ITP induced C5-6 Spinal Injury 2 years 8 months ago #68635
There are many lessons to learn from a patient with ITP and SCI.
Therapy support is welcome any time but it has to avoid unnecessary overexertion which doesn't consider the patient's consequences. The example is from the first day with her going up the stairs and back down and then up again. And then signing the 'risk acceptance-responsibility' form anyway. It may have caused excessive fatigue which I then beared the burden of. In any event, I would like to see assistance provided in these areas as outlined:
• Bed blocks (NDIS)
• Shower chair with a hole (HRC)
• Toilet seat (NDIS)
• Mattress and/or suitable bed (NDIS)
• Individually tailored pressure relieving chair and/or removable cushion (NDIS?)
If I were to achieve the five things above it would take many months. By that time her condition will have worsened. After SCI, many health problems ensue. We haven't met a truly caring and professional doctor yet, other than Dr M. So our only way forward is to make fundamental things in life as good as possible. Without NDIS I would provide things to mum which don't make a difference or even worsen her condition. As well as the ongoing trauma and fatigue from SCI and ITP, we are concerned about adrenal issues from 5 doses of IV 40mg corticosteroid (DXM), neurogenic heterotopic ossification of hips, knees and shoulders, and h pylori which failed to be eradicated years ago and for which we now seek IgY sachets from EW Nutrition or IRIG in Japan to treat.
At this point, with COVID-carrying travellers rarely showing symptoms and tracing becoming difficult, isolation of vulnerable people seems to be not so bad. So I want her to regain strength and independence first before getting stressed over moving house. Her respiratory system is evidently weakened from SCI, with increasing breathlessness being reported in the past fortnight. I am very concerned.
The five things above have to be achieved using any method possible and sooner. Moving house is also important but it has to be far better than what we have here. It's hard to find good ones at this point.
My mother has a highly complicated blood condition called ITP which could be a symptom of dozens of illnesses. When she collapsed I'd been working on assignments late into the night and failed to wake early and be there to assist her in getting water or lying down. She may have frantically tried to get water finally through the tap (she forgot and didn't use the bottled water kept in the cupboard). She fell after passing out and got a hematoma on her left eye. Her hemoglobin count was low and her body couldn't move. She then regained some consciousness and continuously called to me. I frantically got some water finally, after going through all the flasks and not finding her cup. She wanted to get out from under the sink/cupboard, so I moved her. First I tried to get her onto a chair multiple times when I wasn't even fully awake, then failing that, kept her kneeling awkwardly against the kitchen table and I left to get the phone. Later the operator told me to count her breathing and lay her flat. That operator is at some fault for I moved her onto her back improperly and her head fell backwards, hitting the ground very hard. It's clear to me that her C6 spinal injury came from that. Her swollen spinal cord must be from my other movements. Her hematoma on the eye recovered but her ITP is still uncertain. Her medications have worsened her body's functions and recovery/rehab.
I can't get over my mistakes and ignorance of emergency procedures. Her neck MUST NOT move, and overall recovery of limb movement is still uncertain, particularly her fingers. Originally I was to gradually increase my study time as my mother's fine motor skills recovered. However so far her stress has worsened her ITP blood condition. Each week she faced new infections, conflicting medications, notably 40 mg of dexamethasone for 4 days which directly compromises her overall spinal cord injury recovery, flucloxacillin, diazepam from the infamous Dr El Shafei, damage to rectum from a non-lubricated HRC type (nurse negligence) enema, unnecessary use of catheters which caused infection and was tugged by nurses roughly and caused damage and more.
Overtreatment, evidenced by the never used PICC line which was agreed to after a Japanese speaking woman mouthed abuse and taunts at mum's last minute refusal and which we never got a proper explanation from doctors for as we were tired - the procedure had a mistake and an extra x ray was done - the risks of the PICC were immense and given that it was never used except to inject dangerous doses of dexamethasone it is a true killer; in fact SA Pathology staff were not able to use the PICC for blood tests so they did a normal injection and it was outrageous until nurses were requested, painfully stupid and purposeless ABG injections which failed also, overuse of x-rays which may have affected bone marrow and general wellbeing. I keep forgetting the unnecessary second, third, and many more transfusions and profuse ‘blood tests’ causing other’s risky and unwelcome blood material to enter and the precious little ‘own blood’ to be lost god knows whatever effect that might have had just to satisfy the doctors who see only numbers and artificial unnatural things. And why is it that nobody seems to know of a problem with total blood volume in a body – they take for granted ‘you’ve got lots of blood’ and take it. But clearly it was difficult to take – ‘dry’ but how can we argue?!
At the RAH, as with any hospital, teams of doctors push responsibility to others and nobody works properly with their patients using the right professional attitude. All they care about is drugs, procedures, or surgery. Most nurses work without truly seeing the patient's needs and patient's perspectives. As people they may seem fine but I don't look up to their standard of work. In general mum tried to cooperate as an active patient in her own way. She was not given any respect overall.
On the first or second night, knowing mum and I were adamantly against dexamethasone but considering IVIG, nurses tried to get her to agree to IV dexamethasone. Oral tablets would have been less damaging but we'd let out that she couldn't swallow tablets. What a mistake. After the nurse failed, a female doctor we never saw again changed the name of dexamethasone, and used coercion to elicit agreement as I stood outside the door. The nurse then quickly brought the stuff in, and mum confirmed with her what the stuff was. Despite her frailty and my inconceivably shut mouth, mum managed to find out that they'd been 'tricking' her. At some moment she said 'I give up' and so she got the 4 dose course.
Weeks later, during one night when she'd eaten white radish and then consumed my ginger decoction (the worst of combinations), she suffered heat for hours until daybreak (I'd turned the aircon low), while stressing and thinking about the stupid words the 'aunt from Canada' had said: 'selfish love [of her son]', among other stupid stressful talk I had to endure as 'emotional support' for over a month during her two visits. The next day she had a test and the Indian general doctor came at once to pressure her to take dexamethasone again, he said it had been advised by ‘the hematologist over the phone’. As she was a weak patient she agreed, but after the first cheap (IVIG is pricey) and toxic dose she suffered increasing numbness and heart problems and other serious things, so once she made her refusal clear, the Indian general doctor brought the risk acceptance form to sign. He said ‘I just can’t take the risk anymore.’ That’s our line from the script!
Later when she refused pylori treatment owing to its expected failure, he turned away and said 'She's just a hard rock', shaking his head while the social worker said 'What did you say?' I met the doctor with his wife in late Feb. We're all friendly and wishing each other well but what to say about his threats and coercion tactics to a patient who knows even children don't take dexamethasone and that every bad thing in the universe can be blamed on dexamethasone's side effects? Dexamethasone is the worst, worse than prednisone, and ITP people get the worst dosage, all for other’s satisfaction in numbers. And it always falls anyway. For SCI patients dexamethasone is already not recommended because it’s useless. To prevent abnormal bone growth dexamethasone is impossible as it can’t be used long term.
A similar male doctor also exhibited irritation at the ongoing refusal of pylori antibiotics and useless blood tests which don't help do anything except increase patient stress in the short term and produce data we don't see anyway. Numbers mean nothing in a holistic individualised view of ITP patients. Hematologists just don't get it. He’d rushed to get SA Ambulance to provide adenosine for the heart rate, but thankfully it was unnecessary. Optimism is lacking in these people.
Treating symptoms narrowly instead of the patient holistically, domination of the healthcare scene despite the clear evidence of nutrition and alternative therapies which work extremely well in the long-term without side effects, and the rush to treat by their pessimistic thinking of the worst-case scenario are just some issues. In the first few hours we were lecturing all the visitors to our room in the ED on the need to be holistic. I regret I didn't learn about omega 3, resveratrol, and other specific remedies for the initial hours of SCI damage on the first day.
Patients who care about themselves live in a mess and would recover quicker and better at home. Non-neutral, biased or narrow-minded nurses tended to dislike her, while neutral nurses were ok. This may be because she took issue or was specific with the way some nurses did things for her, and rightly so, for any human would want things done in that way. Still there was much negligence, too much to bear.
One afternoon another catheter infection came along: gentamicin and my state of mind was in a muddle. I had no time to be at peace and be assured that she was apparently set on the road to recovery. Each week still brought new issues. Unnecessary actions by my aunt from Canada and my actions together worsening mum's situation, adding more work for me. Mum even hit her knee when she was there in mid-January, it still has not recovered.
'Spinal cord inflammation, ITP, H.pylori, a failed ABG&major hemorrhage on the left arm with possible nerve damage after blood taken by 2 different Asian male doctors, as well as the PICC line, catheter, are the long-term issues but then there are others which cause short setbacks but which take days to recover from. I think both what is happening around me and my internal condition has prevented me from concentrating. On Monday my aunt basically made me sick after taking me out to eat sushi. I am still recovering from that also.'
The key here is that prior to the doctor's mistakes in taking blood her hand and arm sensation and movement was improving dramatically. It was extremely disappointing to have these useless and unnecessary procedures reverse and destroy the progress made and leave her in this sorry state. She has obviously not recovered at present, far from it, it is getting worse and worse. Blood pressure measurements exacerbated her pain and impaired her recovery. Some nurses adamantly refused to measure her leg. I hate to think about it. One must have an iron-clad heart to refuse till the end. Never yield!!! Yield and you suffer for months and months. The cause is just a moment, and the instigator is never seen again. Damaging is easy and quick. Repairing is long and tiresome. It would be forever and thus impossible.
She did not ask nor give permission to be sent to hospital. Nor to be moved as I moved her and have her body damaged further. It is unfortunate that I know from family stories all the misdeeds of dentists who did unnecessary damage to mum's teeth, doctors who didn't sew up my dad's face properly, myself going to a Japanese children's clinic at my dad's pressure and mum's opposition and getting tonsillitis afterwards all from an Omron Oxygen Generator which for some stupid reason is reused for all the people there – what’s it for!? And WHY DID I NOT KNOW TO REFUSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!, psychiatrists who forcibly took in clearly healthy patients in disadvantaged situations just to fill beds and get government funds and because some family members want to do financial abuse and control of other's money through this, and then destroy healthy patients' bodies with dangerous drugs put into food which long-term residents know about but don't tell the new arrivals. There were specialists who tap mum's knee and other gimmicks, only to just prescribe the now known extremely dangerous drugs for thyroid issues. Hence there is no respect left for any 'specialist'. A few books, memorisation of names and practical gimmicks don't qualify a person to be 'better' and therefore allowed to abuse power. Anyone can do the easy, useless or at worst, disastrous, things they do.
We didn't yet have a complete loss of confidence in any Western healthcare before Oct 2019 but we do have a complete loss of confidence now. It's a gradual process and we were idealistic and optimistic for far longer than we should have been.
Numbness, stiffness, rigidity and pain has been increasing. Her condition is not comparable with that of a healthy individual. No SCI patient shares the exact same experience either. So nobody can understand.
Why do people trod upon the weak when they're weaker!?? It is not appreciated when a landlord comes in, after making me do all sorts of stuff without lowering the rent or anything, including scrub lino when it wasn't my job and was not in a clean condition when we moved in, and other things regarding downstairs, gives us whatever illness she had from her farm or contacts, tells us all the useless things an elderly well-to-do lady would tell, including 'live for your son' etc, wastes our time, shakes my hand twice outside, and makes me feel bored. Calling us 'campers', 'manipulative', 'may require bond' and all that stuff I have not simply forgotten and which the Canadian aunt cleared up in one phone call. When one is weak, Mrs Thatcher who attends some talk at a uni on the future of elderly people, talks about the weather, demands eye contact, demands giving up the seat for elderly, praises the double decker, and then makes me miss the stop for RAH. I walk back under the sun, hot and carrying heavy things without taking the tram which I didn’t know was free there too. After four months and my hard work we are in her good books again. But she is ‘manipulative’ herself. I'm indifferent but then I can't stand these people if I think about it on reflection. Is this just ‘old age’ or actually ‘selfish and inconsiderate’. Speaking of which one cleaner did say ‘You are selfish’ when mum turned off the loud thudding Pioneer radio. They act as if they are the owners and rulers of the place. They act with malice, unconsciously wanting all patients to suffer and stay there for longer. Where is their right? They said ‘I’m in pain too’, but surely it’s far different! You can’t argue with these people. There were minor disagreements with other patients too. Similarly you can’t argue and according to R. who worked for decades in RAH and similarly in HRC ‘you can’t win here’. Indeed true. Some people kept slamming the shelf doors on the wall of mum’s room in the middle of the night. Do they have respect for people, let alone the shelf/pantry? When I used the door it never made any sound. What is it with these people? W., a nurse, argues ‘send letters to so and so and ask for increased funds, staffing etc’. Why is it that the blame is always on funding? This is a behavioural issue, an attitude problem, and the remedy may lie in how the staff are educated. Speaking loudly outside your door, especially when they know you’re having quiet time – what is all this that is certainly not a coincidence for it is a daily occurrence for months and does happen to clear up and become quiet when you’re creating noise or talking. Forget funding. There were good things but the bad outnumber it.
On the day that blood was taken while her heart was beating 180 per min she began to have numb hip/pelvic bones. One cannot take for granted that this is unrelated, although some other factors could be responsible. Where is the evidence that it is unrelated? It's a blank area. Her heart rate still increases after meals and during extreme emotions. Deep breathing while standing caused her first episode. I should have been there earlier so she could speak to somebody instead of report to the nurse. I didn't provide her a phone with a SIM, didn't call her, nor check Skype that day.
She exerted every last bit of strength left to secure early discharge, in the face of a flu patient next door, noises throughout the day and night, heavy door which had to be shut to keep dust and bad air out and which damaged her back repeatedly, and loud and dusty renovations carried out next door of room 16. She got no food except four yoghurt tubs daily at her request. Walking to the kitchen was very risky and tiresome with the walker.
'I have been doing everything extremely slowly and often did too much of unnecessary things. Now I focus on the key issues. I think it is ridiculous now but I visited every day except the first Sunday after the collapse and today. I've stayed long hours and acquired stress from many sources. Owing to the delays this has caused I would like to request a further extension on the 4000 word paper.'
For good health, one needs to be absolute in their refusal of any and all interventions. If the body destroys itself there is nothing one can do. If it's meant to survive properly then it will. No tweaks necessary.
ITP induced C5-6 Spinal Injury 2 years 8 months ago #68764
If you like H. Pylori infections then eat more Sushi. The Japanese lead the world in H. Pylori induced ITP from eating raw fish. There's a fact for you to research.