This last week has been full of ups and downs in lots of ways. It’s been a strange one at home as Hubby has had to work away a couple of nights this week and even though the kids are old enough to be by themselves and look after themselves as a Mum you can’t help but worry about them. The dog went to the dog sitter so he would be walked and looked after but that meant that he wasn’t there at night to guard the house and protect the kids which I didn’t like. And because my parents are on holiday it meant that in an emergency they weren’t just up the road like normal. And I dread to think what they’ve eaten this week! It’s probably all been from various takeaway places but I suppose if they’re not cooking then they can’t burn the house down right?? Thankfully there were no fires or any other kind of emergencies, the kids have survived and all is ok.
But things haven’t been quite so straightforward for me. The good news is that I’ve restarted adalimumab- the immunosuppressive medication that should help control the Crohn’s disease. I say should because the doctors aren’t all that confident that it will actually help but they’re running out of options and this is one of the last things to try. I had my 4 loading injections last Wednesday and then I will have 2 more injections 2 weeks later and then go onto fortnightly injections going forward. They will deliver these to the house and I will give them myself. Luckily they all come in predosed syringes, a bit like epipens, so you can’t really go wrong with them. And I have already the medical fridge to store them in and have sharps bins from doing my TPN feeds so I’m all set up.
But you know how I seem to collect illnesses, diseases, syndromes etc? Well this week saw me suffering from something new to add to the list…Bradycardia This is where you have a persistent low heart rate below 60 beats per minute (bpm). And mine is was well below that at around 35 beats on average but it did dropped as low as 30 on occasion.
Having had multiple admissions over the last months and years and having had my obs done hundred and hundreds of times I can tell you what my average blood pressure is, temperature and heart rate and it’s usually between 60-70 bpm. Even at that rate it’s pretty slow for someone that’s not an ultra fit marathon runner (and we all know that’s not me!) But I didn’t have any chest pains, dizziness or shortness of breath and I’ve not been passing out so I initially the doctors didn’t think there was any huge cause for concern. But because it had been going on for a few days and didn’t seem to be improving the doctors are looking into why.
So despite it having been slow very for the last couple of days on Sunday night I ended up having my observations done hourly which meant a night of constantly interrupted sleep. Then at around 4am someone came to do an ECG test which is where they put stickers around your heart, on your wrists and on your ankles to check the heart’s rhythm and electrical activity. Then after a blood test one of the doctors came in about 5am to say that the ECG didn’t show anything worrying, my blood tests didn’t show any electrolyte imbalances which can cause bradycardia and that they didn’t really know what was causing my heart to beat so slow. It was all a bit of a mystery.
On Monday morning I went down for an ultrasound scan of my abdomen to check on my gallbladder, pancreas and liver. Although I had had a CT scan a few days earlier some of these organs don’t show up too good on that s an so it’s best to have an ultrasound. I already know that I have gallstones but I think the doctors want to see if they’ve gotten any bigger or if there are any new ones developing.
The scan was pretty painful as the sonographer had to press quite hard to be able to see everything and it seemed to take longer than the ones I’ve had in the past. Not sure if that’s good and he was just being thorough or if there was more stuff for him to look at this time.
My blood tests showed that I was severely anaemic again so it was decided it would be a good idea to give me an iron transfusion. I’ve had one of these before and I always think the bag looks like the fake Halloween blood that you see in the shops at this time of year.
Iron infusions can be dangerous believe it or not and you can have bad reactions to them so you have to have your obs taken before they give it to you, halfway through the 30 minute transfusion and then again afterwards. The nurse said I was to buzz if I felt funny at any time or if I started to get any chest pains or dizziness etc. I think because my heart rate is still so low they’re just being extra cautious and we always joke that if anything were to happen there would be an awful lot of paperwork for them to fill out!!
Because my heart rate remained low my the doctors asked the cardiology team to look over me. They reviewed all my medications to see if there was anything I was taking that would slow my heart rate but there wasn’t. If anything the ketamine I’m on for pain relief should speed it up! So they decided they would get me to wear a 24 hour cardiac monitor to see if that picked anything up. The cardiology nurse came on Wednesday afternoon and hooked me up to that.
There were three sticky pads, one at the top middle of my chest and then one on each side under my boobs, that the wires were connected to and the wires then connected to the monitor. Although it looks a bit bulky it was quite lightweight and I managed to sleep and move around quite comfortably. I’m glad I was wearing it on Wednesday night because I had the most awful experience and I honestly thought I was having a heart attack.
It was about 8pm and I was just lying in bed watching tv. I had started to get this niggly pain in my left hand side of my chest but I thought it was just the way I was lying so I turned over. But the pain got worse so I asked the nurse for some pain relief. I wasn’t due any for another 40 minutes so I thought I would just try to get comfortable in bed and wait until they could give me a dose of morphine. Well within about 15 minutes I had started to sweat, I felt sick and the pain was getting worse and worse. It was all down the left hand side of my chest and radiating into my back and shoulder. I got up to get a sick bowl from the corridor but almost collapsed.
The night nurses all came running and got me onto a wheelchair and immediately did my obs. My blood pressure had sky rocketed and the pain was unbearable. Luckily one of the junior doctors was still on the ward so she came to see me as soon as the nurses had got me back to bed. She got the ECG machine and ran the test but it was hard for the sticky pads to stick as I was sweating so much. She also did blood tests to see if I was having a heart attack or if there was any damage to my heart. To say I was terrified was an understatement. When she got the reading from the ECG she puzzled over it and then said she had to call her senior which immediately shit me up. Luckily he didn’t think there was anything to worry about and she had just wanted to get a second opinion. While waiting for the blood test results she gave me a dose of morphine to help with the pain. I honestly have never felt pain like it. It was like someone was sitting on my chest and crushing it whilst simultaneously squeezing my heart and poking it with red hot nails. Over the next hour the pain subsided and the blood tests showed that I wasn’t having a heart attack, but my God, it was scary.
That night the chest pains all but went away but the doctors have no idea what caused them. And no, this wasn’t a panic attack as I know that can mimic those type of symptoms and sufferers report feeling like they’re having a heart attack. It’s just really worrying that there might be something going on with my heart and nobody knows what it is or what’s causing it. They did take some blood cultures from my Hickman line to rule out an infection there. Fungal line infections can cause damage to your heart and I had had a fungal infection only a few months ago. So they want to make sure I don’t have another infection brewing and the heart issues are as a result of that. I’m pretty certain I don’t as when I have a line infection I get unwell in a set way: temperature, rigours, flu like feelings, body aches, headaches… and I’ve had none of those. But at least they’re being thorough and wanting to check everything.
Earlier in the week the doctors had changed me from IV steroids to oral and things in my bowels seemed to be settling down. There was even talk of me being discharged on Saturday. In order to get home I had to be off the ketamine for 24 hours and instead of having morphine injections be back on my morphine tablets that I would normally take at home. On the doses I’m on the ketamine isn’t addictive and wouldn’t cause withdrawal symptoms so stopping it suddenly wouldn’t cause any problems and it’s always done in conjunction with the pain team nurse specialists. So on Thursday morning we decided to stop the ketamine and then Friday I would stop the morphine injections ready to go home on Saturday. Well that was the plan. But as you can probably gather, things didn’t go to plan.
On Thursday afternoon the pain in my bowels became really bad. At first I tried to grit my teeth and get through it because I wanted to stick to the plan that would get me home on Saturday. But by late afternoon I was in agony so I asked for them to restart the ketamine. I figured there was no point going home on Saturday if I was just going to be in agony and I would probably end up bouncing back in. So I thought I needed maybe another day or two on ketamine to get on top of the pain. But the pain only intensified and all through the night it was agony. It was as bad as it was when I first came into hospital 10 days before.
On Friday morning it was the consultant ward round and she examined me and said that I needed to go back on to IV steroids. She also ordered another CT scan cause she wanted to see what was happening and why things had flared up again. So yesterday was spent with various doctors and healthcare professionals trying to get a cannula in me so that I could have the IV steroids administered and also the contrast dye in the CT scan. After multiple attempts they got one in my foot but then that tissued within 30 minutes so we were back to me being a human pin cushion. After about 15 attempts they all finally gave in and called an anaesthetist to come and do it. She wanted to put a green cannula in (they go yellow for paediatric, then blue, pink and green as they increase in size). I told her she wouldn’t get a green in as I’ve not had one of those in years but being an anaesthetist she was confident she’d get one in. That was until she took a proper look at my veins and then she went to fetch a blue!
So the IV steroids have been restarted and things have started to settle down. I had the CT scan yesterday but probably won’t know any results from that until Mondays ward round. So at the moment I just feel a bit stuck. If it’s the IV steroids that are keeping on top of the Crohn’s then how long will I need to stay on them? Because if I’m on them then I’m in hospital. I had really hoped this would be a short stay, two weeks maximum, but it looks like it’s going to last a bit longer while we figure out what’s going on. I’m still on the waiting list for surgery for at the moment the hospital trust has recently declared a critical incident as they are full to capacity. All non urgent operations are cancelled which means the waiting list I’m on will just continue to grow. And if it’s Crohn’s disease that’s now causing all the problems I’m not sure surgery is the best way forward as Crohn’s can manifest in any part of your GI tract from your mouth to your anus. So even if they cut out the bit that’s really diseased right now there’s nothing to stop it appearing in another part of my bowels. A bit like a game of whack a mole that you’d play in the arcades, just with slightly deadlier consequences.
Comments
Post a Comment