Jumping The Gun
Our dialysis story — chapter four
It’s an odd phrase, jumping the gun. I used it in a recent conversation with Ben’s nephrologist’s assistant.
Last Thursday, G said she referred Ben to one of the local dialysis centers. As of Tuesday, I hadn’t heard from them or from the surgeon who will install a tube in Ben’s abdomen. I was anxious to learn about what lay ahead, so I did what I always do — research — lots and lots of research. I visited multiple sites with information about home peritoneal dialysis.
The more I read, the more anxious I became.
Knowledge typically helps me to feel grounded, centered, and in control. Not this time. Anxiety grew like vines in Florida.
I emailed G. She read my message and called immediately.
I told her I may have jumped the gun by doing all that research.
G is from Venezuela and was unfamiliar with the term. When I explained, she laughed and said:
Ah, making yourself crazy over nothing, right?
That’s when I thought about the odd phrase, realizing I didn’t know its origin. Google told me jumping the gun refers to runners who begin racing before the starting gun sounds. I jumped the gun by doing my own research before talking to the surgeon, dialysis doctor, and staff.
I was running by myself.
But I always research before . . . well, before anything, really. I like feeling prepared — like I have some level of control. Research gives me knowledge. Knowledge gives me control. Except for this time, it didn’t.
My research bred concerns, questions, and, yes, a whole lot of crazy.
Here’s paraphrased synopsis of what I learned from various websites.
😲Patient and caregiver must take several weeks of classes, up to three hours daily.
😕I work, and it’s a busy time of year for my clients. I do almost everything at home and walk our dog four times daily. Plus, Ben has multiple doctor appointments each month. Three hours a day for weeks????
😲You shouldn’t have indoor pets if you’re doing home dialysis.
😕We have a dog and two cats.
😲 If you have pets, they can’t be in the same room as the patient during dialysis.
😕If Ben does dialysis at night (questionable) as recommended, our dog sleeps with us every night, one of the cats about 60% of the time, and the other cat 10% of the time.
😲If doing dialysis at night as recommended, the patient must have four uninterrupted hours of sleep during the process.
😕Ben gets up no less than every two hours during the night. He uses the restroom, checks his blood pressure and glucose, and drinks Glucerna to stabilize his blood sugar.
😲You will receive a month’s worth of supplies — dozens of cases — that must be stored away from pets, children, and heat.
😕The only space we have that can be closed off and has enough space, though barely, is the guest bedroom, which also serves as my home office. There will be no room for guests with all those boxes (I’ve seen photos). Our children and grandchildren won’t be able to visit. No one can come to stay with Ben if I go out of town, which might happen next year. I’ll have no room to work.
😲Some or all of the patient’s other medications may need to be adjusted, so follow-ups with all doctors must be scheduled.
😕Ben has a pile of medications and several doctors besides his nephrologist.
There was more anxiety-producing information, but these items disturbed me the most.
G reassured me while being very honest.
Yes, you have a lot of classes to take, but the schedule isn’t that rigid. Most of the information is for the caregiver, which is you, and your profession as a bookkeeper is helpful. You’re detailed oriented and accustomed to following procedures. The classes aren’t a required amount of time. You may not have to attend as many classes if you learn quickly and can competently perform the dialysis procedures in the classes. But, no matter what, it will require several hours of training.
You can keep your pets and they can even sleep with you as long as you take the proper precautions.
You have a certain level of flexibility with when and how the dialysis occurs. The dialysis doctor will help you figure out the best schedule and location.
Storage of a month’s supplies can definitely be an issue, but I believe you can get smaller shipments — two or maybe one week’s worth.
You will be assigned a nephrologist who is a dialysis expert, and he will help you with medication adjustments. You may not even have to make additional doctor appointments, although you will want to inform all of Ben’s doctors about his dialysis and let them decide if they want to see him or not.
She also said that the surgery would occur before the classes — something I hadn’t understood from our conversation last Thursday.
Her last words were something like:
Yes, getting ready to start home dialysis is time-consuming and, honestly, exhausting. I won’t sugarcoat it. But you’ll have a great team of people to help you through it, and once you get started, it becomes a routine like washing the dishes or putting away groceries. At first, it won’t feel that way. It will feel overwhelming. But you’ll get to the point that getting Ben ready for dialysis will be another bedtime ritual, like brushing your teeth.
Don’t make yourself crazy. Don’t over-research it. Different centers handle things differently, and every patient’s situation is unique. What you read on various websites might differ from how our center trains you or might be general recommendations that may not apply to your situation.
I hung up feeling better and a little reassured. And I received generous offers from my medically-trained Medium friends to offer advice, answer questions, and virtually hold my hand. To each of you, I am bountifully grateful.
Fortunately, the surgeon’s office called this morning and gave Ben an appointment for next week.
The process begins . . .
© Dennett 2023
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