So i've been here a week! What's been different so far?

So when the ward doctor came to clark me in, he asked what iv's i had 3 weeks ago at Stoke, to which i said Meropemim and Tobramycin.  I wrote him a list and the times i take my medication, i'm not the kind of girl who takes any tablets at 7 or 9am and don't appreciate been woken up for them when i'm in hospital.  I take most my tablets around 11 with my breakfast so i don't like to be woken! As usual he got a few things wrong and i was little upset when they put me back on the same iv's i'd just had 2 weeks of at Stoke, but i had decided i needed to take a step back here, show them what i do and let them do what they do! N the thing with Meropenim after a week and half i start to feel great.

All the IV drugs are given in bags of fluid here, they don't give iv's bolus, they say one it's extra fluid and two the more diluted the drugs are the better they can work in your system.  If you go home on IV's here you give them bolus except for the Tobramycin, you have to put it in a bag and hang it from a hanger somewhere.  Sounds like fun hey, no more syringe drivers, but they don't seem as strict here with the whole 24hrs thing, as long as it's 18 hours apart its fine to give, therefore i'll be able to do it at more reasonable hours than like at Stoke.  They also are giving me my meropenim every 6 hours instead of 6-8 hourly at Stoke. 

As planned from Clinic they were going start me on Mero nebs too, but wanted to get me better first.  They made a few instant additions to my medication though, Vitamin K tablets and they wanted me to have an Aminophylline drip overnight.  Something which i'd only heard of been used by Papworth before from my friend Clare and Aaron had it for three days with direction from Papworth.  I'd heard it helps your breathing and the physio here said that i was just to see if i could tolerate it and if i didn't like it to let the nurses know, they said it helps loosen the sputum so the next morning i might wake up feeling like there lots to get rid of. 

Here they want you to cough all your sputum for the day in a White pot, using as many pots as you want, none of us like looking or smelling our own sputum for long.  But u have to keep all pots and each morning the physios take them away and weight them. 

They do lung fuction and bloods twice a week here ready for ward meetings and then a ward round on Tuesday and Thursday.  When they needled my port i was nervous because the last few times in Stoke my port just wouldn't bleed back and i'd been through loads of problems getting my blood from my veins that they'd even tried my feet.  However they said if it didn't bleed back they use a drug here called "Alteplase" and they put that in your port for 2 hours and then after that the port bleeds back.  On sunday my port wouldn't bleed back so they had to use this drug and it worked, if only they used that in Stoke i might not of had to be stabbed so many times in my poor little non existent veins.

The reason i was feeling so bad this time was i just felt so over whelmed by the amount of sputum clogging my airways and it was so thick and stuck i could hear it and feel it but couldn't shift it very easy.  My hypertonic saline though my ultra sonic neb was helping but i felt like i needed more.  On the first day i didn't have physio, my physio Debra said she just wanted to talk through how i felt and what i do.  I wanted them to try work out if the Dnase was really helping me but they decided to take me off it for little while as i was convinced it was helping much and to be fair with the blood in my sputum i'd take it for a few days then be off it for 3.  I didn't really have a chance to work well for me.  So they decided that i could come off it for few months and see if i actually noticed a difference. 

The Aminophylline after a few days i really could tell the difference first thing in a morning, it only took for me to step from my bed to my ensuite, about 4 steps to my toilet and back and i'd be grabbing for the sputum pot and clearing loads, i could feel it all bubbling away in my upper airways.  So for this first week i was clearing so much sputum, i'd never seen so much come out my lungs before.  Problem was that the team were concerned about colour of my sputum, at Stoke when i used to fill in the form, my sputum was never yellow, green, etc, its always been a beige colour, milky, like feed coloured.  So since i've been here they been trying to find away to investigate if my feed is aspirating into my lungs. 

At first they were gonna test my sputum for sugar, then they decided they would look into dying my feed with food colouring and seeing if my sputum came out a different colour like blue or something.  But dietician poo poo'd that idea saying that the it would be contaminating the feed.  Personally it's feed, it goes in my tummy like all other food, adding a bit of food colouring too it is hardly contamination.  Her idea was to get someone from SALT team, Speech and Language Therapist to come and assess me, which happened today, i can swallow fine and they think this is more of a gastro problem.  They are blaming how fast i have my feed i think and want me to slow it down.  These days i only have one bag of Nutrison Concentrated just 500mls but it's 1000 calories but i run it at 225ml an hour so it's done in about 2hrs 20 minutes. 

Not only do they think that about my feed but they wanted to test my sugars for one night with my feed.  so i agreed to do them at the beginning, mid, end and 2 hours after.  But i just happened to ask the question if my sugars were high would that make me hot because for last few years i wake up every night i do my feed like clockwork between 3-4 am and i'm really hot.  So they said would i test my sugars for one night just every 2 hours.  Which i did!! I take lispro insulin at the time which is one of the quick acting one because my feed goes so fast and i always thought that my sugars were fine, every now and then i check them and they are normal with my feed.  Little did i know what was going on the rest of the night. 

My sugars on the Tuesday were:

Start: 8.2, Middle: 6.9, End: 6.5, 2hrs after: 13.0, 4hrs after: 12.1, 6 hours after: 3.8

Wed:

Start: 5.9, Middle: ---, End: 8.4, 2hrs after: ---, 4hrs after: 10.7, 6 hours after: 3.9

Then they changed my insulin to Humalog S

Start: 7.9, Middle: ---, End: ---, 2hrs after: 14.7, 4hrs after: 13.0, 6 hours after: 4.1

Then they upped the dose by one unit, because the hypos they worried if they up things too much they will make the hypo lower!

Start: 5.2, Middle: 5.8, End: 7.5, 2hrs after: 12.4, 4hrs after: 5.0, 6 hours after: ---

So now they talking about putting a "CGMS" Continuous Glucose Monitoring System in my tummy for 5 days, it will take a sugar level every 5 minutes, means i can go back to sleeping through the night and not worry about been woken every 2 hours for my sugars and they can get a better idea of what's going on with my sugar levels.  If they do put it in though not sure i'll get discharged next monday cuz that will be day 5. 

On Thursday last week they added in a 3rd IV, i've never had 3 before and it was weird to me when they said it was Septrin! To me septrin is a broad spectrum antibiotic it doesn't treat psuedomonas.  So i didn't understand what it mean't! But I asked the question and they explained if you imagine all the bugs in my lungs are like an Army lined up and ready to defend again the usual Tobramycin and Meropenim, well if suddenly an antibiotic like Septrin comes along that they aren't expecting this will lower their defences and then the Tobi and Mero can attack them better. 

The nurses are really good here, they really understand CF and that's what makes a huge difference, they don't just come in and give you drugs, they understand about your drugs and why you need them.  It really makes you feel like your in safe hands on the ward.  I feel safe here and thats not how i ever felt at Stoke.  At Stoke i felt the need to check everything that was been given to me and there was no point asking the busy staff to explain stuff to you because in all honesty you never felt important as patient. 

Here they treat us a people and the treat the whole person, it's great, they even have beauty therapists come in twice a week and give free treatments.  Last week i had my toes painted and a lovely back massage!! So far i'm really glad i've made the move and i still have so much more to tell you but i'll save that till my next blog!