"You're never too old"

my2boyzjad, BSN, RN

So, you've just left your doctor's office and your head is full of information, too much information! Words , numbers, medical terms you just don't understand. Maybe this has been happening gradually over a period of years or suddenly out of the blue. Your doctor has just told you that you have kidney disease or kidney failure. Acute! Chronic! CKD! ESRD! STAGE 4! Stage 5! GFR! Oh my, what is the doctor talking about? This can't be happening to me! I can't live without my kidneys, can I? Does this mean that I'm going to die? I refuse to be tied to a machine and have needles stuck in me. I'm probably too old for a transplant. They give kidneys to young people, not someone like me. What am I going to do now? I thought I had the rest of my life ahead of me. Looks like it's all over now.

STOP!! LOOK!! LISTEN, to me, a Home Therapies Registered Nurse who educates people just like you in what their options are when they are diagnosed with advanced kidney disease, at any age. I could go into what all those fancy medical terms are, or what the numbers mean that the doctor gave you, or how you could possibly have gotten kidney disease. But my guess is your doctor either tried to explain everything, or it's not what really matters to you now. You just want to know, what happens now? I know that you may feel that this is a death sentence for you and that you can't possibly learn anything about all this right now. I know that you are still in shock and that your family can't believe this is happening to you. You are probably wondering if there is any HOPE for you?

YES, YES, YES!! , absolutely, without a doubt in my mind or heart. I have been a registered nurse for the past thirty years, working in many specialty areas, in hospitals, clinics, in the home setting. For the past year I have watched many patients, just like yourself, learn how to manage their kidney disease and lead independent, fulfilled lives. Some of them are married, some single. Believe it or not, some are young enough to be your grandchildren. They can still go to school, work and even participate in recreational activities.

There's no question; you can't possibly ignore what your doctor has told you, or you won't live to see those grandchildren grow up and have your great-grandchildren. Some decisions need to be made, and soon, the doctor said. So what really are your options? Is there someone who can please tell you what to do?

This article is not intended to tell you what option you should choose, it's meant to assure you there ARE options, and more than one. Most likely, one of them will suit your lifestyle, too. Every day, around the world, many patients are diagnosed with some form of kidney disease. Some patients recover kidney function on their own depending on what caused it. We refer to this as AKI(Acute Kidney Injury) and can see this when kidney function quickly returns to normal. If the patient is diagnosed with CKD(Chronic Kidney Disease) or ESRD(End Stage Renal Disease), their kidneys have stopped functioning and they need dialysis or a kidney transplant to live. Dialysis is just a fancy term for cleaning your body of wastes and toxins that your kidneys can't get rid of anymore. Usually, the first idea that comes to mind is having to go to a dialysis center, away from home, three days a week, sit in a chair for three to four hours, be stuck with needles, and still feel poorly afterwards. Don't get me wrong, this kind of dialysis, called Hemodialysis or HD (for short), keeps 400,000 patients in the United States alive every day and if done properly is an excellent choice that patients tolerate well. There are around 6,000 dialysis clinics in the U.S. But this type of dialysis can be very inconvenient for some people. Maybe they work, go to school, have transportation problems, live alone or in an assisted living facility. Or maybe they are deathly afraid of needles and the thought of being stuck three times a week doesn't quite appeal to them.

Some diseases don't give you any options. Most patients have to take insulin shots daily when their pancreas stops producing it's own insulin. People with emphysema or COPD have to use oxygen to make it through the day. With ESRD, there are other options besides the traditional method of in-center Hemodialysis.

One of those options became popular in the 1970's. I'm talking about Peritoneal Dialysis, or PD. This is a type of dialysis that can be done at home by almost any patient or a significant other. More and more doctors and patients are considering this option than ever before.

There are certain medical conditions that can keep you from doing PD, but very few. A person has to be willing AND capable of doing PD. By this I mean they have to choose this option and be willing to learn how to do it. In other words, be open-minded . This form of dialysis does not care how young or old you are. Children can even do it with their parent's help. There is only one non-medical reason a patient cannot do PD, and that is they don't want to. Most patients are successful. There are exceptions though, but only a few; for example, someone who is unable to understand or learn and doesn't have anyone to help them.

So let me start by telling you about a patient of mine, we'll call her Susie. She is 94 years young and has been doing PD at home for over a year now, without any problems. She is sharp as a tack, quick with her wit, and determined to do this. She lives with her niece, who helps to connect her to a machine to do her dialysis at night while she sleeps. This is known as CCPD (Continuous Cycling Peritoneal Dialysis). Some patients do what is called CAPD (Continuous Ambulatory Peritoneal Dialysis), which is where you do four to five exchanges of fluid during the day and none at night while you're sleeping. Then, there's Frank, my 86 year young man, at my other clinic who does PD. He drives himself to the clinic twice a month for the usual labs and doctor's appointment. He walks with a cane, lives in an assisted living facility and calls me every day, just to "check in". Most nurses have cell phones and give their numbers to their patients to use if they have a question or concern after hours.

So now you want to know a little more about this wonderful thing called PD. How do you do it, are there needles involved, do you only do it three times a week like HD, what else is there to know?

It's funny, my friends even ask me, " So what is it that you do?" They've never heard of PD. They only know something about Hemodialysis and of how that is done. It was the early1980s, almost right out of school, that I took care of my first PD patient in the hospital. He did it totally by himself, I just had to empty the used fluid when he was finished with an exchange. I'll never forget him, I was absolutely intrigued by this type of dialysis, it had not been taught to me in nursing school. I forgot about dialysis nursing over the years, worked in the ER, on the surgical, cardiac, orthopedic, neurology, rehab, children's, and maternity units. I also worked as a visiting nurse, going to patient's homes to give them education and follow up care when they were discharged from the hospital. Patients, in general, are so much more comfortable in their own homes. That's the beauty of doing PD. I can honestly say, without reservations, that if I, or a member of my family were diagnosed with ESRD, I, personally, would choose to do PD at home and advise them of the same.

You could say I'm passionate about PD because of the sense of freedom and independence it gives the patient. There's no better feeling than seeing the light in their eyes the first time they do an exchange by themselves at home and realize they really can do it. With PD, there is an attitude of teamwork with the patient, nurse, doctor, social worker and dietician. We are all working together to always improve the patient's quality of life with better dialysis. They have more freedom with their dietary choices, more consistent dialysis, which can lead to feeling better by avoiding the swings of intermittent HD in the facility.

How can I say that, without reservations? Because I have witnessed the success of many patients who do PD every day. When given thorough, complete treatment option education early on in their disease, at least half choose PD. Even sometimes, the half that don't start with PD from the beginning and do HD first, start to inquire about Home Therapy eventually. The many doctors I work with at my two clinics are very much supportive of their patients learning how to do PD. When I do treatment option education with a patient, I present them with all of their choices, but I will admit I do lean towards talking about PD more because of my experience with, and knowledge about the treatment, and the benefits I know they would get out of doing this form of dialysis.

In conclusion, I will very briefly try to explain your dialysis options from A-Z. First, you are told that your kidneys are failing or have failed. Depending on how time factors into the decision, you may have no other choice but to start with HD and have a temporary or permanent dialysis access placed. The temporary access is a catheter, which is a tube that is inserted into a vein in your neck and remains until you can have a more permanent access, whether a fistula, graft or peritoneal catheter. A fistula is made by connecting an artery and a vein in your arm that, after it is healed, can be used by having two needles inserted for HD. This is preferred for HD, although if this is not possible, the surgeon can place a graft. The graft is an artificial vein using the same material that the surgeon uses to bypass a blocked artery in the leg and is also placed in the arm. The fistula can be used after 2-3 months, the graft in 2-3 weeks. The fistula is the preferred access for HD as the infection risk is much lower and remains functional for many years, compared to a graft.

In the meantime, the catheter in your neck can be used for HD. If you choose to continue with HD, once the fistula or graft is being used, the temporary catheter is removed. If you choose PD, the temporary catheter is removed as soon as you begin PD. The majority of patients, if they have the time, and choose PD, simply begin dialysis with their PD catheter and never need to have a temporary HD catheter placed.

There is another way to do HD without coming in to the clinic three times a week. This is known as Home Hemodialysis. You and a partner are trained in this method and it is usually done in the home five to six times a week with a dialysis machine designed for home use. It is critical that you have a partner to do this. If you don't, or if you live alone, this is not the option for you. You can also choose to do nocturnal HD in the center three times a week, where you have your treatment done overnight, while you sleep in the center. Some patients who work and do not choose PD, may choose this option.

Enough about HD! Let's talk PD! If you have the time to decide and choose to go with PD as your option, the first step is an evaluation from a surgeon. If he/she agrees that you can have a PD catheter placed, which is almost always the case, he/she will speak with your nephrologist and Home Therapies Nurse and schedule you for the insertion of the catheter. The catheter is surgically placed into the space in your abdomen known as the peritoneal space. There are usually two "cuffs" on the catheter that help hold it in place and prevent things from getting out or getting in, like bacteria. This catheter has to heal completely before it can be used, approximately two to three weeks. At that time, the nurse will apply an extension set to the catheter that will allow you to do your exchanges, or later on, the cycler. Once this extension set is in place and the nurse has orders from the doctor, the catheter can be flushed for a period of time determined by the doctor before you begin learning the exchange procedure. Training lasts approximately 6-8 days, not necessarily in a row, either in the clinic or in your home, or a combination of both. Most of the time the doctors and nurses prefer to train you in the center because of the availability of supplies. But it's also important for the patient to see how this CAN be done at home, and therefore the nurse may choose to do the last few training sessions in your home. When training is nearly complete, the nurse will make a home visit to evaluate your environment for space, cleanliness, access to a bathroom, safety features , etc. Then the nurse will place your initial order for supplies; some go to the clinic, some are delivered to your home. She/he will also be there the first time you do an exchange by yourself at home to evaluate your technique to make sure it's correct. She/he will also make regular home visits to evaluate how you are doing. With PD at home, you are never alone. Your nurse is your primary contact and is only a phone call away. She/he is always available to help you troubleshoot or answer your questions. It is a very unique relationship between the PD nurse, the patient and family. The nurses get to know the patients so well that they almost become part of their family. The dieticians and social workers are a very important part of the team, too. They provide valuable information to the patient and family and follow their progress very closely. And, of course, the doctor is the one who sees them once a month at their clinic visit, with the nurse, and pulls it all together so the patient knows what their health status is. The nurse always stays in close contact with the nephrologist and keeps them up to date.

Now that you know some of the facts about the different options for dialysis, which one do you think best suits your lifestyle? Let's go back to Susie and Frank, the older people successfully doing dialysis in their homes. They each have been able to maintain their independence and a high quality of life for over a year now. They are very satisfied with the treatment choice they made. These are only two examples of patients in their older years being able to learn and successfully do PD at home. There are thousands more out there just like them, living with a chronic disease and taking charge of their own lives. I bet, if you asked them, if they could make the choice again, they wouldn't change a thing. So, you REALLY are never too old to make a choice that will maintain your freedom and quality of life for many more years to come. Just ask Susie and Frank!!

"You're never too old"

About my2boyzjad, BSN, RN

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