Dialysis Decision

[Blueskylynn]

I've had CKD since 2012 and am now encroaching dialysis. In your opinion, what are the pros and cons with the three (3) types of dialysis?

[Bassetmommer]

I am new a dialysis so I can only talk about my perspective. This is a decision you need to make with your family. I choose home hemodialysis. My reasons were only that PD was not going to work with my lifestyle. I like to swim. I did not want to carry fluid in my already large tummy. I did not want the added glucose than comes with that type of dialysate. And you have to do it every day.

I did not consider in-center HD because I wanted freedom.

Why I chose home hemo: I will eventually have the control of when I do it. As long as I get my three treatments in, I am good. I am not afraid of needles and matter of fact, do not even flinch anymore when I cannulate. I have a better treatment when I do my own cannulation. My husband was on board with helping me and being my right hand, actually my left hand. I only do two hours each treatment and was told they would not do that in center......which turns out to be not true. HHD is much gentler on the heart and body. When everything works, no alarms and pressures are good, it is not that hard....

But that never happens..... no, I am kidding and not. There are so many figgin things that can go wrong. I am struggling with that more than putting a huge, and I mean gigantic needle(s) in my arm. Setting up is a delicate balance of just the right way to do it. And it takes time. It takes me about 40 minutes to set up and do all the tests and prime and set up my lines and room. You need room. Room for the machine and chair. Lot's of room for storage. We actually had a room built for all the boxes so I would not have to see them all the time in my family room. They have to be stored at the right temperature and you have to be mindful of expiration dates. I have a chest of drawers in my bathroom with small supplies and then bins in my office which was taken over by the machine and chair. You have to do monthly inventory, which is no big deal when you can see everything you have.

You will learn to do maintenance on the machine. Flushes and such. You will have to change out the extremely heavy pak. You have to make dialysate saks for use and I make two a week. You will learn about how to keep your environment clean and in some cases sterile. All this and more impacts your life and home. When something happens to the machine, there is a phone number to call, and they have been wonderful with help. That will depend on who you use. I use NxStage.

You will learn to draw your own labs. Not really that hard when you get it, but we had an issue. Now we know what we did. You have to do urine samples and water samples. And then you have to go to the clinic for your monthly meeting with "the team". For me that is aways stressful because I am waiting for them to tell me I need more time on the machine. Not going to happen...... I still pee like crazy. I have no fluid issues, just the opposite. I add fluid during treatment. My treatments are to clean the blood, which it is doing just fine with. At clinic you are supposed to meet with the Social Worker and dietician. Except for one initial visit when I was at the facility, that has not happened. Again, I have no restrictions. Matter of fact I had to up my salt intake. Social work...got nothing really good to say about her, so I am not. Both still bill for monthly service....... grrrrr

When you deliberate, ask your family on what they can live with. Both my husband and I were extremely overwhelmed and are still to some extent. We have gone through some bad times with alarms and issues. Now they do not seem so awful. There is soooooo much they do not tell you until you are knee deep.

The good parts about home hemo: I am in my jammies. We are in my room that is bright and sunny. My doggos come down and visit. I feel fine afterwards and not like someone ran me over. Right now, I still have a med tech who comes to watch us get on. She has been a BIG blessing. She doesn't do anything unless we get an alarm, which we do all the time. She walks us through and then after things settle down, like 15 minutes, she leaves. And we are fine with all of the rest. She won't be coming for much longer. Which is scary.

The one thing no one talks about is the impact on your mental state. It is a huge change no matter what you choose. Find a mentor early on that you can speak with. Find support. NO one will know what you are going through unless they have done this. I still am grieving losing the life I had. It takes time to adjust. Allow yourself those feelings without guilt. Also, learn as much as you can about whatever choice you make. Go to a center. Go to a training facility and learn about the modality you are going to go on BEFORE you start.

And make sure it is time. I was pushed and I know it.

[RhenDutchess123]

I am on Peritoneal Dialysis ...I started 3 years ago and it works very well for me...I do 5 hr treatments every night while I sleep and have had very few problems...It does take a bit of space in my home, but I just turned a dining room that we hardly ever used for all my supplies. My Husband built cabinets to keep my solution in and I have nice baskets on top that hold the rest of my supplies...I easily travel and go camping most weekends in the summer ..I feel better and my Labs are usually pretty good ...Your Clinic will explain the different types of Dialysis available to you and help you learn what you need to know ...as will all of us on here...Dialysis is not the End of the World...

Its what keeps our World from Ending...

[Allnight in reply to RhenDutchess123]

I have been on PD for a year now. I do have a room for the supplies and they take up a lot of Soave. I do 8 hours every night. It takes less than 15 minutes to set up the machine. It has a modem that transmits the results to the clinic and they are very responsive if you call them. I do get alarms at night. There are four cycles of about an hour and a half each and some nights I don’t get much sleep. At the moment the catheter has moved a bit and hopefully it will go back where it belongs and stop causing me grief. The theory is that you will sleep through the whole thing and that does happen. Just not all the time.

The hospital here is my back up for weekends and nights and they are lovely.

I am in Canada and so far, this has not cost me anything but parking!

I can’t satin feel a whole lot better….last year was difficult for a number of reasons, but I do seem to be getting a bit more energy these days. I glad I chose this……

[tashagirl in reply to RhenDutchess123]

Thank you for your phrase at the end ! So inspiring!

[lovemesomeflowers]

I have been on dialysis almost 4 years, in clinic is best for me.Since I have a very small house & a dog.I don't like having to sit for 3 1/2 hours but its ok,I do get to see people & make new friends. I have never considered the other 2 options.They just wouldn't work for me.My clinic is 30 minutes from my home & is in town & I don't have to drive myself( don't drive anyway).Take your time and I hope you find the best option for you.

I should have told you my age 76 I have no kidneys doing in clinic take the worry & stress off the patient.The techs take care of everything.All I have to do is watch my diet,water intake (32oz) a day.Take meds.watch prosperous ,I do take a binder ,calcium acetate.

[tashagirl in reply to lovemesomeflowers]

I have low EFGR and I am 81, so I am beginning to think of dialysis and I am inclined to go with in clinic also. Thank you for your information. Are you over tired all of the time or can you participate in life on the “ off” days? I am so afraid that I will be exhausted all of the time.

[lovemesomeflowers in reply to tashagirl]

I'm not tired have always been active,in summer I can come home & mow the yard & use the weed eater,but in winter I just am bored LOL.I do go to church if its not to cold.

[tashagirl in reply to lovemesomeflowers]

Thank you!

[Bassetmommer in reply to tashagirl]

Tashagirl,

You would be better off at a clinic. The reasons why I say this is because of all the maintenance you have to do at home for both systems, HHD and PD. There are a lot of boxes of heavy solutions. You have to be able to lift and carry. And at 81, you might have issues with veins so in center would be easier on you. If you haven't, you should make sure you have a fistula done and maturing before you start. It takes about 6 months truly for them to be good. I started at 3 months and we had a lot of issues for the first couple of months.

As far as energy goes...from the minute I am off the machine, I am ready to rumble. I feel great and my energy is not like I had a 35. But heck, I am almost 70. 🤪

[tashagirl in reply to Bassetmommer]

Thank you for the information! It is good to hear you have energy! That has really been my main concern . I am very active for my age and always have been, and I want to stay that way! I do not want to go through the dialysis just to lay around and do nothing, that is no quality of life! I have already decided that in clinic will be my choice, thanks! And, also, when the dr suggests it is time for the fistula, I plan on doing that. Have decided to try the first three treatments, with the attitude that it will hopefully work out fine for me, but, also to have the choice to stop if not, and accept my fate.

[Bassetmommer in reply to tashagirl]

Yes, we all have that choice. One more suggestion about the fistula. If you see on your labs at pretty consistent decline, then get the fistula and let it heal. Here are the reasons why... it takes time to get in for the surgery and heal, and this is a big one: all of a sudden, if you are stage 4 or lower, you can crash and end up in the hospital on a catheter. You do not want to go that route. People get the fistula way before. I know people who have had them for years. Much better than having to do a catheter. Make sure your doctor knows you are planning on dialysis and not hospice......

[tashagirl in reply to Bassetmommer]

Thank you. Going to heed the doctor’s advice ( and yours) on that, but hatebthe thoight of that ugly thing on my arm! But I know that should not and will not be my main concern.

[Bassetmommer in reply to tashagirl]

They are not ugly...can't even see mine except for the bulge where they are connected..

[tashagirl in reply to Bassetmommer]

Yes I meant the bulge.

[Darlenia]

Hi Blueskylynn. My hubby has experienced both in-center hemodialysis and at-home peritoneal dialysis. Hemodialysis involves removing toxins via the blood and accessing your blood vessels; the other involves cleaning the toxins via your your lower abdomen (generally) and using a solution. What works for one, may not work for you. We're all different - medical conditions, lifestyles, interests, etc. Ultimately, the path you chose will be determined by your nephrologist keeping your interests in mind. The best way to inform yourself and find the one that works best for you, use this website mykidneylifeplan.org/#eyy which explains the various methods provides an assessment that will give you the "preferred choice for you" based on your answers. With this information in hand, suggest having a conversation with your nephrologist and request for a visit to a local dialysis. We did that and it was very educational. Please note that not all centers provide all types of dialysis. So ask to see one with a wide range of options. Your nephrologist may or may not have access to all centers in your area.

In our case, my hubby's nephrologist and a specialist at a nearby transplant center told my hubby, a T2D, they preferred him to be on PD since they wanted to preserve his vessel function for transplant purposes. Apparently accessing blood is hard on arteries; calcification of the arteries in the trunk area needed for transplant is a top concern and can prevent a transplant from happening, particularly for diabetics. So, that's what he did - transitioned to PD. He was successfully transplanted exactly a year later after going on dialysis. As you can see, there are many factors involved in choosing the best form of dialysis for yourself. I'm sure you'll find the right kind for you!

[Oceanviewed]

I hear your dilemma. I was all set to go on peritoneal dialysis when the time came but now at 83 I am having second thoughts. It now feels like more than I can deal with and so am looking at incenter hemodialysis. I think a lot depends on your age, energy and life style and trust you will make the right decision for you. Thank you bassetmommer for your post. I found that incredibly helpful .

[horsie63]

I'll add my .02 cents. I started with PD as I work and travel some. I would have stayed with it but it didn't work and I ended up in the hospital with tremors. Now I do in center hemo. It made me feel so much better, no tremors, no rash, and hungry. I started with 3 days (Tu, Th, Sat) and 3:15. They dropped it to 2:45 and I did that for 6 months. Now I do 2 days a week for 3 hours. I go Tue and Sat from 7 to 10 am. On dialysis days I work from home after treatment. I kept my Thur in case I have to go back and do appts on Thur.

I still use a CVC (central venous catheter) that sits on my upper chest. I can not get it wet so no showers unless I jump through a hoop to cover it. No swimming, but no needles. They tried to put in a fistula but it would not mature so now we're trying a graft. There's some good info on the web that explains each with pros and cons.

I like in center as I get to talk to the others there, the nurses/techs do everything. If there is a serious problem the ambulance can get there easily. I go to a small independent center so I know the nurses/techs and so far they are all nice.

My primary goal is to get a transplant so I make sure I stay compliant and do all my treatments as they are prescribed. I have no eating or drinking restriction as my labs remain good.

I wish you all the best in your decision.