Kidney Disease: A spouse's perspective

Kidney Disease is a devastating disease. For the patient, it is a daily struggle. For the family, it can become overwhelming. I am the wife of a kidney patient. This is my story.

Let me just say that I love my husband. However, if there are any chinks in the marital armor, this disease will expose them. Suddenly a spouse may find that they have had to shoulder most of the responsibility for the care of the patient.

The first thing that happens is that the patient and spouse are trained in proper diet and care of the patient. This can include giving shots and watching the intake of certain minerals that the body can't get rid of itself. This requires the spouse to be at all the visits and training sessions. Because the spousal care is crucial to the well being of the patient, the spouse has to become well informed on possible problems and warning signs to look for to stave off possible complications with the treatments. The patient is often in a state of denial or confusion concerning his/her own body and it is up to the spouse to recognize and take action when necessary.

There are three choices of treatment now. All are life changing. However, we will be dealing with only two of the three since the third treatment program was new and we did not have the option of using it. I will just briefly mention that it is an "at home" hemodialysis treatment program that they are now recommending. We know nothing about it or the pros and cons. Please be sure and talk to your doctor about it when discussing treatment plans.

First, and probably most familiar is the hemodialysis program of treatment. This requires the patient to go to a dialysis treatment center where they are seated in a contour chair and have their blood cleaned by a machine. A shunt is placed in the body that allows them to be hooked up to the machine. This process takes up much of the day. Afterwards, the patient is exhausted and usually unable to function for the rest of the day. It is done every three or four days. A common complaint is the feeling of being "washed out". For this reason the patient should never drive themselves home after a treatment. Someone must always drive them and pick them up.

In order to have this type of treatment program the patient is required to have the shunt surgically inserted. On top of that, there are times that the shunt may clog or infection sets in and it has to be removed. Usually they just leave them in and insert another shunt somewhere else. There are all kinds of problems with this treatment choice--None of them good.

The second choice of treatment is the "at home" dialysis treatment called, Peritoneal Dialysis. A catheter is placed into the peritoneal sack that surrounds the body cavity and holds the organs in place. The catheter lies outside the body near the belly button. The patient can choose placement of the catheter. Having it too low can cause damage to it. If the patient has a job that requires him/her to rub up against a table, (such as in restaurant work), etc., the catheter can be placed higher so that it is not compromised. Likewise, if the patient likes to take baths, a higher insertion allows the patient to sit and relax in a hot tub without causing problems. Remember, the patient needs to tell the surgeon all the facts about lifestyle and likes and dislikes to insure that a quality of life is not compromised. My husband chose the higher placement. It worked out well for us. Make sure you talk to the surgeon about placement before the surgery.

No matter what treatment plan is chosen, a heavy burden is placed on the family. One of the first things that had to happen is adjusting not just lifestyle but household to the treatment plan. We chose the peritoneal plan for my husband. He was required to go into the hospital for surgery to place the catheter into the peritoneal sack. From that day forward, he carried tubing outside his body.

This meant we had to learn a special safety procedure to make sure infection did not set in. We had to learn the procedure for exchanging the liquid that was delivered monthly. It came in bags that had to be hung above the patient. It was necessary to do it in a sterile environment. I had to learn the procedure in case he could not do it for some reason. I was always his checks and balances. He had to log everything. We had to determine whether he was retaining water or dehydrating which meant adjusting his fluid intake as well as his diet and adjusting the contents of the liquid that he exchanged into the peritoneal sack. In case the tubing clogged, I had to learn to flush the tubes and inject heparin into them to loosen the blockages to prevent clogs.

I was required to give him shots on a regular basis to administer one of his medications. The first time I had to try it I couldn't do it. I cried. However, all I had to do is utilize a bit of anger and the next time the shot was easier. From then on it was no big deal.

I remember one day calling up the nurse and crying to her about how hard it was to get him to listen to me. He did not want to admit that he might not be doing things perfectly. He was retaining water and I was getting worried. Finally, after arguing with him over it, I called the nurse. She explained that he needed to put in a red bag because he was filling up with water. (The red bags were the ones we used to pull the most water from his system). He was drinking too much water and his body was not able to get rid of it. We went through a lot of ups and downs before we got it right. It took a lot of tears and anger to finally get to where his body was in balance.

I think that he didn't want to be a burden. It was pride, after all. He didn't want me to treat him as an invalid. He wanted to be in control of his disease, not the other way around. However, all you had to do was look at the physical changes that needed to be done in the house to accommodate his treatment plan and you knew that the disease was controlling our lives.

We had decided that in order to have access to a sink and running water, our master bath was the best place to do his treatment. This meant that we had to put in a comfortable chair and hang hooks on the wall to hold his bags of dialysis solution. It meant that he had to sit somewhere in an isolated area where others would not disturb him. Any air movement could produce infection, so the door had to be shut and the furnace and air conditioning had to be turned off during the treatment, which was done several times per day. Anyone coming into contact with him during this time had to wear a mask. If I helped him I had to wash my hands thoroughly with anti-bacterial soap. Both of us had to wear masks.

We set up a tray with all his necessary items and placed it in the linen closet next to the chair. The items included alcohol wipes, masks, latex gloves, saline, hypodermic needles, vials of heparin, thermometer and blood pressure cuff. (We used the wrist cuff because of its ease). Soon, it seemed like his illness was taking over all the space in the house and I was slowly being pushed out. Everywhere I looked, the necessary items he needed for survival was encroaching upon what little space I had and I resented it. I didn't want to, but I did just the same.

My whole life had changed. My freedom to come and go as I pleased was gone. I had to time my life to make sure I was present when he did his treatment. I couldn't just go do something with friends. I felt overwhelmed with the forced responsibility. He had been a Contract Engineer, traveling to where the short-term contracts were. He was seldom home, (a situation I had gotten used to). And now, we were thrown together constantly.

We couldn't just go and do as we had before. He had to retire earlier than we planned. Financially we were in quite a mess. We had not been prepared for this event. We had not planned.

Suddenly, a complication became very visible. He evidently had a hernia develop because of the liquid placed into the peritoneal sack. His testicles welled up to the size of grapefruit. He had to have hernia surgery. In fact, he had to have two hernia surgeries within a few months of each other. First one side, then the other. This set him back physically.

When I went to the doctor's visits with him, the doctors seemed to resent my intrusion. There were times when they belittled me--patronized me. I remember a day when I confronted the physician about my husband's growing physical weakness. I was concerned that he may need physical therapy to gain his muscle mass back. The doctor laughed at me. In fact, he made a snide remark about me being quite the gall. Ultimately, they ignored me, much to my husband's detriment. Finally, I quit going to the visits. I was merely an appendage, useless and intruding upon the doctors. If I kept going I was going to say something and my husband was worried that the quality of his care would suffer. So, I stopped going.

Because of the hernia repairs he had to have a shunt implanted and was forced to do hemo-dialysis until he had healed enough to return to the home style treatment plan. This is when we discovered how lucky we were to have been offered the home-style treatment. The hemo-dialysis was very hard on his body. It drained him. We were so happy when it was time to go back on the peritoneal treatment plan.

We had fought through many personal issues through this time. I had discovered feelings of resentment. I was angry with the doctors, the disease, and my forced life changes. We sought the help of a councelor. It was at this time that he was placed on the transplant list. Wow! This brought up a lot of issues I had not even dreamed of.

The transplant procedure is a complicated one. I guess I saw it as a last ditch chance to make him listen to me. I felt put upon. I felt like I was not getting any help through this time. I was invisible. If the patient had a problem there was an entire team of people at his beck and call. There were doctors, nurses, sociologist...you name it, it was available to him. I found myself thinking, "But what about me?" There was no one for me. There was no one that I could talk to about what I was going through and how the disease was affecting me. There was no one that cared about my needs through all this. All the focus was on the patient.

However, kidney disease is a family problem. I can't tell you how helpful it would have been to have a support group for family members. It would have been nice to be able to call someone up and talk about it with another spouse. In fact, the doctors and sociologist from the hospital thought I was mean. How could I resent him being able to get a transplant? They did not understand that I was overwhelmed and over burdened and I had no emotional outlet for all my fears and worries and anger and resentments. I had no one to give me a hug and tell me it was going to be ok. There was no one that said that they understood what I was going through.

I can remember watching Dr. Phil one day. A woman's husband had had a liver transplant. She not only became the sole bread winner, but now she had to take care of everything that they once shared, as well as care for her sick husband. She was going to have to pay all the bills accrued from the transplant and illness. She was angry. She resented her husband's illness and how it had impacted her life.

Dr. Phil did not listen. He called her selfish. He called her mean and spiteful and an awful wife to be so resentful. Not once did he delve deeper to listen to her fears, worries-anger. She wasn't angry at her husband. It was the disease. She can't yell at a disease, so it was all coming out at the person that was available. Dr. Phil didn't even offer any compassion or understanding. He didn't offer her a night out or a vacation to heal and regain herself. He didn't offer her counseling. He just told her how bad she was. That was the day I decided to write Dr. Phil and tell him how I felt. He didn't respond of course. He knew he was wrong. That was also the day when I decided that I had to write about this so that it might help other spouses of Kidney Disease patients. We are the forgotten ones and we need someone to talk to.

I will write more on my experience later.

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Last edited - 12/01/2007

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Kidney Disease: A spouse's perspective

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