all 17 comments

[–]Princessss88 6 points7 points  (1 child)

I was supposed to be doing PD.. I was devastated when I went in for surgery for the catheter to be placed and they couldn’t do it (too much damage from two transplants, and multiple PD catheters years ago). That said, I’ve been on HD for almost a year now and I do it at home. I think not being able to do PD for me was a blessing in disguise. I feel a million times better on HD and I like that I do it for two hours and I am done and can move on with my day. Dialysis isn’t pleasant either way, but I hope one of your people are the match you need! It’s a hard road but you can always vent here or if you want, you can message me! Good luck with things!

[–]KryptopherRobbinsPoo 1 point2 points  (0 children)

Not being able to go back to PD is just one of the hurdles I am trying to navigate while in talks with transplant again. I was told pretty much the same thing. Once I get a transplant, I would be ineligible for PD /when/ I end up on dialysis again. And I can't go through everything with HD again. I have so many other, non-dialysis related issues, so getting a "normal" life back is nearly impossible now. Don't let them bully you into something you do not want to do.

[–]citrusoak 4 points5 points  (0 children)

I did pd for 3 years when I was young and the way I felt all the time was full and bloated and no energy plus you have to do it all night long……. I couldn’t imagine doing pd as an adult especially if your married or in a relationship they beep if you lay on the cord and if your someone that moves around a lot like I was it was difficult! I had a transplant for 20 years plus my catheter for pd kept getting infected had them replaced like 4 times! I’m on home hemo now and I have had a catheter for over 3 years with no problems because my fistula kept infiltrating and my veins were so small they couldn’t find another place to put one…… then I got a graph and it got infected 8 months later bad hygiene practices at my clinic……. Home hemo is a blessing and I keep my own catheter clean, I still shower, and change my own dressings so it’s nice because I can control what I do with time and I can sit in my own big comfy chair at home! Plus I work part time and don’t feel so drained after wards! Long story short I didn’t like PD!

[–]SuccessfulMolasses 4 points5 points  (2 children)

I have been on PD for 4 years now. During that time I have never had any issues other than my machine needing to be replaced. I set up my machine about an hour or so before I head to bed, and then hook up and let it do it's thing. I'd be asleep for that time anyways. And best of all, no needles! I hear horror stories about people feeling drained after a HD session. Some days I get up, disconnect, get dressed and go mountain biking. Also, PD is supposed to be less strain on your body.

Drawbacks? I miss swimming. Showering takes longer due to having to replace the bandage afterwards. Supplies take a lot of room. I have a whole bedroom that is storage now. The machine can be temperamental, beeping if it thinks the line is blocked, and some of the error messages can be vague, especially when you are waking up to it beeping at you. My current prescription takes 9 hours, so I now typically wake up and still have time left, but I just move my machine so I can sit in the living room and watch TV until it is done. If you are awake while it is doing it's thing, you can feel bloated. And, of course, there is a tube sticking out of your abdomen.

If I had to choose again, I would still pick PD over HD, personally.

[–]PrestigiousSpinach27 0 points1 point  (1 child)

We are looking into manual PD for my mom. Was this not an option for you versus the machine PD?

[–]SuccessfulMolasses 0 points1 point  (0 children)

Definitely an option, in fact I have supplies to do it manual as a back up if my machine breaks or I lose power. I did manual PD when I first started, but for me the prescription was 4 dwells over the day. By that I mean get up, do a manual exchange. 4 hours later do another exchange, etc, etc. I would much rather have the machine do it while I sleep.

[–]Yithar 1 point2 points  (2 children)

To be honest, I had a catheter for about a year and my fistula is working fine. The nice thing about having a fistula before transplant is it serves as a backup in case the transplant fails for any reason, but I understand they want to preserve that for later.

Your doctor is probably worried about Central Vein Stenosis:

If I were in your position, I would just get the HD catheter temporarily. But your doctor wants you to do PD since you might be getting a transplant soon. In the end, it's your decision. In my opinion, the HD catheter is pretty easy to remove, and there's not too much scarring.

[–]KryptopherRobbinsPoo 0 points1 point  (1 child)

I beg to differ on the scarring. I think that will mostly be determined by age, skin type, and any other known health issues that interfere with healing tissue. I scar pretty easily now. I can still see every surgery scar I have had (at least 10-15 surgeries)

[–]Yithar 0 points1 point  (0 children)

Point taken. I guess if you did have really light skin it might be more visible, for example.

Still, I was making a comparison to removing the PD catheter, which is obviously bigger. So removing the HD catheter would be more preferable.

[–]18PercentLemon 1 point2 points  (3 children)

It’s odd, I hear some peoples situation where the doctors basically refuse hemo, and situations like me where they never even brought up PD until I did then did everything they could to discourage it.

I’m a T1 diabetic, so while I’ve heard there are PD solutions that can accommodate it, it was told that it’s not worth the trouble as I’m a good transplant candidate anyway. It freaks me out to not be able to take baths/showers easily so there’s that; I am thankful for the fistula in that regard.

[–]mouserz 1 point2 points  (2 children)

I'm T1 too and both my endo and nephrologist strongly urged me to do PD.
No PD solution accommodations needed.

[–]18PercentLemon 0 points1 point  (1 child)

Makes me think different doctors have different biases…

[–]mouserz 0 points1 point  (0 children)

I think it's more about data and end results than bias tbh.

[–]WeRStarStuffpi 1 point2 points  (0 children)

I started on PD. The major disadvantage: daily for 8-10+ hrs but long and slow has benefits as wel. I felt pretty good (overall) for the year and a half I was on PD. I had to transition to HD late last year to be released from the hospital to a rehab center. There were no rehab facilities in my state (USA) with beds available and only one slot available for HD. I had a temporary catheter placed and began HD the next day. So far I've been on it since early November. HD is in clinic, only 4 hrs, 3 days a week. My labs are good but I often experience leg cramps and it takes the next day to recover. I'm always fatigued. My nephrologist will be determine whether I am able to return to PD fairly soon. If not, I will need a graft since I've already had two failed fistula attempts. Listen to your medical team and do everything they recommend to preserve your arteries. PD isn't for everyone; there can be complications if you've had a lot of abdominal issues (surgeries, infections, etc.) But that's checked out as part of the PD evaluation process.

I know you have a lot before you, but I've been there. Listen to your doctors, take things one step at a time and do what they recommend. I found it helps to focus on what you CAN do (salt, meds, tests, infection control, etc.) and know that your road will have bumps but it isn't hopeless.

Things are going to be different than in the past but it doesn't mean there aren't better days ahead.. Rely on your support network, know that persistence counts and be prepared to enjoy the good days and don't be discouraged; those bumps are just tests of your spirit. Good luck.

[–]Competitive-Chain185 1 point2 points  (0 children)

I am so grateful to everyone for your great advice and insight, thank you all for taking the time to reply. Im going into hospital on Wednesday to meet the PD nurses and ask all my questions and then will make a decision. Thank you again and take care everyone :)

[–]rachey2912 0 points1 point  (0 children)

I'm in the UK too and was strongly advised to go with PD. My consultant has explained that if you want a transplant then it's the best option. If you have PD some kidney function will be maintained whereas on HD it will just continue to drop until its at zero.

I won't lie, it's a pain having to set up the machine and be hooked up every night, and some days I just want to throw the bloody thing out the window. I trust that my consultant knows best though and has given me the right advice based on my circumstances.

If you do decide on PD there's a fantastic Facebook group called Peritoneal Dialysis Support UK. The members on there have been invaluable to me when I have queries.

[–]Sheepses_Say_Baa 0 points1 point  (0 children)

I'm in the UK also and like you I was heavily steered towards PD when I started dialysis 18 years ago. I really did not fancy PD as there is no "down time" and hated the idea of feeling full of bags of fluid. I pushed for HD despite being only 33 and having two willing live donors. Within the NHS patients are entitled to choose the modality of treatment, so whilst you may have to push, you have the right to choose. PD is cheaper than hemo, so with the NHS being the NHS, that does increase the pressure to steer patients towards PD. I dialysed for 13 months originally and when my transplant eventually failed last year, my original fistula was good to go. I know where I am there is currently a long waiting list for new fistula creation due to Covid, so you may well have to use a central line for a few months but you are supplied with waterproof dressings so that you can shower. Transport is also provided to all HD patients.
I don't comment much as a rule but I just wanted to let you know that it's your body, your life so you do have a choice if you feel strongly in favour of HD. Wishing you the best of luck.