Yay! Its Summer! …Oh, and I Have to Do Dialysis

I do not know about you, but I look forward to the summer. The temperature is warmer (too warm here in Georgia!), and lakes and rivers are suitable for kayaking, fishing, swimming, and other ways to have fun. There are cookouts, pool parties, and it’s a season to enjoy both indoors and outdoors.

My wife especially looks forward to the summer and its activities, especially swimming! When her health was at its worst, we cast off our desires for a “normal” summer because, well, she did not feel well, had no energy, nor a desire to go swimming, hiking, or anything else. After she began dialysis, like many of you, she started with a chest catheter (or as some of us like to call it, her chest ports), which was like “Welcome to dialysis, now never shower again or have a real bath!” Eventually she had her fistula placement, maturation, and her catheter removed.

There were a couple of issues however. The first, and from what I have gathered from other patients, was “how it will look.” She was worried that it would be some big ugly thing and she could never wear sleeveless tops again! She was also (and still is) self-conscious about the scar (from the chest cath and fistula) and if she would ever be able to do again the one thing she craves: go swimming.

There is a lot to worry about with dialysis, and several areas that could lead to infection, damage, or in some other way impact the quality of her treatments due to infections and other areas of consideration.

Is a normal life over when you are a dialysis patient? NO! That is one of the benefits of at home dialysis, the flexibility to schedule and adjust as needed. We realized this benefit first-hand when we moved a couple of years ago. It is a long story, written about in another blog post here, and we benefited from the value of this flexibility. We also realized this benefit through other stages of life such as the slow death of her grandmother, adjustments to my schedule (I work three jobs, one of which is in children’s ministry that is often variable schedules, and am in seminary as a full-time student), and of course the usual summer activities between cookouts (or barbeques for my northern friends), swim parties, and general togetherness (a little more normal in a COVID world).

Lets face it. Being required to be connected to a machine is inconvenient. It is central to your planning, especially summer time when there are more opportunities to be active, and it can lead to resentment. I know my patient has often lamented about how, not the treatment or what it does for her to help keep her alive, but the time, effort, and rigidness does tend to wear her down. This leads to her pondering skipping treatment, or being drawn to just… well not doing dialysis anymore so she can “get her life back.”

At times, it does seem like treatment is a full-time job and it is your life. I do not mean that it keeps you alive, but as my patient has lamented “this is all that I do! I can not make plans like a normal person and I am tiring of missing out on things because I have treatment that day.”

As a care partner, I try very much to be supportive of her and listen to not only her words but the message from her heart. I am smart enough not to try to “mansplain” the value in treatment or minimize her feelings on the topic. I do try to encourage her and find ways around these opportunities she may miss out on to help support and make her feel better about it.

From my perspective, she is alive and that is a good thing. Treatment is the reason she is not only alive but doing so much better than a few years back. But there is a psychological toll that I think most of us as care partners are probably not well informed or equipped to help with.

One thing I have learned, and this may be gender related or may be neutral, but patient related, there is a psychological element to our patients. This includes an attitude of “big sigh: But I have dialysis” “I can’t do anything because of dialysis,” and “I still have to be stuck to this machine for hours several days of the week,” in addition to the vanity issue: Chest ports and mature fistulas are not very sexy! I personally do not find them repulsive, but that is one area that my patient was, and still is, most concerned with. Perhaps we should think about it as a battle scar to be proud of? Sounds like a great idea to me, but I am also not the one who must live with it either. We must be good listeners to what they are really saying. I am not a psychotherapist, nor do I know what it is like to be a dialysis patient, so I do not have all the answers or even a clever or humorous tip for you, but try to listen to your patient, differently, and use that as an opportunity to first and foremost hear what they are trying to say, emotionally. Entertain conversations that help you learn better what is like to be the patient.

In my wife’s case, skipping a treatment is not the end of the world. She has a lower prescription than other patients, still urinates, and rarely must take any fluid off. On occasion I have been supportive when she has decided she just doesn’t feel like treatment today. I am not recommended you disobey your doctors but sometimes our patients need a break. At other times, they need encouragement. If, for example, the fistula maturation is upsetting, talk about how proud you are of it, or his/her dedication to staying compliant with their treatments. You may be thinking of this logically, like I did in the past “You need it to live. You should be excited to be alive. I would be heartbroken to bury you. How can you not want to do your treatment? It is what keeps you alive you know,” but I learned that in just listening you learn a lot more and she knows all my logical answers. They really don’t matter when it is an emotional situation! It is very easy for me to say those things, but lacking any experience or knowing what is actually like (planning the times/days, setting up the machine, making batches, maintenance, the fear or excitement the night before- dread that “I gotta do dialysis” or excitement “I am going to get my dialysis done early so I feel better and we can go outside and play!”

It is matter of perspective and better understanding what they are going through (medically, psychologically, their feelings about themselves and/or perception) so you can be the best support. One thing they do not put clearly in the brochure or training manual, the functions you perform for treatment are not the only tasks! You are as much a therapist/encourager as you are the idiot who hits buttons and helps with the actual treatment.

Listen to your patient’s heart. Be helpful and encouraging to help them through the mental valleys. Let them know often how much you love to help with their treatments and how proud you are of their commitment. As I have told my patient more than once, if I were in the situation, I know I would already be dead because I would do a bad job of taking all my medicines (like the 15 or so she has to take!), watching my diet (and that is even harder with get-togethers!) and I would have an attitude that my life was tied to this machine for 3-5 times a week, 4 or so hours, I have better things to do with my time! I have said that in honesty but also to encourage her—she is doing far better than I would do and I am proud of her discipline in her treatment and medical care AND for choosing to go through this so we have more time together.

Yes it is time consuming, it seems to be a chore more often than something fun, and yes it is inconvenient. We can focus on that aspect, or we can focus on the positives and sometimes make just a minor change or an acknowledgement that impacts them more positively than any logical justification ever will.