Just curious....who else here is on HOME hemodialysis?

[Bassetmommer]

I would love to hear about your experience and how it's going.... Do you have a in home care giver or are you solo? How long did it take to get comfortable with the process or do you ever get comfortable with it?

[Sod6pnts]

Been a minuye... home hemo here....since Feb 2023... had a fistulagram Dec 2023...still piping!👍🏻🤘😎🤜🤛

[bumblebee_tuna]

I am not home Hemo, but might have to join you if I don't hit my numbers. I produce almost no urine these days and being low-medium transport - hitting the adequacy numbers on PD is getting harder and harder.

[Bassetmommer in reply to bumblebee_tuna]

It is a tough transition going from nothing to HHD. I think if I had a better introduction to it all, it would have been super beneficial. But, it is getting easier.

[WIND0WDRESSING]

Definitely recommend HHD. My husband of 50 years did the HHD training right here at home. The Fresenius neph ordered it as a special project to train in-home so as to train my hubby and me and a new instructor nurse at the same time. Quite scary in the beginning 😳 especially after the nightmarish in-clinic 4-hour treatments pulling 3.5 to 4.5 kg edema fluid with the washing out of toxins. All because no dialysis was being done with eGFR 4.3... nearly died. No mention that my lymphedema was caused by the several AKIs I had. All the illnesses were related to CKD. NO mention of it in my medical records going back 12 years. I captured screenshots of labs which had shown obvious CKD lab values being easily stage 4 during past several years. 🤔 eGFR 28. Not a peep out of my primary care until last September when he was updating my chart and asked me, are you still allergic to penicillin… wish I would have known then his evil plan was to crash my kidneys with penicillin…

Then we find out that quack PCP VA doctor had decided that my resulting recurring cellulitis should be treated with penicillin-type antibiotics. So I am dying of sepsis and encephalopathy and ketoacidosis in ICU at the VA Hospital. Was previously infused with Vancomycin/Flagyl drip (working). But they switch to cefepime 😱 whose formulary specifies DO NOT use with patient who has CKD as it can cause severe kidney injury especially if allergic to penicillin!!! Talk about CONTRAINDICATED! Within the first 24 hours, midline had blown again, and edema caused life-threatening blood pressure, fever, and difficulty breathing, hives. But they simply shut off the midline and performed another IV each time it infiltrated, ended up on ventilator in ICU. Nine days of this!! The VA Hospital said I couldn't go home because I "lacked capacity" and sent me to the nursing home to die. Six weeks of hubby raising H3LL to get me out of there. Still have nightmares from it. So now I was put on dialysis chest port at clinic MWF and delivered from our home round-trip by ambulance 🚑! Took about 36 hours to recover each time. Neph finally suggested in-home HHD due to horrendously painful experience each clinic session of treatment. I was ready for hospice. This was NOT a life. It’s torture! I’m a Vietnam veteran (go Air Force!) and I have military service-connected issues and low immunity which may disqualify me for transplant candidacy. Hubby stepped up and offered to do the training, he's a very smart guy and easily learned the procedures. Yes, we get alarms, but after 3 months at home, we still never needed to phone for support. We simply look up the troubleshooting instructions for the alarm and always able to resolve the issue at hand quickly.

Once dialysis began, I lost an unbelievable amount of edema fluid. Down 120kg since May 1!! BTW, PCP also wrote “excessive caloric intake” to hide why I kept gaining weight and worsening lymphedema open ulcers. Lymphatic fluid POURING down my legs and pooling in my shoes. Burning pain and destruction of my skin which has spread to all extremities. Pruritis keeping me awake at night (intense itching rash over entire body). Mind over matter Daddy used to say. Difficult sometimes and one needs to accept 😪 that things no longer are “perfect” to us but the Sweet Lord has NOT forsaken us. He is here to take your burden of pain and suffering. Let Him. Learn how to do this, it’s a skill which takes strong faith. Your mind will be eased as will your loved ones’ minds as you turn your life over to His love and solace. He has completely healed every inch of my lymphedema in both legs. There is no evidence of any lymphedema at all other than the scarring of the lesions, and that is healing as well! Prayers answered! (Continued)

[WIND0WDRESSING]

(Continued)Truly, I know many people who never had much of a spiritual upbringing or understanding of the Bible and personal salvation. My brother and I were extremely lucky to be raised in the parish house by our father, who was ordained in Episcopalian priesthood. It’s a firm trust that though human life can be difficult, faith can strengthen you to have a solid belief system to rely on for those elusive answers to suffering in a crisis.

For HHD, basically one needs to remain calm and take the logical steps to determine what part of process needs correction/attention. We simply call 911 if anything gets critical. They’re here in 5 minutes. Love city life!

Monitoring BP each 30 minutes lets us know if I need a midridine (sp.?) tablet once BP drops below 95/60. No worries 👍🏻 hubby is doing an excellent job. Still using chest port. Hearing horror stories with fistula… but neph says it is far better. We’ll see, my veins are fairly difficult to start IV but anyways!? Much less cramping with Nxstage cycler. Tons of boxes of supplies, but because our newly built house has all city utilities plus we have outstanding whole-house water filtration our water supply passes the testing. No need for bags of fluids supply. Set on PureFlow intake, VA sent plumber to run the lines for cycler out of master bedroom ensuite both supply and drain. Highly recommend HHD over clinic, provided a trustworthy caregiver takes on the responsibility to perform all aspects with a calm attitude. 👌

I agree with above-mentioned “attitude is everything” mental state. If one can compartmentalize this life-support as a necessary nuisance, like getting your teeth straightened with braces (4 years for me, auuuugghh!), it’s easier to dream of a successful transplant one day. It’s painful, but it is “constructive pain”, necessary for a greater benefit like clean blood. I think I’m not minimizing the severity, instead, treasure that it’s a relatively simple process, rationalize it for your own sanity’s sake.

Don’t get bogged down with end-of-life issues, just get your living will set up and DNR preferences in notarized form. Have “the discussion” now and then compartmentalize that too. Have a few good cries with your loved ones to release that concern over the whole loss of previous life and freedom. Take big wailing shrieking sobs to wash out your grief each time it overwhelms you. It’s OK. 😭 Pray for Our Heavenly Father’s grace and mercy. This is how we have hung in there. Faith goes a long way 🙏🏻 in situations like this. Every day when my eyes open again I am reminded that I still have LIFE and we must create joy in simple ways! 😌 We remember that Our Saviour Jesus Christ brought us together for a reason 50 years ago, and our love just continues to grow under His Watch. Pretty special stuff. Lucky, even though complicated, we’re lucky to have our little cottage of our own, decent neighbors who always ask hubby about me and pray for us. It was scary for them seeing the ambulances coming so often, rolling me out on the gurney. Don’t give up because it’s hard. Give in to needing His help 🙏🏻 and ask for His Plan to be revealed. Your prayers are heard. Trust, and listen, you will receive His Protection and His Forgiveness for all our fears, faults, and frailties. SELF-forgiveness and acceptance is key to remaining calm and finding peace within yourself in the crisis. It's OK to be scared, frightened, horrified, and traumatized like when our BP crashes, we feel so sick and beg for euthanasia to get away from the pain. It’s normal. 😉 AND Never believe you can’t cry out loud if you need to. 😢 It takes more strength to allow your emotions the release of your suffering. I don’t cry often. But I also don’t try to stop it when I am choking on my despair! It’s OK!

Our attorneys are handling my VA claim and tort litigation so I let them worry about that. Hopefully VA decides to settle fairly soon with our overwhelming preponderance of evidence. Have C&P exams this week and next.

Both of us are orphans and have just my elder brother and his kids for remaining family. Since they live in Germany there’s just great moral support for pursuing transplant as well.

Hope this helps and we’ll be praying that 🙏🏻 for all of you & yours. What a lovely 😍 group of people here, thank you for this virtual family ❤️ just know it means a lot to us to read such frank and open support.

May the Lord bless you & yours. Happy Thanksgiving, Hanukkah, and Merry Christmas and all the happy holidays we treasure. ❤️