A more positive sounding update

Update with some positivity, things are very much still struggle but there’s some improvement and this is with great thanks to support from friends and professionals.

Yesterday (Sunday) I had an appointment at the hospital for 8 am. I decided that I needed to feel more like myself so I made some extra effort to put on nice clothes and do my make up, brush my hair, have a little wash. I did some preparation the night before.

The point of the hospital visit was to either have a blood transfusion or have an iron transfusion. This is because my haemoglobin was dropping into the severe anaemia range and probably the main cause of my severe weakness and a range of other problems.

I managed to get myself out of bed at about 6:30 am. I did what I needed to do in the bathroom, and got myself downstairs to wait for my friend Claire to come. I am very thankful to Claire for being there, we decided to get an Uber to the hospital, and she wheeled me to the emergency ambulatory care unit. This time since I wasn’t dumped there by A&E the experience was so much better, and it was really quiet on the Sunday morning. I got a nice soft reclining chair by a window and I could see the sea in the distance when I looked over my shoulder.

I am also thankful to all of the staff, the nurses, and the doctors, they were all really good to me, and I felt tended to and care.

It took perhaps over an hour and three people to get a cannula so that they could take my blood and do the infusion because my veins are difficult to see or small. Eventually, after some pain and soreness the cannula was in. I lost my mask of composure a few times and felt very vulnerable and started crying but it was okay.

I had some sandwiches, biscuits, an apple and tea cake, also had a coffee, so I felt a bit better for that.

The blood test came back and showed that once again my haemoglobin had dropped from 83 to 79 which placed to me officially in the severe anaemia range. Also, my blood pressure has been low as well as lacking various nutrients, and dehydration.

I had the iron transfusion, the same method as the IV drip I had the previous Friday through the cannula in my arm. It was only about 30 minutes. Blood transfusion would’ve taken longer depending on the amount of blood that I needed. I did not have any adverse effect during procedure.

I got home once again, thanks to Claire, at about 2 pm.

So what’s next?

I need to do the same procedure again on the coming Sunday. Sadly, I won’t have Claire there this time, but the good thing is that last experience means I have prepared. I think my only question is getting someone to wheel me to the EACU. I might buy that time be able to just make it on my own but really I should not be pushing myself.

In the meantime, I need to look out for side effects because iron can aggravate my gut and therefore potentially make my ulcerative colitis worse. Hopefully this will not happen and today I am feeling a little better, it can take a week or two for the effect of an iron transfusion to be known.

After yesterday‘s trip to the hospital I was of course feeling very drained. It has been a reasonably successful day though.

I am happy that I managed to get around the room a little and tidy a few things up as this makes me feel better. So I now have a reasonably uncluttered room it feels good.

I have made the effort to sit up properly across the bed with my feet resting on the chair and a cushion, rather than lying around on my back feeling terrible looking at the ceiling. I did need to lie down again a little later, but then have got myself back up again.

Another big win is that I ordered a few things to be delivered and got myself downstairs to pick it up and then back to the bedroom.

I have eaten. I need it some food before I took my steroids, I didn’t have a bowl in the room though so since I have had to sadly suspend being vegan for a while just to get something in, I made tuna and mayonnaise wraps without a mixing bowl using a little lap table for my laptop sitting on my bed and mixing things over the wrap and in the tuna pot. Thanks to the delivery I have had some more wraps, I have two things I can make just using the kettle, including some oats for breakfast , and some noodles. I sat down on the bed having made some black coffee in the French press, didn’t have a mug but had the little cup from my flask, and so I had black coffee with some bourbon biscuits. This felt good