Side effects of PD

[Escabeche]

Hello again, extended family. I’ll start by saying we’re in the UK, where things are different in many ways. Anyone else here from our side of the Atlantic? I am my husband’s carer and he will soon start dialysis. The obvious choice seems to be nightly PD if you can learn how to do it, but it seems too obvious. Why would anyone choose another form of treatment? So: if all methods turn out to be appropriate, there must be difficult side effects to nightly PD that make HD or HHD a better option. What are they please?

[jodaer]

I'm definitely not an expert but I think it mostly comes down to personal preference. I'm not on dialysis yet but I will do it in center. I researched each option and decided this is the one for me. I don't sleep well now, and no way would I be able to sleep if I was dialyzing. I live alone in a small apartment and no way could I physically do it alone or have the room for the supplies. Hope this helps.

[Escabeche in reply to jodaer]

Yes, it definitely does. I’m the carer, not the patient, but I’m also in my 70’s. Lifting and being absolutely reliable is an issue for home dialysis. I can’t lift boxes to start with. It’s a quandary because my husband would prefer PD at home. Also because a fistula seems very unpleasant

[Gambler in reply to Escabeche]

My husband (78 years old) has been on PD for two years. I am the same age and I am also his "setter-upper." We chose PD initially (1) because his nephrologist strongly recommended it for us and (2) from the relatively little we knew about dialysis at the time, it seemed like the best choice for us. Over the past two years, we have had our misgivings from time to time. During the down times, we researched other options -- home hemodialysis, in-center hemodialysis, etc. We learned that no one method is without its difficulties. For us, the main drawback to PD has been pain during draining. (Filling and dwelling almost always go smoothly.) The pain can be anywhere from mild to unbearable. Following some of the "unbearable" drains, we seriously considered switching to in center HD. However, that can have its drawbacks, too. As I said, no method is without its downside.

As far as lifting the boxes, storing the materials, and doing the nightly setups, we pretty much have that down to a science. I cannot lift boxes either, but I can lift one bag of dialysis solution at a time, load it onto my walker and wheel it into the bedroom. Fortunately, we have plenty of space to store everything. The setup was initially somewhat confusing but, eventually, I/we got the hang of it and now I can practically do it with my eyes closed.

Here is my takeaway: No matter what type of dialysis you choose, there are downsides. If you trust your doctor, maybe you should go with his/her recommendation, as we did. Try to choose the one you think will have fewer life disruptions for you both. Again, nothing is perfect. Dialysis is definitely a life-changer. However, it is also a lifesaver. Wishing you good luck.

[Bassetmommer]

Choosing dialysis methods has to do with lifestyle. All are good in their own ways and bad also. PD is gentle on the body. Requires daily treatments. Needs room for supplies and equipment which is a LOT. Issues with PD are infection and eventually it doesn't work. Home hemo is a great choice IF you can do all the work required and that is a LOT. You need to have a fistula and that requires time to grow and mature before you use it. You need to be able to set up all the lines and machines, you need to be able to stick the arm where the fistula is and maintain the equipment between treatments. Lots of equipment and heavy bags of fluids. AND many, many alarms to get used to. HHD is very good process for dialysis. It is gentle on the body, has great results and you can do it when you want to as long as you get a treatment. In center is the least difficult to do as you go, sit in a chair and then leave. No maintenance. BUT..it is hard on the body, especially the heart. You cannot control the time and day you go. And, in some cases, the staff are not the most pleasant.

Things to think about are space, are you able to lift heavy boxes, how active your lives are and how capable are you to do the required set up and take down. Go see the facilities that do the training for home care and incenter.

[Escabeche in reply to Bassetmommer]

This is very helpful and gives me good tools to help us make these decisions. I'm inclining to incentre treatment because of the limitations you describe for home, but I’m not the patient. We should have a better picture soon. Things in the UK are first rate, and free, but they move slowly.

[OldHat in reply to Escabeche]

I believe PD more often than not leads to Peritonitis and has to be discontinued. I would stay with it if I started on it and change when it becomes essential.

[Escabeche in reply to OldHat]

Thanks Hat. He hasn’t started. its all so slow - he’s on 13 and deteriorating, but the renal part of our health system in the uk has an excellent reputation, so I’m trying not to fret about the passing of time. He and I are now trying to decide whether night or day pd is better. I favour daytime because I can be more useful and help is more easily at hand. My husband, naturally enough, prefers night time.

[Darlenia]

My husband started with in center HD and then transitioned to PD. All forms of dialysis have plusses and minuses. A wonderful website that goes over the advantages and disadvantages of all forms of dialysis is listed below: Also listed below is a great questionnaire which, after you fill out your preferences, determines the best choice for you. While the info is US based, the types of dialysis described are generally available in Europe. Please note that both forms - HD and PD - offer day/night flexibility. (Yes, some prefer to do ambulatory PD, although the nightly cycler is probably most popular.) Although my husband started with in-center HD, he was advised by a transplant center to switch to PD to avoid calcification of the arteries (a problem for diabetics) needed for a transplant. A transplant was our ultimate goal, so we quickly made the switch from the one to the other. We had an easy time with PD - no blood pressure swings, no cramping, no needles required, etc. He did everything on his own, I wasn't needed. The downside was the occasionally alarm when he rolled over on the drain line. We kept the supplies in our garage so finding space wasn't an issue. Boxes were placed exactly where we wanted them, so no lifting or moving required on our part. However, should my husband's transplant fail, we'll likely opt for in-center HD given our age then. So, as you can see, life circumstances and life goals can make for different dialysis choices. If you can, try to join your husband when he and his team discuss dialysis options. That way, you'll have awareness, smoothing the transition into the form of dialysis the that meets both you and your spouse's needs for a good life. (Sometimes caregivers are given tasks we may or may not be able to do. You should have a voice at the table too.) Wishing you well on the journey ahead.

lifeoptions.org/living-with...

mykidneylifeplan.org/#eyy

[Escabeche in reply to Darlenia]

Darlenia, thank you so much

[Escabeche in reply to Darlenia]

I feel a bit relieved

[PDcaretaker in reply to Darlenia]

I thought I had found all the websites to help me understand my husband's dialysis. Thank you for your recommendations; Lifeoptions.org is awesome!!!

[Jk2023]

Hello we are uk to My mam has HD in the unit she chose that due to preference she feels safer having it in hospital she does have some side effects while on it sometimes her blood pressure will drop or she gets numb and tingly hands and feet and leg cramps but sometimes she will be absolutley fine and doesn't get any side effects

[Escabeche in reply to Jk2023]

I would think that’s a good plan in my case because if he needs help I’m not certain I can do what’s needed, but I’m terrified of the fistula

[Jk2023 in reply to Escabeche]

The drs and nurses in my mams unit are so so lovely and on the ball quickly if my mam ever needs help. Don't worry about the fistula in my mams case it's turned out to be the best thing, because she needed dialysis out the blue she needed an emergency line in and she had an infection in it every other week! She needed 2 lines removed and put back in while we were waiting for her fistula to mature enough to use it and she hasn't had one infection since (touch wood). All your worries are completely normal I was a right state when my mam first went on it it's a massive life change not just for my mam but for us as a family aswell lots of changes.

[Beachgirl32]

I’m not in the uk but in the US but I have dealt with both sides. I did pd a year and half. You can do it manual or a Machince I had lots of problems on it took them a long time to get my prescription right. And I had terrible drain pain on it I went through your cycles at night each cycle you first go through the drain then the fill then the dwell it was easy to learn everyone dies not have the drain pain like I did but I had it with tears in my eyes each time we tried everything for me not to have it I just accepted it.But in June of this year I got a fungal infection it was from the catheter it has to come out the surgeon said once fungal infection he doesn’t like to put them back in. Only a small percentage of baines get fungal infection. So they put an emergency port in my chest for hemodialysis. I thought I would hate hemodialysis but I don’t I go to the center three days a week I’m in the chair for three hours. My techs and nurses are really good if there a problem they are there in seconds to help me my blood pressure run low and if it sray to low they stop the fluid and will start it back if my blood pressure stables . I actually feel better in hemo I actually sleep at night which I didn’t in pd I take my mile walk again every day. I ha

S a fistula put in but it didn’t work it never work . So I’m going to have to get a graft the surgeon like to always try the fistula first he told me cause it the best for dialysis but I have very small veins so I don’t know why they didn’t try graft first a graft is using a tube they put in so I’m going have to get that. I know some people do hemodialysis at home but I rather be in center my husband can’t help me at home and I know from experience if they say it happens to one in a thousand I’m always that one so I don’t want any problems coming up at home I can’t handle . I will stick to the center and as I said I have great nurses and tech . You need to decide what work best for you we are all different whatever you decide if you have any questions I will answer what I can since I have tried both.goos luck to you .

[Escabeche in reply to Beachgirl32]

This is very useful information beach girl, thanks!

[anemraz]

I prefer HD for my mom (71). In my part of the world, twice weekly dialysis in a center is an option and luckily my mom is deemed fit to do it twice weekly. We choose Tuesdays and Fridays. You need strict adherence and water control. And it leaves us 4 days to ourselves.

[horsie63]

I too started with PD. There a lot of boxes and supplies but even in my tiny house we made it work. Then 6 months later it stopped working for me and I ended up in the hospital. They put an emergency chest port in and started hemo. Within 3 treatments I was feeling much better.

I tried a fistula but like Beach I have tiny veins and it never worked. I now have a Graft and it works so much better. I do in center as after the PD I decided I didn't want all the medical stuff in my house. I live a mile away from the center and drive myself in. I do Tues, Thur and Sat for 3 hours. I nap while I'm there and the time goes by quickly. I like in center because if there was a problem my husband wouldn't know what to do. I feel good, my labs are great. I work full time.

[Escabeche in reply to horsie63]

That’s it

[Escabeche in reply to horsie63]

Horsie, I’m going to visit the centre asap and now I know the questions to ask because of all you wonderful people

[Calebzztop in reply to horsie63]

horsie and Beach, May I ask, have they tried using your femoral artery and linking it to your saphenous vein? I did PD during the days at home and did alright for a year and then developed peritonitis and suffered grand mal seizures.. like the both of you, I needed an emergency chest port and had no luck with the first and second attempt at a fistula as I also had tiny veins. Since I was a young mother, 22, with a one yr old and five year old, the best option was HD at the center 3 days a week for 3 hours. So we decided to try using my saphenous vein and connect it to the femoral to create the fistula needed. It worked and then some!! The thrill was one of the strongest some of the doctors and nurses had felt. It did scare the kids a bit and took a while to get used to but it did it's job well. I went to the HD center for 7 years until my second transplant which lasted 18.5 years. Today, I am blessed with a third transplant and two grandchildren who visit every weekend with me . Good luck and blessings Escabeche

[horsie63 in reply to Calebzztop]

No. They put a graft in my upper left arm and it works great. Thrill is strong right off the table.

[Calebzztop in reply to horsie63]

That's wonderful! So good you're feeling well, labs are great and able to work too! I hope it continues that way for many many more years.

[horsie63]

Good luck and I hope you find the right fit.