10 replies to this topic

[scpenn]

My brother is SCI (c2-complete) following a road accident in 1974. His general condition and motivation has been good, until recently.

The local nursing service (Northern Ireland) has been cut back (costs etc) to one visit per day from a district nurse, with the rest of personal care carried out by carers from local trust homecare service. The nurse varies from day to day with approx 6 different nurses covering.

Last year for the first time in 35 years he had a bed sore on his bottom, which resulted in inpatient antibiotics. Unfortunately, the local general hospital were unable to maintain his bowel management regime and he became compacted and suffered from automonic dysrelexia. Shortly after that he got pneumonia and suffered respiratory arrest (we were told he wouldnt survive the night, but thankfully he did)

Since then he has constant antibiotics (which is not recommended...). He has also developed an irregular heartbeat. My concern and question to the forum is could all this be connected otr is it an unfortunate co-incidence of problems at the same time. Despite being mentally active, he now falls asleep, even mid conversation, and has slurred speech.

It seems all these conditions and ailments are made worse or caused by poor bowel management.

It is extremely worrying and no single professional seems interested or able to link these symptoms together or suggest why his overall condition has deteriorated so rapidly in the past 2-3 years. Has anyone similar experiences or advice, please!!

[S&W Winger]

Welcome to the forums...I am certain you will find much useful info here along with support...

I would venture to say that complications of my bowel program would wreak havoc on me...has this situation been rectified?

I have been on IV antibiotics since Novemeber, and also fall asleep as you described...this is not uncommon...

It does seem to pour upon us all at once, sometimes connected, other times coincidence...he has survived this long and in relatively good health...this is excellent, and perhaps he could regain this status...

Perhaps someone with another perspective will add more knowledge to this for you...

I wish and your brother the best...please let us know how things go...

[scpenn]

Many thanks Beverly...

Its certainly a worrying time, because 'we' all seem to know the consequences of poor bowel management, yet the nursing professionals do not. Its not satisfactory to allow the bowels to get impacted, then try to deal with the resulting problems, inc heart rate, breathing difficulties, fluid retention etc etc. Their answer - phosphate enima and hope for the best. On one occasion this involved enima, hoisting up in a sling and hovering over a bed pan for over an hour hoping gravity would do the trick.....

The local general hospital has admitted they have zero SCI experience, whereas the local SCI unit cannot admit a patient with acute general health/medical issues.

[goose]

has there been a change in his diet? there are lots of things that you can eat to help the bowels work better. pears,blueberries,prunes or the juice. there are fiber drinks also. i find eating fruit and vegetables helpful.
don't eat too many at one time or you'll get the opposite problem. nuts are also good.
he has done something right in the past to be so healthy.
was the AD really bad--could he have had a mini stroke.

[pinkcloud]

[quote name='scpenn' timestamp='1304287578' post='224592']

Hi scpenn

Being early sci and incomplete I dont feel I can even imagine what your brother or you are feeling at the moment, to live with sci for so many years, and just when theres 35 years of better medicine to help him more than when first injured - this happens.

I am extremely passionate about the importance of quality caring care. Once a patient has left the doctors sight - the nurses take over. Good nurses are a dream - bad nurses, a waking nightmare.

I had HORRIFIC abuse in hospital. This got seen by fellow medic friends whom visited me. I made offical complaints yet rather than sue an already strapped for cash NHS system, I bought attention to the GOOD nursing staff and ALL the doctors who help me (none were bad) and caring tea ladies and cleaners who stopped us going insane. How some of these old patients were treated - I was disgusted and spent me time 'mentally' holding their hands and helping them thorough the agonizing pain they were left in by the 'bad nurses.

In Britain a programme called dispatches, a very highly respected docmentry reported on how bad some nurses were treating patients. Yes poor care, like not preventing a bed sore, the stress I imagine he feels with the new carers in place.....I imagine would play a big part. I discharged myself after begging me consultant to allow me home early....got home and recovered better in ONE WEEEK than I had in them weeks in hospital. If you can download that off the internet you will see you will see you are not imaging the impact the change of care will be having - if not physically, I cant comment on that sorry as have no medical knowledge - but emotionally, yes.

Then came the home care...well as nice as I am - in equal measures so can I be nasty, a resort I hate having to resort too. The poor care of the majority of the carers again was making me ill, so eventually after a £60.00 phone bill I got the support I needed. I ripped into the care manager and her assistant - both running the care service with the usual traits of 'i have a bit of power i'll be hitler' and had them both in floods of tears as I ripped them to pieces and shown the 'caring people in authority exactly what they were up too. The good carers, I am still friends with, the stories they told me of similar situations to your brothers was the last straw. I did not want to sit back and not say anything.

The equivalent of your nurses swapped to less competent care staff - is like surgeons doing delicate spinal cord surgery seeing a patient once - then discharging the patients care to general doctors who never worked in neurosurgery and expect them to care for sci's. This is wrong.

Antibiotics long term. Theres lots of anti-biotics, its took me to be allergic to every kind, that dont work, before being offered one of the more expensive antibiotic - which works great. 5 removed teeth later, 3 under emergency hospital surgery and the condition of lock jaw later before dentists offered me this.

Please do come on here, we will help support you with moral word of encoragement where we can and if possible, if yo have the energy at this awfl time, go to powers above and get this looked into. Its not fair that either your brother, you or loved ones go thorough this. You both deserve to be as comfortable as can be and be recognised as the strong people you are to cope with sci for so long and be respected for such. I'm sorry I cant offer any kind of health authority advice as we live in different countries but me hearts with you.

Theres some strong charactors on here, if anyone can help - they sure can :-)

Edited by pinkcloud, 03 May 2011 - 07:11 AM.

[Simba]

Sorry to hear that your brother has had such a bad run of it lately health-wise. In answer to your question yes there is a possibility that all of his current medical ailments are connected. Your brother being disabled means that he already has a somewhat compromised and less tolerant body as that compared to a totally healthy person (meaning that under normal conditions some of his systems have to work that little bit harder to keep going). Extremely little things can have devestating consequences in cases like this it can only take a relatively small trigger to tip the scale leading to a chain of events in his health. The pressure sore would have been the beginning of this and his hospital stay would have instead of bettering the situation worsened it as he was by the sounds of it not receiving adequate care/monitoring and supervision to suit not only his disability needs but his current health problems.

This sounds like a horrific experience you both have been through and I hope things improve for you. It is unfortunate that the district nurse attendance has been reduced, a sign of today's times where short cuts are arising all over the world and people are forced to suffer unnecessarily as a result. Most hospitals do not seem to have the staffing to provide what is necessary in terms of maintaining routine or to understand what a huge effect this alone can have on disabled people's health.

I hope you have good carer(s) or friends or family that are able to somehow step in and fill the all to obvious gap for him and ensure that he receive the appropriate care. His bowel routine definatley needs to be addressed as ongoing problems with this will lead to other health complications arising. The combination of his problems with bowel & toxicity due to this & the pressure sore would surely have put so much pressure on his body that it resulted in pneumonia developing(Due to the lowered circulation he would have had from these problems). Pneumonia is obviously one of the worst possible complications in a disabled person, the reduced active control over respiratory function & capacity (especially at his level) would be causing some strain on his heart (the abnormal heart rythm is probably a reflection of this). Antibiotics have obviously been given intravenously to him in the hope that this will clear the infection (something which his body is not up to on it's own at the moment), stabilise him, return flow & circulation and increase respiration.

Hopefully the continual antibiotics will play their role in returning some of his systems to relatively normal function. Are there other people involved who could possibly contribute towards monitoring that his disability routine is a little more structured while in hospital and when he comes out as i think this will be important to put into place. Wish you both well I hope for the best with his recovery, sounds like he has a very good support person/sister in you and I'm sure you will do your best to support him however you can.

[nomis]

Congrats to you, your family and brother for managing so well for so long. C2 is serious stuff.

Some of the deteriation you list would be expected with ageing. I'm one of your standard paras from a road accident in 1970. Recently I was put on low dose medication to steady my heart and the joints in my fingers and wrists can be unkind. Like me, I suspect your brother's body is showing signs of being lived in as an SCI-person for many years.

The bowel problem may be contributing but it's not all to blame. However, that bowel situation is certainly as important to sort out as you state. Your local medical people don't have to be experts, they just need to have enough interest and brains to phone a spinal unit for helpful information.

[scpenn]

Firstly, many many thanks for the kind replies, support and encouragement. My parents looked after my brother almost 100% independantly until my father died in 1989. My mother who is now 78 (4 hip replacements, half a lung removed later) still tries to be independant and fights, rightly so, to get the right care package. Its a twist of pride over need.

In no particular order, I am in full agreement with individual's contributions on this topic. There are 'care' workers who deserve the title 'care' and some who certainly do not. On a daily basis my mother & brother have no idea which carers are working, and any random stranger can walk in un announced. This disturbs my mother, being more vulnerable then she was years ago. There is no continuity from a district nurse so its only when a carer brings something to my mother's attention does anything happen. Bed sores. bowel (mis)management etc are all signs of neglect, but already stated, why sue an already cash strapped NHS.

IN A&E at Craigavon Hospital ( a so called centre of excellence ) my brother had a blocked catheter and was left for several hours in a distressed state. I called the nursing sister and explained (in my layman's terms) about AD, the doctor came and I explained to her about automonic dysreflexia and I said if they needed assistance to contact the SCI Unit at Musgrave Park (another centre of excellence!) Their reaction was underwhelming suggesting that they knew all they needed to know and why should then contact another unit. Moments later, I approached the doctor who was at the PC googling Automonic Dysreflexia!!

I am encouraged by your kind support. Many thanks to one and all!!
Stewart

[Simba]

Some doctor's at the hospital here have accused us of being hyperchondriacs when my husband was having an AD attack - the gall of them the problem is sheer arrogance - they think they know it all and as you say most would have to google it.

Is this an ongoing trend for all of you that there is no regular carer - I was jut thinking that at his level it would make the sitaution much harder to manage with and I don't know the system you are under there but is there no way he can get a more regular carer or move to a set of people who are a little bit more familiar with his individual health needs? I hope you get that better care package you are talking about as it would be a huge improvement to have better care organised for your brother.

Keep us posted on how things progress in terms of care & health for all of you. No doubt people on here will offer as much support as we can send via cyber space.

Hope the situation improves.

[Scribbler]

As Nomis says (and he's always right) C2 is serious stuff and I also congratulate your brother for his achievement in keeping free from pressure sores for so long.

I can also understand you plight, as I've been C4/5 for over 50 years and still pressure sore free. Its true what Nomis says, the ageing process certainly takes its toll on a long term SCI; I can personally vouch for that.

10 years ago I was fit, active, could push a manual wc and drive alone in my car. I've gradually got weaker and like your brother, contracted pneumonia, which I've now had 8 times. I now use an electric wc, no longer drive, suffer with many age elated ailments, the list is endless. My bowel routine has also changed, not helped with the constant use of Antibiotics.

Its much harder to find good care these days, people are too busy thinking of themselves; its the way this modern Society is. We must also blame "The Faceless Suits," who cut the budgets but still drive home in their BMW's.

There is no easy answer to the ageing process but at least your brother has you to fight his corner, so try as hard as you can to get him the care he needs and deserves. I wish you good luck.

Scribb's

[nomis]

...and Scribbs is alwasy right, even when he disagrees with me he is right.