68 and terrified!

I’m a 68 y.o. male just starting p.d.- supposed to bring my machine home Tuesday. I’ve been living with IGA Nephropathy for over 40 years. My Nephrologist told me last August that I had fought it for so long that I never had to worry about end-stage. 6 months later I was in his office talking about dialysis options. I chose p.d., have gone through all the training. Have everyone around me convinced how unaffected I am by all this, but inside I am scared stiff. I feel like my whole life has been turned upside down, and don’t have the faintest idea of how I’m going to cope. I could use some reassurance from other older people who have been where I am now and made it through. Anybody out there?
Donzo

Donzo, the fear that you are feeling right now is 100% normal, even though you knew you had kidney disease. I can’t imagine the shock of believing for so long that you would never reach end-stage and then having that day come with so little notice. It’s a lot to process! Your life has been turned upside down, and the unknown is scary, along with the feeling that your body has let you down. PD is a great first treatment choice that gives you an excellent opportunity to keep living your life and doing what you love. A few suggestions: 1). If you are on Facebook, please consider joining ourclosed Facebook Discussion Group, which now numbers close to 5,000 members–including LOTS of folks who do PD at all ages, so you can hear from others who have been in your shoes and are thriving. 2). Activate coping strategies you have used before. At 68, you have gone through other difficult times in your life–loss of a job, a loved one, a marriage… We all have challenges. You can draw on those to help you now. 3). Talking to someone about your feelings can make you feel less alone. That can be a friend, a family member, a counselor, a religious advisor. You are at the hardest part now. Once you get going and find a routine, you will likely find that things will get much better.

Hi Donzo,
I echo all that Dori said and I wanted to encourage you to reach out to your dialysis social worker. Every dialysis clinic is required by federal regulation to have a dialysis social worker who has a master’s degree in social work and the skills to counsel patients like you to help you meet your goals. The federal regulations also require that your dialysis social worker interviews you to learn about you and what your strengths and needs are. Please be honest with him/her. The regulations also require your doctor, home training nurse, dietitian, and social worker to offer a chance to participate in developing a plan of care within the first month of dialysis. I urge you to take advantage of that and make sure you let them know what your goals are. During the 3rd month of dialysis your social worker will ask you to take a survey. The survey asks questions to find out how you’re doing physically and emotionally with dialysis. Please be honest on the survey too. The only way your team can help meet your needs is if they know what your needs are.

I also suggest that you let your family and friends in on the fact that you’re getting used to a new life with dialysis. When I worked in dialysis as a social worker, I told my patients that getting used to dialysis was like coping with a death of a loved one and to expect to grieve the loss of your kidneys. People who are depressed often isolate themselves from family and friends. I strongly encourage you not to do that. If they know you’re hurting, I suspect they will want to offer you love and support.

Besides joining the Facebook group Dori mentioned, I’d ask your home training nurse if there’s another patient like you who you could meet/talk. Lately clinics have been identifying patient mentors to offer support. The National Kidney Foundation has a peer mentor program. If you call, NKF staff will interview to link you with another patient who has been trained to be a mentor.

You’re not alone. Over 500,000 people are on dialysis in the U.S. today. You have a whole team to turn to for help. There are many patients who are going through or have been through what you’re going through and want to help. Take advantage of any offers you get.

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You will find it is the best thing you could do. The first week was confusing,I had to refer to the book often. Now I do the setup easily.
I put a bag on the machine about 4 or 5 so the solution gets warm. I take my weight, bp and record on the machine. Then I have supper go out etc. about 9 I scrub up connect and read or watch tv.sleep until 9. Disconnect myself but don’t do the whole end therapy routine because I want to get to the kitchen for a cup of coffee. I have so much more energy. I really resisted dialysis. But the cycler is the best. Does your clinic have a support group. People have gone through the same thing. You will be OK. Post your progress. We can help.

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Hi. I started peritoneal dialysis last October at the age of 63. It is daunting at first, but I found it became more familiar quite quickly. The main problem I had was with the cycler alarming. It does this if you accidentally lie on the patient line or if there are air bubbles in the tube. It is certainly the least intrusive method as it leaves you free during the day - I assume you are having 8 hour night-time dialysis. I hope you are able to get support from the dialysis team to see you through the first month. After that, it should be much less stressful. Good luck

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Always remember that maintenance is the key to keeping things running. As a CAPD Patient I find myself faced with many options. These options include living my life independently, free from any clinical setting. Along with the flexibility of doing what I want, when I want. This particular opportunity has given me the greatest chance that I could have ever asked for. My opportunity to save my own life is in my hands. As a transplant patient, CAPD has given me the confidence that I need to live a healthy life until I find a donor. Embrace this opportunity, as one that shines the brightest light upon you and you only. Stand in that light, proud to be alive and live your life to it’s fullest capacity.

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I am a 68 year old Male on PD. I’ve been on PD for approximately 18 months. Let me tell you, it’s a piece of cake, at least for me. I hook up around 9:30 PM which gets me off the machine around 7:30 or 8:00 AM. The only problem I had in the beginning was setting off the alarm by rolling over on my patient line. I now have that figured out and sleep through the night. I don’t even know the machine is doing it’s thing. I don’t feel anything. I hope this sheds some light for you. The first couple of nights doing PD on my own were a bit nerve racking,but now I can practically do it with my eyes closed. Good luck to you.

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Thank you all so much for sharing your experiences!

My husband is 78 and has been doing PD for 13 months. The biggest adjustments were handling the 100+ boxes of supplies, replacing cyclers which failed, and learning how to live with a new normal. Helpful things are rolling carts to transport heavy boxes and bags, using the multi pin connector so that he can disconnect to get something to drink, or just for a break, trying to not lie on the drain line, and putting up with the initial drain pain, which by the way, was completely gone after 4 months of healing.
He still deals with occasional leg cramps which we treat with tonic water with quinine and turmeric capsules. The biggest shock, I think, is carrying the ESRD label which is a jolt every time you see it on your diagnosis list. It is a challenge to learn something new but do not be afraid. You will make mistakes, but go slow, and you will figure out how to correct. The clinic nurse on call and the technician on call are your friends. Just tackle it as a series of problems to be solved and you will be okay.

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I am 80, live alone (widowed) and have been on PD 2 1/4 years. Just told I can now skip one night a week. So far no major problems and every time I have had a question the support has been there 24 hours a day, even though I am 3 hours drive away from my Dialysis Centre. The first few weeks were fairly difficult with so much learning to do, but no problems since then. All the best. Soon everything will be second nature for you.

My husband has not started dialysis yet and it may be a year or 2 away but are trying to get a head start on it, learning every thing we can. Thank you for your input. VERY reassuring.

Learning all you can is a GREAT way to reduce your anxiety and help you feel in control again. Good for you!

Sheila39,

Thank you for sharing your story. I’m glad that you didn’t assume you couldn’t do PD as a single person in your late 70s and that your clinic believed you could do it. You have proven what want others (patients and staff) to know…age and/or living alone should not limit someone’s access to home dialysis.

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I found PD to be easy and simple to overcome some issues. Issue 1: contaminants crossed the membrane slowly and I had a difficult time getting the nurse to push the doctor to put me on a wave routine with more cycles of less fluid. changing the program worked really well. Issue 2: I was a positional drainer meaning I had to have my upper body elevated. Doing that resolved that issue. Issue 3: the catheter would periodically get stuck to the side of the abdomen because of the suction on it during drain. Alas I suggested that the program make a shore reverse flow for a few seconds to blow catheter from the abdomen wall, but that was not possible with the Fresenius cycler because of a Baxter patent :frowning: I had the catheter adjusted to make it harder for it to fall against the abdomen wall and it worked quite well.
I lived in a Condominium at the time I was on PD and I was looking for a little more freedom of movement. I purchased one of those fiber/plastic work carts and put the cycler in the top, added hooks around the side of the top to hang the supply bags. The drain bag/s fit well on the bottom shelf. I got a 50 ft heavy duty (16/3 conductors) and attached it to the cart and had a hook to roll it up on. I also got the long (25’) connector tubing to go from the machine to my catheter. The result being I could roll the cart 50’ from my bedroom, and with the 25’ tubing I was ABLE to go ANYWHERE in the apartment. I would go out and visit with friends, cook dinner wash dishes and best of all could relieve myself in the bathroom without disconnecting. The only thing I could not do was drive away :slight_smile: I would go out on the deck on sunny days and enjoy the sun and take care of plants.
Withe ability to move around, Dialysis was not much of a hindrance to my movements around the apartment. By the way when I started I was 73, I am 79 now and doing well. Because of my membrane, I had to go back on Hemodialysis. This winter I started Home Hemodialysis with a NxStage cycler. Been working on ways to make traveling easier. I am want to get a travel trailer and put the equipment in it. I have figured a way to lock the Pureflow dialysate generator and the Hemo cycler so it won’t move around. If my plan works I can travel without having to have the hanging bags for the travel mode. (Yes there are those 5L bags to hang with Home Hemo if you don’t have a pureflow) In my case there are 5 bags hanging and 1 on the warmer, but I don’t see that as an insurmountable problem.
If you have problems with PD, consider home hemo, I dialyze 5 days a week for a little over 2 hours. I feel much better and make it kind of a challenge that I have conquered.

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Thank you for posting your experiences and suggesting ways you’ve made dialysis work for you. Others have traveled with their NxStage machine in travel trailers. One issue to deal with using the PureFlow is that water quality may be less than optimal. You could talk with the technical support folks at NxStage about how to handle that.