Coping with dialysis: Secrets revealed!
"Arm yourself with knowledge..."
How I've coped thus far with this illness
Imagine going into a new place, having been told that you will be undertaking some treatment for several hours, in a place where your knowledge, experience of what goes on is very limited. It is a very daunting thing to go into. Similar to the first day at a new school. Now there is a guide that will be just that, like a helping hand on your shoulder to -with other blogs- help the patient integrate more smoothly into this 'new world'. I feel in writing this, while not wishing to scare people, it is better to be honest. -To highlight the 'warts and all' approach. At least that way there are fewer surprises! There are many references to other blogs, and sources of information so that rather going round in circles rushing to find help but not knowing where to look, information, help and advice is already at your finger tips. This blog on kidney disease is inspired by 'Kidney failure and Dialysis - the psychological aspects, by Sofs'.
Looking back I wish I'd formally requested they leave my weight alone. "Ultra Filtration" or "UF" for short. This goes with an old joke that has become so common place it is said with a seriousface. When you show symptoms like cramp, dizzy or tiredness, being sick/nausious, 'going off' (trying to visit the afterlife! ..This is a peaceful feeling of "is this it?"), etc.
I was passing normal amounts, the nurse did ask this question, only not being used to such subjects as are commonly talked about with this illness, so I hesitated and she was taking very big amounts off from day 1. I was unprepared, but will consider it something if those reading this new to this strange world of hospitals are more prepared than I was.
Cammorarderie? All in it together?
It isn;t always about sticking together. Sometimes breaking away is seen as a challenge to this. And so camorarderie isn't always about people being understanding and accepting but occassionally pressure or nagging! Now, I have a brain, though no-one seems willing in social constraints to acknowledge the fact. And though it took years, when I eventually worked out that tampering with a persons natural weight -making it lower is what prevents urine production. My big regret is not stopping this practice on me as it was daunting. You want to trust that the staff know what they are doing, but realistically if they did know everything there'd be a cure or at least D. would be a once a week think for 3or4 hours max. and with a more gentle /slower blood flow. (the rate at which blood is pumped through the machine.)
Also the camorarderie itself can be quite a challenge, if you just want to be left alone, to sulk, or to your own devices. It is best to mention this to some-one. You will hopefully find before long those you can talk to, and who are helpful. People are usually happy to answer any questions you have.
Every-one seems to hate it when the transport is late. And people who bring themselves in are take on that responsibility to be always on time for their appointment -"slot". Be prepared to wait if you're not, make this rare. And know that people who were on time will be annoyed if they have to wait for you!
4 hours is a long time!
Whether it is the cryptic crossword in the paper, or your favourite magazine to read. When your not wanting to sleep it is best to have a back up. Some take in hand held games consoles like a DS. Or a portable DVD player, or even laptops -though be very careful in suggesting that you have money, something worth taking etc. As the hospital won't take the responsibility if something is lost/stolen! And people put into groups are invariably a mixed lot at best!
Music: A Walkman of some kind is a good idea, as music will drown out the machines beeping, which they invariably do! And other interuptions like others talking etc. allowing you to sleep through it. Though I have picked up a lot of information from nurses talking to patients or each other -sometimes it has led to my own questions. These don't get rebuffed even in the worst units, though the answers may vary (see security and dialysis, days leaper -me!)
Refreshment: Sandwhiches / toast may be provided, with a cup of tea. In notoriously small cups. You may wish to use 200mls size cups at home so as to take on less water, esp. if your urine /"water output" has stopped, or is significantly reduced. But taking your own snack besides is usually tolerated. But NO ALCOHOL! And Smoking is obviously banned.
HUMOUR: Once you've got used to the surroundings, and new routine a bit. A sense of humour is important. Whether to laugh along, or/and include your input when you get to know the people abit.
MIS-PLACED: In the early days, you are most likely to be at the main hospital to be assessed. In a few months, quite soon you are likely to be approached about a Satelite Unit nearer to home. This helps with travel cost, and shortening your day a bit. As well as allowing for new patients to be assessed. The hospital will take time to ensure you are stable on dialysis before suggesting a move.
Sometimes being near to home is no substitute for feeling out of place in the unit. At that point I would suggest a letter to the head/main office at the main hospital that simply states that "Regrettably, things are not working out here. May I request to be moved to ...(your prefered destination) as soon as possible..."
This is better than complaining. I made the mistake of saying exactly what was going on, and forgot to be clear as to what I wanted done about it. Don't expect staff to be sacked, or even warned. It is supposed not to be a punitive environment. So the next nearest unit may be requested/suggested. All units are not the same, though unfortunately, there is a drive to make them so!
At The Unit: You will be told which bed you're in for the session. Although you will have been prepped by a nurse a few days before you actually need to dialyse. You may ask the nurse when this is. You're put on the machine, the alarms are very responsive. And you get to know from the attending nurse some of the reasons they happen, and gradually what to do about them. The more you learn, the less you will need to buzz the nurses!
Diet: I find this very stifling. Do not be afraid to treat yourself. I said from day one that no-one was going to stop me eating chocolate! And they haven't. In fact I stopped the dieticians coming when one tried to continually point out that my phosphates were high and I know this doesn't help. But neither does being forgetful, and getting to the cafe and finding the carry case to be empty! -I said no-one ...nothing will stop me!
It is possible to go many years with this type of treatment. And there are alternatives each have their own pros and cons so it is well worth researching thoroughly before making a choice. Make sure you are ready first! (eg. If you have pets/children then d. at home may not be the best idea,..)
THE HARDEST BIT TO TALK ABOUT: Pallitive care: As I said it is possible to go many years on dialysis. And while this is true, it would be neglectful of me in trying to prepare you for the major life change without any attempt to warn that people currently die on dialysis. The first time I witnessed this, I was quite shocked and upset for a time. If your unstable on dialyzsis -or unable to be stable at your required prescription & have no relative dependents. -some feel they are a burden and so must/should discuss with relatives and friends all the available options.
Chronic renal failure is life threatening at the end stage so it is worth sticking around to this, and not doing anything stupid because simply ending treatment will lead to loss of life at this stage. If you feel you're on your last legs, and the doctors agree, you may prefer to die at home. Ensure all your loved ones have plenty of time to prepare themselves. Consider how you will pass your things on when you've gone.
I also prepared a "Living Will" as I don't want to be dialysed should other problems occur as they sometimes do in life. So that if something happened and I became unable to communicate, my wishes are known. I also went to the trouble of preparing my funeral service. I had to pay for this myself because I had no Insurance, and you can't get any when ill. (Strange how life has a way of not giving you things when you need them!)
Exercise: Important, no imperative! The units that have chairs with bycicle pedals and a physio (requires a budget) are the envy of such as I, having come through the tunnel of learning the hard way as to why exercise is so essential. It is said to be "as beneficial among renal, dialysis patients as it is for healthy people".
(see. Video: Active Treatment, national kidney federation.)
Isometrics: AKA. Exercise without weights, stillness, pushing/pulling against immovable objects.
currently on the market is.
"The complete book of Isometrics, O'Driscoll, Healthy Living books"
I was lucky in finding what may be an out of print book on the internet.
"How to exercise without moving a muscle. Isometrics for everyone, Vic Obeck,
Access for Dialysis:
No, not a government training initative! The term refers to the method used to get the blood from the body-and return it. To my knowledge, there are three main types. For a more thorough guide than I can give refer to 'Kidney, Dialysis and Transplants, Dr. Andy Stein and Janet Wild. When the Creatinine in the blood reaches about 800. The doctor will want to proceed with making a fistula. A process done with local anaesthetic to join a vein to an artery, so that the blood loops back early so to increase the vein size. This is because the length of time required to dialysis requires the vein to be a suitable size for blood to flow. The vein will grow in 6-8 weeks if you keep the surrounding area warm and don't put pressure on it -like lying on it in your sleep!
Over time these can fail, so look after it as I said! I had one that failed to form on the wrist. So they had to 'put a line in'. These work instantly but have extreme hygiene precautions. You MUST keep the area dry at all times and free from infection!!! The doctors will insist, manipulate ...And generally do anything to pursuade a patient to get another fistula higher up the arm. In me three or four failed, they got to the elbow.
Unknown to me at that point, they cut away and leave to shrivel and die the part of the vein lower down the arm that they don't use. I had been told there are two main supply routes, in the wrist and fore-arm below the elbow only one of these is lost. Above it both are lost and while there are peripheral supply routes to the hand. ...These in me weren't very good, and I got "Steals Syndrome" and it seems the fistula is the 'all important thing', I would say "dialysis at all costs" seems to be the medical motto.
And because the fistula grew too big (risk of bursting, this would require graphting to replace vein). I really did have an absolute war campaign on to get it tied off before it burst. My own thoughts on the subject are that if surgeons found a way to preserve the 'bit they cut off!' that it would be easier to undo, that this MAY prevent the sub-conscious process from the 'I've had enough of this' feelings. And might in reversing allow to let the body get back to normal. And in so doing rather than be thrown away, forever unuseable it might be rested. It is a point of camerarderie for those who have had 7 or 8 fistulas to be reveered.
To me, I cannot help remembering what Oscar Wilde said about Parents! "To lose one ..is unfortunate. But to lose two .. is carelessness!!". So I insisted, at my own risk! upon a line. They still don't understand why I won't change my mind. But it isn't there body and mindset that has to go through and put up with it. Take note: These are my own personal views, and I cannot recommend in any way that others subscribe to it. Though, in explanation, I can say that dialysis to live is far better than living to dialyse!
Another coping mechanism is the crusade to make things better. Both for self and others, including future generations. The quickest way to do this is to ask what research is being undertaken in the area. Don't take part in something which you think will be too hard. For example, if you have children to get home to, check how long you may be kept behind for tests etc. Just a thought. I remember getting a letter asking me to take part in a survey. At the time I had much on, besides the realisation and resultant down beat feelings that my new way of life would have to be catered for to survive. So I said No, as it seemed like extra work. I haven't heard anything from the doctor since -who seemed a nice chap. And until now, I didn't think to ask for his secretaries number from the main hospital switch board! It now seems simple, they're just waiting for me to let them know if/when I'm ready to proceed. The only department that hasn't pestered me and I've forgotten it! This shall be dealt with in ernest!!!
Why doctors, nurses think they are right in arguing with a patient/s who feel they don't want this or that doing. Or doing that way, or perhaps they need something else. Seems merely to do with making the job easy. Usually all a patient is trying to say is the ongoing occurrence of this (or lack thereof in some cases) will contribute to ongoing discomfort, stress and/or whatever in my life. The staff argument is less convincing in my mind, a sort of "we do it this way here", or 'this is universally recommended/the rules'. Remember to every rule there is an exception. And as you will tend to have to keep repeating dialysis somewhere or other, and seeing that it can be quite hard to get a place. It is important to be happy! I found my third unit after the main was within a reasonable comfort zone.
Transport, Access, ... are a limited list of the possible rows.
You will have seen the posters "Violence towards staff will not be tolerated", this always strikes me as a way of saying ...therefore we can do what we want and you are powerless! For instance you won't be likely to see posters saying "violence to patientswill be tolerated"-or even "... dealt with"! or even "We take patient care very seriously (or seriously at all), please contact... -in the first instance- if you are unsatisfied in any way with your treatment. (foresiesious: And we will make every effort to replace the guide dog of the staff member in question! -you may change this to 'interpreter', 'hearing aid' etc. as to however your humour is suited)..."
No, what you do get is "The trust cannot be held liable for...", you get a multi-layered drawn out and extremely lengthy complaints proceedure that only then sparks the response that should've occurred in the first place!
It took me years to get used to the bullying -Sorry! "Assertiveness" of some people. But their are people I have met that might well have made it worthwhile, that is if it wasn't for the illness itself. Lines versus fistulas is a big area of conflict. I'm told some hospitals like them, typically miles away from me -of course! This took years for me to get through to them that I wanted a line and understood the consequences. By then the damage was done and I felt manipulated, uncared for and somewhat numb that this could happen in a so called "caring" -controlling- profession! Is my experience unique, I wonder?
Saint verses Sinner, or rather middle of the road normal person who just happens to earn their living as a nurse/doctor. I am not saying don't respect them. Always show respect, but it isn't rocket science to connect some-one to a machine, in all truth it is simpler than being a car mechanic. The inventing of the machine was the 'rocket science'/ingenius bit.
Borrowed Time versus "I'm not having that attitude" (no alternative was offered ..."Life's for living"?? It reminds me of an argument I had with a doctor when my fistula looked ready to burst and they were pushing for every last second of getting blood out of it. Knowing that I don't want to spend any more time in hospitals, travelling, waiting to and from etc., etc. so more counselling etc. was out of the question for me, yet knowing that my arm would be in a worse state affectively putting my mind in a state of disrepair to say the least. Years of arguing, pleaded, begging not working, I decided to give the very real threat of ending treatment (and telling every-one why I had). The doctor hit the roof; I didn't remind him that he was the doctor who I saw after my first fistula attempt. He was the person that turned the 'doppler' (equipment to see whether there is blood running through the fistula: These are preset, I suspect so as to give an accurrate rating. Well, the setting he put it on must have heard the air coming in from the window at the other end of the room! -Or passing through my ears or something...) therefore his opinion wasn't going to sway me much (though he is a likeable person -unlike some!). It took the buscuit he was trying to say I was suicidal, I was trying to say my life wouldn't be worth living if they didn't prevent the inevitable. It took me so long to get through to them that the vein is still enlarged, though not as much but still has two aneurisms so still has -albeit a reduced- risk of bursting!
I try to keep in mind that no treatment is any substitute for good health. Having said that if I die I don't have to dialyse, though I still pray for a miracle on the lines of statues crying and Angels singing! -And my kidneys getting well- I've blogged much of why I don't want a transplant.
Caring v. control & watching people suffer:
People won't like this, but while their are those who care genuinely wanting the best, (still sometimes confused with what they consider, have been taught what is best) for patients. There are those in certain places, and even high positions that seem to like to see others suffering, like a sick curiosity, satisfaction seems to come over them. It is said of child abusers, paedophiles seek positions of power in order to gain control over children. It's all cowardice, (but is it cowardice to shirk it?: A question for a different subject/blog!). Those gaining power to exploit the weak, those worse off than themselves.
Coping methods are letting people know you don't get on with a person (though don't insult them unless you are looking for some kind of war). Transport has an exclusion list (for both staff and patients) for any-one who doesn't get along. Although try not to let it get to that!
Types of treatment to look up: I say 'look up', -if you can find it- as there is so much to know. And I don't claim to be an authority on the subject, just a patient trying to help another. Staff can read it if they want and maybe it will help them hopefully become even better than they are.
Haemodialysis (the main or initial type of dialysis), PD short for Peritoneal Dialysis (see also. CAPD); I was put off this, some-one said "it is a precursor for a transplant", and the peritoneal in the stomach wears out eventually. The ideal, for me would be nocturnal haemodialysis at home, but you need some-one with you willing and trainable to put you on and take you off the machine, there is a contact should things go wrong, and people have been weaned off most pills and feel much healthier according to reports (Kidney life, magazine for renal patients)
Finally, I have heard of such a thing as "Self management" though I couldn't get much more out of the person. He did say that people on dialysis tended to live longer.
And Palliative Care: For those who've "had enough" and want to leave this mortal coil as gracefully and painlessly as possible. Usually only 'allowed'/reserved for old people, or those with so much else going wrong/wrong already that every-one agrees or at least quashes argument to 'life isn't worth living anymore'.
"A transplant is a miracle cure". No! The doctors say that it is to be seen as merely a holiday from dialysis, it is unknown how long the transplant ("Tr." from now on) will last, or if it will work at all. And despite all this it is still a major operation requiring many weeks in hospital to get 'over'.
"You can't even have a holiday!" Not true! You can but it will take a lot of organising with your dialysis unit. Several months as things need to be approved. You cannot fly with high blood pressure. I'm not sure about dialyis cruises, but I am sure they exist. You do need to be staying within a reasonable distance from a unit that your unit will book the visit with. So you will have to make sure both dates of visits to your destination coincide with your treatment. Some destinations require quarantine for many weeks upon your return, this is a safety mechanism for every-ones benefit, but may require you return to the main unit for a time.
-I've been excused from funerals because relatives were adamant not to wear me out with re-arranging, (or deciding, without asking: Never be ashamed to ask, usually something can be arranged)
"This is a drinkers disease!" Unknown? It is true alcohol and junk 'foods' have an impact on the system and that many a patients 'like a drink', there is no evidence/no research has been done on this possibility. -And why shouldn't we enjoy a drink?
Helful organisations: (UK)
National Kidney Federation: In your search engine type "nkf"
The British Kidney Patient Association, Bordon, Hants., GU35 9JZ 0845 6010209
Feel free to ask questions in the comments boxes provided. And I will do my best to answer/refer. Note that I am a patient rather than medical staff. And you will most likely know some-one, a department at your hospital set up to answer these. Try them first, if you can and read others comments and the links first.
The Research starts here (unofficial)
Please take part in the following polls. Aimed at answering the question "Is this a drinkers disease?"
units of alcohol
- How to Give Up Alcohol
On the day you may wake up and realize you have been feeling very sick for so long that you cant remember what it was like to feel healthy, peaceful and happy, you may suddenly realize that it may be...
- 10 Tips For Living Drug, Alcohol And Smoke Free
Are drugs, alcohol or cigarettes ruling your life? Have you tried quitting only to pick back up again -- even though you really, really want to stop? A healthier life awaits you. You can do it -- I promise!...
Is Renal failure (AKA. Kidney failure) the result of too much drinking?
How much alcohol did you drink before diagnosis? (units per week)
Since diagnosis. (intake in units)
Have your habits changed since diagnosis? Please state how much
Most common drinks among renal patients
Which drinks do You prefer?
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