“IT SOUNDS LIKE SOMETHING FROM A HARRY POTTER MOVIE!”

I’M SO SORRY, WHAT DID YOU SAY IT WAS CALLED AGAIN

During the time I was recently in the Royal Infirmary of Edinburgh (RIE), I had built up a good relationship with all the staff on Ward 102. There was some staff that I got on a lot better with than others, but these things happen all the time and in all aspects of life.


In general though, I can say that all of the staff that I saw within the eight weeks were all great. There is always the different staff members that you get on that bit better with. It can be for instance, certain clinical support workers, nursing staff and doctors.


There was about four or five of the junior doctors I would get on with and be able to talk freely with. Mike, was one of those junior doctors. Mike was fascinated with what I have been going through with my health over the last 13 year, as were several others.


Due to the type of infection that I had in my chest, I was ‘hooked up’ to have anti biotics delivered by Intravenous (IV) Infusion. There was several days that I would be ‘hooked up’ for twelve hours. Then it was down to seven hours then finally it was roughly 4 hours. These treatments were all spread out throughout the day.


During these IV sessions I would either listen to some music via my iTunes account, or watch TV series on my iPad via Amazon Prime, Netflix, Disney Plus, Apple TV or Sky. This really did help fight the boredom during these treatments and also help take my mind off thinking about it.


I would call Kirsty and Nathan every day and if I got a decent reception I would call via Facetime. During these calls Nathan would see the machine that delivered the IV treatments. I would say to Nathan that if I had to go to the toilet then I would have to take the machine etc with me. The nurses etc would say to me that I should name it due to how long I was on the thing. So I asked Nathan to come up with a name for it, he decided to name it after a video game character called Marx.

“Well there’s another 4 hours of my life I won’t get back with this lot being pumped into me!” 😉
My homemade Get Well Soon Card from Nathan. Kirsty helped him a ‘wee bit’.


This was my third time on Ward 102 at the RIE and a lot of staff had remembered me from those occasions. The consultant I was under this time was Mr Zamvar, in the past it was Mr Walker (now retired) and Mr Will.


Mr Zamvar and his registrar Mr Baggi, both explained to me that I was needing to have my bloods regularly checked. This was to see how my body was reacting to the anti biotics that I had to take. There would be some times that the nursing staff would find it hard to find a vein to put the needle in to draw the bloods from me. So it was left to some of the junior doctors to do it. So Mike, Osman and Aspen were the doctors that would carry out the task.


Just before the doctors would look for a vein to put a needle in me, they would always say sorry. I often asked them why are they sorry, after all these guys were getting on with their jobs. Then this often would lead to us having a good blether about whatever was happening in the world , etc.
During the times the doctors would be do their morning rounds, I asked a couple of times what the name of the infection was. The reply was usually met with it being rare and the microbiologists still trying to find out.


It was in my seventh week during the doctors morning rounds when Mike told me “ oh I have some news for you Kevin”. He said, “The infection that you have is called, Staphylococcuss Lugdrenesis and this is really rare”.


My automatic reply to this was, “I’m so sorry, what did you say it was called again?” When I told Kirsty about this when I called her after the doctor’s rounds, she said,“It sounds like something from a Harry Potter movie Kevin”. The next morning when the doctors were doing the rounds I said to them what Kirsty had said about Staphylococcuss Lugdrenesis. Even though the doctors all had masks and PPE on, you could tell they were smiling. Mr Baggi had commented to me, ” it’s really encouraging to see that have kept a good sense of humour and that your upbeat. We really don’t know how you manage especially with everything that is going on with you”.

“YOU HAD US ALL REALLY WORRIED ABOUT YOU KEVIN”.

Before I spent all this time at the RIE, I was a patient at the Victoria Hospital Kirkcaldy (VHK). I was in there for four days and I was diagnosed and treated for pneumonia. I felt really rough when I was first discharged and I wouldn’t have imagined that less than a fortnight later I would be back in the VHK.
Before ending up back at the VHK, I was in such a bad way with pain and Kirsty could see how bad it was, she called our local medical centre.

Due to the COVID-19 pandemic, the medical centre is running a triage system and Kirsty described all my systems to a GP when she called. It wasn’t that much longer after Kirsty had been speaking to the GP when she arrived at the house to examine me. Once she finished examining me she told myself and Kirsty that I will have to go to the VHK.


The GP excused herself and she went to her car to make some phone calls. After making her phone calls, she explained to Kirsty that an ambulance was on its way to take me to the VHK. Then she said to Kirsty to pack an overnight bag for me and also to include all of the prescribed medications that I am on.

The short time I was in the VHK, I had various examinations and scans. It was when the scan results came back, I was told that I would be going to the High Dependency Unit (HDU) then Ward 102 at the RIE, the specialist ward for cardiac and thoracic patients.

A rare smile from me when I was in HDU


I was talking to Kirsty about my time in the VHK and the ambulance transfer from there to the RIE and there is very little that I can remember from that time. In fact there is very little that I can remember from the first two weeks in the RIE.


It came to a point that when the doctors were doing their rounds and when they would explain to me what would happen with treatments etc, I just wasn’t taking it in. So when I was on the phone to Kirsty I explained this to her, Kirsty would then call the ward to speak to one of the nurses that was looking after me.


During the first few weeks in the RIE I was told that I had Sepsis and that I was really ill. Due to how ill I was, I was really confused and there was times that I didn’t know where I was. The times that I was confused, there was a few times that a member of staff would sit at the door of my room due to how ill I was. It was also to ensure that I didn’t hurt myself when I was in this state.


Throughout these first two weeks in the RIE I can remember very little about it, although I have had a series of flash backs. During this time and due to the infection I had to be in a side room and be away from the other patients. I can remember that I had ‘passed out’ in the side room a couple of times one day.


When I felt less confused and when the doctors and nurses told me about these periods of confusion I asked Mr Zamvar about why I was like this, he replied, “Kevin you are seriously ill and the infection is making you feel this way. It is understandable that you have feeling been like this”.
He continued by saying, “You will notice a big difference soon when we start treating you on the IV anti biotics”.


As I have mentioned already, I had no idea how ill I really was and it was when I was on the phone to Kirsty, she explained to me what I was going through and how ill I am. Kirsty said to me that I was really ill and even though I was being treated, I that I will be ill for a considerable amount of time.
There was quite a few of the nursing staff would say to me that there was a few times that I had them worried that I was in such a bad way that it looked as if I wasn’t going to ‘make it’. I said to them that I really couldn’t remember much and I thanked them for being concerned, but more importantly, for nursing me and getting me better.

THANK YOU FOR EVERYTHING

In between the IV sessions and when I would get my next medications, if I was feeling up to it, I would go for a walk. Before doing this, I always asked if it was ok for me to do this and if so, I would be no longer than one hour.

There was times that I went for a walk due to it being a beautiful day outside, or, I wanted to get away from the general noise in the ward or even just for me to clear my mind.

A couple of times I would go to the cafe for a bacon roll and a coffee. Other times I would buy a coffee from the coffee shop in the main hospital reception area and I would drink it outside when it was a nice day. Sometimes I would go for a walk around the hospital grounds and the walkways in the area and sometimes I would go to either Marks and Spencers or WHS Smith’s.

There was several times that I would buy boxes of chocolates or biscuits for the staff on Base A or Base1, whatever it is called on Ward 102. This was always the group of nursing staff that looked after me. This was just my way of saying thank you for looking out for me.

Another time I bought a box of chocolates for one member of staff as she took the time to cut/shave my hair. This was my way to say thank you and that I really do appreciate her doing this. 

I have also sent the staff on the ward a couple of ‘thank you’ cards. I went on to Moonpig or whatever one it was, and I ordered a card and I made sure that it would arrive after I was discharged. The first card I sent was in Week 5 and it was at the end of the first three weeks on IV treatment. Then Mr Zamvar and Mr Baggi told me I would have to stay for another three weeks to fight the infection with more IV treatments.

Then I sent the second card in time for when I was finally being discharged. I know that the staff appreciated the chocolates, cards, etc, however, I want to buy a gift for all the staff on the ward.  So I spoke with the senior staff charge nurse on the ward and asked her what I can buy them something that will last, rather than chocolates and flowers. This is so I can show my appreciation for what all the staff did for me.

Once again, the NHS has not only saved me, but they have helped me to get back on track with my life. While I recover, I can never thank this amazing group of staff and our NHS enough for what they had done and continue to do for me so that I can have a decent lifestyle.

Stay safe  Stay alive  Kev x

Published by One of Fifteen

I am 1 of only 15 people worldwide diagnosed with maligant myopericytoma. Life threatening surgery in October 2015 at the Royal Infirmary Edinburgh saved my life. I am now trying to find the #14others diagnosed with this rare form of cancer. Please help me. https://about.me/kevin.oneil

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