Archives For transfusion

The 21st of October.

I feel like hell. It took me hours to get to sleep because I couldn’t stop coughing, and this morning it took about an hour for me to get up and dressed. 

I’ve basically not moved from the armchair because everything is massively difficult. I’m not sure how I’m going to get back upstairs. My abs, ribs and back ache so much, every cough is painful. I’m quite glad I have photopheresis tomorrow so they can take samples of the cack I’m bringing up and then see if it’s a virus or something they can actually treat. 

I am so tired. I need to go upstairs really early because last night it took me forever to actually get into bed. 

The 22nd of October.

More coughing. I had a Zopiclone which I think was beneficial, and I’ll do it again tonight. 

I had to move out of the armchair to go to hospital for photopheresis. They gave me a sample pot for anything I bring up (unfortunately nothing has come up far enough so far) but they also took bloods and a viral swab so they might show something. They showed that my haemoglobin was 8.4 though so I’ll be having a bag or two of O-neg in the morning, meaning I have to get up early tomorrow so that just fills me with joy. 

Ugh I just feel like shit because I’m exhausted and all my muscles and bones ache from the coughing. And I’m not even allowed ibuprofen because I’m on steroids! And we can’t taper the steroids while I’m poorly because that’ll make the gvh kick off more!

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The 13th of February.

Oh wow I am sore. I was up at quarter to six so we could go to hospital for half seven. Thankfully, things in ambulatory care went well РI read the paper and ignored my grumbly tummy because I was nil by mouth. A nurse called Sonia admitted me, and not long after, they came to take me to have my line put in! Had to have the long chat about periods and how there is definitely no chance I could be pregnant, and go through all the risks on the consent form. They gave me some midazolam which made me a bit sleepy and fuzzy, although I did have to ask for some more because despite the local, it was still pretty uncomfortable. Once it was over, they let me pull out my PICC line which was fun! It was much longer than I thought.

They took me back to ambulatory care where I had to stay on bed rest for two hours, but I was allowed to sit up so I could adjust my body to aid comfort. Once the two hours were over, I was allowed to get dressed and go up to photopheresis. That went really well, thank God. The line is in a good place, so it won’t be awkward to get out of clothes, and we’ll be back tomorrow. I might need a bag of blood or two in the morning. I really hope not as that would make it such a long day.

Becky came over with some brownies and they were very tasty. I’m going to have an early night tonight; I’m so achy.

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Ambulatory care.

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Post-op breakfast, yeah!

The 14th of February.

Well my Valentine’s Day has been such fun. It began with me chasing the nasty black and white cat out of the front garden (a spectacle I’m sure the the neighbours all enjoyed), then going back to hospital early because I needed two bags of blood before photopheresis as my haemoglobin yesterday was only 9.2 and they prefer it to be over 10.

We got there at about half past nine and the blood didn’t arrive for at least another hour, so I just read my paper and waited for the porter to bring it. The transfusions were all very run of the mill; made me quite pink and warm but all in a good way. Then just after two o’clock, I was ready to get going on the photopheresis machine. Just before I did though, I thought I’d pop to the toilet, where someone had forgotten to lock the door so I walked in on an elderly lady who was obviously a patient sat on the toilet. I just blurted “Sorry!” and shut the door as quickly as possible. I went into the next toilet and made very certain that I locked it.This was all fine and dandy and I was pootling along, then when my cells were being returned, the machine kept alarming and not wanting to play the game. Eventually we swapped lumens, because the intensely high-pitched beeping were adding to my level of stress, which was further compounded by the fact that we were forced to listen to Radio 2 all day. We hate Radio 2. At the end of the treatment, you get a time of how long it’ll take to photoactivate the cells and give them back, which is usually about 15 minutes for me. Today, it was 99. It was a good thing I took a lot of food to keep me going! We finally left hospital at six. I was so on the edge of bursting into tears, I can’t explain.

So tonight I am absolutely drained. I’m still very sore and achy, and I would just like to sleep for a week.

And to round off my wonderful day, I whacked my head on the staircase after putting my boots down underneath it.

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We had to make Valentine’s Day cupcakes for a tea party at my Grandma’s nursing home. Seriously.

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Home time.

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