Which started on Tuesday afternoon.
Lumber puncture at 14:00 taking fluid from the lower spinal cord area for virus testing (still looking for source of infection). It took a couple of attempts to get through as she hit something that made my right leg shoot up involuntarily a couple of times, but it was relatively painless.
Dermatologists came up at 18:00, had a good look at the rash which could be GvHD, could be drug related but hey we treat it the same anyway here's some topical creams to get rid of it. They took a small section of skin from my foream for biopsy, then off they went.
19:00: so tired laid on bed with all intention of watching a film but just couldn't keep my eyes open so just laid there trying to get to the latest point I could before taking my paracetemol, as I would not be allowed any more until 03:00 in the morning. Problem is I don't make decisions about my own body temperature and rigurs which came at about 20:00 with a 39.9 temperature. I hold off till 21:00, then get my drugs and relax into fitful sleep for a bit.
Wake at 01:30 and the whole process starts again, tingles, rigurs and me trying to control them and eventually calling the nurse to get paracetemol. Temperature 40.1 but not allowed anymore paracetemol, giving piriton to try to calm the shakes down which works a bit, but I'm very happy when IV paracetemol turns up at 02:30. Then have to go through the heating up as it takes effect with my skin feeling like I'm in the midday sun and sweating. I go from having PJs, a hoody and a dressing gown with layers of sheets and blankets down to just PJ bottoms in about 10 minutes. Wake at 06:00 with headache and rigurs request morphine and paracetemol, temperature taken and it's 39.9, paracetemol having no effect on my internal body temperature. I get up to go to the toilet and have to use my drip stand as support to walk to the toilet as I'm so dizzy and my legs hurt. The drugs put me back to sleep for a bit.
At 09:00 I get up to have breakfast, which I force down although it makes me feel really sick. One of the nurses comes in to weigh me and I stand up, but I get so dizzy just standing that I immediately step back and slump into the armchair and put my head in hands, panting and say 'I can't even stand up'. The nurse replies 'was that weetabix or shredded wheat you had?', 'shredded wheat'. And she leaves. Most of the nurses are first class here but there a few duffers (nice but dim) that slip through the net somehow. I then start to feel really dizzy, and feel heart flutters and I'm unable to get my breath, feeling like I'm going to faint. I buzz the nurse and say 'I really really don't feel very well could you do something'. Within minutes I'm on the bed with an ECG and two doctors and two nurses. But by the time any results are obtained my stats look normal. I'm left to sleep.
Here it gets interesting. My lunch is brought at 12:15 and after about fifteen minutes of mustering up the energy to sit up, I sit up. But I'm so tired I can't physically hold my eyes open to eat it. I'm taking a mouthful, leaning back and chewing with my eyes closed and inbetween mouthfuls just forgetting what I'm doing. Then the dizziness starts again, and the heart flutters and the shortness of breath...I take deep breaths to try to calm me but I can catch my breath, and I start to feel really faint. I buzz the nurse and they come in to find my heartbeat is 130+ with a low oxygen absorption. I'm immediately put on an oxygen mask, and within minutes I have 4 doctors and three nurses taking bloods, doing obs. Then I'm given a drug via an atomiser, I ask the greek doctor here what the drug is for and he says 'this drug is kepfatackalineaseetyjusssa for the lungs'. He is lovely this fellow but I rarely understand what he says, but I take comfort in that he generally makes me repeat things I've said at least 3 times. We get there in the end. But I don't know what this drug was doing, but it was for the lungs. I'm then put back on oxygen, all the while different drugs such as steroids and goodness knows what else were being given and I was barely aware, I could hear people asking me questions at times but I could not be bothered to open my eyes, then the next thing I know the room is empty, it's around 15:00 and someone comes in to tell me I'm going down to have my line out as it could be the source of an infection (if that is the problem) given that one side of the line had become blocked. I get up to go to the toilet and nearly fall straight over, a male nurse runs in and puts me back on the bed and tells me off for getting up. Then I'm wheeled down to vascular access where the line is removed, and due to a lack of anaesthetic resulting in a short, sharp zing of head clearing pain, half an hour later I'm sat up on the bed chatting to the nurse who I barely spoke a word to on the way down.
I then had an evening feeling fine, made some calls etc. Didn't sleep until 2am as I was having intense, completely absorbing 3D visions as I was relaxing in bed which went on for hours. To not watch them took effort, so, knowing this was probably the effects of the strong steroid I just went with them and they were amazing. It was like watching a completely bizarre but continous film, where I was simply an observer, the camera was constantly moving, along a kerb, up some stairs into a room where a scene would play out and then it would move on to some abstract of a wall of heads screaming with showers of hands falling into their mouths and pushing the heads out of the wall (I kid you not). It was great. But it was a night without paracetemol, or morphine or rigurs or sweats. And today has continued almost the same: I needed some paracetemol at 10:00 as my temperature had gone up to 38.6 and I wanted to go outside with Jo so I was given that to make sure I didn't go into uncontrollable rigurs at some distant point from the ward. But that has been it. I was given the steroid again at 09:00 and this will continue now for a bit as it will help with my rash too. Yes I went outside for the first time in 17 days, and it was sunny and beautiful, just like my wife who accompanied me. And I had a Magnum on a bench and it was good.
And my neutrophils have gone from strength to strength: 2.11 today! Once the temperature and rash seem under control I can go, the consultant thinks another week, I think Monday.
Sorry that was so long, I've just read through it.
No comments:
Post a Comment