Following on from my last blog post I ended up spending a week in hospital before my Hickman line was fixed. I had to have a second blood transfusion cause the first one only raised my haemoglobin from 70 to 76g/l and it needed to get above 80g/l. So on the Sunday the second bag of blood was given and I hit 86g/l which meant that I could be added to Monday’s list to get me line repaired (or replaced if it couldn’t be fixed).
But when the doctors did their ward round they told me that there were staff shortages in Interventional Radiology (IR) (which is the department that deals with fixing or inserting new lines) and that they would have to see if they could do it the next day. Turns out that they couldn’t do it on Tuesday either so I was really starting to feel fed up about being stuck in hospital when I technically wasn’t unwell. But I did get on Wednesday’s list and thankfully they were able to repair it which turned out to be literally a 5 minute job. I was so pleased that they didn’t need to put a new line in because I’ve already had 11 lines in 7 years- which is a lot considering that most people have one line for 5+ years. Because a Hickman line is tunnelled under the chest wall every time a new one is inserted scar tissue forms and then trying to insert one through the scar tissue becomes more difficult and more painful each time I’ve had so many lines that my chest is full of scar tissue on the inside, not to mention the scars you can see on the outside, plus the veins are becoming scarred too so getting access is becoming harder. At some point in the future they won’t be able to get a new line in and then they will have to use the veins in my groin so the fact that they were able to repair it was a really big deal.
I had to stay the night on the ward after it had been repaired so that they could run my feed through and make sure everything was hunky dory but it was so I was discharged on Thursday. I didn’t actually get to go until after 5pm because it seems to take forever for them to get the medications that you need to take home from the pharmacy and for all the relevant paperwork to be completed. When you’re sitting waiting to go home the minutes seem to drag but I don’t like to complain because if I’m well enough to be going home then that’s a good thing.
The first nights sleep when I get home from hospital is bliss. Nobody bothering you in the night to do your observations, your own fluffy pillows, a real hot water bottle made with boiling water...all of life’s little luxuries. But that bliss was short lived when the following day I had a stomach bug. I couldn’t believe it! Home for 18 hours and already I felt like shit. I was going to the loo every 15 minutes Friday afternoon and all through the night and I was exhausted. I spent all day Saturday in bed but the next day was determined to cook Sunday dinner so we could all sit down together as a family for the first time in ages.
Since having the blood transfusions I’m finding that I’m feeling a little bit better but I’m still exhausted and struggling with managing really basic tasks around the house. Today I emptied the washing machine and hung the laundry up to dry and then had to go and lie down because it left me completely wiped out. The doctor has got me on some different iron tablets in the hope that they will be absorbed better than the last ones but if my Hb levels remain low I may need regular blood transfusions.
I’m just frustrated by how painfully slow my recovery seems to be. The doctors don’t know why I’m suffering from such severe anaemia so now they want to carry out an enteroscopy- which is where they put a camera along the length of the small intestine. Because it is very painful they will either need to admit me and do it under a general anaesthetic or I could have a capsule test. This is where you swallow what is basically a tablet with a camera inside it which records pictures and video as it travels through your insides. Pretty amazing stuff. I know I only just had the flexible sigmoidoscopy but the doctors think that the problem may be higher up than they went with the scope the other week. Hopefully this will give us some answers because remaining on steroids long term isn’t really a viable option. There is talk of me needing to have surgery and go back to having a stoma but I would rather that be our very last option when everything else has been tried and exhausted. I know the surgeons aren’t chomping at the bit to operate because it would likely be a very tricky operation and a tough recovery for me so hopefully we can work out what exactly is the problem and how best to fix it. Another option being discussed is for me to stop eating completely and go fully onto TPN. This way I would get all my calories and nutrition from the feeds directly into my blood via my Hickman line and my bowel would be able to rest. I’m not eating a great deal at the moment because of the pain but the idea of not eating again is very daunting. Food and drink are such a big part of life- imagine no more birthday cake, going out for dinner, no more coffee and cake with friends, no cheeky takeaways... I got a taste of this over Christmas when I was so unwell I couldn’t eat a thing and sitting down at the table with a lucozade while everyone else tucks into the Christmas dinner you’ve spent hours cooking is tough psychologically. I don’t know what the answer is but I guess first we have to work out exactly what the problem is. Until then I’m trapped at home, feeling like crap and battling with my body on a daily basis.
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