Yesterday was very interesting.
I am very used to being at the hospital, the regularity of my clinic appts and my ‘need’ for blood tests within the NHS trust system, I’m there at least once a week some weeks. That being said, it was extremely nerve-wracking waiting to be called into the infusion room. With my regular IBD nurse off sick at the moment, I was handed over to her back up, partner in crime and she administered my medication. She is great, not as brilliant and proficient and professional as my regular IBD nurse, but she was just what I needed yesterday. Someone to take away my fears and reassure me that it was normal to feel apprehensive.
Regardless of the fact that I am no stranger to needles and no stranger to biological treatment (something they call as not being “biological naive”, how bloody brilliant eh?) it was still alot of information and questions before I could get canullated and start the infusion. The whole process took just over 5 hrs, I was there for just under 6hrs.
I was asked all the usually checks: HAD I SUFFERED FROM A COLD, COUGH, INFECTION, ABSECESS, FEVER, DENTAL WORK OR ANTIBIOTICS IN THE LAST FOURTEEN DAYS? HAD I SEEN MY GP OR DENTIST IN THE LAST TWO WEEKS? COULD I BE PREGNANT? All standard questions for starting biological treatment, at least under Heart of England NHS Trust, something I had already gone through with all my loading doses of Humira two years ago now.
Then my temperature, blood pressure and pulse was taken. Then I was weighed so that my dosage for Infliximab could be worked out. Now, I currently weight 92kg (alot for my build and age, something I am struggling to lower, but more about that another time) so I was given 460ml of Infliximab. Guidelines here specific that 5ml of Infliximab is given per kg of body weight. The most length part of my administration yesterday was the time it took to be mixed and checked. But this is important, giving the correct dose, like with any medication, determines how well the patient responds to treatment. Given that I will return in two weeks for my second infusion, giving me the right amount for my weight gives me the best chance that I will respond, if not from this first one, most likely the second.
I then got canullated, flushed the line, sat in one of the more comfortable chairs and got my IV hooked up and off we went.
Sitting there for two hours wasn’t too bad. I had my music and my Kindle, all was well. After about 40 mins, I was joined by another patient who was restarting after a 6 month gap. It was rather nice meeting another patient on the same drug as me, in the same hospital under the same consultant. It was probably the first time I had met and interacted with a fellow IBDer at the hospital. Despite attending regular (6 weekly, at present) clinic appointments with my GI, I’ve not really met anyone. I sit in the waiting room, usually with my mom or my boyfriend for company, and don’t talk to anyone else. And as I found out yesterday, I attend my GI’s “every day” clinic, for all matter of Gastroentrology problems, it is not specific to IBD. Well, that changes in the New Year under my new consultant. Happy days!
So, my observations are done every 20-25 minutes, to keep a check on me and how my body is initially responding to the treatment. Like being at work, I was asked if I was okay ALOT. But this is my nurses job, to administer these treatments and maintain the guidelines set out by 1) NICE and 2) Heart of England NHS Trust. She was making sure I was not having an adverse reaction or becoming unwell. Something that only she would know symptoms of and be able to help with. After the infusion was complete – the very familiar, if slightly dormant, sound of the IV pump blaring, I was allowed to get up and stretch my legs, use the bathroom and return to continue 2 more hours of observations. This was the most drawn out part, I was sleepy and wanted to nap but had to keep awake so that I could be observed. It soon passed and I was allowed to leave the Treatment Centre and return home.
Last night I napped on and off about 5 times. I hate napping, it ruins my sleeping pattern, so trying to keep awake was hard, and it was also futile. I felt so drowsy, I couldn’t help but take a couple short naps. Not that they did much, I woke up grumpy and very disoriented, which is normal. I slept for a good 8 hrs and now am waiting to feel some sort of hunger so I can have a late breakfast before going into work this afternoon.
I don’t feel a mass of change or difference yet, but this slow release is to be some what expected given my clinical history with biological treatment. By the weekend I hope to see some changes and be able to go a little further without the need for so much rest. And hopefully, my second infusion on the 26th will go even further to help mend my broken insides. I get to attend my final clinic with my current GI that afternoon, so I hope I have good news for him, I am always such a complicated and difficult patient.
All this being said, I am still concerned over my narrowing and its potential to not respond to this treatment, or if it does, its potential to hurt me in the future. I am also extremely aware of how little of an immune system I have and the close proximity I work in with people who have no regard or respect for my immune compromised body. There might be a need for some harsh words soon if people do get sick and decide that it is a wonderful idea to be around me.
Lets just hope this does the trick and it does not lead me down a short path into surgery. I am positive this will be like Humira to some extend and help me get back on my feet, so to speak. I will fight to get over this first hurdle!