I slept well again on Wednesday night and woke up on Thursday feeling pretty stable. I felt like I had finally adjusted to the time zone, and was getting into a pretty good routine of going to sleep around 9 pm and waking around 7 am. In the evenings we would start watching something on Netflix, and literally five minutes in I would be falling asleep, I think the sheer volume of treatment I was doing every day was just draining me. I had read that one side effect some patients experienced during treatment and after Stem Cells was insomnia, so I was making sure to appreciate the fact that I was sleeping well, as I knew not everyone was and I didn’t know how I would be sleeping in a couple of weeks’ time.
Having arrived at Infusio just before 9 am, the first thing on my schedule was the Global Diagnostics Scan. Once the initial scan was complete and I had moved onto the treatment, the lady next to me started chatting to me. She was back at Infusio four months after getting Stem Cells for ACT treatment, and she told me she was doing pretty well. I really appreciated being able to speak to someone who was a little further ahead in the process, and she was kind enough to give me her contact details so we could keep in touch. There really is such a supportive and community-focused ethos at Infusio, fostered by staff and patients alike, and that seems to translate into a really positive and inspiring atmosphere which undoubtedly makes the whole experience easier. I then went upstairs and had a twenty-minute session in the Novo bed, before heading outside to catch up with some of the other patients. There had been a change in my schedule because a staff member was unwell, so Caryn suggested I take a break and go and get something to eat as I wouldn’t be needed again until the afternoon. We walked up to Kreation and I got a berry smoothie, slowly trying to make my way through the whole menu before we leave! Once back at the clinic, Dr Kim came to talk to us all about the Stem Cell procedure which was scheduled for next week, and described the whole process in more detail. She recommended that in addition to the standard procedure, I get an extra injection of Stem Cells in my gut. She explained that because the gut houses such a large part of the immune system, if your gut is particularly damaged (as mine is from coeliac disease & SIBO), there is a risk that all the new Stem Cells will go there, rather than repairing other areas of the body, hence the requirement of an additional injection. It would cost $1000 extra for the injection, so I decided to think about it and decide by the end of the week if I wanted to go ahead with it.
After my consult, Hollis got me started on my IVs’ for the day. My hand was still swollen from the painful line yesterday, so we used the vein on my left arm with no problems, and I had Dioxychloride, Cell Prep, pH Regulation and two more antimicrobial and antivirals. I sat outside whilst getting them and chatted with another patient Ashley and her husband. I was really enjoying getting to know the other patients as it made the whole experience so much less daunting not going through everything alone, and I was very grateful to meet Ashley and hear her Lyme story. We are almost exactly the same age so it was really nice to meet someone who is in a similar stage of life, and Ashley is a registered nurse, which meant she had a much better grasp of the scientific basis of all the treatments than I did, which was so helpful. Whilst I was getting the IVs Alex walked to Whole Foods and bought me some sushi, and I had this with green juice for lunch. I had been exclusively wearing leggings and t-shirts every day to the clinic, but for some crazy reason I had decided to wear a jumpsuit this morning. Whilst it was comfortable, it proved a nightmare trying to go to the loo whilst also attached to my drip. When you’re getting multiple fluid bags infused into you and drinking loads of water and tea to keep hydrated, you tend to need to make quite frequent trips to the bathroom, and I made a mental note not to try and look cute again, and stick to more practical outfit choices!
I wrote before about how Infusio aims to try and ‘demedicalise’ treatment, to ensure that patients are in as relaxed a state as possible, and therefore respond to treatment in the best possible way. Every day we had our temperature and blood pressure taken, and today Hollis announced that my blood pressure reading was completely normal. I struggle hugely with regulating and controlling my blood pressure due to my POTS, and it is normally very low, so I was very happy to hear that my reading was normal and couldn’t help but feel the non-medical and therefore non-threatening atmosphere was playing a part in my body being in a better state. Next up were my injections, and today I was having the thirteen NAD and Thymus shots again, except this time at 40mg – double the dose of the first day. My stomach and back were still bruised from Monday’s injections and they were much more painful at the higher dose, but as always Hollis was an absolute star and got me through them as quickly as possible.
Finally I was ready for my last appointment of the day; my massage. Today’s session was a lymphatic massage which I hadn’t tried before, and it lasted for an hour and a half. It felt very therapeutic and relaxing, and De’leon was so knowledgeable; he explained that he thought the knots in my back were causing my frequent headaches which was very interesting to consider. I know my lymphatic system is a real problem area for me, so I made a mental note to try and find a therapist in London who could continue this treatment for me when I got home. We didn’t end up leaving the clinic until 6 pm and I’d had a headache all afternoon, so it was a very quiet evening with room service and an even earlier night. I couldn’t believe I had nearly finished one week of treatment already. So far it hadn’t been as bad as I had expected, but I was still looking forwards to a break over the weekend, so I felt relieved that there was only one more day to go.