Hello Folks. Seeing as it’s International Women’s Day I thought I’d use this time of my 2nd hospital visit of the week to write a blog. It’s not been easy summoning the strength recently so I’m sorry I missed Rare Diseases Day.
My latest hospital admission where I’d been told I would probably just need 48 hours of IV antibiotics turned into 8 days. I think they love me so much they just like to keep me once they have their hooks in me. Lol!
The biggest challenge
has been keeping a working cannula going. Every time I needed a new one it took several attempts. On one occasion they sent me to interventional radiology for a cannula to go in under ultra sound guidance. He managed to get it in first time. By the time I got back to the ward it had already blown. (Stopped working) The ward then bleeped the on all doctor. As it was in the middle of the doctors strike, it was a consultant that I knew who showed up. That’s not something that happens very often! To her credit, she too got it in first time. Then when the drip was connected the fluids started leaking all around the dressing and soaked into my lap. They stopped the drip, then blood started dripping and pooling in some paper towels I was holding underneath it. So that one had to come out and the doctor called again. You can see this saga in pictorial form attached to this blog. The same consultant came back and hey presto 3rd time lucky we now had a working cannula. Because this had delayed the antibiotics being given to me I had to have some at 2am. Oh well you don’t come into hospital to sleep. Obs ie blood pressure, O2 sats and temperature are all done at 10pm, 2am, and 6am as well as throughout the day. Bloods get taken around 7am and breakfast turns up around 8am. It’s awful. You need to come home to recover. Lol.
On one of the days I was told I needed to have a CT scan I then got a notification on my app to tell me my scan was booked for 6.30pm. No one turned up so I checked with the nurse and she tried to ring CT but got no reply. I got into bed and was woken just before midnight to tell me the porter was here to take me to CT. I was rather bleary eyed but chucked on my teddy bear hoody and was whisked through the empty but very cold corridors of the hospital. I got back into bed shortly after 1am. Then was woken at 2am as per above. You really do need to be resilient to cope with hospital stays.
I’ve had so many pricks in my life, steady now. As a haematology patient with 24 years of coming to Kings my veins are tiny, fragile and scarred. As an inpatient I needed blood tests every day. This got to the point where it would take 4 separate attempts to get all the blood needed for testing. When you have neutropenic sepsis your blood pressure can be a bit low. Mine often is and this doesn’t help either. I’ve learned all the trick from keeping warm to drinking extra water, to holding my hands under the warm tap. Despite all this it’s hard. The phlebotomist on one occasion was a bit stressed and went too quickly for someone with veins like me. The resulting bruise was horrendous and shows how vitally important it is to take your time with difficult patients. The next cannula was put in by a special haematology team under ultrasound guidance. Two of the team had been nurses on one of the wards I had a long admission on. It was so lovely to see them doing so well. They got it in first time and it lasted till o got out. Well done “team Haem”
Luckily I don’t mind needles. It took 3 attempts today to get blood and these are very skilled nurses who are struggling. When I’m more my old self it’s not so bad. Often there is a week between pricks, so time to heal. Cannulas and daily blood tests wreck my blood vessels for a while. Fingers crossed they get good again soon.
One of the other areas that could do with being brought into the 21st century is pharmacy. On one occasion recently it took me over 2 weeks and a plea on X (Twitter) to get the drugs finally dispensed and delivered. By that time I had run out of some of the medications. I understand that these are hospital only medicines but I’ve been taking them for years. Surely they should just automatically get ordered and sent out. I spoke to a senior pharmacist about it all and she said she old raise an incident report.
Then we get to the debacle on the day I was discharged. It was decided I needed to have my IVIG infusion before I went home. I was told I could go home in the morning and just needed the infusion first. Then the black hole opened up and swallowed all normal protocols. By afternoon I’d heard nothing so I reached out to the person who contacted me after the delayed prescription a few weeks ago. She said to contact the on call pharmacy team. The nurse had been trying to do this unsuccessfully. It eventually came up very late and I got home around midnight. I came home with no medication from the hospital though, as it still hadn’t arrived on the ward and I wasn’t prepared to wait any longer. I said I had enough at home till Monday and as they wanted me back for a check that day that I would collect them then. The nurse told me to collect them from the ward.
On Monday I went for my review in the Haematology Assessment Unit as my last swab had still been positive for rhinovirus. I told the lovely nurse looking after me that when she had taken the blood I would go to Waddington Ward to pick up my medications. She didn’t want me walking all that way so went there herself. She came back with no medication. One of the nurses from the ward was looking into it. The HAU nurse tried to ring pharmacy but it kept ringing out and she was on her own with all the HAU patients. In frustration I emailed the pharmacy contact who I discovered was the Deputy Chief Pharmacist. By then I’d finished in HAU and had to go to out patients pharmacy to collect me meds. Normally I avoid pharmacy like the plague. My team discourage me going because of my extremely low immune system. There are very few places to sit and it’s impossible to be socially distanced. I gave my details and the woman told me I was due one item and that was my GCSF injections. I sighed and said no there are another two items. Nabilone is a controlled drug and antibiotics to carry on treating the neutropenic sepsis. She eventually managed to find that there should be 3 items. She gave me a ticket and told me the wait was around 30 mins.
As I had time to kill and had noticed a homeless person sitting on the pavement by pharmacy, I decided to go and get him a hot drink and something to eat. As I was wandering back to him I received a phone call from the haematology specialist pharmacist. She was most apologetic and said she would set up an incident report so the situation got looked into. I explained they had done that 2 weeks before about another problem with missing medication and I had heard nothing. This time I said to the pharmacist that I’d happily be involved in any staff discussions to give a patient perspective and I hoped we could all learn from the scenario. She said I was free to complain. What I’d really like is people to come willingly to an incident meeting where the discussion and emphasis isn’t about blame but learning so it doesn’t happen again. I find that complaints push people into defensiveness. They have their place but trying to resolve informally should be tried first. Any way I was standing outside unable to walk because of holding my phone and the goodies for the homeless man. I couldn’t then hold my walking stick. Lol. The pharmacist said that the original request had gone into some weird and whacky work steam and she had never seen that before. She said she had intervened and all the meds were now in the inpatient pharmacy. I asked where it was and she explained it would have to be a member of staff who collected it. I could feel this inner groan surfacing. I said did I also have to collect from outpatients too? She said I had it all in the inpatients order so no need to walk back down there. She asked me to go back to HAU and she would speak to the nurse there and get her to collect them. It’s frustrating but that’s what I had to do.
I still had the homeless man’s drink and food. I walked back down the road and by the time I did that the man had gone. Oh my days. Talk about sod’s law.
I then trundled back to HAU. I walk with a stick and have just had an 8 day stint in hospital. I’m more frail than usual so all this walking about wasn’t so good for me. My poor HAU nurse who was covering the place alone had to leave where she was to get the drugs. She told me to meet her outside the HOP area and she’d give me my carrier bag there. I got home after 7pm having been at the hospital since 10.45am. Again another example of how resilient you have to be when dealing with all this hospital stuff.
As today is International Women’s Day I’d like to dedicate this blog to the woman who is my rock and life long partner and our beautiful daughter. I’ve put them all through so much worry and anxiety o er the years. Maggie and Annie are just simply wonderful women and I’m so lucky to have them in my life. I’d also like to shout out all the women in the NHS who work tirelessly in a broken system to keep broken people like me alive. Not all superhero’s wear capes. Some wear scrubs! Thanks for saving my life once again. Xx
