CARING FOR DIALYSIS CARERS

When you say it, it stops being as dangerous as it sounded in your head.

#TeamPhoenix,these past few weeks have seen me tackle a little about acute kidney injury. I want us to have a look however at hemodialysis.This is what is common in Kenya and maybe what we are used to.

There is an aspect of care I want to delve into–The families of the patient. I wonder who takes care of them. Let me expound.End stage renal disease means that we are staring at end of life.It takes a toll on any family.

Taking care of a patient is tasking. Even more demanding is a patient with a terminal illness. The reality of renal disease,however,is that progression can be deterred if we actively engage kidney replacement therapies. Hemodialysis is more often than not where our people start.

The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI) recommends preemptive kidney transplantation for suitable patients. See,that is not possible in Kenya. I would hate to write for you things here which I know that you will most likely not see be practiced. Unless you have some serious cash flow.Cash flow for majority of our people is not anywhere near serious. If anything,like a pendulum,income keeps swinging to the poverty line and back under.

What that body of regulators say is that as soon as we diagnose end stage renal disease, a kidney transplant should occur without having to go through dialysis. Do you understand it now? That is common in First world countries.

Ideally, patients should dialyse thrice a week. Due to the intimidating cost and general limitations of resources, patients in Kenya dialyse twice weekly. That is unless in special circumstances where we dialyse them thrice weekly or more frequent depending on the condition. All factors constant, however, chronic hemodialysis occurs twice weekly.

We are yet to get to a point of accessible renal units in every village and town. This means patients travel far and beyond their county borders in search of dialysis–a lifesaving treatment.

More often than not, a family member must accompany them to the unit. That means not only one person, but two (sometimes three or four) will have to be divorced from their daily duties to visit the renal unit. Dialysis is not only time consuming but emotionally and spiritually exhausting.

Once Rosie asked me why we had no family support center in our renal unit. Rosie is a daughter to one of our patients. She went ahead to share with me deep concerns which she feels could be addressed in such a centre.

I thought about the other patients and their families. I realized they all underwent similar agony!

1 ) Time management

That someone must stop their activities to attend to one person perpetually is draining. Carers suffer from burnout and they may come off as aggressive if we the healthcare workers do not pay attention. Dialysis costs money and time is money. This is especially felt for patients who are old, children or too weak to go to the renal unit by themselves.

#TeamPhoenix, that is why I advocate for talking sessions. Identify a staff you can discuss the whole challenge of time management with. Nobody should guilt-trip you for feeling like you spend a lot of time on one person.

You should not feel guilty for wanting time off. Believe you me we all need time out. Your wanting to take a break from caring should not be misconstrued for neglect. Not by you or anyone else. It does not matter if the patient is your spouse, parent or child, it gets deeply draining. Take a break. Rest. Allow others to take care of your patient even if it is for a day or two. Let them be taken to the renal unit by someone else .That allows you time to rejuvenate and catch up with other things. Manage your time by letting others help. Ask for help too if none offers it readily.

2)Fear of the unknown

Dialysis takes four hours if everything runs smoothly. However machines fail (they are ALWAYS failing in the unit I work at), emergencies happen, vascular access fails and generally complications occur. What started out as a straightforward procedure becomes life threatening and you can’t help but feel confused. If nobody is offering any explanation, you are constantly on edge. In some cases, your loved one wastes away on your very sight and you are unsure of the effectiveness of dialysis.

A nagging uncertainty stares at you like a looming mount and dares you to climb. Lack of a solid plan for kidney transplant make it even worse.

Breathe. Just breathe. Done? Let us talk. In the simplest of that sentence, let us talk. Knowing a disease and its progress and what to look out for as a carer helps you take an active role in management of the patient.

Involve your renal nurse, renal counselor or nephrologist in charge of your patient. Talk about it. Share your fears. You might be surprised that whatever you are so antsy about has the simplest of explanations. I like informing relatives that no two patients are alike. Refrain from using one patient’s experience and expecting it to apply to whoever you are taking care of. You will really mess it up and interfere with the management.

By the way that explains why people keep moving from one specialist to another and another. There is something they want to hear and they are hoping the next consultant will say it. Medical nomads. Information pastoralists.

3)Nutrition

The typical renal diet is a mix and match of carefully selected foods. Now, from a family that can barely afford three daily meals, how do we expect them to afford special food preparation? Potassium, Phosphorous, Sodium and strict fluid restrictions make most foods off the menu of a renal patient. If they remain, they require extra preparation and the cost of fuel. If there is nobody to help, or they can’t do it themselves, renal patients end up eating the same diet as people with healthy kidneys.

That results in acute complications of high potassium levels and fluid overload in the lungs. It is vital to have a chat with a renal nutritionist. Please note the difference. Not your day to day nutritionist. We need a renal dietician or nutritionist. That is because they have extensive know-how in our local cuisine and will advise on what to eat and how to prepare it.

All renal units should have a renal nutritionist or dietician. These professionals are integral players in the renal team. Without them we work in futility.

4) Cost

National Hospital Insurance Fund (NHIF) has made great strides in ensuring renal patients get twice weekly chronic hemodialysis. However, the cost of serial imaging and blood tests still remain uncatered for by NHIF. This has increased the cost of hemodialysis. Furthermore, the fact that NHIF does not pay for anti-rejection medication post transplant is a factor that makes many of our people shy away from transplant.

Before introduction of a dialysis package in NHIF, many passed away for lack of funds to pay for the life-saving treatment. I believe more can be done if we are to achieve excellent health of the renal patients.

The above are just a few things carers battle with in the journey of taking care of a patient on dialysis. We need to talk about it and help them because they can not do this alone. If indeed it takes a village to raise a child, surely it must take the same to heal one?

As always, feel free to contact me here or elsewhere for any of these or other concerns you have as a carer. Talking is always the first step towards a solution. We are grateful for the dedicated work you do of taking care of our patients.

It has been a pleasure having you.

#KidneyWednesday

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