Encoragement of PD Patients and Caregivers

I really don’t have the words yet to tell everyone about our experiences but do want to encourage anyone looking at PD to take the leap and try it.

Two years ago we were told my husband was experiencing renal failure. He is a diabetic. Last Feb. he suffered congestive heart failure, a heart attack, and open heart surgery. His doctors did not think he would walk out of the hospital. (He had a stroke 4 years ago. No lasting effects.) This December he had a catheter put in place for PD. A total shock. Everyone told us this was the best way to go for us.

A little over three weeks ago we went to our DaVita clinic for training. This was pure hell. We started on Monday and Friday we were sent home with the cycler and supplies. Even though we were told that we would not kill him doing PD both of us were terrrified. The first week was a nightmare, the second week was a bit better, the beginning of the third week amazing.

I do want to tell you that we have been married for 42 years. We have two sons and daughter-in-laws who have blessed us with 6 grandchildren. Age 3 years to 14 yers old (5 girls and 1 boy.) We live on a family farm in the deep south. Friday night all 6 spent the night with us. This made things seem so normal.

I guess I am rambling but I just feel the need to tell anyone looking at PD and feel so lost and scared to go on and try this way. Right now my husband is hooked up to his cycler getting his dialysis and sleeping away. I am here watching television and playing at my computer. He has plenty of extra tubing to get up and go to the bathroom if he needs to. I also bought a small fridge for the bedroom to keep drinks and other goodies that he might want before he goes to sleep or during the night. (I did this after the first two nights kept me going to the kitchen to get water or something else to drink. I decided this just wasn’t going to work.)

Yesterday I had to take my 89 year old mother to the ER and left husband by himself. Since he had learned how to do the PD by himself he was able to take care of everything without me being home.

We are so happy we were urged to take this route. It is working out so well for us. We are even planning a couple of days away from home in a few weeks. I already have my “go bag” packed with everything except the solution and insulin we will need.

I do need to tell you that Baxter is so wonderful too. The first delivery was so scarey but the driver brought everything in and placed it just where I wanted it to be. Even unpacked most of them for me and placed supples on shelves in closets.

After reading so much on several different forums I just wanted to post something encouraging and positive to others who are about to walk in our shoes.

I have had very similar experiences as DHolland with PD. However, my husband and I are both 26 and newlyweds. My husband was born with a random mutation that resulted in one kidney and had a transplant at 14. Due to medications and the age of the kidney, it started to fail over the summer. We thought we could re-transplant in time (with a living donor) to avoid dialysis and were very sad to realize this was not possible. The information about dialysis is very limited compared to what you can learn about the transplant process/medication issues.

We started training last week and went directly on the cycler. It has been so easy and a blessing. My husband actually lost 10 pounds in fluid over the weekend (no dehydration issues). Looking back, I am not sure what we were so nervous about.

Thank you for sharing your experiences and feelings so openly. It’s important for people facing the need to choose a treatment to read messages like yours that tell them that it’s OK (actually totally expected) to feel nervous at first, but with time, repetition, and a little creativity, PD lets people live a full life.

Many people wonder after starting dialysis why they were so afraid to start. I’m glad that you and your husband are coping so well.

It’s so strange–I’ve heard that over and over, and yet there are reams of info and tons of websites and pamphlets and booklets and such about dialysis, too. Not sure where the disconnect is, but it is true that there is a LOT more info out there on in-center hemo than on any type of home dialysis. That’s one reason why we’re here…

Thank you for you kind words. I am happy to know too that others are having good experiences with their PD.

We got reports of the last lab work to day and the PD is doing just what it is supposed to. It does seem a lifetime ago when we walked into that clinic for training. I even told our PD nurse that I didn’t want to to come live with us anymore. We could handle things ourselves. (I am aware that there will be bumps ahead but together we can handle them.)

One thing for sure I don’t want to ever smell gold liquid soap again. We had to wash our hands with this soap during our training and I want to get ill when I smell it now.

A great day here in southeast Alabama. Thank goodness for PD.

Good to read about your positive feelings about PD. I would like to tell you our experience
My husband has been on PD 3 years, went onto the cycler last April. It has been really good for him. He was never a really good sleeper, so he still doesn’t sleep as well as I do with the alarm bells that ring from time to time, but he manages.
We live in Australia and last January we went to Singapore to visit our son who lives there.
I could not believe how smoothly everything went. Fresenuis were marvelous, ordered a machine and solutions etc to be delivered to the Singapore address from the Singapore branch - they were there in time for us to arrive and in perfect working order.
The Doctors, renal specialist and GP, provided us with letters of my husband’s condition in case of emergency and to show going through customs. We had no problems at all.
We live in rural NSW Australia and had to stay overnight in Sydney, PD solution was delivered for manual exchanges to our hotel where we stayed on the way over and on our return. It did take a lot of organisation, but we planned well in advance and I am really pleased it worked out so well. I would feel very confident to travel overseas again.
We are not young, my husband is nearly 72, but in reasonable health except for his kidney failure.

Elaine I am so glad you took the time to share your experience. After reading posts on several forums and seeing all the problems and very few positive things I felt it would be good to share our experiences. It is wonderful that you can travel with good planning and enjoy yourself.

We thought the bottom had fallen out of our world when we were told that dialysys was in our future. First there was a shunt placed in hubby’s arm for hemo and then in November our doctor suggested PD. We both said no to that at first. Then the nurses and staff talked to us and we decided to give it a try. Thank goodness we did. No leaving home during the week at all hours and getting out in horrible weather.

We do one fill late afternoon and then in 4-6 hours hook up to the cycler for the night. In our own bed, watching our on TV, talking, and thanking God that we were given this choice. I will admitt that we have gotten sorta lazy. We don’t move too fast in the morning right now but as the weather gets better I will have to get up and get my yard work done. Not even 4 weeks and either one of us can handle the cycler. I do want to try the ultra-bags. Doing that afternoon fill that way would really help if we wanted to be away from home and not use the cycler for that filling.

I grow flowers for hummingbirds and butterflies and soon they will be arriving for the season. The hummingbirds have really helped us get throught the past two years. Hubby loves to sit on the back porch and watch them in the afternoon. Digging in the dirt and taking care of everything is my therapy. I would advise anyone living on the eastern side of the US to put up a hummingbird feeder and plant a few flowers that would attract them. These hummingbirds are the Ruby-throated ones. Different ones visit the west coast. You can do this even in an apartment in town. I will post a site that be visited to learn about the hummingbirds. People from all over the US, Canada, and South American visit the site.

Elaine I am afraid that hummingbirds are not native to Australia but I am sure there are other birds just as beautiful and interesting.

I don’t know what snag we will hit but I know that we will be able to handle it together. Right now we are both in good spirits and adjusting.