My experience of opinion/s regarding Dialysis
Some knowledge can be found in books
I found Others unwanted opinions can be so Annoying!
This is a study of some-one, a stranger giving his opinion and things I didn't think to say until exploring the incident by writing this piece. Had I thought of these during the journey, it would have been less awkward! -A smoother ride.
1. "It would be good to get you dialysing in ...(place name)" a driver said one morning.
I retorted something like 'No it wouldn't'
Why does it matter to a driver that I, every-one be dialysed nearer home? Before the treatment started making me infirm by drying me out and weakening me, particularly my legs. I walked in while in my home unit. If every-one could do this he'd have to look for another job.
2. "Most people want to dialyse as near home as possible" he argued indignantly!
-I'm no different here really, it is just that things didn't work out nearest home. But why don't people ask rather than accuse? I feel, believe this answer would've been more easily found had it come as a question.
And while on the subject of questions never asked. Why does no-one as "did you ever try ... (near/er or in your home town)?
3."Isn't Dialysis just Dialysis?"
The person under employ bellowed from the front of the ambulance. I still have no quick answer but this blog explores some of the many reasons why it isn't just like taking a pill then getting on with the rest of your day.
I had to say "No". But some answers as to Why not? -prove problematic. If I gave too much information here it might get back to the very people whom I would rather forget, and whom I would rather forgot me.
Some non-medical complexities of dialysis
No dialysis is not just turning up and being put on a machine. People have differing personalities and different preferences to how things are done. Again I suppose it is true of any walk of life, and would go so far as saying a way of the world that some like a warm temperature, others cold or not so warm. Some like to look out at scenery others aren't bothered about having windows, and some manage to sleep while others watch TV or read, or play on portable game systems etc. As far as Sport goes some like Rugby and hate football, others are vice-versa or like both or don't care for either.
Some prefer to have things done their way while others are content to allow the other person to decide. This is true of both staff and patients, in my vast experience and observations in the environment.
It's not really a question of where you live more how you live and what works best for you. I would suggest as a guide that it is a good idea to keep with the doctor whose books you are already on from pre-dialysis as you will be more used to their ways of doing things. And they will most likely run a Satellite unit somewhere near to where you live. Although not necessarily the nearest.
Starting Out: A brief insight
All patients start at a main unit. These will last a period of time until the staff are happy that you are stable on dialysis and can go to a "Satalite Unit" situated nearer your home. If the placement isn't the nearest it is still worthwhile trying it before asking to go somewhere nearer, even if the option comes up in the process, the time will no doubt come around again soon enough. And in the meantime you will have gained a sense of whether you have things in common, and if your way of doing things is suitable to the way the unit does them. If this is the case it is probably worth staying. You could always ask for a month or so holiday to the nearer place to test it out -though they might say no if no-one is willing to swap. That's your first clue!
When things don't go well
If you're not happy at the place you get to. It is possible that it is some-ones way of trying to say they don't like outsiders. And by outsiders this isn't necessarily location, nor is sport the only possible pass time in this day and age. By talking you will have given clues as to what type of person you are, what you like and don't like and how you are with things generally. This is inevitable. Dialysis often becomes something resembling a 'hive mind' sort of like the Borg in Star Trek to some degree, if you will, with a heirarchy not just from doctor down. For instance my exercising seems to make the older patients stare as if to say "We don't do this here" but I have to stretch due to other issues. Thankfully they tolerate it but it still makes it harder to do somehow. Going against a grain, I suppose.
Difficulties can occur and even sometimes continue to exist in any walk of life. There are many dicey environments where, for instance sound carries, and personal information such as your address, and whether you live alone etc. is given casually and can get around in what amounts to a public environment. Question whether such things are necessary for a form before answering. It's better to answer "I prefer not to say" than regret feeling obliged to answer what may not be important anyway.
As far as being alone goes; some treatments are available in the home but are preferential to some-one being around. It's true that nurses can save a lot of the doctors time with informal chats. But people who live alone should be aware of the raised security threat when spending more time away from home. This of course is necessary when dialysing which is usually three times a week, and time without travelling or waiting etc. is at least four hours but can even be five in certain but rarer cases.
How do I cope? Should I complain?
Whenever things are happening worthy of complaint or even prosecution. It is still better to try to refrain from using the complaint proceedure. In the instance that it becomes apparent that 'I don't fit in/ like it here'. Don't assume that you can change a place to your way of doing things! When every-one else has contented themselves with the way things are being done, the preferred way of doing things will have become set and well established. And no-one likes outsiders coming in saying this or that is wrong; certainly not at first anyway.
What happens with a complaint is that it is investigated by talking to persons involved; and often adds to the persons embarrassment especially when the hierarchy considers the person to need correction. If they were to say the staff member is in the right this would embarrass the complainant. Resentments build up either way.
Coping: Know what you're up against
It is a good idea to find out the options while you're at the main unit as to which unit/s your named doctor runs. If you missed this opportunity yiou could contact the main switchboard, ask for the main unit if you don't already have the number and find out which doctor runs which unit/s. It is also useful to have the office number of the doctors secretary for other questions. Perhaps you change your mind about something, this is the fastest, most efficient way to communicate to your doctor.
It was not obvious to me that I could contact a doctors secretary and make it known that I was looking to transfer. The place where I was attending treatment was blocking where I wanted to go by only offering places where they wanted me to go which were overly inconvenient by distant, but also I'd realised I was much happier with my old specialist.
At the time I felt they wanted me to stay there and try to wear me down. I still feel there are elements of this when I hear that some -who don't actually dialyse- seem to propogate that people who can should be sent to the satellite unit nearest their home whether they like it or not. This is depressing as is anything and everything that takes away control from the sufferer because a key to feeling empowered is the ability and as many opportunities as possible to self manage the treatment/s one is getting. Refusal of this core care component shows "power appeals to those who wish to mis-use it" as the little known proverb goes. And so I missed chances to escape "my Alcatraz".
In many ways I have myself to blame for prolonging my time there. I wrote what was going on, so they tied to stop it. But this didn't stop other things happening, and there was a lot in the repertoir, and so by the time things were repeated a certain amount of time had passed so nobody blinked. I don't know what I was trying to achieve but the drawback of writing this way was that even the hierarchy wanted me to stay, presumably as I was the only one giving feedback and as nobody visited I was the only means of contact. I was told that I could not leave and that I should feel grateful because people had done a lot to make things a little easier for me there. Though for every ounce of work toward this goal there was a ton against.
What to do
So, if you choose to write to any-one at all. Here is the best wording. In so much as it avoids getting into The Drama Triangle of Persucutor, Victim, Rescuer.
state name, address, dob., hospital number, unit dialysed at. etc.
Dear ...(Head of departments title and name)
Thank You for dialysing me at (unit name). Unfortunately, however things aren't quite working out here as we would've hoped. I therefore write to ask respectfully to be placed on the list for a transfer to (name preferred destination, and any alternatives you have in mind. Note that this could be back to the main unit to start the process again. This is a good idea to offer as there will always be somebody ready to transfer to a Satelite unit from there).
I would be very grateful for a fast response in this matter.
Thank You again for this opportunity and your kind consideration.
Yours ...("faithfully" if you've never actually met. Otherwise "sincerely" is the norm.)
AND TYPE/ PRINT
Allow a week or two. Note that showing gratitude indicates that it is not your intention to take things further if you can possibly help it. Compare that to two years of being labelled trouble and having to wrestle with the system! I'm writing this in the hopes that others don't have to learn the hard way. Many things have happened since that didn't happen before I went to my home towns unit. But despite being warned independently by an expert 'complaining gets you nowhere'. I just wasn't privy to the less obvious alternative. -as above.
Some relevant background information
My own story isn't without tradgedy. I've had to install internet cameras, alarms that dial out etc. Simply because untrustworthy people got hold of where I live, how I live, learned my gentle personality -this is an incentive for cowards protecting themselves from repercussions. I have written much about this in another blog. So the following is just a sort of update.
One day in the midst of all this. I happened to pass an old flame in town. Though she called out for me, I was very aware that I could inadvertently bring her into the trouble that had leaked beyond the walls of dialysis. From what I and investigators gathered, the way the crime syndicate work; they like to find vulnerabilities among friends, they will cause problems to any-one they deem vulnerable, but particularly like adding as much misery etc. as possible to those they have in captivity. And the nature of dialysis is quite captivating!
Anything that would serve to isolate the person is also appealing to any-one with criminal intentions. The patient whom would be ready to calculate that such must be part of the new situation even though strangers are turning up, this being since the move to the unit. Therefore be very likely to be something to do with the placement. And relating this to their loved ones can therefore scare them away. Especially those who deem they don't need to be there anyway. In effect causing much isolation.
Considering that being on dialysis is already very stressfull added to that the fact of the life threatening illness. Not only the strongest relationships but the strongest people survive. I've never been any good at relationships! And my would be love is a precious and delicate flower. So I just walked on by as though I didn't hear.
Later though, another encounter and I overheard my being called a "Div" (aka. "idiot") and so this writing is an attempt to make known that which I could not tell her. (Not least because it has taken several bloggs, and private counselling to figure out). What else could I do? She has a boyfriend now from what I gather, and I hope he can give her everything she needs, where as I cannot.
The 'war' has calm spots but my name seems to be on some sort of syndicate list as skirmishes do still occur from time to time some 4 years since leaving that place. And I can never be sure whenever I meet a stranger that they don't already know more about me than would befit the term "stranger".
Don't have nightmares. These happenings don't occur everywhere. And if you've read this you will be going to dialysis with a more prepared mind.
some of My further writings on the subject
- Why I refused Transplantation
Despite the NHS debt being so severe, there is much money in operations for doctors. A Clinical error may be an honest mistake, but who knows how much more funding it will lead to?
- Whose choice is pallitive care?
An old man says
- health and fitness with dialysis
Awareness is key to success. For Instance, many health, weight gain etc. products contain potassium, a problem for most dialysis patients because this builds up and can be deadly in high doses.
- Scrutiny & Security and Dialysis
My genuine experiences of a rogue unit. Despite trying to leave it took two years to get out. Then I ended up somewhere potentially as bad. I am now free and live -well enough- to tell the tale.
- Coping with dialysis: Secrets revealed!
Facing dialysis for the first time can be hard. The first few weeks are the hardest. Patients, relatives and carers alike will find some new insights here. A demistifyer for renal new comers.