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The expert patient

09 Thursday Mar 2017

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I think I’ve written about this previously,  but my GP actually called me this the other day. I was at the doctors, as I am almost weekly at the moment and my Doctor who I respect massively said “well it’s easier when you have an *expert patient*” now, I know why he said this but I can’t help feeling like I’m a nuisance to them, I hate the fact that the doctors and support staff recognise me and say hi Stephanie when I go in, the logical part of my brain knows that they are just being polite but the anxious overthinking part my brain feels as though they are fed up of seeing me, these feelings were made worse in the last couple of weeks let me fill you in.

So on the 3rd of January my peg tube fell out due to the balloon springing a leak. I went to Stoke Mandeville Hospital as I’m supposed to and had to get a new tube inserted. This time there was a problem the hole had started to close so I needed to have a RIG placed

**A radiologically Inserted gastrostomy is a technique whereby a narrow plastic tube is placed through the skin, directly into your stomach. Once in place the tube can be used to give you liquid feed directly into your stomach, to provide nutrition.**

 

As soon as I came round from the procedure I knew something wasn’t right I had pain unlike anything I’ve had before which turned out to be free fluid and air in the abdomen which of course got infected I ended up staying in hospital for almost 3 weeks. Even once home I felt that something wasn’t right and i was having temperatures and abdominal pain (upper left) .  I’ve been back and forth to the doctors for various antibiotics, which seemed to work for a while but then the pain and infection would rear its ugly head again. I’ve been back and forth to the hospital and we couldn’t find out what was going on, and why I wasn’t getting better!

On the 24th Feb I went in with massive temperatures which we couldn’t control at home. I was kept in for 24 hours for IV antibiotics and they also checked the placement of the Peg which was fine (as I had told them it was). On this admission something went wrong! As I was signing in at the reception of accident and emergency at Stoke Mandeville Hospital,  the woman behind the desk could not understand my surname and kept writing it wrong telling me I wasn’t on the computer,  so I wrote it down in capital letters clearly. She still got it wrong! which I simply cant understand (its not like it was rammed). it might not seem that important but it meant that the blood test results and the swabs that were taken were under a different name, and therefore were not checked.  This proved to be a real problem as they showed I had a extremely serious infection which needed treatment. I continued struggling on trying to convince myself this pain was in my head and that I should just man up.

So this week I had to see the duty doctor (GP) as the second or third (lost count) lot of antibiotics had stopped working and the pain was increasing AGAIN, she wanted to get me admitted but I begged to stay home, she agreed on the condition that I see my regular doc after the weekend (cue crazy voice thinking/saying things like *back again!* and I felt rather anxious) but I did agree to come and see Dr P.

Well Dr P took one look at me and knew I wasn’t good, he wanted me seen at the hospital so off I went.

The docs and nurses had 8 attempts at getting blood and after each failure they called a more senior person.  I was in the waiting room for 13 hours in total! 13!

Whilst there Dr P called and said you need to go and tell your doctor your swab results are back it’s MRSA! (in my peg stoma site infection centred on stomach wall its thought) Bloody marvellous that’s just what I wanted to hear!  

The problem was these results were under the misspelt name so didn’t show up on my arrival!

So I tell the doctor and things finally start happening, I’m told that I will need a  PICC line and I will need very strong antibiotics at which point I told them I was not staying hospital. There are several reason for this, the first being the children, it upsetting for them and disruptive and of course I miss them  on a more practical level we would need before and after school club to cover hubby’s working hours and we simply cannot afford this. Thankfully with the persuasive powers of a specialist nurse “L” they agreed to let me go in for IV antibiotics and come home in-between doses. this is obviously needed but if I am being 100% honest I’ve simply had enough! this isn’t normal I can’t help but to ask why? why is all this happening to me? of course I put on a front and pretend that I am fine with all this, but it underneath I’m not fine I’m struggling mentally and physically and practically. What I want is someone to come and scoop me up take control and deal with all my s*** because I feel like I want to run away, but that’s not gonna happen. I now have 2 medical devices “in” my body – my feeding tube and a PICC line, I know the PICC wont be there forever but its just another thing to make me feel ugly. I wish that I just got colds or sore throats but NO I get pneumonias and MRSA. Its exhausting and I genuinely feel alone in this – making friends is hard especially when you are as unreliable as me – not through choice – some days I’m just so tired that if I don’t have a nap I could fall asleep at the wheel on school run (not that I would drive if I felt that tired).

I’m going to come back to this tomorrow but for now it mega late and I need to be asleep

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Mummy blog – because what ever I go through so do they

29 Sunday Jan 2017

Posted by in Jan 2017

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well as title says really? and I know its not just the kids it G as well.

When I’m in hospital or unwell it effects the whole house which is one of the many reason I have being in hospital, I can see the effect sit having and yet am powerless to help. there is the emotional side the practical side and the financial side (drinks snacks and dreaded parking/petrol etc.)

D is now 5 but is very much a mummy’s girl at heart although se wraps daddy round her little finger!  and gets away with murder when he’s on duty lol and K is 11, which is a funny age as he’s entering puberty so has all these emotions and has no idea how to handle them – (although now I’ve typed that it sounds like something someone would use to describe all men lol).

We have found that the kids find quick visits easier to deal with, so we manufacture scenarios where they will pop and see mum on the way to, or from X.  This means they don’t get bored and or upset and its nice and upbeat and they can perhaps come twice in a day even if for only 20 minutes at a time set up . Also with D being so active she simply can’t stay still enough and for some reason she is ALWAYS hot in hospitals (perhaps a bit stressed) and a 5 when your hot you take clothes off, which obviously isn’t ideal lol ! !!

K on the other hand goes really quite and doesn’t really know how to handle it as he wants to help but knows he’s out of his depth. Oh that reminds me we were referred to a young carers group and we had a meeting with someone before Christmas and he’s been accepted and this will give him a great place to meet like minded kids who understand what its like to have a mum with additional needs or disability’s or illness’s, they have a youth club and activities. also we have signed him up for scouts – and as long as we can sort out some transport home for him that should be great too (its at the same time as my college course so I will have the car)

That reminds me I taught the kids to sign a song for Christmas and they performed it for Christmas assembly at school and here is a little video if Daisy practicing before the event and here’s a picture of us after we did it with our Head Teachers award stickers

daisykieran-and-mummy

 

I am so proud of my children – Christ they aren’t perfect but neither am I and who wans robots – they are kind and caring and are fantastic to be around and regardless of my tubes scars and all that goes with it they love me and support me in their own way.

one last thing I wanted to share was this really cool mummy cheat – you know what itrs like naming and labelling kids school uniform its a bloody nightmare right? WRONG !!!! I have found a company who not only deliver super super quick but they also have they best products

these name tags are amazing you can attach them to everything from shoes to swim towels and school bags even inside uniform and they wash and wash and wash, then there’s the name stickers and again theses wash and wash and wash – D actually outgrew something before the sticker faded !! They also have a ink stamp so you can just stamp your child’s name on their uniform – no sewing or ironing on labels (they never stayed on anyways. I think these are so so good and as a mum who has to think about what energy I have and how to use it on bad days using a stamp rather than having to fiddle and sew etc. is perfect – its literally the perfect product (no I haven’t been paid to say this !) oh and I even use the stamp on husbands uniform as its just a surname !

Here is a link to the website and Facebook

https://www.facebook.com/nametags4u/ and https://www.nametags4u.co.uk/

 

Anyways its nearly midnight so I will schedule thus to post in the morning and I will update about my MaxFax appointment tomorrow xx

 

lots of love and thank you to those who follow

 

 

 

 

Not the best start to the year,onward and upwards -I say

28 Saturday Jan 2017

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Well 2017 thus far has been a bit of a bugger ! and hasn’t gone quite to plan

I think I got up to about the 11th in my last post – well I ended up being blue lighted back to hospital. I had attended the Medical centre near me, who, incidentally are simply fabulous, even the receptionist is such a lovely lady H her name is and she just gorgeous and lovely  (apologies if that upsets but we have had some right doozies of doctors receptionists in the past),   I was booked in as a emergency patient and saw the big boss doc (the one who’s car parking space is next to the very narrow disabled space, its so nerve wracking every time I get in and out of the car, I’m worried that I might accidently bash his very expensive Jag when getting out- but so far so good). I went into see the doc who had a look through my records so had a good idea of why I was there, I had a v high temp again and my belly was HUGE, I’m told I passed out in his room as well, but I don’t recall this, so that was that back to hospital.

Once I got to the hospital it was clear I needed IV antibiotics AGAIN and TPN and I would also need a PIC line – its like a cannula but its 40cm long as it goes into the top of the arm and follows they vain all the way to a big artery at the top of the heart .

Here is some information from the PINNT website, they offer great support and information for those with artificial feeding issues etc.

What is Parenteral Nutrition?
Parenteral Nutrition (PN) is a means of supplying your body with nutrients and hydration which bypasses the digestive system. This is achieved through the insertion of a catheter directly into the bloodstream, through which a feed that is specific to your needs is administered. This is commonly referred to as Total Parenteral Nutrition (TPN) or HPN.
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What do the letters TPN mean?
TPN is a common abbreviation for TOTAL PARENTERAL NUTRITION. This literally means to eat (-enteral) through the vein (par-). However the terms PN (Parenteral Nutrition), HPN (Home Parenteral Nutrition) and TPN are often used interchangeably.
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How will the nutrition enter my veins?
A very fine soft tube known as a ‘catheter’ is inserted under the skin of your chest wall into a large vein that leads to your heart. A local anaesthetic is given beforehand to minimise any discomfort. A mild sedative may also be given while your catheter is being inserted. The procedure is normally done under Xray guidance. Once the correct position of the tip of the catheter is confirmed it can be connected to a container of PN fluid using a giving set.
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Will PN contain everything I need?
Your doctor and the nutrition team will have calculated the amount of nutrients you require in your PN to keep your body well nourished. This is done by making measurements of your weight, height and by blood tests and urine collections. Changes may be made to your feed to meet your on-going needs. Due to PN being prescribed on an individual basis, some people may make additions to their PN, if this is necessary you will be taught how and when to do this.
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When will I be fed?
Most people on PN feed whilst they are asleep however it is well documented that the infusion time often extends beyond time spent asleep. You will determine how best to fit in the time you require in order to complete your infusion time with your lifestyle. During the night sleep patterns may be disturbed due to necessary visits to the toilet. Many people find they adjust to this over time but people reported sometimes feeling tired depending on the number of times they need to get up. Feeding as much overnight allows freedom during the day, evening or morning. Each person’s infusion time will be agreed in line with your personal needs. New patients may be given a set time with this being reduced over time.
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Will I be confined to bed or at home?
HPN should not be restricted to lying in bed or staying at home unless that is your choice or is necessary for your individual needs. Portable feeding pumps have made it easier to be mobile whilst receiving your feed. Not all patients want to use a portable pump but improved mobility can be achieved with smaller drip stands for use around the home.
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How long will I need to be on PN?
Some patients will require PN for only a short time, such as to permit the digestive system to rest following surgery or illness or for a variety of reasons. For others they will require PN for the rest of their lives. If a specific condition improves then PN can be reduced or in some cases patients may be switched to enteral feeding depending on their specific medical needs.
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Will I be able to eat and drink?
This will vary according to your condition. Your doctor may suggest that you eat and drink as well as receiving HPN. In fact you may wish to continue eating and drinking on a social basis, which even if your digestive system is unable to absorb the nutrition may help you to feel included in social activities. Your doctor will advise you whether you are able to do this. This is one aspect that may change from time to time depending on your personal needs. If you are constantly thirsty you should contact your doctor or nurse and oral fluids will not replenish the thirst and may actually be detrimental to you. There are some oral mixtures for patients who want and need to drink which contain sugars and salts, these may be suggested on an individual basis.
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How will PN affect me on a day to day basis?
This will depend on the symptoms of your underlying illness. However many patients say that they feel stronger than they have for some time due to being well nourished and hydrated and therefore more able to cope with life.
Thankfully I was only on this for a short time and I got from it the energy I needed and the hydration I needed to allow my stomach to heal or whatever it needed and we were ready to try and use my RIG PEG again. thankfully it was successful this time (30mls per hour at 1kal per ml )- I am still getting pain – it feels like my actual stomach is bruised and it keeps filling with air – at times I can literally aspirate 100-200 +ml’s of air which is a bit odd.
Whilst in I met 2 really nice nutritionists one was called B and the other was called L both of which you just know they know their stuff and more importantly they clearly give a fuck about their patients and are not mechanical like the doctors can be – anyways L mentioned that perhaps I should be looking at my EDS (ehlers Danlos syndrome) as a reason for these feeding issues and it is a condition which can and does effect every single part of the body. so that’s something I will be looking into at some point.
Also whilst I was in I made contact with my new specialist Head and neck cancer Macmillan nurse NW and she was also great and gets it  for example she noticed before I even said anything that I was struggling to face her straight on as my neck was playing silly buggers! she also made me an urgent appointment to see Mr Fasanmade as I haven’t had an appointment since I moved here and I have a few new things cropped up regarding the cancer/cancer treatment side of things.
I mentioned the neck issues well at times these are pretty severe, they range of a tired ache as if my head is waaay to heavy for my neck, to muscle aches that male my right fingers (think its the pinkie and ring finger) tingle, although I still have movement and strength then at its worst it goes into full spasm and its not pretty my head tilts to the left my mouth is slightly open and my tongue (remembering the right side is just a graft and non functional) gets pulled to the base of the mouth and I’m almost paralysed by this I’m unable to do anything ot talk (well I try but its not understandable) until it passes, which can take up to 20 minutes.
I also have a palpable lump in my neck, we noticed it just before Christmas and have tried not to dwell? fret? panic? about this as we all know it could be nothing but we also know the alternative.
I will update about my appointment later
still smiling as ever

Update 2017 – still battling on

17 Tuesday Jan 2017

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HAPPY NEW YEAR EVERYONE

Well here we are almost at the 4 year mark and we all thought it would be way behind us and we would have moved on with life but unfortunately not!

 

Here’s what going on – we are now living near Aylesbury Buckinghamshire (sounds posh doesn’t it ). The kids are doing great Dangerous D is 5 and as adventurous as ever and loving life and my boy is 11 now and is all of a sudden turning into a sporty thing ! who knew? he’s on the football team the netball team (they have a mixed team dues to numbers ) and he’s wanting to do rugby on Sunday mornings ! bye bye lie in ! haa haa only kidding, we have kids there’s no such thing as a lie in. Hubby AKA “G” is doing really well and loving his new role and he has a fantastic boss who had been so so accommodating.

now me !!! drama all the bloody way ! since September I have had 3 peg tubes that failed (the tube split or the balloon burst or the valve was faulty and it fell out), so most recently Jan the 3rd the peg fell out I followed protocol and went straight to A and E peg in hand and explained – unfortunately they were very busy and it was a few hours till I was seen and in this time the stoma started closing ! we managed to get a mall NG tube in it to keep it open and I was kept over night on a drip as I obviously couldn’t use my peg etc – then it all started to go tits up ! the next day I went to x-ray to have a RIG, I did the usual and said – it takes a lot to knock me out and I have EDS and sedatives and local anaesthetics have limited effectiveness yes-yes they said !  so I woke up halfway through and in my have apparently I was “combative” no shit it bloody hurt !!

righow-to-rig

 

 

when I woke up I was in a lot of pain and not really from the peg ! it was in my shoulder and the only way I could describe it was icebergs erupting through my collarbone it was excruciating the only relief was laying totally flat – which is terrible for my back and thanks to radiotherapy I cannot lift my head if I lay flat it really weird actually its like someone’s holding my forehead down I just cant do it lol, I digress. so I was discharged with new RIG PEG on the 4th and the next day was my birthday 34 years old and I’ve only recently decided what I want to do with my life ! more of that later !

in the morning of the 5th I could barely move and was in lots of pain and my tummy was really big but I painted on smiles whilst I received my gifts and opened them I have some gorgeous smellies including bayliss and harding  and ghost and from the children I got this.

birthdaygiftfrom-kids

anyone who knows me will know how happy I was with seeds an sets – I can’t wait to get planting ! I love seeing the fruits of my labour – literally ! we are trying to make raised bed for as little money as possible and using scrap etc (do not thing steptoe yard) it will look beautiful!

so on the 5th I ask Gary to take my discharge notes to the medical centre and I had written a note on there as there was very little information on the discharge summary (it even said I could walk unaided and had no risk of falls lol) anywho my doc, Doc P called to see how I was and by this time 2.30 ish I was in more and more pain. The doc asked if I felt like I had a temperature and I shrugged it off saying no, but he insisted I take my temp 39.9 OOOOPS – he said get to the hospital NOW as I could be going into sepsis — I was in too much pain to get into the car so we had to an ambulance and my numbers weren’t great and they had the usual issues with canualtion and also my sats were low and my bp was in the floor 60 over something ! they gave me gas and air for the pain – GOD I LOVE THAT STUFF and off we went to A and E where I spent a few hors while I received emergency treatment for sepsis I has 2 different antibiotics  and paracetamol for the pain and lovely morphine oh and a drain bag on my (so all the acid etc. was coming out rather that leaking into my abdomen). once I was stable I was put in the walk way as there was no cubicle available so essentially I was in a corridor on a trolley ! nightmare I was hooked up to drips and all over the place, scared and alone. I had my phone in my bra strap near my collarbone and I was in and out of sleep as it was the early hours – I was occasionally woken by people adding drips and or taking me temp and blood pressure – then all of a sudden we were moving we were off to a new ward when they initially I thought I was again going to be in the corridor but there was a bed space available, that when I realised MY PHONE WAS GONE – I hadn’t physically moved so I can only surmise that someone took it! talk about panic and i was heartbroken ! the nurse who wheeled me up ran down to A and E and even went through the laundry bag and there was no luck it was gone! I couldn’t believe it! on top of everything!

 

For the next 11 days I was visited daily by a surgeon who would decide if was suitable for surgery or if they could continue with antibiotics – thankfully I avoided surgery by the skin of my teeth and the medication – tazacin ? and doxycycline? I think they were called seemed to do their job. for those 10 of those 11 days I had nothing in way of nutrition and only had saline /potassium and magnesium infusions!   they were desperate to put me onto TPN (vein feeding) like I had last year but I refused point-blank as I wanted to get home, I didn’t mince my words either ! once we were confident my bowel had healed/ there was no leak we started using the peg, initially I just vomited it up but at a love speed 20mls per hour I tolerated the feed ! but that was only  200 calories in 10 hours so they said I could go home if I made it to 30mls per hour without vomiting, I managed with the help of cyclzine. If I’m honest I’m still pretty dry and not weeing much so I am trying really hard to drink more but its hard you know  after 11 days of starvation your stomach shrinks.

 

anyhow I do now have a working peg it a bit infected and gunky atm so the medical centre are dressing it regularly for me and doing a great job. you know I cannot complain about the medical centre they all go the extra mile and have looked after me so so well in the past few months (I think the fact I bake them cakes helps.)

 

Tomorrow I will give you an update on the cancer care side of things or lack of care – in short, I went from 6 weekly check ups to a 7 monthly check-ups. and i threw my toys out of my pram.

 

 

 

 

 

 

 

Thursday. ..to Friday

13 Thursday Mar 2014

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So G came in early today to bring in some clothes and feed, oh and to see me. Unfortunately I was green around gills having had a ‘orrible night. The ward was really busy this morning so I hadn’t had my anti sickness tablets. So poor G ended up passing me bowls. But saying that they’ve changed my antibiotics slightly to help prevent the sickness and ‘other’ side effects.

G was here when the doctors came… they arrive in a little group…..perhaps its a gaggle of doctors or posse perhaps. Theres big
boss doctors who’s name I will never recall, there’s then tall doc with checked shirts and lady doc, she seems to be the one doing all the writing etc. My theory is her writing is the only one that’s readable lol.

Anyways the docs said as I’m struggling to keep my antibiotics down and still have an upset tum I need to stay put till Monday.  Although right this min I am feeling not too bad, but,  I’m due my antibiotics and that’s what sets off the sickness.  oh and I am IV fluids and medicine free now but look at this.

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I’m also being seen by the dentist bloke, a tall slim doc with black rim “nerd” style glasses (only meant as description rather than observation on personality). I’ve been seeing them mainly as they think my arm tongue is very cool but also because my mouth started filling with sores again. So tall doc and his boss doc (who seems really nice incidentally) come to see me today, they did the usual poking and prodding and wished me well for going home soon. My nurse was in here and said well she has to shes got plans….. I told them I was seeing russle howard in Nottingham so must be well. Then out of nowhere tall/nerd doc says

“Do you find him attractive. “

meaning Russel Howard, it was so clinical the way he said it I blurted No (thinking, oh god why did he ask) in fairness I don’t think I would kick Russel Howard out of bed for farting but that’s for another day.

So off go the doctors and I’m left alone, again looking at this. Dank room with 2 windows with what looks like shower curtains as coverage.

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I wondered if anyone uses Viber? It’s an app for both android and iPhones which uses wi-fi for calls txt and pictures… I’ve only just discovered it, my sister is using it in france so we can keep in touch.

I’ve been having visits from my nutritionist lady, she’s really sweet and teeeny tiny as I guess most nutritionist would be…any ways I’ve been allowed to try som yoghurt and custards etc, so far so good although the “little stars” yoghurt are too sharp and I’m not managing them. I’ve been weighed while I’m here and wowsers in 10st 6……. its mental, I’m the only one who seems happy about this, mum and Dr’s not too happy but lets face it I’m not wasting away lol. From my very heaviest I’m now

8 stone lighter

high 5 to my silver lining.

Well I babbled on enough for now I’m going to try to watch a DVD on my laptop as its soooooo boring although my nurse keeps me smiling and the HCA’s are great too… here’s my nurse xx

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This was at the end of a 12 hour shift and still smiling.

Smiles are contagious and make the world go round, share a smile.

I’m still smiling! !!!

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I hope that by writing this blog I can help others in similar situations take comfort in the fact that they are not alone. Please help me reach more people with my blog by sharing my posts on Twitter and Facebook. If you would like to follow my story, please sign up to the mailing list so that you can be notified as my blog is updated. Should you wish to get in touch please feel free to use the ‘Contact Me’ page to fill in your details and I will respond to you as soon I am able. Thank you, Stephanie x