making muscle wasting history

Hi, I am Neeru, Meshi’s (Mahesh ) sister, I’ve never written an article for this news letter so bear with me if I ramble on a bit!
I am writing Meshi’s story because if it helps one family then my job is done!
Naivety is a wonderful thing until reality strikes like an earth quake, I think that is the best way to describe our story.
Meshi is 26 years old and was diagnosed with Duchenne MD at the age of 7yrs. We have always tried to make his quality of life as good as possible, in terms of his day to day life style and ensuring that he has had the opportunity to go on holiday as often as possible.
He would, up until now, be described as part of the super group. Until February this year he had never had any major issues, apart from colds and flu infections treated with antibiotics. He was only ever admitted into hospital for an ankle op. Due to this, we sometimes ignored the fact that he has DMD, which in hindsight was quite naïve. Our attitude seemed to be that he appears quite healthy at the moment and we just expected him to get weaker before he had any major issues. The last time he went to hospital for a check-up was in 2006 before a holiday, just to make sure he was ok to travel.
During last year and the early past of this year he had a number of cold and chest infections that our GP had just given him a course of antibiotics for, sometimes he didn’t even have to visit the surgery, the prescription would just be repeated! This should have been a tell tale sign that he needed a referral to a hospital for a check-up. However, the infection appeared to clear so we carried on as normal. In February this year he seemed to be losing his appetite, complaining of stomach pains, getting headaches and having difficulty coughing, Meshi suggested that maybe he needed an x-ray, so we took him to our local hospital. He was seen very quickly, diagnosed with pneumonia and admitted that very day. Meshi just appeared to have a standard chest infection and was breathing quite normally on his own.
He was admitted to their respiratory ward, where the level of care and their understanding of his condition were minimal. Also for us it was a very difficult learning curve as our knowledge was fairly minimal as well. He was deteriorating every day, mainly because he felt he couldn’t breathe from his left side, the left lung always being the one affected first. His abdomen was also pushing upwards reducing his lung capacity. For the first few days he appeared to be just given antibiotics for the infection, but no attention was being paid to the fact that he felt breathless. The hospital just put it down to him being panicky. They actually made us believe the same, so we were just trying to calm him down. What we should have done was listened to the changes that Meshi was feeling and insisted the hospital do something about it. We should have insisted that he should be ventilated using CPAP.
He was finally put on a ventilator using an extremely large and uncomfortable facial mask. Seeing this upset me at the time, but what I should have realized was that this is exactly what he needs to open and close his lungs and keep his CO2 levels under control.
One of the doctors that he had been seeing insisted that because he had come into hospital breathing on his own, he should not become reliant on the ventilator. This lack of knowledge and understanding that a DMD patient requires ventilation at a particular stage was nearly very fatal for Mesh and one of the hardest things we had to deal with! Meshi found the mask really uncomfortable so the next evening one of the nurses switched the ventilator off and removed the mask. Meshi had not slept for days, so after panicking and insisting that he felt breathless; we thought he had finally fallen asleep. Myself and our brother in-law were staying the night with him and were relieved that he was finally getting some sleep. At 5am after a night of nagging doubt I tried to wake him up, but he seemed to be breathing yet was unconscious, this was the point at which the doctors finally paid him some attention. The fact that he was unable to reduce the Co2 levels had led to this; it took a few hours to revive him. Basically, ventilation through CPAP would I believe have prevented this. Our worst nightmare was unfolding, as we thought we had lost him. I believe he had been in this state for a number of hours before I tried to wake him. During the night two nurses had changed him and his bedding, but had failed to notice that anything was wrong, which is why I am truly thankful that we had insisted on staying with him over night!
After this incident he was moved to intensive care, where the doctor’s still insisted that he had come in breathing on his own so should not become reliant on the ventilator! They decided that he should be weaned off the ventilator, by putting him on a dry oxygen mask instead. Another error on their part as after a few days of this his saturation levels completely dropped and he had to be incubated, which the consultant had insisted that they were very reluctant to do. He was intubated and sedated for ten days in total.
We as a family seemed to be at a loss at this point, as to what the correct thing to do was, so we rifled through the stack of old mail and found one of the blue newsletter booklets for those that may have been through the same thing to get advice. I spoke to Christina that very day and it really did feel like a little of the weight had been lifted. We would like to say a massive thank you to Christina, as I called her throughout his stay in hospital, and my questions as naïve and stupid as they may have been were answered through her group and personnel experience! What we learnt was not to be afraid of picking up the phone and speaking to someone, even if you’ve never spoken to them before, as many people have been through similar experiences.
Christina gave me the names of a number of consultants at the Royal Brompton Hospital, as that is where Meshi needed to be transferred to. I called Brompton at least twice a week for the eight weeks that Meshi was at his local hospital, I was in fact on first name terms with Prof Polkey’s secretary. I’m not sure whether making a nuisance of myself helped, but they couldn’t forgot that Meshi was waiting for a bed as they had to listen to me drone on for weeks! Meshi had never been a patient at the Brompton, but when we were in doubt of what the local hospital was doing Prof Polkey cleared up the issues, he also spoke to the local hospital advising them of what to do.
When the “Big Guns” come to talk to you it really hits home how serious the situation is. The intensive care director and main consultant took us into an awful relative’s room, and proceeded to tell us all about DMD, which he read from a Wikipedia article. In normal circumstances, I would have given him a piece of my mind, for being so patronising! Basically Meshi could not be left intubated for longer than 14 days, so time was running out. His solution was a tracheostomy. To this day I don’t know if a tracheostomy was the right thing to do, but it was the ONLY thing the hospital could do for him, so we agreed to it!
Meshi woke up from sedation to find that he had had a tracheostomy, which also meant that he couldn’t speak. He was distraught and had so many questions but he couldn’t express himself. We then spoke to the staff to extend our visiting hours, surprise surprise their answer was NO! Don’t take no for an answer, as we did eventually get extended visiting hours, but it was a fight. Our main argument being that he may know what was clinically correct, but emotionally we were the experts. Meshi has never been independent, so why should they insist he should now become independent, in the alien environment he was in, with his only communication being through lip reading. We spoke to the nurse in charge, her senior and then the hospital advise centre, only then were we granted extended visiting.We learnt never to take NO for an answer!
There were times where Meshi was at his lowest and phases such as “Why did this happen? Will I ever get better? Will I ever go home? are ones that we will not forget.
Finally on the 14th May he was transferred to the Royal Brompton. I can only describe it as a breath of fresh, after what Meshi went through at his local hospital. He was at the Brompton for a total of four weeks, where he was weaned off his tracheostomy. The doctor’s had time to speak to you, we were allowed to stay with him 24/7, and nothing seemed to be a problem.
Meshi came home after a long and difficult three months. He now has a night ventilator and is getting back to his normal life.
If it would help anyone to talk to us about our experience, feel free to contact me on neeru.m@hotmail.co.uk
Life is far too short, so enjoy and cherish every moment.