Saturday, 17 March 2012

Dr Jones, Jones, Calling Dr Jones

Thursday i went to Manchester for a Clinic Appointment, for me it was kinda a big deal. Under the care at Stoke i was generally only last 3-4 weeks before i'd feel poorly again and having this virus i was worried what it was doing to my little lungies that i didn't know about! I feel well i'm just coughing and have a lot of crap to clear.  I've been doing my nebs lots though and really trying hard to stay well, its only been 3 weeks since i was discharged so i was scared this virus was going to start getting me, especially as i've had it about week and half now.

I arrived at Clinic and went into the room, Dr Jones was the first to come and see me, I'm used to the consultant coming in last at Stoke and i'm really not used to a consultant actually doing spirometry with me.  It's weird, but in he came with the lung function machine "dinosaur".  I'm used to tiny little electric machines to do ur spiro on so this is like going back to the dark ages.
I surprised myself, i'd expected a drop when i left hosp i blew 1.08, the number i always to try get to was 1.0 litre, if i blew under which has been most the time i'd be disappointed.  So when i blew 1.0 exactly i was pretty impressed with my lungs.  Finally they started to behave, it must be the Meropenim nebs and the Azithramycin everyday, since i've had the virus i'd doubled the dose of the Azithramycin.  Normally i would of had to put myself on Cipro too but i didn't feel i needed it and you know my feelings over Cipro and sunbeds.  I prefer the sunbeds!! lol

Dr Jones (r u like me that things of that Aqua song everytime u hear his name, i have to stop myself singing it in my head when i say his name)!! Well if you didn't think of it, you will now!! ha ha.
Anyway lol he wanted me to have another oral antibiotic just to protect my lungs cause the virus was lingering around, he mentioned Cipro but i asked for something else and he gave me Septrin so i'm on that for 2 weeks now with my Azith and Mero, hopefully i can carry on beating this virus and stay well for a lot longer.  It would be amazing if i can go a few months without needing ivs, it's something i've not done for about 3 years, so i have a target.  My next clinic appointment is April 26th, 6 weeks away then i will need to have ivs in may before the skydive, so i have a good target and it would be amazing if i was able to achieve this.

They were really please with me at clinic, i've been put on a small dose of iron tablets because i'm slightly anemic which is something i've never had before, i need to eat more brocoli and red meat i guess.  Although compared to where i lived with Steve my body probably doesn't know what's hit it with all the veg i'm eating, my vitamin C levels must be pretty good.

Dr Jones has also upped my Intraconazole dose, so i'll now be taking 200mg in the morning and 100mg at night, my blood levels show that my levels of absorption are low which could be for a number of reasons but my omprezole i take at night could be affecting it, so that why i'm now on a higher dose in the morning,  so hopefully my liver will behave itself.  It's good to have people around me who understand about my Aspergillus and how to treat it because it was one of things that frustrated me so much at Stoke.

Now for the interesting bit, when i was admitted in Wythenshawe one of the first things they noticed about me was the colour of my sputum, they said it looked very milky and like my feed! They tried a few ways to see if they could find out if feed was going into my lungs but nothing was conclusive.  Since i've been home at my mum and dad's house i have more or less two weeks off my feed because of the living arrangements not on purpose but i seem to of help my weight so that's good! Anyway i did a sputum sample and the whole team had a look at it and all agreed my sputum was now like "normal cf sputum" it's actually not milky anymore, its more yellow.  They don't know if this is because of my virus, so for the first time in my life, i've been feeding since i was 9, i've been told "NOT TO HAVE MY FEED" for the next 6 weeks. Which is sad is it was really exciting for me, been told not to have feed rather than been asked if i need to increase my feed.  If feed is going in my lungs it may of been one of the factors that been making me so poorly because if one thing i was always religious with at least 5 nights a week it was my feed.
So now i don't have to do my feed i just got make sure i keep eating, obviously if i start loosing weight they will rethink things, maybe give me extra calories in the day instead of my feed.  It maybe that because i've not been doing my feed that i've coped better with this virus and my lung function hasn't dropped so quickly after iv's.

I really happy i decided to move my care, they do things slightly different but i'm not scared of it been different because i really trust them.  I think Prof is fantastic, everyone does but i really like Dr Jones too, they listen too you and really understand and try and find ways to help you.  For me it's all about been able to trust the people who are looking after you and i really do feel that with Dr Jones.  Money a little tight and putting petrol in to drive to Manchester for a clinic appointment was kind of painful, but i teamed it with a trip to my lovely sister in laws who lives 30 mins away from the hospital! As i was at clinic though i felt so happy the idea of the cost just went away, i felt happy and safe and really looked after so the cost of some petrol really just doesn't compare.  That's what i want for my friends at Stoke, i want them to feel safe and looked after, instead of upset, ill and frustrated.

All in all a positive clinic appointment, something i'm not really used too! It a nice change to feel happy walking out clinic with a bag full of medication that i didn't even have to go and sit in pharmacy and wait for for half an hour, it was given to the CF Pharmacist and sorted and then bought to me whilst i was seeing the physio, dietcian and social worker and having my port flushed.  I had my port flushed for first time with no ice too, i told CF Nurse she could have one go and if it hurt me it would be the last time i was letting anyone needle my port without it been numb because they also use different needles to what i've been use to for 15 years.  Luckily it didn't hurt and i would happily let her do my port in clinic again without ice, but if i was on the ward where ice is on offer i would still choose to put ice on for few minutes first.

Here's to me and little body behaving for a change, lets hope the few little changes help, the septrin, intraconazole and the iron tablets and fingers crossed i can keep my weight up, it would be amazing not to need to have my feed although i would never have my peg removed.  Another great thing is at the moment if i'm not feeding i don't need my insulin, until i see Dr Rowe on the 26th April and she will make a decision to if i need it with meals in the evenings, i just got to spend the week before clinic doing a food and blood sugar diary so they can get a better picture of what's going on with me.
Then trouble i've been through with them just isn't worth it and it never has bothered me, it's just a lil tube and i'm completely comfortable with it, don't catch me covering it up when im sunbathing in a bikini! In fact its one of the best places too see how white i was when i go on sunbeds!!
My mission over the next few weeks is to be this brown!! xxx Sunbeds tan me please!! :) xxx
N i wouldn't mind to be on a lilo in a pool either but we can't ask too much from the world now can we! 


1 comment:

  1. Glad clinic went well and you're feeling so upbeat Jo..... keep it up!!!
    Love n hugs