Amy has written a note to herself that follows her New York Marathon run on Sunday. Thanks to all who supported her!
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!
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.
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.
A few weeks back Ladan started a two week course of a sleeping tablet called Zolpidem. I blogged about the fact that in a small but not insignificant number of cases Zolpidem has been found to awaken people from coma like states for the duration of its effect (around a few hours).
I have previously mentioned that there were no dramatic results from using the medication with Ladan, but that there may have been some small changes. A full update should follow in the next week or two, but this entry is to explain the delay in reporting how I feel the trial went, and to give some indication of what happened during the trial. In this blog entry I am not going to differentiate between what was observed by staff and what was observed by family members.
Zolpidem is a short acting drug, it usually starts acting within 15 to 30 minutes and stops working after a few hours. About 15 minutes after the drug was administered Ladan would typically go through a period of increased rapid eye movements for a period of around 10 – 30 seconds, with her eyes closed, and then seem generally sleepy. She remained arousable by movement or speech, but was not generally as agitated when aroused. Ladan often has quite normal reflexes which are superseded by extensive behaviour (stretching out her arms and legs) if she remains disturbed or uncomfortable for a “prolonged” period. That “prolonged” period may be a matter of seconds, but can often be avoided if you react to the non-extensive reaction and remove the stimulation, or otherwise relax Ladan, soon enough. During the course of the medication Ladan was found to be generally less extensive and her reflexes appeared to be slightly better refined. Ladan’s individual fingers were, for example, felt to react better as individual fingers when touched rather than as a collection of fingers reacting together. There were also times when people felt Ladan was more alert or aware than usual, and that her reactions to speech were more natural. Most of the the possible differences that were observed were not new, but were either more frequent or, as in the case of being more relaxed and less extensive, more prolonged.
One of the more notable facts about most of the observations referred to above is that these “differences” were being observed throughout the whole time period of the trial, that is to say they were not limited to the few hours during which the drug would typically have an impact, the “difference” was still being noticed at least 21 hours after the drug had been given. I have three possible explanations for this, firstly it is possible that some of the “differences” were seen because they were being looked for, secondly I theorize that some part of the mind was put to rest by the tablet and that this enabled better reactions when the resting effect wore off (this would require a medical opinion, which I hope to get soon), my third explanation is that I was personally present more of the time. I have previously mentioned in blog entries that there appears to be a direct link between how settled Ladan is and how much time I spend with her. Many previous times where Ladan has seemed to be more aware have also followed on from an increased presence from myself. As I was arriving to be with Ladan from an hour to an hour and a half earlier each day and not popping out as often it is likely that at least some of the improvement would be down to this, rather than the medication.
So, following the two week trial Ladan had a week of how things were previously, and now I am trying to spend extra time with Ladan for a week to see what effect that has. It has so far proved difficult to spend the extra time with Ladan, so to get a farier comparative picture this might stretch on a little beyond one week. Once I have a better idea of the difference between “Ladan with more James” and “Ladan with Zolpidem and more James” I will be writing up a report on the differences for the relevant medical staff to look at. There is a small possibility that they will feel the medication may be worth trying for a longer time period, but otherwise there are other things that have had significant results on people in conditions similar to Ladan’s which I hope to research further and, if appropriate, discuss with Ladan’s doctor.
Amy Sahba is the sister-in-law of the best man at our wedding and moved to New York several years ago to work with CNN. She is in training to run a marathon in which she hopes to raise $1,800 toward research into blood cancers such as leukemia, lymphona and myeloma.
This is cause very close to my heart and even closer to Ladan’s, with both her and her father having suffered from leukemia in their lifetimes. I have made a small donation myself but have little to give at this time in my life, so I am encouraging others to please support Amy, with however little or much you feel comfortable offering, in her marathon endeavour.
Simply click here to read Amy’s donation page and to make your offer. Many thanks!
At 9:30 this morning (British Summer Time) Ladan had her second dose of Zolpidem, this time she had the full recommended 10mg of the drug. It is now an hour and twenty minutes later and there are no uncommon observations. If anything the medication has made her more restful for a while and more reflexive when moved (this needs a fuller explanation on the different ways the body can respond to things, which I will provide another time soon).
In the 10-15% of people, in similar conditions to Ladan, who tried Zolpidem that reacted well to it, a positive reaction was usually seen after the first dose. There is at least one case where the first positive reaction was after more than a week of using the medication at 10mg/day, so hopefully we will continue for a couple of weeks to see if anything does eventually happen. There certainly don’t seem to be any negative side effects appearing from the medication.
Thank you so much to everyone who has been thinking of Ladan and praying for her through this. I really appreciate it very much indeed.
At 9:45 this morning Ladan had her first dose of Zolpidem (see last blog entry), it was a 5mg dose and the recommended dose for this use is 10mg, it is now just over an hour since that dose was given and there is no obvious effect from the drug.
The prescription written for Ladan says 5mg a day on it so now I will ask to get that changed so we can try the proper dose. The drug does not seem to have had a particularly sedative effect on Ladan either, which is its intended use in patients without impaired consciousness or brain injury.
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.
18th June marks the anniversary of the execution, for being followers of the Baha’i Faith, of ten women in Iran in 1983. Among the ten women was Ladan’s aunt, Shirin Dalvand, pictured above holding Ladan several years earlier in Shiraz.
Baha’is were persecuted and put to death in very large numbers, this is not the anniversary of a rare event. The occasion is noted for the fact that all the Baha’is executed on this occasion were women, many of them young, one of them only seventeen years old. Shirin herself was twenty-five at the time. Ladan had fond memories of her and Shirin displayed great affection toward her too. Shirin’s parents, her brother and two sisters, all live in Newcastle and the family remember Shirin, and the numerous other Baha’is who’s lives were taken because of their Faith, at this time.