Peaceful Friday

Slightly recovered my sleep patterns by having a nap for about two hours in the morning.

This evening I had a whole bath, not just a pretendy wipe down. The careers would no doubt have been horrified if they had seen me get out of the bath by myself with the usual technique of grabbing the bar with my left hand and levering myself up to the rim of the bath and sliding over to the board. I felt totally clean for the first time in weeks.

Tomorrow is the big day when Bhante circumnavigated the M25 and comes off of the Orpington turn, meeting Lyulph at the renovated graveyard and then coming on for a visit at Flodden Road.

Yesterday in King's

Most of the day at King’s from 10.00 to 16.00. The transport department had been asked to provide oxygen but tried to pretend he had said it wasn’t needed.

Kidney function bad, deteriorated a little but not to the extent that it required action. Haematologist had not seen the complete blood results but enough to tell us there had been further deterioration over the 5 days since our last visit. “Leukaemia is taking off”, she said. She made arrangements for me to have a blood transfusion next Tuesday. I only had a magnesium infusion through the wonderful PICC line which allows most transfers of fluids to be made via a semi-permanent line in the arm. The only medication suggested was hydroxycarbomide, but that was of doubtful benefit, so we agreed not to bother with it.

First half of last night went well, but after midnight, Stripey the cat kept jumping up on the bed and trying to sleep on my feet which is fine in the daytime but not at night. As he makes a habit of it, I need to find a solution that allows me to have a peaceful sleep without cats jumping up and down on my feet. The whole point of getting out of hospital was to have a peaceful sick room environment, and after midnight, this is not it!

Discharge Summary:

Lord Avebury, an 87 year old gentleman with known myeloproliferative disorder,  presented with deteriorating renal function. Prior to admission he had suffered from nausea and vomiting for 2 weeks and diarrhoea for 7 days. Creatinine was 293 on admission from a baseline of -110 in December and he was clinically dehydrated. During the admission his renal function improved (creatinine) and he was clinically well.

Lord Avebury has previously required bilateral renal artery stenting for stenosis. Repeat renal artery Dopplers demonstrated in-stent re-stenosis (severe on the right, moderate on the left). His case was extensively discussed during the radiology MDM and it was decided that repeat angioplasty and stenting would give long-term benefit. The improvement of his renal function allowed this procedure to be organised as an elective case and was therefore not possible to be completed during this admission. It will therefore be re-scheduled as a routine outpatient procedure.

During his admission he required multiple transfusions of platelets and blood for his transfusion dependent myeloproliferative disease. Hb was 83 and platelet count 22 at discharge. Regular transfusion will continue to be required after discharge and this will be arranged under the care of the haematology team. To support the provision of blood products a PICC line has been inserted.

Sat 30 Jan 2016

Acute Myeloid Leukaemia

This is my discharge notice from King's College Hospital on January 29:

Lord Avebury was admitted as an emergency on 19th January 2016. Following outpatient blood tests which showed an acutely raised creatinine of 250, he was admitted for IV fluids which resulted in the sum improvement in his renal function. He was due to have an outpatient renal artery angiogram +/- stent on 21st January to treat the underlying cause of the acute kidney injury, so this was performed as an inpatient. Due to his low platelet count, (due to the underlying diagnosis of myeloproliferative disorder) and deranged clotting results Lord Avebury was given platelet transfusions and Fresh Frozen Plasma to minimise the risk of bleeding during or post the procedure. Following this, Lord Avebury suffered from chest tightness, shortness of breath and his oxygen saturations deteriorated. He also spiked a temperature. He was treated for sepsis with IV Meropenem and for fluid overload with diuretics. ITU outreach team reviewed him regularly. Lord Avebury had a very high troponin during the above events and though this was thought at first to be secondary to an acute myocardial infarction, it is more likely to be related to acute heart strain post-stenting of the renal arteries and fluid overload. An echocardiogram showed no new regional wall motion abnormalities, moderate tricuspid and normal left ventricular systolic function. Lord Avebury also had some haemoptysis so the clopidogrel was discontinued (aspirin continued due to the new indwelling stents) and a course of vitamin K was given to correct his clotting. His haemoptysis settled. His oxygen requirements were gradually weaned from Optiflow. However, he still required some oxygen to maintain saturations above 94% (he had no evidence of CO2 retention during admission). As he was still spiking temperatures, antibiotics Clarithromycin and Teicoplanin were added in. Blood films taken during admission were suggestive that the myeloproliferative disorder has transformed to acute myeloid Leukaemia. This will be managed supportively. As Lord Avebury was clinically stable, he was discharged from Davidson ward. He is already known to St Christopher’s Hospice who will kindly review his needs in the community. He will be seen regularly in HOP for blood transfusions as required.

Main diagnosis: acute kidney injury, transfusion associated cardiac overload, sepsis (likely chest source) transformation of myelofibrosis to acute myeloid leukaemia.

_______________________________________________________________________________

Good News

Eric is coming home tomorrow, Friday.

Back in hospital again

Eric was readnitted to King's College Hospital on Tuesday 19 January. Two days later Mr Wilkins performed an angioplasty on both renal arteries, as he did most successfully two years ago.   This time, various problems arose post-op. Eric appeared to have had a reaction to the units of blood he was given.  Also, his body, particularly his chest, became overloaded with fluids.  He developed an infection.  All these symtoms are being treated and Eric is beginning to recover, albeit slowly. However, as background to this, Eric's myelofibrosis is now starting to develop into leukaemia.

The family are  having talks with the palliative care team ar KCH to arrange for Eric to come home soon and be treated at home.  Lindsay.

Hospittal Discharge Notification

Reason for admission

Patient admitted with deterioration in renal function. Known myoloproliferative disorder, requiring platelet and blood transfusions. Previous bilateral renal artery stenting. with rehydratng. Found to be dehydrated following period of loose stool and renal function improved with  rehydration. (creatinine 300 < 14 and downtrending at discharge). Repeat renal artery dopplers demonstrated in-stent re-stenosis severe on left side, moderate on left) and after disccussion in  our rediology MDM, it was decided that repeat angioplasty/stenting would be beneficial in the long term. This was scheduled as a non-acute procedure due to recovering renal functiion - unfortunately it was not possible to perform this as an in-patient, and it will be re-rescheduled in a routine out-patient setting. His discharge Hb was 83. We have inserted a PICC line to facilitate future blood product infusion. He will be followed up by the haematology doctors next week (date to be confirmed) and we will see him in renal outpatients on the 28th January.

Note: I have an appointment scheduled with Professor H at Guy's on Monday Jan 18 at 14.45., and     we also have Dyno-Rod coming in the morning -similar problem.

Home, surprisingly

Eric unexpectedly sent home today.  Renal doctors decided that Eric's kidney function had improved greatly, due to rehydration and two units of blood.  We are all delighted to have him home, particularly Stripey the cat who won't leave his side. The doctors say they will carry out the procedure to clear his renal arteries on another date, possibly when things quieten down - they seemed to be dealing with a large number of emergency procedures this week.  Lindsay

Still waiting

We had hoped that the procedure to clear Eric's renal arteries would have taken place today, but this was not to be,  Tomorrow, Friday is the day.  This is to be carried out by Mr Wilkins, who by now is very familiar with Eric's arteries.  We hope that Eric will be allowed home on Sunday.  Hooray! Lindsay

No Re-stenting today.

Correction to Monday's blog:  it was not a Hickman Line, but a PICC line (periphally inserted central catheter) which was yesterday put into Eric’s arm.  Roughly the same function as the Hickmann, but in the arm, rather than the chest.   Eric was taken down to Radiology dept today, in preparation for his re-stenting, but brought back again as an emergency case came in ahead of him.  They will try to book him in again tomorrow, or possibly Thursday..  Eric was cheerful, without a fever, and ate some dinner this evening.

Junior doctors and their supporters were demonstrating outside King’s today.  Best of luck to them. Lindsay

Another day at King's

Eric still in King's.  He continues to be treated for an infection but is better than yesterday with little or no temperature, The doctors plan to do an angioplasty, probably on both renal arteries, in a day or so.  One is nearly blocked and another going that way.  They don't expect any problems.  It's discouraging that the renal arteries became blocked again after only two years.   Eric had a Hickman line put in his arm, enabling the easier delivery of blood and other fluids in hospital and at home..  Lindsay

Bloods after yesterday evening's transfusion

Hb improved from 70-85, creatinine reduced from 174-164, platelets 22, not improving, but doctors say further transfusion not needed. I was hoping to spend a few hours at home but I have a slight fever so they decided to not let me out, but hopefully they will soon.

THURSDAY 07 JANUARY 2015

After being unwell for several days at home, yesterday Eric was admitted to a King's College Hospital renal ward.  It appears that one of his renal arteries has narrowed and that he may be needing another renal angioplasty to open it up and restore a good blood flow to his kidneys.  The platelets in his blood are also very low and should be restored before this procedure, which may take place tomorrow.  We hope that he may only be in hospital for a few days.   Lindsay Avebury

Blood tests

Blood tests: last 8 results
	29	24	20	16	9	7	25	18
	Dec	Dec	Dec	Dec	Dec	Dec	Nov	Nov		Normal
Hb	80	87	82	103	108	79	86	87		130-180
WBC	1.81	2.07	1.51	2.16	1.6	1.3	1.47	1.76		4.5-10.0
N'phils	0.8	0.99	0.47	0.56	0.47	0.44	0.48	0.46		2.0-7
Plt	47	54	50	60	95	107	187	221		150-450

These results were before a blood transfusion

And these were after

	29	29	24	20	16	9	7	25
	Dec	Dec	Dec	Dec	Dec	Dec	Dec	Nov		Normal
Hb	86	80	87	82	103	108	79	86		130-180
WBC	2.46	1.81	2.07	1.51	2.16	1.6	1.3	1.47		4.5-10.0
N'phils	1.24	0.8	0.99	0.47	0.56	0.47	0.44	0.48		2.0-7
Plt	35	47	54	50	60	95	107	187		150-450

Bloods December 20

Blood tests: last 8 results
	20	16	9	7	25	18	21	5
	Dec	Dec	Dec	Dec	Nov	Nov	Oct	Oct		Normal
Hb	82	103	108	79	86	87	107	95		130-180
WBC	1.51	2.16	1.6	1.3	1.47	1.76	1.8	1.95		4.5-10.0
N'phils	0.47	0.56	0.47	0.44	0.48	0.46	0.57	0.87		2.0-7
Plt	50	60	95	107	187	221	202	225		150-450

Creatinine 172, still way above normal range 45-120, and sharp falls in Hb, WBC, N'phils and Plt.

Lets hope tomorrow is better or it means two pouches of blood.

Bloods December 20

Blood tests: last 8 results
	20	16	9	7	25	18	21	5
	Dec	Dec	Dec	Dec	Nov	Nov	Oct	Oct		Normal
Hb	82	103	108	79	86	87	107	95		130-180
WBC	1.51	2.16	1.6	1.3	1.47	1.76	1.8	1.95		4.5-10.0
N'phils	0.47	0.56	0.47	0.44	0.48	0.46	0.57	0.87		2.0-7
Plt	50	60	95	107	187	221	202	225		150-450

Creatinine 172, still well above normal range of 15-120. Abnormally high levels of creatinine warn of possible malfunction or failure of the kidneys. It is for this reason that standard blood tests routinely check the amount of creatinine in the blood.

Blood tests

Blood tests: last 8 results
	16	9	7	25	18	21	5	18
	Dec	Dec	Dec	Nov	Nov	Oct	Oct	Sep		Normal
Hb	103	108	79	86	87	107	95	106		130-180
WBC	2.16	1.6	1.3	1.47	1.76	1.8	1.95	2.53		4.5-10.0
N'phils	0.56	0.47	0.44	0.48	0.46	0.57	0.87	1.05		2.0-7
Plt	60	95	107	187	221	202	225	2.41		150-450

Nb Creatinin was 297 compared with normal range 45-120

indicating dehydration, so I'm drinking a lot & will have another

blood test tomorrow. Platelets continue to fall but neutrophils are 

above the level of 0.5 µmol/L described as 'severe neutropenia',

Plan B appears to consist of regular blood transfusions and no

medication to replace the hydroxycarbamide.

Haematologists have written to Professor H  the foremost expert

on myelofibrosis to see whether she has any ideas on treatment.

Latest bloods

Blood tests: last 8 results
	9	7	25	18	21	5	18	10
	Dec	Dec	Nov	Nov	Oct	Oct	Sep	Sep		Normal
Hb	108	79	86	87	107	95	106	81		130-180
WBC	1.6	1.3	1.47	1.76	1.8	1.95	2.53	2.39		4.5-10.0
N'phils	0.47	0.44	0.48	0.46	0.57	0.87	1.05	1.02		2.0-7
Plt	95	107	187	221	202	225	2.41	2.41		150-450

Haematology outpatients this morning. There wasn't a Plan B, and obviously there was no suggestion of going back onto hydroxycarbamide. The stopgap plan is to have weekly blood tests, with transfusions if the Hb plummets, as it may well do. The neutropenia doesn't seem to have been affected by stopping the hydroxycarbamide, and the doctor, when asked, didn't have any ideas on medication that would increase the level of neutrophils.

There was a suggestion by one of the haematologists who saw me during my 5 days in hospital that myelofibrosis could be transitioning to leukemia, and I had expected this to be confirmed or otherwise by the blood tests. However it wasn't mentioned in my discharge notes, so the evidence is presumably inconclusive.

Five days in hospital

Last Thursday I woke up with a fever and severe vomiting and was taken to KCH A&E by ambulance. The infection was later identified as coagulase negative staphylococcus. Anti-emetic stopped the vomiting and a broad spectrum antibiotic dealt with the infection. I had two pouches of blood to deal with neutropenia, see below, and was discharged at 23.00 yesterday evening.

There had been some discussion of a bone marrow biopsy to get a better picture of the number of blasts and fibres in the blood, but in the end the haematologists decided against that course of action because of the risks, and because an extra blood test taken December 10 would be likely to give the information necessary for Plan B to replace hydroxycarbamide. Since that medication had been stopped altogether, there hadn't been a rise in the platelets, the original reason for that drug to be prescribed. On the contrary, Plt fell sharply, and other components also went down. Anyway, I've got a regular haematology outpatients tomorrow morning, so it will be a good opportunity to see whether there is a standard answer to the question of how to deal with the appearance of blasts and fibre.

After first thinking that a bone marrow biopsy would be a good idea, the haematogists have had second thoughts because of the risks attached to the procedure. I'm certainly not sorry its unnecessary because its quite painful, though I didn't say so when it was done for the diagnosis in 2011:

THURSDAY, JULY 21, 2011

Last days of term

.....
Tuesday morning I was at King's, to have a bone marrow biopsy to help diagnose the myeloproliferative disorder they think I've got. Its a disorder of the blood, the indicator of which was a platelet count which shot up to over 1,000 compared with the normal 500. After a local anaesthetic a needle is stuck into the pelvis on the right side, leaving no apparent side effects apart from bruising.

,,,,,

Blood tests: last 8 results 10 25 18 21 5 18 10 3 Dec Nov Nov Oct Oct Sep Sep Jul Normal Hb 79 86 87 107 95 106 81 104 130-180 WBC 1.3 1.47 1.76 1.8 1.95 2.53 2.39 2.85 4.5-10.0 N'phils 0.44 0.48 0.46 0.57 0.87 1.05 1.02 1.16 2.0-7 Plt 107 187 221 202 225 2.41 2.41 249 150-450

Well done Mark Zuckerberg

Mark Zuckerberg says that his $45 billion gift to a new charitable foundation [http://bbc.in/1lvqSqo] will be used to promote equality. UK income inequality is among the highest in the developed world and evidence shows that this is bad for almost everyone, see  https://www.equalitytrust.org.uk/. It would be good if our philanthropists would follow the example of donors in the US and do more to combat inequality, but it should also be an explicit goal of our Government's policy

Eritrea-Ethiopia Boundary Commission (EEBC)

This illustrates the reason why the problem of the Eritrea-Ethiopia boundary remains unsolved. The parties agreed beforehand that they would accept the decisions of the Boundary Commission, but Ethiopia reneged on the decision by the EEBC to demarcate the boumdary by coordinates, and the international community including the UK let them off the hook by saying that "there should vbe a dialogue between them about the border". This would imply that after all, the EEBC's determination was not final and binding, and that it could still be adjusted to suit one of the parties.

The only way to break the deadlock and end the confrontation which sterilises a huge area along the border, keeping armies numbering tens of thousands on either side and preventing trade across the frontier, is for the UN Security Council to insist that Ethiopia stand by its undertaking to accept the  EEBC. The UK should be taking the lead on arriving at this solution.