nonny thought it 80% infection but she said she has to check for rejection as I didn't feel too unwell in myself & I'm still so early post transplant, the signs are vital & best to get checked sooner rather than later. Instead of freaking out like I did a few days earlier, I calmly left the room, phoned Stef & went & told Steve & Dave I wouldn't be joining them on the journey home.
It was a relief to be honest, I was pleased that they had a plan & hoped they'd sort me out. I was taken to my room on Fir Tree & started unpacking, I looked out the window at the snow which has settled over the last few days & tears started to roll down my cheeks. I hated being so far away from home, I've had hospital admissions for months at a time all my life, & the majority of the time I've dealt with them on my own, but the last few years I hate leaving my husband & snake babies, we feel absolutley lost without each other. However, I knew I was in the right place, I wanted to feel better again, so I told myself to suck it up & get on with it.
My View From Room 16 Fir Tree Ward, Harefield
I was up extra early the following Tuesday morning (after not sleeping a wink anyway) to get showered & gowned up, I was taken for my bronch at 8.20am, I still had my picc line in so was put to sleep quite quickly without any attempts at getting another line in. I woke up in recovery around 11ish & as I was taken back to my room, I felt like I was going to cough up my spleen, my throat was so sore & I had a banging headache, soon as I got changed back into my pj's I fell asleep for an hour or two. Once I woke, I removed my nasel specs (on oxygen) & felt much better, although I noticed a puncture mark on my other arm, funny I thought, they used my picc to put me out so why the need to stab me again?! I felt like I'd just been beamed down from an alien abduction when you have no recollection of whats happened to you!! I was told to wait at least a day for my biopsy results, so I filled my afternoons with a bit of daytime tv (which as you all know I hate, but lucky for me channel 5 have been re-running the exotic pets programmes lately!) & a few cuppas with the transport drivers in the canteen as they had their break! A lot of them are London based, but I have got to know them quite well after the last few months, lovely bunch of guys that never fail to make you laugh - was quite amusing as when I was sat with them one day I was even asked if I was a new driver! Imagine that with me being blind as a bat from dusk til dawn!!!
The hours passed, the phone calls to Stef got more & more frequenent. I was missing him like crazy. I still hadn't had my results & was starting to worry. One of the team came in & said once they recieved them, if they were clear, I could go home the following day, so I booked to travel home in the hope 'for a just in case scenario) I waited, & waited... Finally Thursday just after lunch, Chris, one of the SHO's knocked on my door, I pretty much dragged him into the room, "Well?" I gargled, wanting to know if I could throw stuff in my case or not.... "There's no rejection" He replied, ahhhh the relief! He expained I was very inflammed & it was definately a case of infection, I was to finish the course of Cipro they had already started me on (which ends Monday) & return in a week to see if I was on the up or if more medication & clearing of my lungs needed to be done. That was good enough for me, I think I packed in less than a minute & sat on my bed watching the clock until I could come home....
The journey back was nice as met two lovely new txer's, we had a bit of a laugh & giggle as I think we were all so relieved to be going home that day... I forgot to mention that it was indeed Valentines Day yesterday, Stef & I don't tend to celebrate it as think it's very commercial, we show & prove our love every minute of every day to each other so I don't see the point in going all out on one day with chocolates & such like... Plus I don't like flowers, I can't keep them alive, they die within a few days so what's the point?! I felt like I was getting the best gift ever coming home to him that night, I walked in the door around 8pm to a lovely home cooked meal of gammon, eggs, green beans, mushrooms & fries & the best cup of tea.... The first proper meal I had had since the weekend before, followed by cuddles from my husband & snuggles with my scale babies. I was so happy again. I'm back to Harefield next Thursday to see how I am doing, I'll take each day as it come's & I am certainly under NO circumstances whatsoever putting myself at risk for the forseeable future. These precious lungys mean the world to me, & the saying is to true. There really is no place like home....
My Amazing Husband & I
Thank you as always for taking the time to read xxx
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