As you may or may not know, the idea of the Pre-Assessment appointment is to just check that you are physically fit enough to have a general anaesthetic basically and the surgery itself. It’s a fairly straight forward appointment, even during COVID-19, of a questionnaire about your general health, weight, height, blood pressure and some blood tests. Easy. The appointment itself was very easy. However, what happened next, not so much.
The Pre-Assessment took place on Wednesday 12 August as planned at Queen Mary Hospital in Sidcup. I was in and out in about an hour so all good. I was told that the Team would be in touch to arrange a date for the surgery. I was pre-warned that I would have to isolate for two weeks prior to the surgery to minimise the chances of catching COVID-19 as much as possible and that 72 hours before the surgery, I would be allowed out to have a C-19 swab test to check that I hadn’t contracted the virus before surgery. Okay, not a problem. I can get Morrisons to deliver the shopping during those two weeks of isolation so I was good to go.
The following morning, I got a phone call from the Team to tell me that I needed to go to A&E as soon as possible to have a blood transfusion. Now, what say what now? Blood transfusion? What the bloody hell was going on here? I got him to explain it all to me again because he had caught me right off guard with those words. Apparently, the blood that they took from me the previous day showed that I basically had sod all red blood cells in my body and dangerously low iron levels. Well, we’ve known for a while that I’m anaemic but nobody at my GP surgery has ever really followed up on it and, to be honest, given that my life for so long has been dominated by the gallstone episodes, I hadn’t bothered chasing it up either. So, the upshot was, I had to get myself to A&E straight away, tell them what the situation was and get a blood transfusion. Otherwise, I wouldn’t be able to have the surgery.
I burst into tears on the phone to Mum and Jill. Jill said she would come with me. So, after getting myself together, I drove round to Jill’s to pick her up so that we could get off. As I pulled up outside Jill’s, I got another phone call to arrange the actual date of the surgery. Bloody hell, give me a break people. So, surgery was set for Monday 7 September 2020 and, given that I had to isolate for two weeks beforehand, I had to sort this blood transfusion thing out by Monday 24 August so I had 10 days to get ready for the surgery to their satisfaction. Great. As much as I love a deadline, this was taking the piss.
Jill and I got the hospital and Jill was unceremoniously told that she couldn’t come in with me, that it was patients only in A&E. Pre-Assessment had told me to take someone with me given my mental health issues but the nurse on the front door of A&E was not having it at all. So, I had to send Jill home in a cab after she had wasted most of her morning whilst I sat and waited…and waited.
More blood was taken and a whole chunk of it was spilled all over the floor in A&E as someone couldn’t get in at the right angle into my vein and ended up nicking it instead of getting the needle in it! Blood flowed all down my legs, all over the chair and all over the floor. They eventually went for the other arm (that was used the day before to take the blood tests) and a cannula was put into my hand ready for the blood transfusion. A blood transfusion takes up to four hours. Oh great, can’t wait for that.
I saw 12 different professionals during the course of my 7 hours at Darent Valley A&E. Most were more interested in my extra kidney and, according to a few of them, I have become known as “The Kidney Girl”. There was much debate about whether a blood transfusion was actually needed or whether iron infusions were the way forward. Well, after 7 hours and umpteen conversations, it was decided that iron infusions were the way forward to start off with. But, and it’s a big BUT, A&E don’t do iron infusions. It’s done in a different clinic that I would have to be referred to. Hopefully, they would be in touch with me in a couple of days to get the infusion done before I had to go into pre-op isolation.
So, after all that time, being prodded and poked all over the place, losing a chunk of what little blood I had left, a C-19 swab test, way too many conversations about being “The Kidney Girl” that I considered to be practical in determining my treatment and actually not having a resolution, I was sent home. The clinic that I was referred to was the AEC Clinic (Ambulatory Emergency Care). They would be in touch in a couple of days. I stopped off at Jill’s on the way home for a cuppa and a vent of what a waste of a day, looking like a pin cushion and my arms bruising nicely from the cocked up attempts at taking blood and the unused cannula in my hand.
Well, Friday morning first thing (the very next day), I got a phone call from AEC to get there as soon as possible that morning and I would be assessed for either an iron infusion or a blood transfusion. The blood transfusion option was still on the table. Oh for the love of God. They gave me a password to get into the main hospital building and off I went. I just text Jill and called Mum to let them know the latest and off I toddled to the hospital – again. I got there at 10.30am and sat and waited…and waited again. More blood tests, more discussions with various specialists and still no decision about whether it was going to be a blood transfusion or an iron infusion until 3.15pm when I was escorted to a bay by a nurse and hooked up for an iron infusion. They were originally going to do both. It turns out that you can’t have both at the same time either. If you’re having a blood transfusion, that has to be done all on its own. It was when I was being hooked up for the iron infusion that I actually asked if there was a blood transfusion coming afterwards and he said no, just the iron infusion. Oh, okay, well depending on how long the iron infusion would take, I would be going home afterwards. Cool. Would be you believe that after all that, the iron infusion took 20 sodding minutes! 🙄Another day wasted in a hospital waiting and waiting and being prodded and poked and even more discussions about my extra sodding kidney, all resulted in 20 minutes. And breathe….
However, I would have to have a second infusion the following Friday. There would be more blood tests, another C-19 swab and the blood transfusion was still up for debate depending on the blood test results on that day. Lord have mercy. Can somebody please make a bloody decision about this transfusion? The possible blood transfusion was the least of my problems after the infusion. The list of side effects is, quite frankly, worse than those for a general anaesthetic. Thankfully, I didn’t get the nausea and the headaches but the joint pain was absolutely out of this world, and it lasted pretty much the whole week until the next infusion!
The following Friday, I toddled off for my second iron infusion and still none the wise as to whether there would be a blood transfusion. My arms were still bruised and sore from being prodded and poked the week before and I had literally just recovered from the joint pain side effect of the last infusion. I arrived for yet more blood tests, yet another C-19 swab (let me tell you they are not fun so hats off to anybody who has to have them on a regular basis) and even more flaming discussions about my damned kidney and a blood transfusion. It wasn’t until I was hooked up again for the iron infusion that they told me I wouldn’t be having a blood transfusion and that the latest working theory was just to have extra blood on hand when I actually had the surgery. Really? That didn’t really instil a huge amount of confidence I have to admit. 20 minutes later and the second infusion was done and I was on my way home again to get ready for not only the ensuing joint pain, but starting to organise myself for the pre-op isolation.
The pre-op isolation ran over Bank Holiday weekend. Over that weekend, I was invited to more than five different social events with friends and I couldn’t go to one of them! I hadn’t seen any chums properly all year and the one time that we could all meet up, I wasn’t allowed. Proper grumpy. There was a huge part of me that was thinking, well I’m not having my C-19 swab until the following Friday so that would be the deciding day of whether I was having the op and should I just risk it to have something resembling a social life? I chose to be sensible and not go to anything. I decided that I couldn’t run the risk of not being able to finally have the operation that should change my life for the better for the sake of catching up with chums. As it turned out, I had a whole series of episodes over Bank Holiday weekend so even if I had gone out, I’d have been as sick as a dog and probably felt so humiliated that I’d been unwell whilst out with chums.
On Friday 4 September, I was back at the hospital yet again for my official pre-op C-19 swab. I think it’s actually harder to have the swab knowing what’s coming. I gagged a lot during the swab to the back of the throat and the swab up my nose really tickled and made my body shudder. Thankfully, they managed to get a swab but proceeded to inform me that I needed to just “pop next door” for more blood tests to see how the infusions had gone. Most thankfully, next door were expecting me and I didn’t even have time to send a text before I was in the little room with a nurse who was an expert in taking blood and I genuinely didn’t feel a thing. Well, there was a first for the past month!
So, that was it. I was done. All I had to do know was read all the paperwork again as to when I had to stop eating/drinking before Monday, book the cab to pick me up at stupid o’clock in the morning as I had to be at the hospital for 7am and pack my little “just in case” overnight bag. After a rough 4 weeks of blood tests, C-19 swabs, having to spend way too much time in hospitals and endless discussions with too many professionals to mention, the surgery was going to happen. I was ready…or so I thought.
Living The BPD Life 