No counselling you're not dying

I have had five surgeries, two of which went wrong and three of which were to correct the original two. I am now unable to speak and have secretions running out of the front of my neck all over my clothes.
I am a little down and was pleased yesterday when finally it was mentioned that counselling was available.
Today I have been told that I can't be refered for counselling based upon my surgeries because I don't have cancer.
I have to go to my (overworked) GP and ask her to refer me.
I should be able to get an appointment with her in about two weeks and yet again I will be post op, with an open wound, sitting amongst people with germs. My consultant says the most important thing at the moment is for me not to get a chest infection so sitting in a GPs waiting room AGAIN is exactly what I need.
Yet again help with mental health issues is made as difficult as possible to get. I am not depressed but some help would be appreciated. Guess I just have to hope I get better on my own.

Is my mental health part of the recovery process?

Having had five operations in the last five months and now being back to where I was four months ago I have been feeling a little low.
 I would not say I am depressed but I am not my usually jolly self and tears flow a lot more easily than they ever have before.
I have now mentioned to a number of different health care professionals that I come into contact with that I am feeling sad, and this has been greated by such wisdom as:
'Yes a lot of patients feel low after surgery.'
'Well we knew it wasn't going to be easy.'
'There is a long way to go yet.'
Before the surgery there were many offers of meeting people who had been through something similar and talking things through before I made the decision as to which surgery to have. But now the surgery is complete I just need to get on with my rehab with the help of speech and language therapists.
Surely if my state of mind was positive the potential for my physical rehab would be higher.
Where is the support for my state of mind?
Is the link between mental and physical well being obvious?
Or do I have to hit rock bottom before this help is offered?

What you need to do is rest - In a hospital?

Many people will tell you that when you are ill what you need to do is rest, and above all get plenty of sleep.
However in a hospital this can be virtually impossible.
First you have a drug round at about 10pm, then depending on how much you need monitoring you will need your blood pressure etc. taking at about 2am and if like me you are a trachi patient you trachi will need checking and cleaning during the night. Depending on your feed regime you may need a new bag of feed at around about 4am and then there is the drug round again at 6am. Consultant do ward rounds between 8 and 9 and then it is time to get up.
As you can see sleep is broken at best and this assumes you can get back to sleep quickly.
Rotary Ward at William Harvey Hospital were very good at trying not to wake you up. I have woken a couple of time to find my feed bag had been changed without me having woken and the lights are turned out and for routine checks the nurses come round with little torches to ensure you are disturbed as little as possible.
Guy's hospital did things a little differently. Even thought I was in a side room the door was never fully closed so I always had the light from the corridor shining into my room. But what they do is they give you a welcome pack when you are first admitted and the two most important things in that welcome pack are a pair of ear plugs and a sleep mask. These are invaluable at ensuring a good nights sleep.
Considering how cash conscience Guy's were in everything else they did (more on this in later posts) this one little thing did make all the difference.
Sorry Rotary but this round goes to Guy's 1-1 for now.

Let's hear it for the boys

Having watched the Lisa Lynch biopic on BBC this week I was impressed by her strength and the amazing way she handled her illness. I am sure no one who watched that would have felt any different.
But how many people spared a thought for her husband. Here is a young man who early on in his marriage has to cope with this horrible illness and potentially the loss of his wife. With few exceptions he was strong and held it together for her. He was there whenever she needed him and what outlet did he have? What support did he have?
Having suffered from a long term illness myself I know I could not have coped without the support of my husband. He has been there through all the hospital appointments, the surgeries and the many time I have had to cope getting back into home life.
He puts up with my rants and and my rages, my highs and my lows. He calms me down and cheers me up.
Without him I would not have made it this far never mind the thought of making it through the next six months.
So let's us give a cheer for our support network and make sure on the good days they know how much you appreciate them. For on the bad days they are all you've got.

Confusion in the NHS - Well for this patient anyway

Recently I spent a lot of time in my local NHS hospital - Wiiliam Harvey in Ashford. Due to issues and complications last month I had to spend two weeks in Guy's Hospital in London. I could not believe the difference in the two hospitals and I'm guessing you'll be surprised by which I thought to be the better.
The thing that has struck me the most was the differences between the two hospitals when it comes to discharge.
With William Harvey my consultant wrote me a sick note signing me off work for an allotted amount of time. He said if I needed more I could go to my GP and get a continuation but that in his opinion I should be feeling well enough for work by the end of the sick note.
Upon discharge from Guy's hospital I asked for a doctors note. 'Oh no we don't do those here,' said the nurse. 'You need to go to your GP.'
I have been discharged from hospital on a bank holiday weekend. On Tuesday morning I need to get myself to the GPs surgery and sit amongst people with colds and other transmitable diseases just to get a sick note.
When I eventually get into see my GP I need to explain the surgery and ask for a sick note. I am not sure how she is supposed to know how long I need so I am guessing she will give me a note for a fortnight and then I will have to repeat the process in 14 days time, assuming I can get an appointment. Oh and I have to do all this having had part of my larynx removed and not being able to speak.
This is taking up my GP's time and exposing me to unnecessary risk of infection all within days of being discharged from hospital. I would love to know how at anyone at Guy's hospital can think this is a good use of NHS resources when a doctor could have written this note out for me during his rounds on the day of discharge.

One - nil to William Harvey I think, don't you?

Keep checking out the blog for further posts on how William Harvey know a thing or two about patient care.

You wait months for a PEG – and then two come along at once

Those of you who have been following the story of my PEG will have seen my previous two posts:

NG v PEG feeding tubes & My PEG two weeks in.

As described previously it looked like my first PEG had embedded itself into the lining of my stomach after only fourteen days. The general protocol with a PEG is that after fourteen days the PEG should be pushed a short way back into the stomach and rotated. This shouldn’t be done any sooner as the tract needs to form between the stomach and the outside world. Any sooner and there can be complications with the internal layers not knitting together properly and there is the chance of infection.

Last week I had an endoscopy to check that the bumper really was embedded. This has to be the worst thing I have experienced since becoming ill. As I lose the ability to breath if I am sedated and laid flat the endoscopy had to be done whilst I was wide awake with just some numbing spray for the back of my throat. I felt as though I was going to choke as what has to be the largest camera in the world was pushed down my throat. At one point I thought I would throw up, and wearing a month guard and with a camera in my mouth I was not sure where the vomit would go, except back into me.

I cannot praise the nurses highly enough. The one with me kept talking to me, assuring me everything was okay and keeping me as calm as she could while the camera went down. Once the camera was down it was not as bad. Until the camera is brought out and then you have to go through the whole gagging process again.

So we now had confirmation that the PEG was embedding but that for the time being it was still working. I was told to continue using it until I could return for a new PEG to be fitted under general anaesthetic five days later. If at any point I was in pain through using the embedded tube I should go to A&E. This did not fill me with joy as so far this had always meant a four hour wait to then meet a doctor who knew nothing of PEGs and who couldn’t help me.

So I then arrived at the hospital five days later to have the new PEG fitted. The plan for the old PEG? Well they would try and pull it out but if that didn’t work then they weren’t sure what to do.

I had been nil by mouth since 10pm the night before. With a Trachi getting dehydrated can cause coughing and a lot of discomfort. There were three people waiting at 7.30am to see the same doctor and I was the last to be called. I finally went into surgery at 12.30pm. I know there is a list and therefore we can’t jump the queue but at the very least they could have let me have some water or some I.V. fluids rather than leaving me fourteen hours without anything.

Finally I was taken into the theatre and put to sleep. Imagine my surprise to discover upon waking that I now have two PEGs.

It took five hours for the registrar to arrive and to explain that they had been unable to remove the old PEG put hadn’t cut it off and left it in. She couldn’t explain why as the doctor who completed the surgery had already left the hospital to go on holiday.

The next day I was in a considerable amount of pain. I was sent for an x-ray and then doped up on Tramadol. The nurses were going to come and clean the wound and show me how to care for it, but unfortunately they were too busy, so left me with two wounds encrusted in dried blood for another day.

The day after that I was sent for a CT scan and when that didn’t explain the pain they decided to send me home with some pain killers. I have still not spoken to the doctor and there has still been no decision made as to the way forward to stop the second PEG from embedding in my stomach wall as the first did.

The treatment so far has very much been ‘well the first PEG shouldn’t have embedded, so we’ll just hope the second doesn’t.’ I have a doctor who was more intent on leaving for his holiday and who has left no instruction as to then next step with his junior doctors or his registrar. He is going to ring me tomorrow but I won’t be holding my breath on that phone call!

So keep tuned for the next instalment of how not to fit a PEG and remember if you have the choice stick with an NG tube.

Me and My PEG – two weeks in

Two weeks ago I wrote a blog about the difference between NG and PEG feeding tubes from my point of view. If you missed it the link is here.

After that blog I was asked to update people as to how I was getting on once I was used to the PEG.

I decided to wait until it had been in two weeks as after two weeks the PEG has to be advanced and rotated. What this basically means is that the bumper on the outside of your skin is released and the tube is pushed back into your stomach and rotated through 360 degrees. This is to ensure that the internal bumper is not attached to your stomach lining.

I am not sure why you have to wait two weeks but that is what is recommended.

So as of yesterday I was getting ready to write this blog and talk about how I was no longer in pain with the PEG. How it is easier to shower. How I look more normal, no longer having a feeding tube sticking out of my nose and how I can have water whenever I like as I no longer have to check the location of the tube using a pH test.

That was what I was going to write until the nurse turned up to advance and rotate the PEG. The problem you see is that after exactly two weeks the PEG won’t advance. Yes that is correct, having done everything I was supposed to do the PEG has managed to get stuck in my stomach lining any way. This could never have happened with an NG tube.

Because of this I got to spend four hours in A&E waiting for an endoscopy nurse to try. The thing is no one in A&E knows what to do. You can’t blame them. My tube not rotating is neither an accident nor an emergency but the ridiculousness of the NHS dictates that I have to go there first to get treated.

When I finally got seen the nurses from Endoscopy where very caring and concerned but they still could not get the PEG to rotate. The doctor who fitted the tube also turned up and could not get it to advance. And that is where we left it.

Today I am going for an endoscopy so they can try and pull the tube from the inside of my stomach. If this doesn’t work they will just fit another one and leave the one that is embedded in my stomach lining there for the rest of my life. Oh and by the way there is no guarantee that the next PEG won’t do exactly the same thing.

So yet again can someone explain to me why PEG’s are so great and NG tubes are so dangerous?