Home dialysis concerns

[Pungo68]

My husband was diagnosed with end stage renal failure in May 2024. He was going to a dialysis clinic 3 times a week for his treatments. Last week we started the home dialysis training process. As the caregiver I’m really nervous about this, afraid I may be able to do it or may harm my husband during home dialysis. I’m interested in anyone who’s going through this already and how is it. Thank you.

[Bassetmommer]

You won't harm him. Depending on where you go, you will get trained pretty completely. My center kept me there for three months because I was so nervous. We went home and had my favorite tech come every time. The head nurse comes the first time. Depends again on the center. She stayed with us for a several weeks. I got cannulation down pretty quick. Its the damn alarms that throw me every time. My husband is my support. He helps with taping and handing me stuff, but I do almost everything else. It is scary. Ask for support and do not be shy about it. If you are going with Fresenius, their support is amazing for mechanical things. I was calling every time for every alarm until I learned which ones I can bypass, and what to check for on the others. I have been on for less than a year. I would not do in center. BUT, I do wish the machine would work perfect every time. OH, and my husband reads me a step by step directions EVERY set up so we do not miss a step or a clamp. Really helps. Best to you.

[Pungo68 in reply to Bassetmommer]

thank you for your reply, I’m hopeful that my husband will help me out, currently he really isn’t interested in helping. He prefers to go to the center for treatments but they gave us an option to try this for a few weeks without losing his chair at the center. I convinced him to try it out especially because the dialysis nurse said he will feel better. I’m a little worried about the alarms, our second day the nurse was having problems troubleshooting an alarm.

Do you find you feel better? Also if we stay with the home option we get 6 weeks of training and someone will come to our home the first two days.

[Bassetmommer in reply to Pungo68]

Don't be limited on the 6 weeks. If you are not ready, say so. They cannot and should not send you home before you are ready. If I had been the doer and not the reciever, we would have been home sooner. My husband is easy confused and actually was terrified, so I learned pretty much to be independent. I will not tell you this is easy. BUT...we do it when we want. I am in my jammies, in my room and it is ok. Do I feel better? I did not feel bad before I started. But I do have lots of energy and sleep better.

[Pungo68 in reply to Bassetmommer]

Thank you. I’m hanging in there, my husband lost consciousness today during treatment so this set my worry level up a lot. I’m not giving up yet though.

[Darlenia]

My hubby was on in-center HD and then switched to PD (peritoneal dialysis) which is generally done overnight with a cycler. I started out helping my husband but he actually caught on faster than I did. Very soon, he did everything on his own. If we were confused about anything, we found YouTube videos that provided step-by-step instructions. (There are also phone numbers you can use.) Your spouse is trying out Home HD and that is more complicated. But give it time and see how it goes. And remember that you have a strong community here to help you through things too.

Just a final note - As one caregiver to another, if you feel it's too much for you (and your hubby can't carry the load for whatever reason), then you're fortunate to have the in-center back-up option. IF it comes to that, please don't carry negative thoughts or judge yourself about this. My husband now has a transplant. If it fails, I sense I likely won't have the energy to deal with dialysis at home - to order the supplies, to deal with the alarms, to make sure everything is done just right. I'm reminded of the quote: One can't pour from an empty pitcher. Simply keep an eye on yourself. You matter too.

[Pungo68 in reply to Darlenia]

Wow thank you so much for your kind comments, it really helps. Today was our 5th day of training, most of the time I’m left in the room with him taking his vitals, today he lost consciousness, I quickly got the nurse, she pushed saline and got him on oxygen, he was out for a few minutes, this really scared me. I know this would have scared me bad if that happened at home. Your quote and reminder about taking care of myself really hit home, everyone keeps assuring me I can do this, even family and friends. I was already overwhelmed when he was going to the center 3 days a week, it’s only 8 minutes from our home so I was at least able to run errands before picking him up. Again I can’t express enough how I am grateful for someone who understands this stressful situation. It’s nice to have a community who had been through this and can relate to the struggles, thank you

[Darlenia in reply to Pungo68]

You're most welcome. Honestly, it's a very grim (nightmarish) situation. I was thrown into it and somehow managed to come through to the other side. You'll constantly hear, "Yes, you can do it! Stop worrying! Be positive! You're amazing!" Caregivers can fall apart too. I'm aware of one who pushed off her mammograms and wound up with cancer. I did some of that, too, with my medical appointments - I was too occupied with my man to keep them. Thankfully I'm still okay. Some wind up so exhausted, mistreated, or misunderstood that the situation leads to divorce. Simply love yourself enough to recognize your boundaries. Doing that will benefit both you and your husband. Don't let the voices around you dictate your decisions. Home dialysis exists, in-center dialysis exists, you have choices. And we, here, will lift you up too. You're truly an angel for staying at your husband's side during this turbulent time.

[Pungo68 in reply to Darlenia]

You are a wonderful human, thank you so much 😊

[horsie63]

I did PD before it failed on me and now I go in center hemo. I will NOT do home hemo for various reasons. I don't want medical supplies in my house again, my husband doesn't do blood and works so much I'd be alone. If something went wrong I like being there where someone else can take care of it. I don't feel bad, I work full time and am getting ready to fly out and visit my mom. Sure there is a lot to organize but it can be done. If that's what you all chose then GO for it.

[Pungo68 in reply to horsie63]

My husband decided he wanted to go back to the in center dialysis, they talked to us about PD that but he wants to go to the center where there are medical professionals when alarms happen and to assist. Monday while at dialysis he loss consciousness due to low blood pressure, he has a history of low BS, I think that’s part of his reasoning. Thank you I totally understand what you’re saying. Thank you.

[Bodhi22]

I am responding under my wife's login. I experienced ESRD in May 23. Was on hemo then moved to PD. Have been on PD every since. PD at home is generally benign but can be very dangerous if you happen to get peritonitis. I contracted peritonitis 2 months into PD - somehow got infected. Very scary - 2 days inpatient and then 16-days of in home delivery of antibiotics. So keep the catheter and area clean when connecting to the machine. The dialysis fluid boxes weigh in at 26 lbs with 2 6L bags. Must be able to lift and manipulate the bags and set up. Highly recommend some sort of weight training exercise to make it easier to handle. Getting to know all the issues and resolutions with the machine is critical as well. Once you are in a groove, it is generally benign and hopefully it will work for him. Good luck.

[Motor_city_kitty in reply to Bodhi22]

I always wondered how much those boxes weighed!