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Diary, Ladan

Call for Prayers

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Firstly, there is nothing wrong that impels me to write this.

Thursday 10th April, please may I request that all our friends, indeed anybody who is willing to, says special prayers for Ladan, or thinks positively for her if they are not the praying kind.

This is more by way of experiment then necessity, Ladan has been very stable for the last few months and, as usual, has her very bright days as well as her tired days. I have noticed that, on a couple of occasions, the brighter days have coincided with several people claiming to have had Ladan in their prayers. While we are waiting to hear the doctors views on the use of another medication which, in a very small number of similar cases, has had amazing results I thought it might be nice to focus prayers on Ladan for one day with close to the same kind of intensity that she was receiving them when she first had her stroke. Those who are familiar with Ladan’s case will know that Ladan was showing good signs of consciousness until an incident in hospital, one and a half months later, knocked Ladan into an even lower state of consciousness.

If an experiment isn’t reason enough for you, then 10th April is also our fourth wedding anniversary.

On two recent occasions, the first being Ladan’s birthday on 10th February, I have been able to take Ladan back to the ground floor flat I sleep in near to the nursing home. The flat is full of items that were Ladan’s before we married and therefore hopefully a mini treasure trove of memories. Furthermore it is a quiet and comfortable place to spend time, which is also great for me. The second occasion was on the visit of a friend from the south, it seemed a much more natural place for Ladan to be receiving a guest. I am hoping that the next occasion will be this Thursday afternoon. There are several things that can happen on the day which may prevent this from happening, but that is the hope.

I have uploaded a few video clips from our wedding to my Facebook page, I will upload them elsewhere soon for those who are not on Facebook. I also hope to put up a short video in the next couple of days showing a few shots of where Ladan currently is and the flat in Heaton.

Thank you in advance for your participation on Thursday, there is no particular time and no particular prayer, just as much as you feel able and willing to offer on that day will be most appreciated.

Diary, Ladan

Another hospital stay

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From 17th – 24th December Ladan was in hospital again. To clarify, Ladan is usually in a nursing home with 24 hour cover by nurses qualified to a critical care level, general practitioners are on-call and usually visit within a few hours if a call is important. On this occasion, as on October 17th, Ladan was too unwell to be cared for in the nursing home and was admitted to hospital. The primary problem was again thought to be an asthma attack, possibly aggravated by a chest infection, another potential causal factor was also identified on x-rays.

For this stay we remained on Ward 43 of the Royal Victoria Infirmary in Newcastle, this ward is an extension of the admission ward and we only remained there due to a shortage of available beds on the main chest ward. The staff were friendly and Ladan was well looked after, she did not develop any of the skin problems that resulted from her last stay in the hospital. As usual, Ladan’s mother and myself made sure that one of us was with Ladan all day and all night.

Ladan’s condition was not quite as serious this time as it was on October 17th, though at times she seemed to be really struggling to breathe, which is of course very difficult to witness. On this occasion it also took a bit longer for her to show significant improvement, probably because Ladan was treated with regular oral medications rather than intravenous medications (which go directly into the blood stream). Nonetheless, she did improve and by the end of the stay we were just waiting a couple of days for a doctor to say it was okay to go. Officially Ladan has to be transported by paramedic ambulance and all ambulances were refusing to do non-emergency transport for patients on Christmas Eve, so it was only through the kind efforts of the staff on the ward that we were able to get back to the nursing home, it would probably heave been a few more days otherwise.

Ladan wasn’t particularly settled when we left hospital, she was still wheezing quite a bit, but as soon as she was back in her own room and had enjoyed a proper shower she was looking and sounding much better, and right now she is seeming back to normal again.

Diary, Humour

Contents may be hot!

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Last Tuesday morning I awoke to the sensation of slightly itchy legs, itching in an almost tingling and non-stop fashion. I kicked my hot water bottle from between my legs and tried to get a few minutes of extra sleep before getting up and facing the cold air that awaited me on the other side of my duvet. This was the second night I had used a hot water bottle this year, the previous night I had filled it from the hot tap and it had still been warm in the morning, on this occasion I had part-filled it from the kettle and it had retained a good amount of warmth in the four hours I had been asleep. My attempt to fall asleep again was being hindered by the tingling in my legs and so I decided to get up, I kicked the duvet in much the same direction as I had kicked the blue hot water bottle a few moments earlier and threw my tingling legs over the edge of the bed. My legs in full view, I could now see the cause of the tingling, a large area of each leg had been scalded by the hot water bottle. I would have been shocked that I had failed to wake up as my legs cooked but for the fact that this had happened to me once before. On the previous occasion I had awoken in my flat in Harrow with my pyjama top stuck to my chest, when the scalding calmed down I was left with a small heart shaped scar on my chest for about a year, a fact that I found amusingly appropriate because I had recently had some very severe chest pains which had been diagnosed as pericarditis, which is a scarring of the lining of the heart.

On this occasion the burning wasn’t quite so severe, I had nothing stuck to my skin, just three large areas of redness and blisters, I poured cold water over them for a while, but nowhere near as long as I should have done (which I wasn’t aware is about 15 minutes), partly because the cold water was freezing my feet. On advise of the Boots family health guide I then applied some large Melonin dressings, with bandages, to each leg to help keep the wounds covered and clean. I have been most impressed with how, just keeping the burns covered over, they healed without itching very much. There are still a couple of irritating marks and blisters left but for the most part the legs are looking normal again. I have Ladan to thank for the health guide and first aid kit that got me on the right path so quickly.

I haven’t used the hot water bottle again since then yet, but with the cold weather we’ve been having up in Newcastle over night, I will have to place my trust in it again soon… without, I am sure, any assistance from the kettle.

Diary, Friends

26 hours in London

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About two months ago a very distinguished member of the world-wide Baha’i community passed away, he was the last surviving member of a unique collective of spiritual magnets called the Hands of the Cause of God. As soon as the UK’s national memorial service was announced I knew that I wanted to be there and kept an eye open for cheap flights and trains to get myself down to London for the event, it was also going to be a great opportunity to see friends whom I had not seen for years.

A cheap train got me into London at 18:10 on Saturday night, I had arranged to go for dinner at the home of Neil, Saghar and (their newborn baby) Edward Cully. Also present were Manijeh and Vince Afnan-Murray, Simon Batchelor, Ali Khosravi and Sarah O’Donovan. It was quite moving to see the two month old son of Saghar and Neil, it had been a long time since I saw a young baby from of a close friend. We chatted and entertained ourselves until about 3am (partly due to a misunderstanding over transport arrangements) and then I went back to Simon’s flat for the night with him and Ali. I was keen to go to the Guardian’s Resting Place the following morning, before the memorial meeting, it is the grave site of Shoghi Effendi, a central figure in the history of the Faith, and I always feel a crisper spiritual connection, a keener clarity of vision and an instantly elated spirit when I am there, it is my favourite place – in the UK at least – to pray and reflect on life. We decided that we would need to leave by 11am to make the journey, we made this decision just as we were heading to bed at 5am, so even then I knew it to be an optimistic plan.

Just before noon on Sunday, Simon and I joined the traffic in south London heading round to the north, it became increasingly apparent, as we tried various short cuts that saved us barely a few seconds here and there, that we were going to be a little pressed for time, if indeed we would have any. Not long after we had crossed the Thames we were making great time and while I would normally prefer to spend longer at the Guardian’s Resting Place, especially having not been there for so long, we did get a good half an hour there and I felt thoroughly lifted by the experience and quite refocussed on some aspects of my life. It was, as always, well worth the visit. Next challenge, getting to the memorial meeting in good time… again some early traffic was a little worrying but we soon got moving well and got to the meeting with another half hour to spare before the start of the programme.

I am going to blog about the actual programme separately.

The programme was a little longer than most of us had expected, it started at 3pm and ended just before 6pm, I had a plane to catch at 20:10 and had been advised to get to the airport for about 7pm, so that gave me an hour to say hello to old friends and get from Ealing to Heathrow. Nonetheless, as short as some of the chats were it was a delight to meet some old friends and, as I expect will be the done thing from now on, their young children too. Actually the weekend left me feeling quite paternal, not that such feelings are of much use at this moment in life. I’ve often felt it is easier to have a reason to leave early than to hang around and have long awkward goodbyes, but on this occasion the departure was that little bit too soon to be entirely polite about it, which was a shame, but I did have a wonderful time there, both from seeing everyone and from the programme itself.

A final credit is due to Simon’s SatNav for navigating a route through the back streets of west London to get us to Heathrow on time for my flight. There were a few events after that… take off was delayed by computer problems at air traffic control, when we landed at Newcastle airport the doors out of the arrivals hall into the airport were all locked (including the fire exit) and we had to wait another 15 minutes for somebody to come and unlock them, and then once let out into Newcastle Shahla, my mother-in-law who was kindly meeting me at the airport, had broken down in the car park and a man who worked at the airport was trying to get her car working again! Of course, I was soon back by Ladan’s side, and extremely happy for having had such a great weekend trip.

Diary

“Oh… that looks serious”

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As my avid reader (me) will know from this post, our car was damaged in a car accident last month. The insurance company told me that it is considered a write-off so my father offered me his car as he is no longer driving it. Last Wednesday afternoon I flew down to my old home-town of Crawley in West Sussex to pick up the car and spend some time with my Dad. The car seemed to be making a slight knocking sound, it may have just been the sound the car always made but I felt safer having it checked out before driving 336 miles back up north in the vehicle. The following morning we took the car to one of my Dad’s friends who works at a garage.

Dad’s friend confirmed that the noise did not seem too serious but he had a good listen around in an attempt to figure out where the noise was coming from. His guess was that the alternator bearings were knocking, the worse case scenario would be that the car would lose power somewhere and require a new alternator (cost approx. 100 pounds) to get going again. He could not be sure without spending more time with the car and I wanted to get back to Newcastle that evening, but he said that if it was his car he would drive it, the car had been doing very little for a couple of weeks and might just need a good run.

A little later that day I set off in my new 1998 Vauxhall Vectra, 1.8 litre, in black. It drove wonderfully well. I took a while to get used to the gear changes… well… I’m still not quite there… but the extra 0.5 litres was making a clear difference to the acceleration compared to our VW Golf, which I have always been more than happy with. The Golf was Ladan’s before wee got married, the Vectra will have to do well for a significant length of time before it can gain the same sentimental value as that Golf, but it was certainly proving itself a worthy friend on this journey.

I had chosen the A1 for this drive, over the M1, I always regret making that choice. It is probably 30-50 miles shorter but it takes at least as many minutes longer. The A1’s roundabouts and lorrys overtaking lorrys at slow speeds mean that even with long stretches of roadworks on the M1 the motorway tends to be the better choice. I will hopefully remember this next time.

So, eventually, I arrived at the nursing home in my smart black Vectra, spent the next seven hours with Ladan, and drove back to the flat in the early hours, still hearing that slight knock but pleased that 336 miles of driving had not caused it to develop into anything more serious.

Last Friday morning, after getting to the nursing home fairly early, I took the car to collect some parcels that were waiting for me at the post office, just 1.5 miles away. On my return from the post office my new Vectra started knocking more loudly and then the power went from under my feet. It was exactly as I had expected it to be with the alternator going, a loss of power that merely allowed me to pull over to the side of the road before coming to a complete halt. I tried starting the engine, but it was dead. There appeared to be a little smoke coming from the engine, but I concluded it was some hot oil buring off. I called the RAC to come and get me going again, they thought it was probably steam rising from the car but advised me to phone the fire brigade if it became more smoke-like.

After about half an hour the orange van appeared and I popped the car bonnet for him. As he lifted the bonnet his first words were “Oh… that looks serious”. This wasn’t exactly what I was expecting. I mentioned the alternator bearings and he had a good look around. “Something seems to have come away from under the engine”, he informed me. The car would have to be towed to a garage.

On closer inspection it was determined that the water pump had probably collapsed. Such was the nature of the damage caused by this that a new timing belt kit would need to be installed, as well as a new water pump, at a cost of about 300 pounds before they would be able to determine if any of the valves had been bent, and if they had it would cost almost another 500 pounds to fix the car from that point. So, I was looking at a bill of between 300 and 800 pounds, and later that day the call came and the final repair bill was going to be 780 pounds. Initially the fear was over whether any of the engine valves had been bent, in actual fact all 16 of them were bent and the head gasket needed replacing. Obviously the final cost of the work comes close to the overall value of the car but it has only done 50,000 miles and I would have been landed with a 300 pound bill for nothing had I not had the rest of the work done.

Diary, Friends, Ladan

Reassurances

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This is just a quick note to say that…

  • Ladan is much more stable and is hopefully over her infection
  • The friend that I reported to be in intensive care a few weeks ago is now at home
  • My own car crash did me no harm and I have an offer of a replacement car

It has been a very crazy three or four weeks and I am still feeling a little bowled over by it all, but it looks like we are all well.

Diary, Ladan

As if there wasn’t enough drama…

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As many readers will know, my wife Ladan – who is in a minimally conscious state – became seriously ill on the night of 17th October (Wednesday) and I was also shocked the following morning by the news that a very good friend was in a serious car accident at much the same time that Ladan became unwell. I was contacting Diana (his wife) and other people to find out what was going on. I soon became reassured that my friend was doing well and that his manager, Bryan, seemed to be doing a sterling job of looking after his needs. But it was reported to be a very serious accident

A few days into our hospital stay I also had a little car crash of my own, I was driving up toward a junction on an A road where the oncoming traffic can turn across the main carriageway onto a central motorway when the road is clear or the traffic lights display a green arrow. The lights were green for me and I saw a car pull up to the lights in the lane for turning across me ahead. Having two sets of lights green in front of me and knowing I had right of way I proceeded at about 50mph toward the junction but as I reached it I saw that the other car started turning into the road. I have previously seen the results of other accidents at this junction and they have not looked good. Not only was I about to hit a car at 50mph but there were also a bollard and a lamp-post to the side of the road that I have seen other cars damaged by. I have also had a similar accident, many years ago, at 40mph and then I was knocked unconscious for a while, suffered temporary amnesia, and was in a lot of pain for about 5 months. “DON’T DO THAT!!!”, I shouted at the top of my voice as I slammed on the breaks unsure that I was going to see another thing in my life, feeling it ironic that my friend had just had a car accident a few days earlier. If you have never been in a car cash there is a strange sensation that you may be unaware of, and that is that time almost stands still for a few seconds. I swerved to try and get in front of the vehicle to avoid the passenger who was in my initial line of travel, then realising that, in spite of having had some kind of impact, I could still steer the car I looked for the bollard and lamp post and aimed the car for the kerb such that I thought it would not hit either, but knowing that the kerb was unavoidable. Kerbs can throw a car over or send them into dangerous spins, sometimes into other traffic. One last deep breath. A terrible smell of smoke. The road was louder, but I was sitting, the wind had been knocked out of me but I was still okay in my car, conscious, half on the kerb, the right way up. The other driver admitted it was his fault and seemed thankful that I had managed to manoeuvre such that everyone was okay. The other driver was planning to drive back to Cambridge following the crash so I hope there was no serious damage to his car. It was a very close call, the car is almost certainly a write-off, even though it drives, the side is dented from wheel-arch to wheel arch and the door is bent out of place at the top, but with everything that was going on the last two weeks I haven’t taken it to the garage yet. Ordinarily this would have been a frightening event in itself, but under the circumstances I just drove back to the hospital where I spent the rest of the night by Ladan’s side, which I enjoyed doing on the occasions I did it in the hospital, I would pray and just enjoy being quietly together through the night. A few hours of near-normality!

Diary, Ladan

The last two weeks and Ladan

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People in minimally conscious states are said to be prone to certain things, top of the list come chest infections and pressure sores, both because of a general lack of movement. Ladan has had a few suspected chest infections over the last few years but nothing major, just requiring a basic course of a regular anti-biotic and her skin has always remained in reasonably good condition, which is a credit to the nurses and carers who have been involved in her care.

On the evening of 17th October Ladan started breathing quite rapidly. In the early hours of the morning the breathing seemed to have calmed down but when I came back some hours later Ladan was being attended to by two nurses trying to help her with chest problems. The doctor was called out and she recommended that Ladan get to hospital fairly quickly. Before noon that Thursday we were in hospital.

In hospital things moved slowly. It was may hours before a doctor came to see Ladan, they decided to prescribe some anti-biotics. Ladan’s condition worsened throughout the day and she really seemed to be struggling for breath as time went on. As I have mentioned before, my presence and support for Ladan have often helped her be more settled and so I was diving in and placing myself right before her eyes, giving her lots of love and encouragement… this was incredibly traumatic for me. Only once before, in the very early days of this stage of Ladan’s life, have I seen ladan looking so terribly uncomfortable and struggling, it is a very difficult thing to witness, there was a sparkle in her eyes when I was in front of her, I knew that she knew that she could handle this, but that didn’t make it much easier to behold and inside I was yearning for the doctors to get some treatment started and to start relieving the problem for her.

Eventually we were transferred to a ward where they had no idea what Ladan’s situation was or what she required in terms of facilities or care. This initially caused an upset between the staff which is not the best welcome you can have to a ward. The nurse on duty was telling me that he was not sure he could provide Ladan with the care she needed as he also had a lot of other patients to look after. Ladan was getting worse at this point and the doctors were called to have a look at her again. Ladan got onto a more direct treatment. Because Ladan was very ill there was a lot of consultation about possibly going to intensive care. The consultation was not just about why we might need to go to intensive care, but also about whether or not we should go to intensive care. Many medical staff were apparently unhappy that a minimally conscious person should be entitled to intensive care, and the debate over whether we as a family wanted Ladan to receive any treatment, if required, was had several times in the first 24 hours of our stay. The following morning Ladan’s assigned consultant in the hospital, who has an excellent reputation for dealing with respiratory disorders and is also the head o f the Intensive Care Unit, modified the treatment regime and confirmed that, on this occasion at least, intensive care would be available for Ladan if she required it.

With the help of Ladan’s Mum, Shahla, we were able to be with Ladan 24 hours a day for the duration of Ladan’s stay in hospital, ensuring that Ladan was as comfortable as possible under the circumstances. Unfortunately the staff on the ward were very busy and the setting meant that it was not possible to always provide Ladan with some of the care she would normally receive. I got hooked up to some basic Internet access through the hospital’s Patientline service, which worked less well than a basic mobile phone would with the Internet, but it gave me some facilities (not including blogging).

Ladan became increasingly stable. She was very chesty all the time we were in hospital and there were good times and bad times. The most traumatic period was not repeated but it never felt like it was that unlikely to happen again. Toward the end of last week Ladan’s consultant started predicting that we would be able to leave on Friday as the blood test results were encouraging. On Thursday Shahla and I repositioned Ladan in her bed in the evening and I felt that Ladan’s skin was not as good as usual. This plagued me for a while, as I was starting to wonder if Ladan might be chesty because of discomfort rather than infection. On Friday morning the consultant came in and suggested that Ladan could stay in hospital over the weekend so that they could see how she did without anti-biotics. Given that Ladan is currently in a nursing home with more intensive nursing care than the hospital were able to provide I asked if it would make any difference if we went back to the nursing home and the consultant put the wheels in motion for this to happen, we returned on Friday afternoon.

The first thing we wanted to do was get a proper shower for Ladan and wash her hair, on seeing the state of Ladan’s skin I was almost shocked to tears, I have never seen skin looking so sore, thankfully that is now very much on the mend.

Over the weekend Ladan remained very chesty, Sunday was a slightly better day and Monday was a very god day where she was looking much brighter and healthier. By comparison Ladan has been a bit out of it again today but her chest does not seem too bad. It is looking very promising that this bad spell is over now, but Ladan is still coughing up slightly creamy secretions from her chest, so there is an element of caution to our optimism. Even if there is a residual infection it should hopefully just require another course of basic anti-biotics to finish the job, rather than a hospital visit, so long as it is recognised soon enough.

In the midst of this I had yet more drama of my own, though luckily not serious, in the form of a car crash, which can be read about here.

Diary, Ladan

Ladan has gone into Hospital

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These are two quick updates because I have access to the Internet for a moment, I am in hospital most of the day where Internet access is minimal, I will write fuller updates when things are more normal with Ladan, meanwhile some updates can be found on Facebook if you are a friend of mine on there.

On Wednesday 17th October, in the evening, Ladan started breathing quite rapidly. Though she seemed a little more settled in the early hours of the morning she became worse on Thursday morning and was sent to hospital. In hospital Ladan continued to worsen for the next 20 – 24 hours before starting to settle. Heavy anti-bitoics and steroids seem to have her nearly back on track. It is not clear what the cause of the problem was. Ladan is still rather more chesty than usual but other than that seems fairly stable and may be discharged from hospital, back to the nursing home tomorrow.

At much the same time that Ladan became unwell a very good friend had, according to an email I received the following morning from his wife, a very serious car accident. I was told that a vehicle overtook a lorry without realising that he was coming the other way, the driver at fault died, my friend rolled down a bank or hill and needed to be cut out by the fire brigade and was brought to life by the paramedics, they had thought that he would not live. He was taken to intensive care where at some point on Thursday his breathing and pulse improved and he is reported to be making an unexpectedly good recovery.

Prayers, possitive thoughts etc. would be much appreciated both for my friend and for Ladan.

Comment, Diary, Ladan

Sleep more or awaken?

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In the coming week Ladan is likely to be given a medicine called Zolpidem. It is commonly used as a sleeping tablet but when, several years ago, somebody in a persistent coma-like state was given the drug to make them more restful they miraculously awoke and started speaking. Several hours later the drug had worn off and the patient was unconscious again. The tablet has since been tried with many people who have suffered some form of brain damage and in many cases the success has been repeated.

For people in a persistent vegetative state (long term coma with no signs of awareness or communication) or a minimally conscious state (long term coma with some signs of awareness but no reliable communication) the success rate of the medication in having some form of measurable benefit is approximately 10-15%. In less severe cases of brain damage the success rate climbs up to just over 50%. In all cases where there is success there is the possibility that continued use brings about gradual recovery from the underlying condition.

Zolpidem was in the news a lot last year for these unexpected results being experienced around the world, an article that appeared in The Guardian can be found here.

Zolpidem is not the only medication that has been found to bring recovery to people in long term coma-like states. A drug called levodopa, which is generally used for treatment of parlinson’s disease has been found to have a much more dramatic and long lasting effect on people in these conditions and this has been known about for a long time now.