Hospitals R Me! - June 2011 to August 2011
June 2011
Further, increasingly worried, trips to the hospital and GP left people unsure what was wrong and I was now unable to walk anywhere at all and had to rely on my arms to propel myself around as from the stomach down I was becoming unable to do anything (yet my arms were fine). I could no longer manage the stairs in our house so ended up sleeping on an air-bed in the lounge and efforts were made to make the trip from there to the downstairs toilet as easy as possible.
As I had private medical insurance, it was time to invoke it and I went to see a specialist in stomach and bowels. He recommended a course of scans and tests which took place over the next couple of weeks. I was gradually getting weaker and weaker in my legs and could no longer even stand un-aided, so it was obviously getting very serious. I was admitted to private hospital to have a Gastron & colon-oscopy (stick cameras in top and bottom!), as I could no longer walk I stayed in the private hospital and this specialist recommended I see a neurologist, and had other scans and x-rays of my spine and whole chest area, plus lots of blood tests.
The two camera tests proved there was nothing of concern up or down (good! – I thought). However the scans/Bell’s Palsy revealed I had a condition called Sarcoidosis, which would require a biopsy to check how bad the condition was (with my lymph glands in my chest). Also other tests revealed that I had a neurological condition, so I had nerve conduction tests (stick a large amount of current through various parts of your nervous system and see how high/fast you jump!), plus a lumbar puncture (a word of warning about these – they procedure doesn’t hurt too bad at all, but the pain afterwards does and lasts for quite a while, so ask for all the painkillers they will give you shortly afterwards! – I’ve had 2 now and both were very similar experiences).
Both the nerve test and the lumbar puncture came back that I had serious issues with my nerves and signals getting anywhere – in my legs, yet my arms were 100% (in fact I jumped so high and quickly the consultant actually apologised and reduced the current significantly after the first test!). This confused them massively from two viewpoints:
It was then first muted I may have the much rarer CIDP – but things still didn’t totally add up. So the hospital started to run rigorous tests on my breathing, waiting for this to deteriorate and then wait for results of the biopsy.
I was transferred to another private hospital for the biopsy and this was run and I was then (in theory) transferred back. This is where it started to go wrong! I was taken by ambulance back to the first private hospital, who refused to re-admit me, due to the fact that I had been initially admitted by the gastroenterologist and it was no longer his case. In tears I begged them to keep me in, but they refused and I had to get my wife to come and take me home.
This was the worst day/night of my life! As I ended up spending the entire time on/next to the downstairs toilet as I had no idea when I would go and minimal control either. The next day my wife phoned our GP who referred me to the NHS hospital. An ambulance was sent to pick me up (lying on the floor, soiled and in considerable pain), they stretchered me to the hospital. I was admitted to a general ward.
BTW: the results of the biopsy showed minimal issues and though I did have Sarcoidosis it was not particularly malignant and would just need an eye kept on it in the next 6 months or so.
Numerous drips (as I was very de-hydrated and pale according to them) and blood tests from the veins and arm later, the same neuro-consultant who had seen me privately turned up at then NHS hospital and confirmed I had CIDP (at last this problem had a name!). My weight had dropped from 13st to just above 10st! I could not feel anything from my stomach down and my legs looked like I’d come out of a prison camp! (as virtually all the weight I had lost was muscle)
I remained in this ward for a reasonable time and was given pain-killers and medicine to assist with bowel movement. I worked out a routine with a chair next to my bed how I could get from the bed to the facilities and back again, under my own steam.
July 2011
About one or two weeks into my stay at the NHS hospital, the neuro-consultant recommended a treatment called IVIG (no I am not even trying to type out this one!). It was a plasma replacement treatment that was designed to assist patients still “on the way down” to recover quicker and start “on the way up!” (these are the consultants words), it would take 5 days. The problem was that I knew I was actually getting better at this stage, though the consultant was convinced I was not! The basis for his prognosis was that I could not lift either of my feet off the bed and that I could not push “up” with my feet from the ankle. I kept pointing out to him that this was the very worst test in the world for me, as due to my RTA I had considerably reduced/limited vertical movement, I never did have and so the test was invalid.
I started to see some neuro-physiotherapists, who started to give me simple exercises to keep me moving and get some strength back into my legs, one interesting point throughout all this was their continued wonderment about how/why my arms were not impacted and that I had full capabilities in this area.
After a few weeks when it was clear I was improving (very slowly), I was moved to the neuro-recovery unit, along with other people who were recovering from strokes etc. This was good as there were physio-therapists on the ward full time and they devised a stringent routine for me to recover as quickly as possible. My main problem was that I had gone down so far and my muscles had deteriorated so much that I had to learn to walk again, right from the start. Also I still had considerable lethargy so if I pushed too hard I caused myself more problems. Also as the nerves were recovering at around 1mm per day – it could take up to 3 years for me to recover fully (if I ever did! – that would teach me for being tall). Although I have been told since that the nerves had not been destroyed, just the sheath round them; so it should not take very long to recover at all!
The recovery was slow but I was happy I was on the way up! Boy was I bored!
August 2011
An occupational therapist came to my house and recommended changes to be made so that I could then go home (Yes!). These included a seat for the downstairs toilet, a bath seat, rails in the bathroom (which had already been fitted by a friend), a higher seat for the lounge (borrowed from my mother-in-law), plus a set of bannisters for the outside of the stairs. Along with a number of aides: Zimmer frame for upstairs, one for downstairs, two walking sticks, a perching stool so I could make myself a drink…..
Once all these changes had been completed I could go home (YES!). At this time I had managed to start walking using two sticks (or a frame) and despite some falls could actually get upstairs (OK a few at the gym, by hauling myself up with my arms, but it was an improvement)! It was decided however that I would remain downstairs for a while for my safety and the sanity of my wife (as I was getting up to go to the bathroom at least 3 times a night).
The big day arrived I was discharged and came home (you have no idea how good this felt!) and even though I had to stay downstairs the relief and happiness I felt was extreme.
Further, increasingly worried, trips to the hospital and GP left people unsure what was wrong and I was now unable to walk anywhere at all and had to rely on my arms to propel myself around as from the stomach down I was becoming unable to do anything (yet my arms were fine). I could no longer manage the stairs in our house so ended up sleeping on an air-bed in the lounge and efforts were made to make the trip from there to the downstairs toilet as easy as possible.
As I had private medical insurance, it was time to invoke it and I went to see a specialist in stomach and bowels. He recommended a course of scans and tests which took place over the next couple of weeks. I was gradually getting weaker and weaker in my legs and could no longer even stand un-aided, so it was obviously getting very serious. I was admitted to private hospital to have a Gastron & colon-oscopy (stick cameras in top and bottom!), as I could no longer walk I stayed in the private hospital and this specialist recommended I see a neurologist, and had other scans and x-rays of my spine and whole chest area, plus lots of blood tests.
The two camera tests proved there was nothing of concern up or down (good! – I thought). However the scans/Bell’s Palsy revealed I had a condition called Sarcoidosis, which would require a biopsy to check how bad the condition was (with my lymph glands in my chest). Also other tests revealed that I had a neurological condition, so I had nerve conduction tests (stick a large amount of current through various parts of your nervous system and see how high/fast you jump!), plus a lumbar puncture (a word of warning about these – they procedure doesn’t hurt too bad at all, but the pain afterwards does and lasts for quite a while, so ask for all the painkillers they will give you shortly afterwards! – I’ve had 2 now and both were very similar experiences).
Both the nerve test and the lumbar puncture came back that I had serious issues with my nerves and signals getting anywhere – in my legs, yet my arms were 100% (in fact I jumped so high and quickly the consultant actually apologised and reduced the current significantly after the first test!). This confused them massively from two viewpoints:
- The words GBS were mentioned, but this had taken too long to occur, so it couldn’t be that
- My stomach and legs were affected but not my arms or breathing, so again it didn’t fit
It was then first muted I may have the much rarer CIDP – but things still didn’t totally add up. So the hospital started to run rigorous tests on my breathing, waiting for this to deteriorate and then wait for results of the biopsy.
I was transferred to another private hospital for the biopsy and this was run and I was then (in theory) transferred back. This is where it started to go wrong! I was taken by ambulance back to the first private hospital, who refused to re-admit me, due to the fact that I had been initially admitted by the gastroenterologist and it was no longer his case. In tears I begged them to keep me in, but they refused and I had to get my wife to come and take me home.
This was the worst day/night of my life! As I ended up spending the entire time on/next to the downstairs toilet as I had no idea when I would go and minimal control either. The next day my wife phoned our GP who referred me to the NHS hospital. An ambulance was sent to pick me up (lying on the floor, soiled and in considerable pain), they stretchered me to the hospital. I was admitted to a general ward.
BTW: the results of the biopsy showed minimal issues and though I did have Sarcoidosis it was not particularly malignant and would just need an eye kept on it in the next 6 months or so.
Numerous drips (as I was very de-hydrated and pale according to them) and blood tests from the veins and arm later, the same neuro-consultant who had seen me privately turned up at then NHS hospital and confirmed I had CIDP (at last this problem had a name!). My weight had dropped from 13st to just above 10st! I could not feel anything from my stomach down and my legs looked like I’d come out of a prison camp! (as virtually all the weight I had lost was muscle)
I remained in this ward for a reasonable time and was given pain-killers and medicine to assist with bowel movement. I worked out a routine with a chair next to my bed how I could get from the bed to the facilities and back again, under my own steam.
July 2011
About one or two weeks into my stay at the NHS hospital, the neuro-consultant recommended a treatment called IVIG (no I am not even trying to type out this one!). It was a plasma replacement treatment that was designed to assist patients still “on the way down” to recover quicker and start “on the way up!” (these are the consultants words), it would take 5 days. The problem was that I knew I was actually getting better at this stage, though the consultant was convinced I was not! The basis for his prognosis was that I could not lift either of my feet off the bed and that I could not push “up” with my feet from the ankle. I kept pointing out to him that this was the very worst test in the world for me, as due to my RTA I had considerably reduced/limited vertical movement, I never did have and so the test was invalid.
I started to see some neuro-physiotherapists, who started to give me simple exercises to keep me moving and get some strength back into my legs, one interesting point throughout all this was their continued wonderment about how/why my arms were not impacted and that I had full capabilities in this area.
After a few weeks when it was clear I was improving (very slowly), I was moved to the neuro-recovery unit, along with other people who were recovering from strokes etc. This was good as there were physio-therapists on the ward full time and they devised a stringent routine for me to recover as quickly as possible. My main problem was that I had gone down so far and my muscles had deteriorated so much that I had to learn to walk again, right from the start. Also I still had considerable lethargy so if I pushed too hard I caused myself more problems. Also as the nerves were recovering at around 1mm per day – it could take up to 3 years for me to recover fully (if I ever did! – that would teach me for being tall). Although I have been told since that the nerves had not been destroyed, just the sheath round them; so it should not take very long to recover at all!
The recovery was slow but I was happy I was on the way up! Boy was I bored!
August 2011
An occupational therapist came to my house and recommended changes to be made so that I could then go home (Yes!). These included a seat for the downstairs toilet, a bath seat, rails in the bathroom (which had already been fitted by a friend), a higher seat for the lounge (borrowed from my mother-in-law), plus a set of bannisters for the outside of the stairs. Along with a number of aides: Zimmer frame for upstairs, one for downstairs, two walking sticks, a perching stool so I could make myself a drink…..
Once all these changes had been completed I could go home (YES!). At this time I had managed to start walking using two sticks (or a frame) and despite some falls could actually get upstairs (OK a few at the gym, by hauling myself up with my arms, but it was an improvement)! It was decided however that I would remain downstairs for a while for my safety and the sanity of my wife (as I was getting up to go to the bathroom at least 3 times a night).
The big day arrived I was discharged and came home (you have no idea how good this felt!) and even though I had to stay downstairs the relief and happiness I felt was extreme.