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Intimacy & Relationships

Keep Your Relationship Alive

By Contributing Writer and PD Patient Jim McFarlin

I asked my loving and supportive wife, Karen, if she wanted to share any thoughts here about our topic, how to keep intimacy alive and vital when one of the partners is on dialysis. Her response:

“HAHAHAHAHAHA! Are you serious? HAHAHAHAHA!”

She was just kidding, I’m pretty sure. However, after a small amount of cajoling and a promise to share the writing fee, she agreed to open up and express some feelings about the changes in our relationship. This is important. Because no matter what form of dialysis you’re taking, your body has had to undergo some significant alterations. I opted for Peritoneal Dialysis (PD), which means I now have 10 inches of blue-and-white catheter dangling out of my midsection like a garden snake with fashion sense.

You may feel unattractive. You certainly feel different. And if you and your significant other don’t address the 800-pound gorilla – or in our case, the six-ounce catheter – in the room, both parties may begin to conjure up all kinds of wild notions about what the other is thinking. So, guys, whether we like it or not, that plea our women repeat like a mantra – “Let’s talk, we need to talk, we never talk, why don’t we talk?” – has rarely been more significant. Communication is key.

But first, let’s repeat our mantra: Consult your physician, dialysis nurse or other health care professional before resuming any exercise program. And we could be talking about a rigorous workout here, if you’re doing it right. Intimacy, however, doesn’t have to mean s-e-x. As Karen notes, a simple touch can mean so much.

“It’s important to me to continue touching Jim’s body,” she says. “Physical touch is an affirmation. It speaks volumes when words are hard to find.” Fortunately, I am one of the few touchy-feely men in captivity, so this approach works well for us. My dad, rest his soul, used to think affectionate touching meant patting you on the head, hard, like he was trying to kill a swarm of mosquitoes. If you’re more like dad, you may want to consider letting your partner initiate the tenderness.

In a flight of complete silliness, one night at the dinner table we held a naming contest for my catheter. Our 10-year-old twin girls, Emma and Madison, took the challenge to heart.  Emma suggested that since the catheter is such a personal attachment and I serve as a television critic for several publications, YouTube would be a fitting handle. You may not wish to go to such absurd extremes, but it is important to break down the walls of mystery and sterility surrounding catheters, fistulas or other dialysis-related implements that may prove a barrier to physical closeness.

“In some ways, physical and emotional intimacy has been heightened by the changes to Jim’s body,” Karen notes. “His catheter is part of him now, and I am interested in how he’s doing with it, both physically and emotionally. I occasionally ask to see his exit site. I run my fingers over it gently and trace the scar, showing him silently that I still love his body. When we cuddle in bed, I rest my hand casually over YouTube. When the tape irritates the skin on his belly, I use my nails to scratch his itch.”*

“When Jim first got his catheter, I was afraid of hurting him. I knew his exit site was tender and that there was some discomfort post-surgery. Eventually, those concerns faded. We have always talked openly about intimacy, and that hasn’t changed with dialysis. We still talk about our desires, even when we don’t follow through on them. It’s reassuring to hear that the spirit is still indeed willing.”

There are some physical impediments to intimacy that unfortunately just come with the territory for dialysis patients. PD means I slosh around with at least 2,000 milliliters of glucose solution in my midsection at all times. I usually feel like the Stay-Puft Marshmallow Man from Ghostbusters: huge, and lumbering. Direct pressure on my stomach often leads to discomfort and immediate shortness of breath. You may not believe this, but it’s difficult to feel romantic or sensual when you’re gasping for air. So, we experiment: different positions, frisky repartee, remembering special moments from our past. Whatever helps. 

What’s more, men with kidney failure frequently have problems with lack of desire for sex, erectile dysfunction or reduced levels of testosterone. Even though it can be difficult for most people to talk about their sexuality concerns, your doctor, nurse or social worker are trained to listen and offer advice or referrals to other professionals who can help. Depending upon the degree of difficulty, you may even want to consider couples counseling with a licensed therapist.

Intimacy doesn’t have to stop when dialysis starts. The critical element to remember is, “Let’s talk, we need to talk, why don’t we talk?”

* Prior to you or anyone touching your catheter or exit-site, it is important to follow proper hand-washing and discuss any precaution with your doctor or home dialysis nurse.

Is PD right for you?

Several conditions may prevent your doctor from prescribing PD, including previous abdominal surgeries or the presence of intestinal diseases, such as inflammatory bowel disease or diverticulitis. Risks of PD include peritonitis or exit-site infections. Glucose found in the PD solution may lead to high blood sugar in patients with diabetes. Every patient is different, so it is important to talk to your doctor, nurse or social worker to determine if there are other reasons why PD may not be right for you.
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