Managing Persistant Tiredness

Dear Doctor Agar.

I was confirmed with CKD May last year and the Nephrologist said that it would be about 1 year to 18 months before I needed dialysis. Whilst I appreciate it isn’t an exact science and each case is individual, and I realise that it will happen in due course, I would like to seek some advice on how to deal with the permanent tiredness.

I’ll add some back ground for you. I work full time and my wife is a midwife. We have 2 school age children who we take in turns to take and collect from school which is a 45 mile round trip. My wife works early at least 2 times per week and is often called out during the night so it means of course I need to take the children to school when that happens.

I don’t sleep well and wake at least every 2 hours during the night. Some times I go back to sleep straight away and others take some time to get back to sleep. In the mornings my wife will wake me so I get up for work and when my wife works early then my eldest child will set her alarm as well as me so that we all get up for the school run.

I only realised today that more recently I’m getting up at the last moment and missing out having breakfast with my children because I’m so tired, they made the comment that it would be nice to have breakfast together again. When I get home from work I need to rest for about an hour so then I have enough energy to carry on for the rest of the day. So now it’s obvious the tiredness is affecting the whole family.

I appreciate that now is the time that I really need to start to manage this properly as I don’t want the life of my family to revolve around my illness or for it to take over their lives. I would therefore be grateful for any advice you could kindly offer.

This is not a question about dialysis as I’m not that far down the road yet but as far as I’m aware most of the people have been through it and there’s no where to ask about pre-dialysis or build up to dialysis questions

Many thanks

Shaymon

Answer re-written (23.3.10)

Dear Shaymon

I re-read my 1st answer and, though I haven’t changed anything of substance, I found lots of spelling errors and didnt like some of the phrasing I used and so have replaced it with, I think, a better written version … so here goes …

I first thought to make a rather glib response to your initial post … “that if I had as much in my day as you have in yours, I think I would be feeling tired too!” … but, although you do have much on your plate - not only all your day-to-day activities but battling with CKD as well - a glib reply like that would be superficial, unhelpful and disrespectful.

Your problem is far more than just that … you know it and I know it.

While it is important to recognise that your list of daily activities will not be making your CKD any easier, CKD has a profound effect on the body and produces exactly the symptoms and the feelings you describe and struggle with.

The ‘abiding symptom’ of chronic kidney disease … it is almost universal … is tiredness … and the worst thing is that outwardly, you probably look just fine!

To others, even to your family and closest friends, it must seem like there is little wrong with you. It can be very difficult for family and friends to fully understand just how flat and exhausted you really do feel inside and yet how relatively well and normal you outwardly appear.

Though I have never experienced renal failure, I do now have some sense of how my CKD patients must feel … how they wake in the morning, feeling okay and thinking “today seems like it might be a better day” … but then, by the middle of the morning, how they feel ready to ‘pack it in’ and take to bed, exhausted and desperately in need of rest. I understand the rage they must feel at feeling so flat and 'stuffed’ on the inside yet, how from the outside and to others, they appear no different at all.

The medical description for this is ‘lassitude’ or ‘easy fatigueability’ … a little like John Keats ode: “… and a drowsy numbness pains my sense …”

To know that the day must go on, that there is 'stuff to do’, but that you will literally have to force yourself to complete a seemingly endless number of tasks with little or no energy to do so, must be so frustrating.

It is an awful feeling and one that only you can fully understand. Then, at the end of the day, when thoughts of intimacy may arise, there remains little or no energy (or inclination) left for that either.
This can be so very difficult to explain to others and sometimes, most of all, difficult to discuss with a partner. Then comes the thought of having to go out, socialising or mixing with friends … doing the things that partners or families usually do together … can seem almost impossible.

You have not told me about the cause or the treatment of your CKD or its severity. These factors can be important. Some kidney diseases, for an example some types of nephritis like ANCA-positive vasculitis, can super-add a profound weakness on top of the underlying effects of CKD itself. Diabetic nephropathy may be complicated by an autonomic neuropathy and postural hypotension (when the blood pressure falls after standing erect) and this may add to or magnify the lassitude of CKD. Some medication can significantly affect the way you feel, particularly some blood pressure pills. Knowing more about this would help determine if factors over and above the CKD itself are contributing.

Sleep can be disturbed in CKD. If you are overweight – and sometimes even if you are not – obstructive sleep apnoea can occur. This is a condition where oxygen levels fall during sleep – this is often but not always associated with snoring – and it is much more common CKD patients when compared to its rate in the general community – regardless of the presence or absence of obesity.

Sleep disturbance from night-time cramps is a very common problem in CKD with many (if not most) patients with advancing CKD complaining of nocturnal cramp. These can further deplete the quantity or quality of sleep and add to the causes of day-time exhaustion.

But, it is likely that the CKD itself is mainly to blame.

Why so …?

Mostly, the answer lies with the progressive anaemia that occurs with progressive CKD. Though you have not told me your eGFR, broadly, the lower the eGFR, the more significant will be the anaemia. Though this rule of thumb is not always true, generally as kidney function fails, so to does EPO production by the kidneys. Though EPO can be produced by other parts of the body – particularly the liver and spleen – in usual circumstances, the amount of EPO produced by these organs is minimal. The kidneys are where EPO is at! Though production can increase a little at these ‘other’ sites, as renal EPO production falls, a loss of eGFR means a loss of EPO.

In addition, for a number of reasons, the bone marrow (the ‘factory’ where our red blood cells are made) becomes progressively more resistant to EPO as the eGFR falls. Thus there is a ‘double whammy’ … a falling production of renal EPO and an increasing resistance of the marrow to any EPO that is still being produced.

But, like those late-night ads on television tell us “… but wait, there’s more!”

As kidney function falls, there is a progressive rise in ‘hepcidin’, a substance only discovered in ~2001, but which we now understand to be the major controlling mechanisms for iron absorption and for iron uptake and release by cells throughout the body. This includes the cells that line our gut and which absorb iron from our food. The reasons why hepcidin activity changes in CKD are complex but, suffice to say, that the combination of CKD and rising hepcidin levels leads to a reduction in iron absorption from the gut in patients with CKD.

In turn, iron is essential to red blood cell formation and, as iron absorption is reduced, subtle but significant iron deficiency results … and, of course, iron replacement by ‘pills’ won’t work very well as any iron delivered to the gut – whether by food or by a pill – won’t be absorbed. This is why iron is most commonly given intravenously in CKD patients. The iron deficit diminishes the availability for iron to be incorporated into red blood cells as they are made in the marrow – haemoglobin is, as its name suggests, an iron-based pigment) is yet another problem.

Once on dialysis (not yet your current problem), some vitamins (particularly those that are water-soluble) can be depleted too. This applies chiefly to theB and C group vitamins which, being water-soluble, are therefore ‘carried off’ across the dialysis membrane during dialysis. Of particular importance are folic acid, pyridoxine and the other vitamin of the B group and vitamin C. These commonly need to be supplemented in dialysis patients. This is not a current issue for you yet but may be something to remember if and when you start dialysis.

In addition, subtle changes can occur in neuromuscular function in CKD. These include changes in magnesium, sodium and potassium ‘flux’ and availability, especially at the nerve ending where the neurone (the nerve cell that makes the muscle work) interacts with the muscle cell (that contracts under the ‘instruction’ of the nerve cell). Changes in the balance and bio-availability of these ions can have a significant effect on muscular function and strength.

The most likely cause, however, of the tiredness you are noticing is the slowly developing anaemia of CKD - certainly the most common cause of lassitude and weakness in most CKD patients. The solution to the anaemia of CKD is usually the addition of erythropoetin (EPO). Though EPO is clearly not the panacea (or cure-all) for all CKD symptoms, it is often results in major symptomatic benefit. But … if your government is like ours, there will be a set of qualifying ‘requirements’ that a patient must fulfill and a physician must attest to before EPO can be prescribed and administered.

In defense of both government and doctor, these limitations are appropriate. Not only is EPO very expensive (the government concern), but EPO is not the answer to all CKD symptoms (the medical concern). However, in Australia at least, if the Hb is <10, a patient qualifies for free EPO – or does so at a higher Hb there are significant and agreed other factors, such as symptomatic ischaemic heart disease.

Your doctor will be able to advise you about your Hb, about any ‘local’ rules that may apply to EPO administration and availability and whether EPO is appropriate in your case – that is, of course, if you are not already on it.

However, there are two caveats.

(1) there is always that uncomfortable ‘gap’ when the Hb falls through the 11s and 10s (where the symptoms of anaemia and tiredness begin to become significant) and yet the EPO-qualifying ‘magic Hb’ of l<10 has not yet been reached. This is a ‘no man’s land’ where symptoms are emerging from CKD-related anaemia but the Hb has not yet reached a low-enough level for EPO to be prescribed under prescription limitations.

(2) not all symptomatic tiredness is anaemia-related. Thus not all patients will get symptom relief, even if EPO is given and the Hb rises and the anaemia is ‘fixed’.

Most importantly, you must discuss this with your doctor. He/she will be able to tell you whether or not any of these factors apply to you, as an individual.

Next, you must discuss how you feel – and the reasons why you feel as you do (see all this discussion) – with your family. They need to understand that your tiredness is not due to a lack of interest, a lack of effort or a lack of ’ wishing it to be otherwise’.

This also applies, possibly or even probably, to your libido in moments of quiet intimacy. A lack of libido can sometimes be misinterpreted by a partner as a lack of interest or a lack of loving. In males particularly, the inability of a man with CKD to attain or sustain a quality erection (this is common in CKD alone but is often made worse or nearly impossible by certain medications - like BP pills) can be misinterpreted as disinterest or as ‘you don’t love me like you used to’.

Problems like these can become hugely stressful, often in unspoken, un-discussed ways, and can subtly eat away at an otherwise strong and previously robust relationship. Usually, nothing could be further from the truth but sometimes small things sow seed in the wrong ground. You should openly discuss this (if it applies to you) with your wife - particularly if you have noticed any change in your libido. She must understand that the suppression in libido is caused by failing kidney function and not by a change in heart. If this is (or becomes) a problem for you, discuss it openly, both as a couple and with your doctor.

From your geography, Hertfordshire, I note that you live near a dear friend of mine, Roger Greenwood, who is at the Lister in Stevenage. He is one of the great CKD experts in England. If you happen to be referred to Stevenage, give him my very best. He would certainly look after you well.

I’m not sure whether I have been helpful but, the most important thing to remember is that the tiredness you are feel is ubiquitous. All patients with CKD feel it. All complain about it and all wish for a solution – both patient and physician alike. Although EPO has made a huge difference – especially when CKD-anaemia is a major contributor – lassitude and easy fatigue remain problems for all patients with CKD and the correction of anaemia, though useful, may not always solve it completely. Attention to some of the other issues I have mentioned may also help.

Most important of all remains a true understanding of all this from your nearest and dearest. This is the core essential that will enable you, as an individual, to best handle and manage this distressing side-effect of CKD as effectively as possible.

In your case, I think you should seriously consider how you might ‘re-pack’ and rationalise your day-to-day workload. You do seem to have a lot ‘happening’. Sometimes a third party (like a counselor) can see ways to change your life-patterns that you may not see … it can be a ‘can’t see the wood for the trees’ situation. At least discuss this around the family dinner table. ‘Change your day pattern’ is easy for me to say but not so easy for you to do – particularly as you have a young family – and while I would urge you to try to seek your own ways through, third party help maybe worth consideration.

I have not dealt with all the factors: these are too numerable to manage to cover here. However, I hope I have given you some insights into why you might be feeling as you do. Remember, you are not alone. Other patients may confirm similar experiences to you. Saying this wont help, but it will serve to give you and yours some reassurance that your tiredness IS your disease speaking. It IS common. It IS what others feel too. And, it IS manageable and reducible - if not completely eradicable.

Good luck - and my thoughts go with you …

John Agar
http://www.nocturnaldialysis.org

Where do you like to see Hgb for female patients.? Here it has to be between 10-12. Now that I am on nocturnal, I take only 1,500 units epo/week which can hardly be seen with the naked eye in the syringe since I give it 3x/week in 500 unit doses. I believe I would not need any epo at all if it was not for the dialyzers we use that continually have blocked fibers. There is too much blood loss at rinseback. It seems to me that everyone should be seen as an individual case. It is possible for my neph to apply for me to be allowed to get a higher Hgb, but medically speaking, would it be better for me?

Dear Jane

I come from Australia, not from the US. Different conditions and views exist regarding many management issues and practices - including the management and targets for EPO and Hb - country to country, around the world.

Shaymon19 asked, I think, a general question regarding the sorts of things that might explain his tiredness as he slides through CKD towards dialysis - a question to which I have given a generalised answer, as best as I can. As for the specifics, as I think I pointed out in my answer to him, these vary … from place to place. I was vague in any prescriptive answering on purpose - giving a broad-brush answer to a broad-brush question.

I would suggest you discuss the issue of Hb targets, EPO dose, and any EPO dose confounders as they may apply to your specific circumstances, your specific equipment and your country’s rules, regulations and practices, directly with your team.

They are better placed to answer your questions and concerns around these issue than am I.

John Agar
http://www.nocturnaldialysis.org

Jane … one thing more to say

Broadly, I am a ‘higher Hb’ believer … and I prefer, for most patients, to still shoot for up to 12.0-12.5. A paper out in NDT this month (March 2010) from Ian MacDougall and the UK Registry seems (again) to support this view.

I am concerned that much of the lower Hb argument in the US has been driven (or under-currented) by economics and, despite Choir and Create (which, in my view, had several methodological and statistical problems), there are some here and elsewhere outside the US who have not fully embraced the low-is-good argument - except, perhaps, in selected patient populations.

The target-Hb and EPO-dose debate is long, complex and on-going and it will not serve any purpose to try to ‘opinionate’ it further - I am simply stating one nephrologists’ view (mine) of a complex, muddy and still-to-be decided issue. Though I am aware there will be strong views both ways, it will not be useful to the majority of patients (and may simply add to the general confusion) if I try to explore the issues further at this site.

John Agar
http://www.nocturnaldialysis.org

Hello Dr Agar,

Firstly let me thank you for such a lengthy reply, I’m sure that you have a busy schedule so I appreciate your time to respond to me. Some of what you’ve written is like a foreign language to me but with the help of this website I’m gradually getting my head around it.

As you noticed I am being treated at the Lister hospital, which again as you know has a very good reputation for its renal unit, so for that I am grateful. If I see Dr. Greenwood I’ll gladly pass on your regards.

I didn’t give too much information in my original post as I wasn’t sure what you needed and besides I don’t have all the information you would require. I do have an appointment at the renal clinic tomorrow so now thanks to your reply I can go ‘armed’ with some questions, which will give this information and will have some idea about their reply. I also have a better idea of the information I should be imparting too, so it has been helpful.

As far as the tiredness goes, and I know its not going to go away, I guess I’ll just have to live with it and bear your words of advice in mind but again armed with the information you gave I can get the doctor to help ‘manage’ it too.

Your reply was reassuring although its not a road anyone voluntarily goes down the odd bit of guidance is a ‘satnav’ to an assured destination.

Again thank you for your time.

Shaymon

Something interesting I realized the other day is, I have not required IV iron the entire year I have been on nocturnal. Is this an improvement that nocturnal brings or is it just a coincidence that I may of had better EPO/iron management?

Also, I’ve wondered why it is that some on dialysis can handle a full time job, whereas they may get fatigued, whereas most can not even begin to hold down a job?

Dear Jane

I suspect your observation about your iron requirements has as much to do with better EPO and iron management as anything else … with your overall improvement in well-being and the dietary benefits that flow from and with that, and the already much demonstrated reduction in EPO requirements that accompany NHHD, not just in you, but in others too.

In addition, I would love to be able to comment on what happens with hepcidin in nocturnal dialysis but I am not aware that anyone has studied this in depth. It is intriguing to think that hepcidin down-regulation might play a role … perhaps in allowing better iron uptake from the gut and/or better iron utilisation … but I dont think we know.

As for the observation about fatigue, dialysis and the ability to work - though I vaguely remember having gone over this a number of times now in these pages - here it goes again … !

Nocturnal (during sleep) dialysis

As I hope you know by now, one of the benefits of nocturnal dialysis is that dialysis occurs during sleep.

As a result, the treatments can run twice as long.

This means that the removal of solutes and fluid is slower.

In addition, treatments can be undertaken more frequently.

This permits the accrual of even greater solute and fluid benefits.

The combination of all these (and other) factors is believed to make dialysis a far gentler process.

But, dialysis during sleep also permits full day-time freedom.

This means a nocturnal dialysis patient not only likely feels better, but has the time-opportunity to work if he/she so desires.

Daytime conventional dialysis

Conventional dialysis during the day takes up the awake hours … the time that might otherwise be used for work.

Dialysis during the day is bazooka dialysis … a “wham, bam, thank-you ma’am” version which leaves patients drained from its speed and brutality.

Recovery time after nocturnal dialysis is short and is measured in minutes but recovery time after short, infrequent and brutal day-time conventional dialysis is long … if really ever (Bob Lindsay’s work from London, Ontario).

Is it any wonder there is a work-ethic and work-capacity difference between the two?

Dialysis, fatigue and work

As for your ‘observation’ that some dialysis patients work and others do not … some people (note: people, not patients) will work, or toil - like Good King Wenceslas - whatever the burden(s) they face … whether that be dialysis or any other obstacle. Others become so weighted by life circumstance, by disease and/or its treament or by other factors in their make-up or their environment that work becomes an impossibility. Many others of us fall some part of the way in between.

But, isn’t that what makes us all different? It is not just dialysis … it is many things. Some of our dialysis patients work when we’d never have thought they could continue to do so. Others don’t work, when we might have reasonably thought they might.

The point about a nocturnal program is that it at least gives the patient a better chance to work … by, broadly, (1) lessening the burden of symptoms and (2) freeing up the day-time hours so that there is a better chance of finding stable and full employment.

For the different approaches that we humans have to our problems, as individuals … whether it is dialysis, cancer, or a host of non-medical circumstances too … I have no answer nor explanation.

But, it is much of what makes us human.

We all see things in different ways, different lights, different perspectives.

That, in my view, is kind-of-nice!

Long may it stay that way.

John Agar
http://www.nocturnaldialysis.org

Shaymon,

I am glad you have found this site, as you have seen already, by Dr. Agar’s very thorough response, there is a wealth of knowledge, moreoever support here.

While somedays I feel like I have a medical backround, I must openly admit that I don’t… that said, I have been a hemo dialysis patient for 5.5 years and have had much to learn about balance. What struck me most about your post, was the issues you face with fatigue, a young family, and the demands of that life style. That is something I feel very qualified to speak too. My day is much the same as yours. My husband works long hours, my 5 year old daughter attends school in the mornings, then there are the array of lessons, apts., play dates, birthday parties… and in my case dialysis. It is exausting. Then the runnings of a home, which is a tonne of work in and of itself.

All I can say, certainly not wanting to be discouraging, it to validate you… and tell you that any person doing all that you are doing, without kidney issues would have reason to be tired. It is difficult being everything to everyone, and raising a family, with the added element of health issues. I have had to learn over the years, to re-adjust, and re-prioritize my goals, and expectations, especially of myself. If there is any possibility in the short term at least, you could take a day off, every other week, and have someone else shuttle the children to school, so you might have a day of rest, you might find it extremely helpful, both physically and mentally.

Dr. Agar, so true about appearing ‘normal and well’ to onlookers. It can feel very isolating.

I wish you all the best, and am very touched my Dr. Agar’s very in tune and considerate response.

Kidney_Mom