Back in hospital again

Dear friends and family,

I’m sad to say that I’m back in hospital on Davidson Ward again. It’s becoming my home from home. This time I’m in Room 8 so a different picture to keep me company.

I had a really bad turn yesterday towards the end of my ECP treatment. I was shivering and shaking really violently and uncontrollably. After this my temp soared. My muscles were in tight spasm like pain for about 45 mins. It’s called a rigor. It’s horrible. I don’t want that too often. As a result the lovely nurses, who are not used to seeing me unwell at Guys, took some cultures from my Hickman Line as a precaution as well as a sample from a vein. They also took some viral swabs and said it was likely to be flu as there was so much about. They gave me IV paracetamol and fluids and made my long suffering partner come and get me. I said I was happy to go home and stay in bed with fluids and paracetamol.

That all changed with a phone call this afternoon. It seems my line is growing bugs. As it feeds into the top of my heart this is dangerous so I’ve had to come in for IV antibiotics. I may need the line removing depending on what the bug is. As this is the Ferrari of hickmans and is the only one of the 5 I’ve had that works well I’d like to keep it if I could.

In order to give you a window into my world and the stresses and strains that have to be dealt with unexpectedly I will chronicle events for you.

12pm. Nurse rings from ECP to check I’m ok.
2pm. Dermatology doctor rings from Guys to say microbiology have been in touch and initial results are showing a line infection but they are not sure what the bug is yet. She said she would phone my haematology team at Kings and get back to me.

2.45. Guys doctor rings back and says she has spoken to the on call haematology reg and they would like me to go to A&E and I may need the line taken out.

At this point I was still in bed so much started to get myself washed and dressed.

3.30. The consultant haematologist rang me and said she wanted me to get to the hospital ASAP and I may need the line removed but I definitely needed to come in for IV antibiotics.

4.30 arrived at A&E

4.45 was triaged by a nice nurse who was experienced enough to know some things and confident enough to admit to the things she didn’t know. She is a credit to her profession. She organised a side room with a door for me to protect my immunity.

5.15 Got placed in side room.

5.30 Nurse came in and asked questions and told me I needed some cultures taking and a cannula inserted. She placed the culture bottles and the cardboard tray containing the equipment for the cannula on the bin and said she or someone would be back soon as she wasn’t actually looking after me.

6.00 Doctor from A&E comes in and asks all the same questions and says he will pass it on to haematology.

6.15 Nurse 2 comes in and asks all the same questions and takes the same observations. Neither nurse 1 or nurse 2 left the paper thermometer in my mouth long enough so it didn’t register my temp accurately. I knew it would be done properly on the ward so I let it drop. Nurse 2 was a young man who was slightly arrogant. He said he would be able to cannulate me and he was good with small awkward veins. To give him his due he did get a cannula in. It won’t last long time know, but at least he did it. He also got blood all over my top which wasn’t so great but these things happen. An apology would have been nice though. Then he dropped the dressing he was going to use to hold the cannula in place on the floor. He picked it up and went to use it. Merry didn’t notice but my partner pulled him about it. He said “do you want me to get another one as it only dropped on the back” Oh dear. He has a bit to learn. At our request he did get a fresh dressing.

7.30 Nurse number 3 comes in. She didn’t ask all the same questions thank goodness she said the haematologist had been informed at 5pm. She said she would chase it up. She was empathetic and friendly and also said that the stuff on the bin shouldn’t be used and she would get fresh culture bottles.

8.00 Nurse number 4 comes in. Fortunately he didn’t ask all the same questions again. He had a really nice manner. He took the cultures from my line, did an ECG and recorded my ob’s accurately. He also was the only person who came in the room who noticed that my partner and daughter had no chairs to sit on. Tom was a credit to his profession and it was a pleasure to meet him.

8.15 A&E doctor came back and apologised it was all taking so long. He said he would chase up haematology again.

8.30 Haematology reg turns up and apologises for the delay. He shook hands with my family and me and introduced himself. He then explained the delay was due to waiting to get a patient home so I could have the room. He also said he was all set to whip my line out tonight but looking at me decided it could be left. They will see what the bugs are and if it’s not too serious it may be possible that the line can stay. Of course that is my preferred option because this line works so well. Also they will have to put one back and it’s a horrible procedure to go through. They have written me up for some heavy duty IV antibiotics and will take each day as it comes.

9.00 arrive on Davidson and get unpacked. It’s gonna be a long night.

I remembered my new Harry Potter blanket. Thank you Shirley Grout and Steve Douglas. I love it. Sadly I forgot my pillow. I’ll get that from home tomorrow. I did remember my chill pillows though Dawn Marsh. Gail Thompson Room 8 is the last room on the left in Davidson. It’s weird because everything is the other way round. Lol.

So what next. Well I’m waiting for the ward to start my antibiotics and put some fluids up. I’ve given the poor junior doctor my medication list. She was impressed that I knew all the dosages by heart. She said she would need to talk to someone about some of it because it was a bit beyond her. Lol. Poor thing. Again she was lovely and knows her limits.

As you can see the pace in a frustratingly slow and additional stresses are created by some of those who are meant to be helping. I still maintain there are far more good ones though and great dedicated people that really make a difference. The fact that I can access all this high end care so late on a Saturday night and it all be free is an incredible testament to Bevin and those that implemented the NHS all those years ago.

Let’s hope this is a short stay and that the stresses continue to be fewer than the good practice.

Thanks for your prayers and positive vibes. Hope to see you all soon. Xx