So I'm back in hotel de frimley! Aka the CF unit at Frimley Park hospital!
I've had a week full of hospitals.
Had my little visit to Harefield to see carby! I was added onto a very busy clinic so it was short and sweet the actually time spent with him. Basically he hadn't heard thing about everything that's been going on, whoever my team at frimley spoke to at Harefield, it wasn't passed onto Dr carby, and because of how quick things had happened with vein narrowing and port being removed, letters hadn't been processed or reached Harefield yet.
Anyways told him briefly what's happened and what I had been told "hear say" that Harefield weren't keen or didn't want me to have a stent placed. He said ok ok let me ring Chris (my cf Dr)
So mum, lee and I are sat there, so quietly, even a bit awkwardly whilst carby rings Chris to get this sorted, straight to the point, Chris explained in Dr language few mins later he's off the phone!
Right so he now knows what vein it is, Chris was going to email over all the photo bit and radiology bits whatever they call it, just all the info from what scans showed up and Drs and surgeons reports.
Dr Martin carby was going to bring it up and talk to surgeons at Harefield in there meeting on the Thursday (day after the clinic) and I would hear back with a final decision but he said he can't see why having a stent would cause any problems.
Massive weight lifted off my shoulders! And blood thinners not an issue as long as I'm put on the ones they can revert and not one of the "new" blood thinners. So was in there no longer than 15 mins and sorted!
We also did ask how many surgeons do lung ruduction/lobar transplants and it's 3/4 of the surgeons which is fine.
Just wondered if on a night a set of larger lungs became available for me that no one else was fit for or fitted and they could make them smaller, wanted to see how many of the surgeons are able too preform it!
But 3/4 is good odds for me!
I'm their target or something so on their radar as they keep telling me, just gotta keep going and keep as well as is possible!!
Since being at Harefield sooner than my yearly/6th monthly appointment, I got my 3 monthly bloods done to check anti bodies and All that. I avoided the weight which I am very pleased at now!
So that week (last week) I had changed my I.vs on the Friday but started properly Saturday. Changed to ceftazadine and colistin, nothing unusually!
Well jheeze, hit me like a ton of bricks the sickness! I was already on home iv anti sickness, both of them and prior to the change, everything was good and working well, sickness was under control!
But not from Saturday onwards! I became very bloated and swollen in my tummy too, don't know if it was related, that went after a day or so.
My last main meal was Monday night, had mash, honey and mustard stew with broc so yummy! But after Monday night I think I literally ate 3 ham sandwiches, an apple and jam on toast up to Thursday but most of that I had been sick shortly after so hadn't actually kept it down
and then I couldn't even keep fluids down over Thursday night, Friday mum decided I needn't to go in!
I had been to the unit the day before, weak but I was fine, I couldn't walk and nor could I the day to Harefield due to feeling so weak from not eating or keeping down what I had eaten but the days I didn't have hospital I was in bed and hadn't washed for a few days, just life less!
So Friday morning mum said right not even fluids staying down so need to go in and get on a drip and change drugs!
Luckily there was a free bed on the unit, got in by 3-4ish
And everyone was so great as usual!
I was so weak and could barely talk and keep eyes open at first.
Saw Drs and consultant, wrote up fluids, change drugs, added more anti sickness.
Around 7.30 just before drugs were written up, they had to weigh me to work out drug dose!
Well my weight has NEVER been so low! 33.3kg! Bmi of 15!!!!
Didn't believe, didn't want too! Dreaded turning around and telling my mum!
It's like something mentally clicked I was like shit!!! They wouldn't even transplant me then if I got a call that night, and was so glad I wasn't weighed at Harefield on the Wednesday!!
Mum and I sat there for a good half hour in a bit of shock, and like right need to sort this out asap. Told her to bring feed bits up for ng tube, even though I was thinking if I can't keep fluids down how am i gna keep a tube down! but something hit mentally, it's like your natural instinct kicks in, and I managed to eat some crisps, some chocolate that night!
The next day I saw Chris and I told him my weight and said I know it's not right reasons but can I go on Steriods get me eating if anything!
Well cut along story short it worked and by Sunday afternoon I was 40kg!
Little unsure if it's realistic, people are doubting the scale reading on Friday now, but I got on and off and honestly I didn't want it to be that low!! But that we will never no all that matters now is that I'm eating more and weights up, appetite is back!
As I mentioned I was up at clinic Thursday, for bloods but I managed to speak to Chris then, as carby had spoken to him to give the go ahead, so now it's a matter of arranging a time when the vascular guy who will be inserting the stent is free the same day as the guy who inserts the new portacath!
So my slightly vein problem! I know a lot of people will read this an judge me but I am only human and still a 24/25 year old woman despite having all this cf stuff and transplant bits I still want to feel good about my body!
It's about where to place the new port! Now I was very lucky before, my first one was fitted when I was 9 then I grew boobs and had it moved up slightly when I was 15 but still was hidden in my boob, so unless it was accessed you actually never saw it!
I've seen some awful ports been placed too high on the chest, where you can literally see the portacath sticking out of the chest and then skin is so thin it looks green and bruised etc!
This is what I want to avoid! Otherwise I might as well have it on my forehead! I also lack in fat so boob is really my best bet!
The vein side as in shallow side of me is worrying about more scars! And what happens if we agree on an area or placement, the surgeon and I and then I wake up and it's too high so I'm left with a port sticking out of my chest! How unattractive am I going to feel!? And what can I do!?
I know there's so many more important things to be worrying about, but getting to my age in this situation with as little scars, procedures and war wounds as possible has been impressive compared to others, and I won't mind my transplant scars and marks because it's for the right reasons!!
But silly cuts and marks from miss placed ports etc I'm not a fan off and don't want it added to my list!!!
Anyways I'm saving pictures on my phone to show the surgeon exactly what I do NOT want to be left like! And come up with a plan we are both happy and agree too!
Anyways that's me for now. I'm very hyped up on Steriods, can't seem to sleep! And can't stop eating! Also the Steriods are making the veins pop out of my neck again and pressure more present in my head! Stupid vein, can't wait for stent now to be honest! Just not looking forward to injecting blood thinners into myself until the levels are correct then I can move onto warfrin!
Night all!! Much love xxx
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