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
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