T + 2269. Gravel for breakfast and diarrhoea storms.

28/04/2019


At time of writing I am on day 107 of my stay in hospital. It has taken a long time to eradicate the bugs that caused both sepsis and pneumonia - they move around and lurk in pockets in the lungs. It has taken a cocktail of strong antibiotics to get me this far - 3 or 4 different types switched in and out over the months.  I’ve had multiple chest x-rays to help the docs track it down and fortunately they seem to have nailed the little bastard. I no longer spend my days (and nights) hooked up to multiple IVs. My oxygen saturation is up from 92 (using oxygen) to 97 - 98 without it. I’m going to tempt fate by saying things appear to be getting back on track.

Obviously the lengthy confinement has had an effect on me- for a period of about 3 weeks in March, I’m pretty sure I had an interval of depression. I stopped eating and just spent my days curled up in my dark room drifting in and out of sleep. I was not feeling sorry for myself, I was just feeling intimidated by the task before me. My body was skeletal, I couldn’t walk, I was wearing a fucking nappy and had a plastic tube slipped up the length of my dong.

I wasn’t issued with a dummy.
It would have been useful during
one of the diarrhoea storms.

The concept of merely getting out of bed and going to the toilet for myself seemed monumental, let alone being up and about and fit and doing again and I think the distance I had to travel was overwhelming me.

When I did attempt to eat I started gagging and coughing uncontrollably. To counter this, and the weight loss I was undergoing, I was fitted with a PICC line and fed through a tube in my left arm. After about a week the food line developed a bacterial infection so the feeding was stopped. My weight had gone from 72 kg down to 54kg. I struggled to eat, sometimes managing half a bowl of Special K, which to me was like gravel.

Yummy breakers!

It seems to be for me that it’s a lot easier to lose weight than to pack it back on afterwards. Luckily I got over the eating issues, don’t ask me how, I just woke up one morning with an appetite and started eating again and I’m very slowly regaining weight. At one time, there had been serious consideration given to the idea of fitting me with a PEG, which is a feeding tube that is inserted directly into the gut. But once my appetite returned, although it would have helped me gain weight more quickly I decided that given the possible downsides (infections, tube blockages) I would not go ahead with it.

Getting past the eating issue has been a turning point for me, I have more energy, my mood has improved dramatically and I’m now optimistic about the next move to the physical rehab centre.
The only cloud on my horizon is that my old mate GVHD joint pain has dropped round to chew the fat and the results are worse than before. This time it’s bi-lateral and in my wrists, elbows, knees and shoulders. When I wake first thing, I can’t really move - luckily the staff here are quick to top me up with a cocktail of oxy, paracetamol and ibuprofen to take the edge off and after about 30 minutes I can move. But I’m concerned that I’ll need to start using Gabapentin and Prednisone again - which will be  bollocks of the highest order.

My mobility is improving weekly. I still need the Zimmer a lot of the time but am hoping to graduate to crutches soon. One issue I have is that my thigh muscles are more developed than my calf muscles which have a tendency to give way without warning so I have to be sure to have some sort of support within easy reach just in case. My walking gait can be compared to a slow motion version of John Wayne, but with a sore arse - piles maybe poor fella.