I have been home for about four hours and have probably slept for over two of them. Hospital is tiring, even though I felt though I slept for half the time.
A big thank you to my proxy blog writer, Elizabeth, who did such a wonderful job collating and articulating my thoughts and adventures. I will do my best to remember the details under non-chronological topic headings.
The Infection
I went to hospital initially because my temperature started to go up. It was just under the borderline 38C, but by the time we got to Emergency, it was over 38C and a cough started to brew. The Medic Alert card I was issued did its job perfectly as I was fast-tracked through ED and got onto anti-biotics quick smart. I spent the night in isolation in ED and moved the next day to a single room in general surgery ward. The infection continued to develop.
Eventually, it was established that I had legionnaires disease. This is a big deal on its own, let alone to tackle it with no immune system. They eventually backtracked on this diagnosis and confirmed they have no idea what I had. As the infection was in the same stream of infection as legionella, they treated on what they knew at the time and it worked. That is good.
The Haircut
Usually a hair cut would not make the tabloids. For some, however, it is a big deal to lose one’s hair. For me, it is what happened after that made it memorable. I had been getting shivers with my fever for the first few days, which is nothing unusual. To sway between heat fever and cold shivers is tiring for a body, and I was getting tired.
My hair started to fall out in clumps, so we knew it was time to get out the clippers. Elizabeth did the honours after I covered myself in towels and plastic sheets to collect the hair. When we took the towels and plastic off, however, my body went into rigours and just shook violently for about 20 minutes. I jumped straight into the shower and blasted myself with hot water, only to make my skin go red hot. Then I jumped into bed where I started to warm up. I was given a shot of pethidine that made me feel hot and uncomfortable. It took the next day for my body to recover. My head was now bald. I have had more pleasant haircuts.
The Appetite
The appetite went right down to almost nothing. The hospital food was not bad, but I just did not have the energy or desire to eat.
Daily Activities
My brain was reduced to just functioning really. I couldn’t read, write, watch tv or even bring myself to listen to the radio. The maximum amount of stimulation I could handle was watching the clock tick or the IV drips do their thing. I was connected to the IV for the first week and a half. I must have gone through about 30-40 bags of fluid including anti-biotics, anti-fungals, anti-virals, blood transfusions, hydration, glucose and platelets. Being hooked up to the IV pump was pretty much my only activity. That was enough.
The Headache
I had a cranking headache since being admitted. It would come and go without warning and no painkillers seemed to do anything to stop it. This caused some concern and for that reason I had a head and neck CT scan and X-ray. Both revealed nothing suspicious. The headache is still around, but I think being back in my own bed and without the central line in my neck it will have a chance to get better. The headache was quite an issue when it got so painful that I couldn’t cough. I had to cough to clear my chest and keep my lungs working properly, so pain management became a priority.
The Central Line
The central line was taken out of my neck today and the nurse did a fantastic job. I honestly did not feel anything. I feel like I have been released from a portable prison that stopped me from functioning properly for the last 3 weeks. Some people have these lines in for months. I take my hat off to them.
The Bronchoscopy
In order to establish what kind of infection was rattling in my lungs, I was given a bronchoscopy so that they could analyse some ‘washes’ they did of my lungs. I was sedated so I remember nothing of the procedure. I love a good sedation.
The Staff
The Doctors, Nurses and Hospital Staff were, once again, fantastic. There are always going to be a few people in every profession who lack the confidence, knowledge or skill to be brilliant, but I generally had brilliant health care workers who I am forever thankful for. I cannot say enough about how wonderfully I am being looked after. My specialist is very well respected and rightly so. He is incredibly tactful and has demonstrated wisdom in every step of my treatment. We are reminded every day about how fortunate we are in our health-care system with the level of care that we receive.
The Summary
I vomited only about 3-4 times the whole two weeks. I didn’t have any mouth-sores. I didn’t suffer major digestive tract purges. My fatigue is at a manageable level.
Basically, it may seem that if I didn’t have my chest infection, I may not have known that I was sick. I asked one of the doctors how sick I was. It was all carried in the tone, but he just said, “You were sick”.
Now my levels are creeping back up to being safe. I feel like I escaped a huge amount of suffering and discomfort even though I had a nasty infection on top of high-dose chemo and the transplant. I am very thankful for that. As I write this, the news is reporting the possible tens of thousands killed in Burma and 100’s of thousands displaced due to the disastrous cyclone that has moved through that area. My ordeal sounds like a walk in the park.
So that is it, more or less. My main goal now is to stay out of hospital by taking things easy and avoiding other infections. I am back at the clinic on Thursday for a check-up and a talk with my specialist in regards to what comes next.
Sister Rachel was due to deliver on the 1st of May. The little’un still hasn’t made an appearance yet, but will have to by tomorrow or he will be given his marching orders with an induction on Thursday morning. Exciting week.
Love you x
I didn’t have my phone with relevant numbers to call, so please accept a belated long-distance hug (probably the safest one you’ve had for a while!) from the man-bear from the south!