Wednesday, August 20, 2014

Even more haematol0gy

Haematology outpatients this morning below, with last time's in brackets. Platelets are within the normal range for the first time for ages, other values much the same as four weeks ago, outside the normal range but tolerable. Dr G acknowledged that deciding the hydroxycaranide dose was pure guesswork so it was left at six times a week.

Monday, August 11, 2014

Optician, amd knee

Cataract and macular degeneration in both eyes diagnosed by optician today. Cataract in right eye can be dealt with surgically, she thinks, and is writing to the GP to refer me to King's accordingly. Macular degeneration is incurable and gets worse with time, but maybe I will be able to see until July 2016

GP telephoned this evening to inform me about the scan of my right knee. The cartilage between the bones is nearly worn out, and physiotherapy is needed to strengthen local muscles. Waiting list for physiotherapy at King's is 18 weeks

Oh well, can't be helped, as JW says.

Friday, August 01, 2014

More haematology

Notes from start of hospital stay May 14 to June 4 with pneumomia includimg 16 days in ITU:

Pneumonia etc

May 14, 2014 we both woke early and were up by 06.30, to have a cup of tea before going to King’s at 07.45 for the blood test required before every haematology appointment. Then back home for two more cups of tea and the newspapers before the haematology outpatients appointment at 10.00 which as usual turned into 10.45. The consultant Dr Aldawi said the platelets were OK, but haemoglobin was only just above the level where a transfusion would be needed. He wasn’t concerned about the slightly raised temperature I had the previous evening and at 02.00 that morning, or that I had coughed up bloody phlegm. He listened to my chest and said he couldn’t hear anything. But finally he ordered an x-ray which showed that I had pneumonia in my right lung., and Dr A said he would arrange for me to be given intravenous antibiotics. He left the consulting room for half an hour, and on his return said I would be admitted to the day ward All the cubicles were occupied and there was a further wait but when I was finally admitted it was clear they were not going to let me go. Lindsasy went home, returning at 15.00 with  washbag,  slippers and dressing gown, plus a sandwich, fizzy water and a tangerine.
At 16.00 the saline drip was replaced by 1200 mg Augmentin drip. Dr A said my kidneys weren’t working properly, as indicated by a rise in the creatinin reading from 108 to 180 since the previous blood test, but at the time this didn’t trigger an investigation of the renal arteries.
At 18.00 a nurse told me I would be g oing to Elf & Libra, a new ward for haematology patients, when they had a bed space available. !9.45 SATs were 85 so I was given oxygen. But they remained obstinately at around 90 and the next morning a consultant from Intensive Care fitted me up with a more intensive flowof oxygen which increased the SATs to 96. I had an infusionof anti-nausea medication and also of Meropinem.
Friday May 23 I was prescribed Furosamide to reduce water on the lungs, but still there was no suspicion of the renal arteries.

After that in intensive care my writing deteriorated and I can't read it.

Funny that it didn't occur to anybody that fluid retention was a problem linked to the kidneys. After five days out of hospital I was in a bad way and Lindsay called an ambulance on the Monday morning. After ECGs and scans of liver, heart and kidneys it was found that my renal arteries were both blocked, and the following day I had angioplasties and stenting which dealt with the problem effectively. I lost 10 kg over the next three days as the kindneys started doing their job of getting rid of the fluid.

Blood test July 23 (normal range in brackets):

WBC 3.8 (4.5 – 10.0)
Hb     108 (130-180)
PLT n 470 (150-450)
Neutrophils 1.74 (2.0-7.5)

All values are outside the normal range, but the one the haematologists watch closely is platelets (PLT). I take hydroxycarbamide which reduces the platelets, but also the haemoglobin. The dose is varied after each consultation to balance the two values. While I was in hospital I had a blood transfusion (2 units) which did increase the Hb from its previous reading of 8.5.

Thursday, June 12, 2014

Visit from Saeed Shehabi and Jalal Fairooz this morning

June 12, Haematology

Yesterday, am outpatient consultation with Professor M, a week after being discharges from a 3-week stay in King's College Hospital with pneumonia, including 16 days in intensive care. As a result of the blood transfusions I had in intensive care, Hb was satisfactory at 10.5, but platelets were raised at 550. Hydroxycarbamide is reintroduced 5 times a week. Amlodipine is reduced from 2 to 1 x 5 mg because Professor M says it could have an effect on fluid retention, still a problem although GP doubled Furosamide last Monday. Its a bit of a juggling act, and I have another haematology appointment next Wednesday week.

Yesterday evening I watched the second of three Channel 4 programmes My Last Summer about a group of five terminally ill patients and their carers discussing how they felt about their impending deaths. So far they haven't touched on the subject of assisted dying though I'm hoping they will do so in the last of the series. Surely its the patient who should have the right to choose whether to have an assisted death when his or her suffering becomes unbearable, as Lord Falconer's Bill provides. It will have its Second Reading in July, and I intend to speak for it, as a potential beneficiary.The later stages on myelofibrosis are unpleasant, and I should have the right to avoid them at the small cost of a few weeks of low-quality life.

Friday, April 18, 2014

Front garden April 15

Angiogram commemtary

The grafts by Mr Desai from December 1995 were all in 'pristine condition, but one of them was connected to the remains of the heart artery by a length of the original artery that was all furred up and therefore not supplying blood to the heart. This was the probable cause of the angina, and it isn't susceptible to surgery. Stronger anti angina medication, Ranosaline, is added to the arsenal I'm already taking.

The procedure took two hours, partly because the faulty connection wasn't accessible via the groin, and the surgeon had to start again via the wrist.

Afterwards I was exhausted and slept the whole afternoon and evening apart from a break for dinner and a short bit of reading at bedtime when I finished Max Hastings' Catastrophe about the events leading up to the Great War and the fighting up to the end of 1914. He puts the blame for the war squarely on the Kaiser and Germany's top generals, and he sees no point at which other players could have acted to avoid it.

I put the light out at 22.00 and slept solidly through to 08.00 this morning, and very unusually for me.slept this afternoon from 15.00 to 16.00, when I wass woken up by the front doorbell.

We still have no internet connection via the router after nine days off the air, and as its Bank Holiday weekend nothing can happen until Tuesday. The current thinking of the Parliamentary IT hep desk is that the cable modem is only seeing one IP address, which explains why there is a connection to one computer with the router disconnected. If this is correct, a replacement cable modem should cure the problem, and one has been despatched by Virgin to arrive on Tuesday. In the meanwhile any urgent printing has to be done by saving to a USB memory stick and taking it to another machine which is connected to its own printer. Similarly any files needing to be scanned have to be saved to a USB memory stick and taken to the only ,achine that haqs internet connection when it needs to be emailed. The only consolation is that there isn't a huge amount of traffic over the Bank Holiday weekend,

Angiogram April 17