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Portugal Holiday – the ups and downs


Hi guys I hope everyone’s doing well. I havent the in the blog-post in quite while, but I really wanted to share some things with you.. some super great and some pretty crappy..I’m writing this from Portugal I’m on holiday with my husband and children as well as my parents and my dad’s mum, my nannan, so the kids great nannan.

This holiday is only been possible thanks to my parents generosity, to say we are grateful is the biggest understatement I don’t even know how to put that into words but we are having the best time.

Before we left…

If you have medical needs, like me there is quite a lot to be organised before you go away, for example your medication you need to make sure you have enough of everything and a medical letter to confirm you are prescribed them, especially important if you have stronger medications as some in countrys it may be a banned substance. (I think Turkey has a ban Codeine banned for example).

I’m very lucky that I have a awesome medical team at my doctors surgery, and a wonderful GP who helped me prepare for my holiday.

So we had 7 day holiday booked so I needed 7 days worth of all my meds, but my doctor said it was sensible/ advisable to take an additional 7 days just in case of delays or other problems. (Similar advice can be found on the Pinnt website too.) That in itself could be quite a lot to organize for most, but if you have liquid medications then the physical size and weight of them makes it difficult. G was great and helped me work out how much we needed of each medication for example

Senna I take that twice a day 20ml each time.

So…. 20ml x 7 = 140ml PLUS 140ml = 280ml

We did this for all of my medications and gave the numbers to my doctor who wrote a fantastic letter explaining everything, including dosges etc and very importantly that I would need to keep all of the medications on my person at all times. This is for a few reasons, firstly if I have it, it cannot end up lost luggage, or stolen. Secondly incase I need to take any meds especially if there is a delay, you may have seen the on the news the guy who had Parkinson’s and was delayed without medication LINK here .  

As My two of my medications control drugs one of them is sort of in that category (pregabalin), nothing we cant handle though.

Then we have my nutritional supplies this is for me ensure compact, flexitainers (empty bottles for pump), the tubing known as giving sets) and syringes. Again we did the maths and my GP added this to my letter. This didnt need to be kept with me but would most definitely use up my baggage allowance cause it weighed 17kg. So I spoke to TUI who added additional baggage for me …I will do a video on how to arrange this and special assistance at airports etc.

We arrived in Portugal and wow it is beautiful and the Villa is amazing once we found it..lol a we went the scenic route

Mom and Dad have been great, from making sure there was a downstairs bedroom to making sure beaches are accessible to somebody on crutches, plus finding shade from the sun as it has been an excessive 35° here most days so it’s been bloody hot. To help me cope with this I’ve added electrolytes to my fluids each night (dioralite) when I have my feeding pump running because I’ve been trying to play catch-up. I don’t reply it’s been bloody hard. 

I have pushed myself each day but have desperately tried not to let it impact on the next day – and to be honest I have done pretty well. Food wise I have tried to take part in meal times but have found it pretty hard I’ve ordered children meals and picked at that, so that I looked and felt part of the family activities. I’ve also managed to hide my chokes and coughing fits……. I have learnt over time to suppress the choke\panic reflex and I just throat clear if I can or calmly ask G to help … it something I’m actually pretty proud of – the main reason I’ve don’t it is panicking makes the choke worse but also being a mummy I try and not scare the kiddo’s . 

I have slept til 9 or 10 most days and with having the pool here we haven’t had to go out to entertain the children (they’re no allowed to go in the pool without an adult on poolside)

Thursday we had our big trip planned so Wednesday I had extra fluids and feeds overnight and slept in in prep for the big trip. 

Thursday we went on a boat trip to see the Caves and Dolphins (the dolphins were a bit shy),  getting to the marina was a 15 to 20 min taxi ride then there was a bit of a walk to the marina where we had lunch and drinks. I was pretty glad to have a sit down and drink cause it was massively hot – we weren’t due to depart till 4 and had hoped it would be cooler by then …WRONG it was still at least 36 degrees….  but because our party had my nanny who is in the 80s and children (and of course me) we chose a boat that had some shade. 

This is who we went with Ocean eye they were brilliant and we DID see some dolphins .. actually me and Daisy saw them first which was awesome and then standing on the boat (folding on for dear life ) whist it sped over the ocean was such and exhilarating feeling – the wind through my hair – it was AWESOME. 

We got off the boat and found a taxi I WAS EXHAUSTED…. seriously knackered – my speech was shit and I was nodding off at a seconds notice, we arrived at the restaurant and I did my usual order a children’s item, and wow it went tits up!!!! 

Almost immediately I choked on the food, and spat it out, and had some drink.Despertaly thing to hide it as a member of our party is *grossed out by my peg and all things related ) I then tried again and this time I couldn’t trigger a swallow so I was doing my chin tucks and NOTHING – I had to spit it out. But in my desperation to be normal I forced some food down and BANG I had food stuck in my throat- cue coughing fit – I did keep calm it enough to walk outside and have a further coughing fit  followed by a visit to the toilets to vomit – I had managed a grand sum of nothing. and was left feeling totally crap and embarrassed (yes I know they’re family and probably don’t care – but I DO… ). The NEED  to look and feel normal is still as strong as it was 6 years ago – I don’t think it will ever leave. 

We came home and the pain of the day hit me and it was a 9 out of 10 – so bad that I needed G to help me go to the bathroom and wash up before bed.  Its not often that I need G to help me with EVERYTHING down to my underwear. I then needed putting to bed, and we made a makeshift fixed sleep position with a duvet from the cupboard and various pillows and cushions. 

I had my max meds including the liquid one PLUS we used the lidnocane patch that we purchased over here in Portugal (I will post about these seperatly soon). 

I woke several time cause of pain and took today very slowly – that said I would 100% do it again – I think sometime we need to take the hit … I  know its coming but we don’t let it stop me …. some might say it’s daft to do it but you know my mantra “fuckit”.

any who this is my penultimate night here and I have had several vodka and cokes so its bedtime. 

sending love to all who’ve managed to read this to the end you are amazing and Iove you lots.. keep fighting whether its cancer, a long term illness or another battle  … you are strong. 

feel free to message me anytime 

mrswiggy.sw@gmail.com

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Joining the dots … Ehlers Danlos Syndrome EDS


Those that have followed me blog will know I have a plethora of health issues from having my pelvis split whilst pregnant with my son, needing surgery to put metal plates in it to pull then back into place, to slow healing from surgeries, bladder issues, prolapses, dislocations and a subarachnoid spinal cyst and that’s not half of it…

Well around June I saw a rheumatologist at the Nuffield orthopaedic hospital regarding the reoccurring sacroiliitis which was made worse by the fact I have excessive movement in the back of my pelvis ie Sacroiliac joints.  He was very thorough and we spoke about the almost daily subluxations and the dislocations and he said what I had “known/suspected for years” that it looks like I had EDS Ehlers Danlos syndrome, (ill explain in a bit) and that he would refer to University College Hospital in central London to see the UK specialist but warned me about the huge lists.

I was surprised how quickly I received a letter; the first letter was simply to say that they had received the referral and that I was on the waiting list to see Dr KazKaz.

Now this was a name I recognised, she was the top of the crop, she was the big cheese BUT on the many support pages on Facebook that I am a member of I had read horror stories about her, that she refused to diagnosed this person who said had EDS severely and that she was …. Well a bit of a bitch (on reflection it was only a couple of people but they had posted a fair few times) anyways I was pretty nervous, what if she was horrible, what if she said it was all in my head and that I was nuts – if that happened what was next …… I stressed quite a bit about this if I’m honest.

My appointment

From memory my appointment was late morning, thankfully G took the day off to come with me and I’m not sure I would have got there without him (I cannot fathom the London underground – it might as well be Swahili) anyway we arrived 10 minutes before my appointment and initially saw the nurse and my BP was sky high, given its usually in my boots she told me to take a seat, relax and try to calm down after navigating the tube and she redid it and it had returned to normal.

Doc Kazkaz calls me in, and straight away shakes my hand and greets me like a friend. She reads what she has on her screen and checks all is correct, she then asks me about my pain and I explain I pretty much have pain in all joints apart of elbows ankles wrist and fingers, and that I struggle with muscle spasms often.  She asks about my normal blood pressure, which is low at 100/58, she asks if I get kiddy when I stand up quickly, I tell her I quite often pass out when I do it too quickly, I then tell her we discovered in my recent hospital stay that when I’m laying down my pulse is 80, then sitting is 100 to 120 then standing is 150 up to 180…. It does come down a bit if j stay upright but not all the way, she explains that it’s a condition called POTS (Postural tachycardia syndrome). (More info at bottom)

 We then talk about the dislocations and the subluxations (like a half dislocation). She then says to strip to pants and bra and asks me to initially stand, and bend forward and put my hands on the floor and then backwards (she tells me to stop when I’m doing it backwards as it was too far for the joint, but I could have bent way more). I then have to walk up and down her room several times, she was looking at my balance and the muscles and most importantly the joints. Then I lay on the exam bed, she closes the curtain half way and starts her exam, looking at all my scar and my skin looking for characteristic scaring or paper thin skin (I will have the info below). She tests my ankles, and finds them very hypermobile, my knees slightly over extend ie bend the wrong way, my hips are massively hypermobile as is my back, my wrists are and I can put my thumb to my wrist, my neck is stiff due to the cancer treatment ..she probably did more but I don’t recall. She explains there’s a new criteria for diagnosing EDS and that I would have just about scraped through the beighton test, but the new criteria is much better and looks at more joints and the whole person.

So I get dressed and she shares her findings, she confirms that I have Ehlers Danlos Syndrome..

EDS has lots of different types 13 I believe, some are very serious and can even be fatal. She believes I have hEDS which is the best type to have (although its not great), BUT due to the fact that I have issue with my veins, (they are hard to find, I’m almost impossible to cannulate and if they manage my vein bursts) and I have a slight leak on one of my heart valves (I had a ultrasound hear scan) and I bruise extremely badly often with no apparent cause and I think there was another thing but I forget. Because of these there is a possibly I have one of the other types of EDS so she has referred me to genetic testing, hEDS cannot currently be proven genetically but the other types can. Should I have one of the others I may need the children testing just in case.

She was so very lovely, really kind and explained everything and nothing like what I was expecting at all, I’m so relieved to have my official diagnosis, there is no cure, or treatment really but it means I have a reason for lots of my problems and most importantly it means its not in my head !!!

What is EDS

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family. (https://www.ehlers-danlos.org/what-is-eds/)

W

What is POTs
Postural tachycardia syndrome.

Postural tachycardia syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. It typically causes dizziness, fainting and other symptoms.

Pots is the malfunctioning of the part of the nervous system that controls involuntary bodily functions (e.g. breathing, heart rate) is common with hypermobile EDS. Symptoms include fast heart rate coupled with low blood pressure, digestive and bladder problems, and temperature and sweating dysregulation. You can manage the condition by drinking more fluids, improving your cardiovascular fitness, and if your daily function is severely impaired, taking medication.

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It’s not always about the patient !


This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD.

As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep the house running, the children going and visiting Me AND all my extra washing as well as things I wanted bringing into the hospital.

Now being a military wife some might say well it’s just the same as when the husband or wife go away on tour. That’s just wrong, when a husband or wife goes away for 4 or 6 months we have to juggle the house, children, dogs, and family we do not have the added stress and worry of having a loved one in hospital and the additional stress of visiting , and finding parking, which is damn near impossible as Stoke Mandiville Hospital! He’s had to cope with the children being upset because mummy is sick, the seven-year-old who is waking up in the night because he misses mummy and is scared that something bad is gonna happen . He then has me phoning whingeing saying I’m having a bad day, saying the crazy patient opposite has been literally screaming for ten hours or that the little old lady you really liked had passed away. Venting my frustrations about Doctors or Nurses or that HCA who was making up numbers when taking SATS (yes I reported him).

When you get home I hope everything will go back to normal but it doesn’t, you come home to a seven-year-old who is crying because she wants a cuddle yet she’s sitting on your lap cuddling you. A child who doesn’t trust your home to stay so doesn’t want to be away from you. One who’s regressed so so much your no longer mummy but mumma.

It gets worse!

While is in hospital I was I thought I kept in the loop about D and how she was coping at school which wasn’t well and what was being done about it.

You come home and take over school run because she wants which is fine and I’m quite liking getting back to normal. Your then told by senior member of staff that she is not just been having a bit of a rough time, she’s now the polar opposite of the child you left.

The highlights.. {scarcasm here!}

*she barely smiles [was known as a smiler last year]

*refusing to work to the extent she has been removed from the class! [just wow this has NEVER EVER happened]

*crys everyday over everything and nothing (again new)

*not speaking to adults well [ok well yes she need reminding sometimes but it’s never been an issue.]

And so much more.

I may have been in hospital, but, she has 2 parents. Yes they told G that she was struggling but OMFG REALLY ….. we could have put things in place .. support or I don’t know?! arranged for me to call her every lunch time … oh I don’t know but SOMETHING … now we are in a situation where it appears that her form teacher thinks she’s a “bad kid” [my assumption not something that’s been said – but I do have my reasons ] Now, they do have pastoral care type person Miss A and she’s great but she’s not in the classroom she’s there as a defuser for when this kick off or have a melt down [again an assumption based on what I’ve seen ] don’t get me wrong she lovely and when D has has a melt down she’s taken her off for a walk so daisy can chat away to her heart content and do a bit if a brain dump- ready to return to class.

My my poor girl [ive not forgotten my boy but I think he would appreciate me just saying how he’s suffered too but because he’s well ard he ok… I joke but seriously – Yes he’s suffered, but since being in cadets he seems to be able to handle things much much better – that said young careers are also helping out]… where was I? Yes D she’s massively been suffering and I feel that we have been somewhat been kept in the dark… perhaps from a well meaning standpoint but one I wholeheartedly believe is wrong.

So …what have we done, tried to reassure her as much as we can especially as she doesn’t believe for one second that I’m not going back into hospital. I’ve sought advice from my wonderful GP who I cannot thank enough Dr L ..and I’m going to see her teacher Tuesday.

Dr L said something that’s very true…

Your family are professional copers…no one knows how much you are going through and dealing with as you have a vissard.

So trying to lower the vissard here’s a few little known family facts ..

Ok dropping my guard here!

G wakes up early every day to prepare my medication. Every day so that I can move in the morning, as without my medication I’m stuck in bed.. [there’s about eight meds, some need crushing and putting into water, some are liquids all need to be in syringes and then go into my feeding tube (PEG)].

Another random one not many people know about is..

I cant be a passenger in a car more than 20 minutes without vomiting [violently even after medication, yet I struggle with fatigue so don’t drive too far… what to do? The thoughts are that the radiotherapy damaged my inner ear massively which also accounts for some of my valence issues.

Anyways this is me signing off – I usually say still smiling but today I am truthfully not smiling

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Scan done – just waiting for results !


So yesterday i had my scan, it was at high Wycombe hospital. the night before i was struggling with feeling stressed and found myself frantically cleaning  which id a default i go to when I’m feeling stressed and over whelmed, its a distraction techniques as I’m obviously worried for the result. Its not helped that its coming up to the anniversary of a fellow head and neck patients deaths, now don’t get me wrong i’m not freaking out i’m just finding that i’m thinking of all scenarios good and bad which, must be pretty common in situations like this right??  Anyway i was up till gone 3 so i was knackered but i got there in my new car (more about that soon).

 

So i managed to find the hospital pretty easily, from the outside it looked like a very old concreted office block (the bit i went into anyways ) but, it was actually a really nice looking hospital once you get inside and it was relatively easy to find. i was seen on time which was amazing ! I then had to have a cannula  inserted and as you all know i don’t have any good veins they are all shot to shit, but we managed to get one, we needed one because it wasn’t a “normal” MRI, by that i mean that there’s a certain way that head and neck MRI’s are done here is a picture –

index

as you can see you have a cage around your head and face and it can be very claustrophobic and my god is it loud ! For my scan I had an injection a dye into my veins and then redid some of the scan, I’m not 100% sure why they did this but who am i to argue!

Once finished i was taken to a nurses room for my cannula to be removed and so i could pop my necklaces back on etc and the radiographer that took the cannula was only one of the ladies from my British sign language course!! how cool is that ! she actually the sweetest person and so kind, it was so nice to see a friendly face.

I have mentioned it before haven’t I ?? I’m doing – or should that be redoing my BSL (British sign language )level 1  course at college one evening a week. I’m actually already qualified but that was 20years ago and i can barely remember a thing. This time round we have THE best tutor, M, she is mad as a box of frogs but very very good at what she does and teaches so well. With sign language being such a visual language it can be a bit daunting and can make you feel a bit daft at times ie “make this face with this hand movements” to mean X you have to let go and just go for it, like this. The group are all fantastic seriously nice and such diversity, all with one goal its very special and it has “forced” me out of the house and meeting other people which i have mentioned before is something i struggle with. anyways ive just been invited for a cuppa with a neighbor so i will go now and i will update as soon as i have some news

 

 

Just one last thought – MR F’s next clinic is the 24th of this month and i will be booked into see him then but if its not good news he will want to see me sooner, so no news is good news right?? well that’s there I’m stood on this one.

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Meeting my new head and neck surgeon, nerve wracking doesn’t come close! & I have a lump in my neck


Well as you all know I now live in Aylesbury area and getting to see Mr Moss is a nightmare its 2 plus hours and with my travel sickness, which is now so severe I have to carry sick bags at all times and take 2 different ant sickness meds – which sometimes work but not all the time – quite frankly I have traveling now – still do it when I need to obviously but it sucks !

so this means I haven’t seen Mr moss since the end of September I think it was, and given I was supposed to be seeing him every 6 to 8 weeks I was majorly over due – I was battling to see someone locally and was getting nowhere in the end I called Macmillan and my old macmillan nurse Lesley and I called PALS at kings lynn hospital – I was starting to panic I was having new symptoms and I have found a lump – its been there since early December and hasn’t changed when I was on antibiotics etc so not just a gland up (like you get with a cold) so anyways – im not sure which one of the avenues worked but I got an appointment 24th March !!!!! NO WAY was that okay, to be honest I cant remember who I called, probably the same people again as I was starting to fell completely at sea without a paddle ! long story short – whilst I was a inpatient I was visited by my new Head and neck specialist nurse called NW and from that I was called by Mr F’s secretary and my appo9ntment was on Friday just gone 27/01/2017.

So I had to get a taxi there as G was in a meeting and it was too soon for me to be driving especially as I was in a tizwas and stressed. it was at Amersham hospital – a lovely little place but very hard to navigate. I got there and promptly asked for a sick bowl as the nerves hit !!!

 

I went in and he was not what I was expecting – not that I know what I was expecting – I think I was dreading having someone who wasn’t MR moss I was expecting Mr Moss’ opposite which simply didn’t happen. I was greeted by NW and Mr F was engaging and interested in what I was saying and listened – he then asked if I had any concerns – I mentioned that the right side of my neck was majorly misbehaving and at times it would go into full spasm which left me look like my ear and shoulder were glues together and my face looked as if I had bells palsy (due to the arm tongue being attached to muscles in neck ) and I said this only happens if I’m sat looking to my left (sort of how I was sat at the time ….(watch this space). I then went on to mention the lump in my neck – saying that G could feel it too so I wasn’t imagining it (coving my crazy ass), next came the examination first external – he firstly looked then felt my neck face and shoulder area it was ok not too painful only a few winces, then he put on his head lamp thingy with magnifying lenses (he did look a bit daft but needs must), and he examined my mouth inside and other than 2 area of dentistry needed he was happy.

BUT the lump he could feel it too – he agreed it was there and had asked for a urgent i.e. within 2 weeks MRI and ultrasound of head and neck to see what’s going on, he did try and reassure me that whist the people booking it may sound pushy to get it done and said  it was just to be sure and not to panic etc., that was when I decided to demonstrate the neck spasm for him !! my god I looked sexy I was practically dribbling – but you know what he was amazing he helped it pass quickly and had given me some medication to help stop them happening – he did mention botox but also said something regarding it may not be possible but by then I was a bit distracted by thoughts of the lump. MR F was great and I instantly felt as ease in his presence, he will never replace Mr Moss but he is great so far!

 

So here we are playing the waiting game! Is the lump something sinister or just a lump ??

 

 

Jan 2017

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


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 hate being in hospital, I can see the effect it is 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 she 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 its 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

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


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