I dream of running again. And swimming. Neither will ever happen, but I would love to be able to walk outside and take public transport to art galleries and meet friends out, etc.
I’ve been trying to walk again. My apartment block has a corridor outside our door, and it’s 45 steps to the lift and 45 back. For the last five days I have been making myself walk to the lift and back, and sitting down to rest when I get back. Then repeating x times. The only reason I can manage this is because the corridor floor is smooth and carpeted, and it is warm there. I think I have some agoraphobia, because I panic if I’m walking away from home - I can manage a few steps before I need a sit down.
I had a wonderful physio in Glasgow called Rosie who was absolutely outstanding. She taught me to climb up a step and gradually managed to teach me to do it with only one hand gripping the bar. She also taught me to do slopes, up and down.
I was given about 6 sessions with her in the rehab gym, during which time she would go and see other patients, when I would be left to practice on my own - and told to use walking aids when she was not there - and there was a tea break. But I reckon I had about 45 minutes of one to one time with her each time.
I was researching the average step count of bilateral tibial amputees because I really don’t want to become immobile. Having severe coronary artery disease and a previous heart attack, if I was to become immobile (ie wheelchair dependent), my chances of dying soon would be significant.
I came across an interesting paper which outlined the rehab given to amputees from the British Army. I think they deserve the best, they should receive excellent intensive rehab and a holistic care package which also looks after their psychological, sociological, and community health and occupational therapy, et cetera. I was glad to see that they do receive a fantastic package of care. I couldn’t help feeling a tiny twinge of envy because compared to my 6 X 45 minutes one to one with Rosie (but each one was a two hour session, so the rest of the time I was practising walking on my own with a walking aid), their rehab compares to mine like a 5 star hotel to a youth hostel. I quote from the paper:
‘British military personnel with amputations undergo rehabilitation within the Complex Trauma Team at the Defence Medical Rehabilitation Centre (DMRC). The Complex Trauma Team is an interdisciplinary department including physiotherapists, exercises rehabilitation instructors, occupational therapists, nurses, social workers, medical team, prosthetists, orthotists, podiatrists, psychologists and rehabilitation assistants. The rehabilitation programme run by this team, also described by Jarvis et al.,29 provides 7-h/day, 5 days a week. This includes approximately 1-h daily physiotherapy for manual therapies and prosthetic training; 3–4 h daily exercise therapy in both group and one-to-one sessions; occupational therapy for adaptation of, and training in, activities of daily living, socialisation and vocational support; social work services and mental health support. The rehabilitation programme runs for between 2 and 6 weeks at a time, over repeated admissions, with ‘recovery leave’ breaks in between, of approximately 2–8 weeks, dependent upon need. Recovery leave can be used for rest at home or return to work depending on an individual’s requirement. Rehabilitation for those with bilateral lower limb amputations can run over 2–3 years, depending on their progress and other medical interventions, for example, further surgeries.’
Unfortunately, I had to move my rehab care from Glasgow to London because of the admission to Saint Mary’s for three weeks with cellulitis and wound infection which needed a synthetic skin graft (which fell off because a junior doctor had poked her dirty finger into the wound a couple of days before my skin graft when the wound was really clean, after my three weeks of IV antibiotics)
I was told I had to transfer my care from Westmarc in Glasgow to Charing Cross if I wanted to see a prosthetist or physio, which they said I needed to do.
The only trouble with the care at Westmarc in Glasgow was the nurse who did my dressings each time I was there (despite me begging the lovely Physio to do them, because she used a sterile technique) and infected my wound. She washed her hands and put on sterile gloves, but then she opened several drawers in a non sterile chest of drawers to look for an ointment, and then she picked up the ointment tube which obviously was not sterile, and smeared the ointment on her gloves which had just rifled through a couple of drawers, and smeared the ointment directly into my large wound.
No wonder I became infected . I was miserable, hinting to her about things not being sterile, and her waving me off.
Anyhow, for the next few months in London,my walking regressed a lot from the standard I had reached with Rosie in Glasgow because of being told not to use my prosthetic legs until the amputation wound was completely healed. Glasgow encourages amputees to walk on their prosthetic leg even when the wound is not healed. They check the wound before and after, and dress it. However, in London, putting on a prosthetic leg when the wound is still unhealed is very much verboten.
So the period of time that I wasn’t allowed to use my prosthetic legs was three weeks in hospital followed by about six weeks bedrest at home during which I had to use my wheelchair only.
When the wound finally healed and I was allowed to try and walk again, my balance was completely gone and my walking was terrible.
Through walking up and down that corridor, I have managed to get my balance and gait and meagre amount of fitness back to what it was when I was seeing Rosie.
I was referred to the Physio in London after discharge from Saint Mary’s last Spring but all she did was get me to lie down without my prostheses and do leg raising exercises (which at the time I was doing every day at home ) when she was with other patients, and then getting me to don my prostheses and walk with a zimmer to the parallel bars in the gym and walk in between said bars. She would give me a perfunctory couple of seconds appraisal then tell me to continue while she went to see other patients. The third time I appeared, she said I didn’t need any more physio because I was walking between the bars in a satisfactory way. That’s fine, that’s all they could manage with their staffing. Sometimes you get an excellent member of staff, as I did with Rosie the physio in Glasgow, and other times you get an indifferent one. But boy did I wish that I had been referred back to Rosie in Westmarc. (Although I would have to duck and hide every time the nurse appeared. Or the original prosthetist who made me a leg so big and didn’t give me a rubber overlining to keep it on thatit fell off in my hotel room in Amsterdam, leading to £35,000 down the drain and eventually, amputation of the leg.)
I wonder if it would be bad form to transfer back to Westmarc when we are next in Glasgow? I also have a lovely prothesist there - not the one who gave me the incompetent leg, but a very conscientious and excellent prosthetist, Elena. I’m afraid the prosthetist in London is not as impressive, she is very nice but so far she has not succeeded in making me prostheses which fit and are moderately tolerable. And I told her about the foot being inturned (pigeon toe) when I was there a couple of weeks ago and I knew that she needed to rotate it out but what she did was put a lining in my prosthesis cup instead, which didn’t help. So when I went back to my next appointment, I just asked her to rotate the foot out please, and she did. I was back so quickly because I thought she had made me a new pair of prosthetic legs to accommodate the fact that I have lost weight. But I was aghast when she said that I could not have a new pair of legs with the new smaller sockets she has just made,, she would have to dismantle the existing prosthetic legs I was wearing, which were loose but the problem was solved with three thick stump socks in each and a rubber overlining to hold them on. I didn’t want to lose these comfy legs with which I was now walking in the flat and in the corridor outside the flat. She switched them and the new, smaller sockets and cups were dreadfully uncomfortable and I asked her to please put my original ones back on, because they did stay safely on my stumps with three thick socks each and crucially the rubber overlining (which that first prothesist had never even thought of despite knowing my prosthetic was huge and loose.)
So I have seen the prosthetist here about four times and only one of her prosthetic legs is wearable. Plus, my confidence took a knock when she measured me for the first pair way back in about May and she didn’t know how to use the ultrasound scanner which measures the stumps. Someone else had to do it for her. Then for the smaller sockets, she did them in the old-fashioned way with plaster of paris. Nothing wrong with that, but the sockets and cups she made felt like pinching shoes that would give you blisters.
Would it be bad form to switch back to Glasgow Westmarc? Would they have taken offence at me transferring my rehab from there to Charing Cross? It is what I was told to do and at the time I really wanted to learn to walk decently again and did what they asked me to do.
There have been some good things about rehab here in London. I was allocated a rehab doctor, which is not something that happened in Glasgow. In Glasgow, rehab was strictly a medical free zone. No doctor saw me to follow up my wound. I do think this was remiss because a doctor could have recognised the wound infection and cellulitis while I was pointing it out to the Physio, who is not trained to recognise such complications and thought the redness on my stump was sensitivity to the dressing used to cover my wound. As for the pus in the wound, they thought it was slough, the dead cells coming away, which is not unusual in an amputation wound.
Anyhow, the rehab doctor is lovely. He is a consultant of Asian origin - I guess Indian - and despite being elderly, he is very conscientious and also gentle and kind. Every time I meet him my prosthetist sits in, and a physio if he/she is free. It does feel reassuring to speak to speak to a senior doctor, even though it’s only once every six months or so. I find it very easy to let him know what has been happening, e.g during the month we had away in Glasgow in August, I had an internal bleed that dropped my haemoglobin from 12.3g/dl to 6g/dl. (And the Glasgow GP didn’t organise an emergency ambulance, just a ‘non emergency but urgent’ one. 🙄🙄 Not terribly wise considering that I had had a large heart attack when my haemoglobin dropped to 7g/dl in 2020, and considering that he knew that I had had several serious bleeds since then, including one at the Royal free where my haemoglobin dropped to 5g/dl.) Still, the 4 hours wait for the ambulance did allow me to have a shower and wash my hair, even though I could not raise my hand to hold the shower because I was so weak. Does anyone else hate going to hospital without being freshly showered? For me, it’s essential since you know you will be in A&E for 48 hours before you get a bed.
This consultant listens more than he talks, which is always reassuring in a doctor, although he does talk softly too, and he makes eye contact and is empathetic, and makes very sensible decisions.
Here in London, the GPs at the centre I have signed up with as a temporary patient are very good and on the ball. I sign on with them every time I come to London, or at least Robert does, because I don’t leave the building unless I am wheeled away by hospital transport to hospital. That is why I am working on learning to walk again.
It would be useful to see Rosie again in Glasgow. I would really repeating her encouraging me to climb up a step without gripping both handrails, just lightly touching one. And have her look at my stair climbing and descending and give me more tips. And it would be good to have an opportunity to try the slopes again.
All advice gratefully received. We won’t be back in Glasgow for awhile, but when we do go, should I transfer my care back to Westmarc? Or will I be persona non grata for putting in an official complaint about two of their staff members, the prosthetist responsible for the dangerous leg and the nurse whose technique may as well have involved taking a shite in my wound? Do I stay or do I go?
It sounds inadequate but sending lots of love.