I've been blogging alot since i've been here, i think talking about my CF is a great distration and when your in here you have way too much time to think and writing my blog takes up time and gets things off my chest, it's like when i'm sitting here in my room on my own, that in someway writing my blog i'm actually talking to someone.
So i've had two and a half weeks of iv's and my lung function a few days hit 41!! It was 27% when i came in so i'm really happy with that. It's been good staying in for the two n a bit weeks of iv's here for my first admission as it means the physios have been able to see things for themselves how much i cough up with sputum when i get poorly then how it trails off and at the end of ivs nothing comes up! Was just a small little pea size blob yesterday and today so far nothing. But then this is process of my cycle and a week and half two weeks after iv's finish the sputum comes flooding back again.
So hopefully that's something that the Meropenim nebs will help with, they've also today put me on Azithramycin every day, i used to have this years ago but at stoke they want you to take it three days a week, Mon, Wed, Fri and i just couldnt remember it. So least every day i'll add it too my million of normal night time pills and remember it! I got given this pill box to help me
Physio wise she's starting to realise that my hypertonic and acapella don't do as much for me when I'm well but you can still hear the sputum and feel it's down there, even the bird stopped working. So i'm not using that now! I've just been doing exercise in the gym still and i'm still improving each time! Monday i even went to the Trafford Centre with my brother and was able to walk round for hour with our sitting or feeling too tired, although when i'm shopping and i'm well i can normally power thru a good shopping trip.
I've also this week tried a good old fashioned pep mask, which was like going back to the dark ages don't think used one for about 15 years, but it seemed to actually help! I used it for the 5 breaths and then used my acapella for the two long breaths out and i actually moved sputum. So hopefully using the two together will actually help to move sputum when i'm all clogged up but my chest is tights!
I've done an exercise tolerance test, had to peddle on the bike for as long as physically could, it was hooked up to a computer and it got tougher, i only lasted 5 mins before my legs gave in, but i really did push myself. In doing it though my lung function dropped afterwards, which they think is because the exercise moves sputum so they want me to consider getting a bike or something for home. I'm going to canccel my gym memebership now, i've not been in 4 months and i'm never likely to go to be honest. Now having used the treadmill here i know i have such a low tolerance and i'd be coughing and i couldn't stand next to fitness freaks doing it. So i need to find away to get exercise in a home. The last exercise bike i had i hung my clothes from it and used it about twice!! Not sure where i'd put one in the house though! So they lending me some peddals that i can use sitting on a chair to try!! :)
I'm so used to my consultant seeing me every few days and been at a hospital so pressured on sending people home that every time at Estimated Discharge Date (EDD), been told it's not a hotel and I can't stay there forever, here they don't even mention home, in fact they almost want you to feel like its a hotel and your happy here that they don't want you to go home till your really ready. I hoped i'd be going on Wed but i'm definately going home today (friday). I'm glad now i think i'm ready to go home now I actually feel really good x
It's gonna take some time to get into my new routine of all the things i need to do, but hopefully i can make it all work for me and i can actually stay well for a while, cuz i didn't managed to get signed off on my mixing my home ivs, so i will have to come back in to hotel Wythenshawe next time im ill for a few days! But do you know what, that actually doesn't scare me for a change! I feel safe and well looked after here and i'm actually gonna miss my bacon and tomato sandwich been delivered to my room every day at 1pm. I'm going home today after i've eaten it, so i'd best get packing!!
Thanks for reading my blogs on my big decision n move, i'll try not to leave it to long to blog again, but it's back to work next week and i won't have all this time on my hands like usual!
Speak soon! xxx
Oh n i forgot to tell you, whilst i was here i rang the local paper and got my story in about moving. So check out the article x Just to mention though we haven't failed in our mission to get a CF Unit @ UHNS we are still fighting for it and i've just been for a meeting a Westminister with CF Trust Chairman and our local MP Rob Flello so it's still a very slow and frustrating work in progress.
http://www.thisisstaffordshire.co.uk/Lung-patient-faces-40-mile-journey-care/story-15292693-detail/story.html
Tell you more when i know more!! But i have my official meeting on 2nd March at Stoke about the reasons i transfered my care so that should be interesting!
Got to pack now!! Especially if i want to get my nail appointment!! lol
Bye xxx
Friday, 24 February 2012
Tuesday, 21 February 2012
So now i'll show what it's like here at Wythenshawe CF Unit?
So i've blogged loads about my treatment and how that's improved with my move, but i've not told you or showed u what it's like here!
So that's a general room and the food talked about!! Speaking of food my bacon n tomato toastie just arrived for lunch, yum yum! so i'm off to eat! Next blog be back to me!! :) hee hee!!!
So my Room! I like it, its cute and cosy!! There is a wardrobe at the end of the bed! Which when you open it has a rail and shelves, n full length mirror! Then there is a fridge, sink and
Each room is like it's own little flat, reminds me of my university room at Chester. With the good sized wardrobes and cupboards to put all my other stuff in. Then there little desk and chair, and a comfy chair for my visiters, or for me when my bum get numb from being sat on a bed! Yes i'm weird i know! The beds are electric, and have an extra matress on them, they are comfy. There are two fridges, one for food and one for medical. The nurses have there own area in your room with a trolley full of supplies, there a cupboard on the wall for all your medication, you can self medicate, but i chose not too, if i'm in here i like to be looked after and have a break.
Everytime you use a nebuliser the nurses or the physio was it out for you, and the health cares set feed up for me everynight! It's really nice to feel looked after and that people have time to help you, especially when i first came in and was poorly and going to the loo was hard work, its good to have people who do the little things for you.
The ensuites are small, but i think for what i need, a loo and a shower the size is fine. it's not like us CF patients get fat or anything we don't need that much room. lol.
Most the time you don't feel like your in hospital when you just sat in your room, in the day though its like Crewe Station busy busy busy. About 9am your door starts to go, every 10-15 mins some morning i swear people knock, but i've learn't to lie facing the opposite way n pretend to be asleep even if i'm not. i tend to wake up bout 10.15, i haven't been ordering breakfast, but u'll be jealous to find out what's actually on the menu! So i'll tell you. There are 3 Chef's here that work shifts, they cook everything fresh and just how you want it. The menu is different for starters and main course each day and the menu's run on a 3 week cycle so more patients in for 2 week course don't have to choose same things twice or three times. At stoke i would pick chicken, mash peas and gravy everyday and i would get so sick of it, but it was the only edible thing on the menu.
On the Menu for Breakfast each day you can choose from:
Cereals: Corn Flakes, Frosties, Rice Krispies, Crunchy Nut Cornflakes or Bran Flakes.
or: Porridge, White or Brown Toast, Roll, Crossaints or Danish Pastry,
Cooked Breakfast: Bacon, Sausage, Beans, Scrambled Eggs, Tomato, Black Pudding, Hash Brown.
Then an Example of Main Meals which you can choose for lunch or dinner or have something different for each and they are different each day.
Starters: Sweetcorn Chowder Soup with Bread Roll, Spring Rolls with Soya Sauce or Garlic Mushrooms in a Creamy Sauce.
Main Course: Breaded Chicken Strips, Lamb Tikka Masala, Pork and Apple Casserole, Jumbo Fish Fingers with eiher Roast Potatos, Chips, Cabbage, Baked Beans, Mixed Salad.
Puddings: Lemon Meringue, Rice Pudding, Cheese & Biscuits, Ice Cream, Jelly or Fresh Fruit Salad.
Then there are a range of Snacks that are available Snacks or Small Meals to choose from for Dinner and Tea if you wish:
Toasted Sandwiches: Ham & Cheese, Cheese & Onion, Cheese & Tomato or Other
Sandwiches: Baguettes, Siced Bread or Roll with: Cheese, Ham, Beef, Egg, Chicken Tikka, Tuna, Prawn or Bacon.
Jacket Potatos with either: Cheese, Beans or Tuna Mayo.
Or Sausage Sandwich, Bacon Sandwich, Beans on Toast, Cheese on Toast, Toast or Chicken Goujons with Mayo Dip.
Now that's what i call a menu, the food is really good, not had a meal i've not liked yet and i've been here two weeks now. I've had lovely Cottage Pies, Braised Steak, Lamb hotpot, Battered Cod, Risotto. I've had to ask for small portions when i first came in because it was too much for me to cope with, you can ring the chef at anytime and we also have a phone in our room that people can ring us on.
I'm not normally one for taking photos of food, but took a few photos of my meals just to show how they look nothing like hospital food.
At 8pm every night comes a snack trolley, with freshly made cakes, jelly, yogurts, cheese & biscuits, sandwiches, chocolate, sweets, crisps and it's all free. Pretty amazing really.
So that's a general room and the food talked about!! Speaking of food my bacon n tomato toastie just arrived for lunch, yum yum! so i'm off to eat! Next blog be back to me!! :) hee hee!!!
Friday, 17 February 2012
Update of what's been different with my treatment?
So i've been here a week and a half now, i can honestly say my little lungs are starting to feel better and i'm feeling more like myself. I kind of feel safe here, like they really are doing alot to help me but it's when i go home the reality is going to hit me!
Here i feel like i've really been looked after, when i said in my last blog they treat the whole person not just the chest i mean't it. I've come here from Stoke with so many problems that have been ignored or never really uncovered. I've had to show people what i've been doing for last few years and let them make changes where they see fit.
Since i came here i was so overloaded with Sputum, i've never cleared so much and i've had so much help with that, i was taken for a little walk when i came in and little did i realise my sat's actually dropped whilst i walked around. I knew that I couldn't walk around on the phone anymore, so if people ring me, i always call people back when i can sit down or i'm on my hands-free in car. I'd get too out of breathe, now i know why. So when they wanted to take me in to the gym in afternoons and they said they wanted me to use oxygen it was a little upsetting for me. I used o2 on treadmill for about a week, but now i'm feeling loads better i don't need it and i'm doing 15 mins instead of 10.
My physio went through the routine i have at home, which consists of using my ultrasonic neb for my Imatropium and Hypertonic Saline and then if needed i use my acapella. But i tend to shift most my sputum with the nebs and only use the acapella on occassions i feel there still more down there. Having seen me do the nebs and clear alot of sputum with my nebs and then go on the clear nothing with my acapella she decided she'd like me to try the Bird. This was something i'd never had opportunity to use before, at Stoke they have one and i've know Aaron uses it when he's in hospital but it wasn't something i was ever given the opportnuity to try. As it always stayed in Aaron's room and he was the only one who used it, i'm not saying that in a bad way, i know he needed it, but here they bring the bird in and out for treatment and then other patients can use it also, they just leave all the tubes and mouthpiece which a for patient use in peoples rooms. Therefore other patients on the ward can use it too!
The bird works in a way that when you start to take a breath in it forces air in, i would then take as deep as breath as possible and then hold it for few seconds before breathing all the way out. On the breath out it would sound to me like i had lions or tigers bubbling away, so much sputum i just need to clear and it really did help, it made clearing sputum almost effortless except for the cough, but most time it came up so easy. I would do 3 r 4 breaths and then the sputum would easily just come up.
I found it so helpful for a week, i started using it last friday, the last few days though it hasn't worked as well but my lungs are so much clearer now and i can really feel the difference and i'm not choking on sputun all time, i feel alot better. When i was admitted my lung function was 27% after a week iv's here i was up to 38% FEV1. 38/39 is my safe numbers, i feel ok with them but i don't seem to be able to keep it there and its usually what i make it too after the two weeks not after 1 week. So i'm really hoping next week to get maybe to 40% with my lung function!! Wish me luck!!
I've also now started Meropenim nebulisers, they taste awful and make me cough a bit and i'm gonna have to be strict with myself to do the nebs twice a day at home. Hopefully the mero will help keep me well at home.
Sugars wise, i now have the CGMS device in my tummy, it's there till monday and will give 5 days worth of readings, then it will be taken out and the information put onto the computer, i'm having to keep a food diary and test my sugars just four times, pre meals and feed just so they can make sure the monitor has worked correctly.
The CGMS (Continuous Glucose Monitoring System) is a little decice that they put in with a small needle, it didn't really hurt i just felt a small pinch. It has like a small sensor on it and then the white cap in second photo is like the memory that saves all the information. Quite clever really!
Right my CF is main and most important part of my life i need to put my health first and get myself well so i can go home and sort my life out. It's not going to be easy to go home and quite honestly i've become quite safe here and life is so much easier here. I've not even had chance to tell you about the food and the snack trolley yet, you'll have to wait till sunday. I'm having a trip home tomorrow to see my little puppy cuz i'm missing her like crazy.
Here i feel like i've really been looked after, when i said in my last blog they treat the whole person not just the chest i mean't it. I've come here from Stoke with so many problems that have been ignored or never really uncovered. I've had to show people what i've been doing for last few years and let them make changes where they see fit.
Since i came here i was so overloaded with Sputum, i've never cleared so much and i've had so much help with that, i was taken for a little walk when i came in and little did i realise my sat's actually dropped whilst i walked around. I knew that I couldn't walk around on the phone anymore, so if people ring me, i always call people back when i can sit down or i'm on my hands-free in car. I'd get too out of breathe, now i know why. So when they wanted to take me in to the gym in afternoons and they said they wanted me to use oxygen it was a little upsetting for me. I used o2 on treadmill for about a week, but now i'm feeling loads better i don't need it and i'm doing 15 mins instead of 10.
The bird works in a way that when you start to take a breath in it forces air in, i would then take as deep as breath as possible and then hold it for few seconds before breathing all the way out. On the breath out it would sound to me like i had lions or tigers bubbling away, so much sputum i just need to clear and it really did help, it made clearing sputum almost effortless except for the cough, but most time it came up so easy. I would do 3 r 4 breaths and then the sputum would easily just come up.
I've also now started Meropenim nebulisers, they taste awful and make me cough a bit and i'm gonna have to be strict with myself to do the nebs twice a day at home. Hopefully the mero will help keep me well at home.
Sugars wise, i now have the CGMS device in my tummy, it's there till monday and will give 5 days worth of readings, then it will be taken out and the information put onto the computer, i'm having to keep a food diary and test my sugars just four times, pre meals and feed just so they can make sure the monitor has worked correctly.
The CGMS (Continuous Glucose Monitoring System) is a little decice that they put in with a small needle, it didn't really hurt i just felt a small pinch. It has like a small sensor on it and then the white cap in second photo is like the memory that saves all the information. Quite clever really!
She's so bloody cute i cant wait for a cuddle with her!! :) She's my world right now!! :)
Thursday, 16 February 2012
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!
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!
Tuesday, 14 February 2012
My first visit to Wythenshaw CF Unit
So my move to Manchester started on 25th January, i came for my first clinic appointment with my mum again, i think i need support until i get to know these people a little better.
I arrived and Prof Webb came to my door and said he wanted me to meet the other consultant Dr Andrew Jones, which made me a little nervous, having left Stoke because i really struggled to trust my consultant and team in Stoke this gave me butterflies. I was also singing Aqua's Dr Jones, Jones, Calling Dr Jones in my head, which really wasn't helping. When he came in, i felt completely at ease, just like Prof Webb he listened to me and what i wanted, needed and felt. I met a few of the team whilst i was there, physio and dietician i had met before and a social worker. They had all decided that they wanted to wait till i was admitted to get to know me and have a really good look at my treatment etc. However there was a plan hopefully to start Meropenim nebs as they have had good results over the last year with patients responding well. For me i'm hoping it helps me too, Mero is my Iv wonder drug it really helps me feel loads better but doesn't seem to last for long anymore like the rest of drugs cuz after two weeks i feel poorly again. Having only just come out of Stoke and finished IV's though they were happy for me to wait until i became unwell again and then i would be admitted.
Not sure like me i though it would be so soon, on the following tuesday 31st, i rang to ask them to put me on waiting list for a bed, they said there were beds available at the moment so when i needed it i could just ring up, however i wanted to get through my week at work and my personal situation meant my life had been turned upside down, i knew my lungs wouldn't make it though. On the friday i rang up and the said because i'm new if i could make it through weekend and come up monday there would be the whole team round to assess me but my name would be on a bed for the whole weekend if i needed it i was to come in.
I made it till monday and i drove up in my car, packing was hard work, my cute little Soph curled up in my suitcase as i was trying to fill it, lol!! Steve took her to his mum and dad's cause he works long hours so it's not fair on her when i'm away to leave her all day. I cried buckets cuz i knew i wasn't going to see her for 2 weeks. Its so hard not seeing her, i never understood "Dog People" as i used to call them, but christ she really is my little girl and i'm so used to her being around me, curled up with me it's so hard without her!
So i arrived on the ward and was shown to my room, straight away i was made a cuppa!!! Shown around and welcomed by all the staff, it was really nice. I'd had a look around the ward when i came for my second opinion but i was shown round again. Didn't realise they had a washing machine and dryer!! Not that i plan on doing washing here!! There was loads of things straight away that felt different but in a really good way.
I was so nervous about them needling my port, especially when i realised they used different needles here, grippers only! CF's are so protective of their ports and i'm no different, its hard to let people do things differently and they only use 5 ml syringes for flushes and only flush with about 3 mls. I'm used to a 10ml flush, before, between drugs and at the end. So that was little different, if i'd of been anywhere else i prob would of felt a bit alarmed, but i do really trust them here. They also only give a couple of mls of heparin to lock of the line, instead of the 5 mls im used to each time. When i asked why they said it's because it's a blood thinner and CF's who a prone to bleeds don't need too much blood thinners. So that was all good and i kinda got used to the new needle after a while! All though the two clamps are a little annoying!!
I was given a menu to choose lunch and dinner off, couldn't believe my eyes there was so much choice. I didn't really have much of an appetitie. Had Cheese and Onion Toastie for lunch and Chicken Risotto. Then at 8pm came the snacks trolley came round, couldn't believe my eyes, it's all free!!! Fresh cakes, yogurts, jelly, biscuits, crisps, chocolate, sweeties.
So fingers crossed they gonna help me here and i'll have these ivs and be able to go home and have some kind of life for more than a few weeks. Cuz when i get home things are going to change and i need to be well to cope with them.
I arrived and Prof Webb came to my door and said he wanted me to meet the other consultant Dr Andrew Jones, which made me a little nervous, having left Stoke because i really struggled to trust my consultant and team in Stoke this gave me butterflies. I was also singing Aqua's Dr Jones, Jones, Calling Dr Jones in my head, which really wasn't helping. When he came in, i felt completely at ease, just like Prof Webb he listened to me and what i wanted, needed and felt. I met a few of the team whilst i was there, physio and dietician i had met before and a social worker. They had all decided that they wanted to wait till i was admitted to get to know me and have a really good look at my treatment etc. However there was a plan hopefully to start Meropenim nebs as they have had good results over the last year with patients responding well. For me i'm hoping it helps me too, Mero is my Iv wonder drug it really helps me feel loads better but doesn't seem to last for long anymore like the rest of drugs cuz after two weeks i feel poorly again. Having only just come out of Stoke and finished IV's though they were happy for me to wait until i became unwell again and then i would be admitted.
Not sure like me i though it would be so soon, on the following tuesday 31st, i rang to ask them to put me on waiting list for a bed, they said there were beds available at the moment so when i needed it i could just ring up, however i wanted to get through my week at work and my personal situation meant my life had been turned upside down, i knew my lungs wouldn't make it though. On the friday i rang up and the said because i'm new if i could make it through weekend and come up monday there would be the whole team round to assess me but my name would be on a bed for the whole weekend if i needed it i was to come in.
I made it till monday and i drove up in my car, packing was hard work, my cute little Soph curled up in my suitcase as i was trying to fill it, lol!! Steve took her to his mum and dad's cause he works long hours so it's not fair on her when i'm away to leave her all day. I cried buckets cuz i knew i wasn't going to see her for 2 weeks. Its so hard not seeing her, i never understood "Dog People" as i used to call them, but christ she really is my little girl and i'm so used to her being around me, curled up with me it's so hard without her!
So i arrived on the ward and was shown to my room, straight away i was made a cuppa!!! Shown around and welcomed by all the staff, it was really nice. I'd had a look around the ward when i came for my second opinion but i was shown round again. Didn't realise they had a washing machine and dryer!! Not that i plan on doing washing here!! There was loads of things straight away that felt different but in a really good way.
I was so nervous about them needling my port, especially when i realised they used different needles here, grippers only! CF's are so protective of their ports and i'm no different, its hard to let people do things differently and they only use 5 ml syringes for flushes and only flush with about 3 mls. I'm used to a 10ml flush, before, between drugs and at the end. So that was little different, if i'd of been anywhere else i prob would of felt a bit alarmed, but i do really trust them here. They also only give a couple of mls of heparin to lock of the line, instead of the 5 mls im used to each time. When i asked why they said it's because it's a blood thinner and CF's who a prone to bleeds don't need too much blood thinners. So that was all good and i kinda got used to the new needle after a while! All though the two clamps are a little annoying!!
I was given a menu to choose lunch and dinner off, couldn't believe my eyes there was so much choice. I didn't really have much of an appetitie. Had Cheese and Onion Toastie for lunch and Chicken Risotto. Then at 8pm came the snacks trolley came round, couldn't believe my eyes, it's all free!!! Fresh cakes, yogurts, jelly, biscuits, crisps, chocolate, sweeties.
So fingers crossed they gonna help me here and i'll have these ivs and be able to go home and have some kind of life for more than a few weeks. Cuz when i get home things are going to change and i need to be well to cope with them.
Sunday, 12 February 2012
My last admission at UHNS!!
It's been 2 months since i last wrote on my blog!! To say it's been busy, stressful time is pretty much an understatement. I don't know what's happened to my life in this last few months. Some things i'm ready to talk about now others i don't think i'll be ready for a long time so you'll have to bare with me if u read this and feel like i'm hiding something, cause I am.
Last time i wrote my blog in December i was telling you i had decided to move my CF Care to Wythenshaw Hospital. Well the process was very slow, seems admin can't write letters very fast. I hoped it would all be ready so it would be new year new start. But on 4th Jan Wythenshaw still hadn't recieved the letter and i felt really poorly so i ended up been admitted to Stoke in the new building that the respiratory wards had moved to!
I guess it gave me a chance to check out the new facilities on Ward 233 for myself, all i can say is bigger is not always better, the new respiratory ward has 32 beds for all respiratory patients and 16 of them are side rooms which is a huge inprovement from the 3/4 side rooms we had access to on Ward 79. The walk to the ward when you're poorly is exhausting, the length of the ward is ridiculous and it's not just the patients who find that, the staff are shattered after the shift, the ward is that big they have two nurses stations and split the staff into two teams to look after 16 beds each. The rooms are big, probably too big and the ensuite toilets are a definate improvement but they didn't need to be that huge, just a complete waste of space. With all the space they've wasted they could easily of put a 6 bedded CF unit into the plans. You can tell it was designed by someone who has never been a nurse and worked on a ward. The decor makes u feel bit better its clean and fresh and has really large windows, can see for miles and a great view of a34 you can see your visitors coming and watch them park up.
I may sound pretty negative, well i suppose i am, the hospital staff really thought that these new facilities were going to be the answer to what we needed and we'd stop fighting for a CF Unit but it's just made us realise more how much we need one, the staff are now even busier, less time to look after us and less time to really understand the complexity of CF. All they can do if give u some pills and ivs and they aren't given on time, 10 o'clock ivs are given after midnight most nights, day time more like 4pm than the 2 oclocks. Now there is more beds, patients don't have to wait as long to get in, there have been up to 9 CF's in at a time since the move in November and the staff just can't cope. CF Trust guidelines say that you should see a physio twice a day, you're lucky to be seen once. Most patients are asked to self-medicate because there is one paed cf physio and one adult and they are constantly covering for each other because they have to much time off. Most of us go in hospital and stay there for the extra physio and because we need help, if we were well enough to self medicate wouldn't we be at home!! Yes we would.
That's a concept they just don't see to get at Stoke, we don't want to be hospital and making that decision to go in is a difficult one, then when your there you know as much as you want to go home you have to stay till they are ready. There is way to much enphasis put up estimated discharge date everytime you see the consultant and when you tell them you're not ready to go home they tell you "it's not a hotel"!! Well.... i think we know that, the foods crap, they ain't clean, the care isn't what it should be so why else would you want to stay unless you feel like your not well enough to go home.
I wonder sometimes what goes through the heads of the CF Team at Stoke, I've made complaint after complaint and told them ways they could improve things it just goes in one ear and out the other. It's not just me my friends there are driven mad by the same uselessness to listen, to change and to do anything about things. That's why in the end i made my decision to go!
Those 8 days i really felt poorly, normally when i'm in hospital i go home every evening, the luxury of living 6 miles away from the hospital, but i went home twice for a hour or two but it was exhausting. The staff on Ward 233 are lovely, they do try and it's not their fault, they over worked, under staffed and unable to do their jobs properly at all because of the conditions they have to work in.
I went home on my IV's but i still wasn't feeling well, i felt a little pushed out but i wanted to go home and look after myself, nothing they were doing for me there, especially when my last two days i stayed for extra physio and didn't see one at all, wasn't any point in being there. From my hospital bed i had finally sorted my transfer and had an appointment for CF Clinic in Wythenshaw for the 25th Jan. I was so excited to leave where before i'd actually been quite teary, but to be fair i was sick to death of the crap that came with things there. I fight every day to stay alive, i shouldn't have to fight a hospital for my care.
Although i've now moved which i'll tell you all about in my next blog, i will still be campaigning and continuing to fundraise for a CF Unit at Stoke, that's for all my friends. Not everyone will be able to take this opportunity to move hospitals and they deserve so much more.
xxxxxxx
Last time i wrote my blog in December i was telling you i had decided to move my CF Care to Wythenshaw Hospital. Well the process was very slow, seems admin can't write letters very fast. I hoped it would all be ready so it would be new year new start. But on 4th Jan Wythenshaw still hadn't recieved the letter and i felt really poorly so i ended up been admitted to Stoke in the new building that the respiratory wards had moved to!
I guess it gave me a chance to check out the new facilities on Ward 233 for myself, all i can say is bigger is not always better, the new respiratory ward has 32 beds for all respiratory patients and 16 of them are side rooms which is a huge inprovement from the 3/4 side rooms we had access to on Ward 79. The walk to the ward when you're poorly is exhausting, the length of the ward is ridiculous and it's not just the patients who find that, the staff are shattered after the shift, the ward is that big they have two nurses stations and split the staff into two teams to look after 16 beds each. The rooms are big, probably too big and the ensuite toilets are a definate improvement but they didn't need to be that huge, just a complete waste of space. With all the space they've wasted they could easily of put a 6 bedded CF unit into the plans. You can tell it was designed by someone who has never been a nurse and worked on a ward. The decor makes u feel bit better its clean and fresh and has really large windows, can see for miles and a great view of a34 you can see your visitors coming and watch them park up.
I may sound pretty negative, well i suppose i am, the hospital staff really thought that these new facilities were going to be the answer to what we needed and we'd stop fighting for a CF Unit but it's just made us realise more how much we need one, the staff are now even busier, less time to look after us and less time to really understand the complexity of CF. All they can do if give u some pills and ivs and they aren't given on time, 10 o'clock ivs are given after midnight most nights, day time more like 4pm than the 2 oclocks. Now there is more beds, patients don't have to wait as long to get in, there have been up to 9 CF's in at a time since the move in November and the staff just can't cope. CF Trust guidelines say that you should see a physio twice a day, you're lucky to be seen once. Most patients are asked to self-medicate because there is one paed cf physio and one adult and they are constantly covering for each other because they have to much time off. Most of us go in hospital and stay there for the extra physio and because we need help, if we were well enough to self medicate wouldn't we be at home!! Yes we would.
That's a concept they just don't see to get at Stoke, we don't want to be hospital and making that decision to go in is a difficult one, then when your there you know as much as you want to go home you have to stay till they are ready. There is way to much enphasis put up estimated discharge date everytime you see the consultant and when you tell them you're not ready to go home they tell you "it's not a hotel"!! Well.... i think we know that, the foods crap, they ain't clean, the care isn't what it should be so why else would you want to stay unless you feel like your not well enough to go home.
I wonder sometimes what goes through the heads of the CF Team at Stoke, I've made complaint after complaint and told them ways they could improve things it just goes in one ear and out the other. It's not just me my friends there are driven mad by the same uselessness to listen, to change and to do anything about things. That's why in the end i made my decision to go!
Those 8 days i really felt poorly, normally when i'm in hospital i go home every evening, the luxury of living 6 miles away from the hospital, but i went home twice for a hour or two but it was exhausting. The staff on Ward 233 are lovely, they do try and it's not their fault, they over worked, under staffed and unable to do their jobs properly at all because of the conditions they have to work in.
I went home on my IV's but i still wasn't feeling well, i felt a little pushed out but i wanted to go home and look after myself, nothing they were doing for me there, especially when my last two days i stayed for extra physio and didn't see one at all, wasn't any point in being there. From my hospital bed i had finally sorted my transfer and had an appointment for CF Clinic in Wythenshaw for the 25th Jan. I was so excited to leave where before i'd actually been quite teary, but to be fair i was sick to death of the crap that came with things there. I fight every day to stay alive, i shouldn't have to fight a hospital for my care.
Although i've now moved which i'll tell you all about in my next blog, i will still be campaigning and continuing to fundraise for a CF Unit at Stoke, that's for all my friends. Not everyone will be able to take this opportunity to move hospitals and they deserve so much more.
xxxxxxx
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