The truth about Home Dialysis

[Bassetmommer]

It has been the hardest month I have ever had in my life. I promised I would write an honest and complete description of the process.

I started on October 16th. The first week, I wrote about already. Not too many issues. But in my head, I was so overwhelmed. I was not ready for dialysis mentally in any way. I have not EVER felt sick. I have had little to no edema. No shortness of breath or other issues. The only time I was every really bad with CKD was when I was passing kidney stones like a goose or in 2018 when I just retiring and majorly stressed. Once I switched to a renal, and then mostly plant-based diet, I felt fine. I was working out and walking 2 miles or more a day.

Well, that is OVER..... for now. Be prepared to mourn. And no matter what anyone says, you have the right to miss your old life. I have fought the fight of not being sick my whole life with first with being a person of size, then the psoriatic arthritis and then the CKD. And since I still do not feel sick, I was in no way prepared for this process. And I was angry and I still am. But I am learning to accept it.

They started me on learning how to set up the machine on day two. This at first is terribly scary. Then, one day it clicks, and you think, why was I so overwhelmed? I was because this thing, this machine, is taking my blood out of my body and putting it through a bunch of tubes and fluids and then pushing it back into my body. MY BLOOD. Any one who does not see this as scary and overwhelming..... But it does get easier.

There is a plastic (oh, don't get me started on the amount of plastic that is used in health care) flat cartridge that has all the tubes and connectors on it. You pull off the tapes and tighten the connectors and slide the whole thing into the machine and close it. You hang the tubes. Easy peasy and I am not making that up.

Fresenius supplies everything including Bluetooth technology. I have an IPAD I sign into and that is what will be monitoring the machine. I have a Bluetooth scale and I could have a Bluetooth blood pressure cuff, and both send their readings right to the IPAD. I will be using an NextStage machine. Unfortunately. BP monitors are terrible on me. So, I use a wrist cuff one that I can turn off and on with my nose.

Now comes the hard part. This was so difficult at first and so scary. YOu connect all the lines to the various other lines. You have to prime them to let out air, and then clamp them. There are basically five lines. But when you first set it up, it seems like there are a million. You have your red arterial, blue venous, saline line and a waste line and a fluid to the machine line. It is all color coded and the more I do it, the easier I get it. But I needed the time to calm down first.

There is more to setting up and I will get into it in another post. But I want to share the good and then the bad first. The Good is,.... if you can do home hemo, DO IT. The people at Fresenius, or at least my center, are the BEST. I have two clinicians assigned to train and monitor me. One is the Charge Nurse. She is Ex-Army with I believe over 20 years of dialysis experience. She is no nonsense and that's just fine with me. And the other is my Med Tech. We just love her to pieces. She also has multiple years of experience. I train with my husband in a private room. He is learning to do many of the maintenance and help me to do things I cannot do be myself. He is my hero right now. The Freedom Center is staffed with wonderful clinicians, and a heck of a riot Admin. It really is like family. I know I am blessed to be there as I know I would not have handled an in-center. My Nephrologist, who I have had for over 20 years, sees me every month right at the clinic. The best thing is they listen. The original plan was for me to do four days a week, 2.5 to 3 hours a day. NO way did I need that. And they were going to take off fluid. The couple of times they tried it was horrendous with the cramps. Not only there, but at home all night. So now, no fluid. As I develop edema, they will address it. So for now, my prescription is 3 days a week, 2 hours.

But here is the bad..... they will not know for a while if that is working and is enough. I had a bad couple of weeks. Two weeks ago, on Monday, they blew through the fistula. It is called infiltration, and it means they went through the vein and popped put the other side. And instead of just stopping it, another clinician came in and poked another place up higher and did the same thing. I will not lie. It was extremely painful, way worse than the surgery. I could not move my arm. They iced it and sent me home. That night I lost it completely. I had a complete and utter meltdown. I cried for hours. The arm blew up and the bruising started. But it was more than that. It was everything. Wednesday, they tried again but the arm was so injured, I was given a reprieve until the following Monday. My arm looked horrible and was in pain for days.

For now, only Nurses can cannulate me. The fistula was too new and needs to harden and get bigger. It was no one's fault really, and it is common to go through this. But it still hurt like a MFer. Two weeks later and it is much better and this week, I was able to have three treatments.

So now I am more comfortable setting up and putting the lines together. We, my dear sweet hubby and I, are learning to work together on things like removing the needles and we practiced cannulating yesterday on a dummy arm. I am beside myself with how amazing my husband has stepped up to help. We pulled needles together on Monday and I spurted a bit a blood on him. He turned white. When we got home, we talked, and it finally hit him what was happening and how much is involved. He is willing and ready now. He too has to learn to accept his fully capable, full on energy wife, who manages everything is not the same anymore.

I will write more because there is so much more. I do want to encourage anyone who is deciding what dialysis to try to go to a home center and check it out. It is possible to do home hemo by yourself. I am learning how to be mostly independent. They have all sorts of tricks and tools to help patients who are by themselves. But this is the best part. You never are really alone. I was afraid that they were going to toss me home before I was ready. Nope. I will probably be training there for another couple of weeks, or as long as I need. Then THEY COME TO ME IN MY HOME FOR AS LONG AS I NEED. I was shocked to hear that. They have had patients who they come out an cannulate for over a year. There is 24 hours clinical and tech service. And there is respite if you need a break and want to come back in house for a bit.

This is long enough. There really is a lot to this. Is it all sunshine and roses? Nope. But if I have to do this, I am glad I went this route.

[Beachgirl32]

I’m glad it working for you yes Dialysis is a life changer it a differnt journey we have to go on. I been doing pd since February now I feel I can do it in my sleep I’m sure you will get that way . Thanks for sharing your experience on hemo machine I had a cousin that did the hemo machince in her rv and her and her husband travel around the country she said she got support where ever she went .

[Oceanviewed]

Thank you for sharing with us - it really helps to read of others experience. Looks like dialysis is in my future for 2024 but who knows. Am going month to month. You are blessed to have a husband who is able and willing to help you. Hope the year ahead goes well for you.

[Bassetmommer in reply to Oceanviewed]

Thanks. I know it is almost scarier when it is looming in the immediate future. My doctor originally told me in 2018 I would be on dialysis within six months. Proved her wrong.... it was almost 6 years.

[Ziggydoodah]

Well I salute you Bassetmommer. I have now been on haemodialysis at the renal unit for about 18 months now. It is certainly life changing. I know you have a medical background but to to be able to learn all this on top of your illness, it is quite an achievement. I just basically handed myself over to the care of the staff. I didn't want to be there and had no interest in learning anything. I didn't want to feel any "connection" to the whole process. I too resisted dialysis. Thought it was a sign of failure and i could never imagine going to hospital 3 times a week and still continue working. It was hard going and I certainly wasn't prepared for my mental vulnerability. Someone on here said you will grieve for your old life and you certainly do that. It is like the 5 stages of grief and boy do I think I have worked through them all 🙄🙄🙄...I am now at acceptance. Its been a long bloody journey..two steps forward and about ten back. However it does get better. Like everything you start getting used to it and it becomes part of your life. You have to remember it's keeping you alive, difficult if you are having an off day, I know. Its just another stage on this journey and another thing you will tick off your list. You have got this. It's okay to feel down about it all but I promise you, there is light at the end of the tunnel 🥰🥰🥰🥰 xx

[Bassetmommer in reply to Ziggydoodah]

Hey Ziggy, You are exactly right. There are stages to the grief process, and I am definitely going through them. I too considered it to be a sign of failure. After six years of fighting this dragon called CKD, it won. That's how I feel. But I know I will move through it. It may sound strange but one of the ways I get stronger is by being a patient advocate. I will do that after I get this process down. I wrote on the other site, that after three good treatments this week with no infiltrations and no issues, yesterday I felt like my old energizer bunny-self. So, it is working.

[bubbaboo2 in reply to Ziggydoodah]

Hi I been doing home hemo for 1 year spent 2 years in center, and just to let you know this is my second time. I was suddenly sick in 1994 and was put on dialysis. Then in March of 1996, I got a kidney transplant. I had freedom for 27 years and the I lost my first born son when he was 31, 3 months later I lost my freedom. I went back on in center in September of 2020. I am currently on a transplant list for the past year, Just praying for a little freedom before I go home to my son. May you find peace in your 😜life always.

[Bassetmommer in reply to bubbaboo2]

Wow, I am so sorry for your many losses. I would love to hear about your experiences with home hemo. Do you do it with someone? What center, what machine do you use? How long did it take you to get home and do it yourself. Do you like it... I mean as a form of dialysis? how often do you do it? And info, tricks or help would be very beneficial.

[bubbaboo2 in reply to Bassetmommer]

Took me a while to get back to you but I do home dialysis, M, W, Fr @ Sat for 3 hour sessions. My machine is a Tablo. It's not perfect like a transplant but it's better than running to the hospital. I do not work at the present time but did for about 30 years. My husband @ son help me get " hooked " up @ " detached " when finished. I order my supplies and they come right to my house except a few that I get from my dialysis unit. I go to hospital once a month for treatment @ labs. Hope this helps. God bless.

[Hidden]

Hi. I just received your comments in my email. My mom, who I registered on this blog for, passed away a month ago. She was 90 and the best person ever. She could not adjust to dialysis, she had other complications, including heart issues and COPD. Best thing that happened was that my brother ordered a heated jacket for her, battery run; she was always so cold. She went to a dialysis center; my dad and she could not do the home dialysis. She struggled for months in and out of the hospital and rehab, and finally decided to discontinue dialysis. All the best to you. I think giving details of your adjustment and issues can be very helpful. Sorry i could not be of more help.

[Bassetmommer in reply to Hidden]

So sorry for you loss.

[cs65 NKF Ambassador]

Hi Bassetmommer, We are mom and dad to a Dalmatian! I feel your pain about infiltrations - I was on hemodialysis for over 4 years before my transplant and suffered those more than once. It helps to start dialysis with a mature fistula and it does get better over time as your access scars from all the needle sticks. Also, I used numbing cream which you can get from your nurse and put on an hour before your treatment. You can wash your hands and arm before your treatment and it will still be effective. I would always be in charge of my access and tell my tech or nurse that I had a fistula close to the surface and caution them not to go too deep because it would cause an infiltration. You will get to know your access over time and know which areas are best to put the needles in. I had an area on mine that was too close to a nerve, so we avoided it. Yes, the nurse or tech will try an area further up your arm if you do infiltrate so you can possibly still get your treatment. It does help to ice the infiltration when it first happens, then the next day(s) you can use a heating pad. Yes, the bruising is ugly and hurts, but it will get better. The best solution is to try to prevent it. I had days when I had to get stuck multiple times, but you learn to just take a deep breath and let it out as the needle goes in. One time, nothing worked, so I did have to go to the hospital and get a temporary chest catheter to use while my access healed. I also had a balloon angioplasty to clear my fistula the next day. They were able to do dialysis at the hospital (it was a weekend). You will learn to be stronger than you think you can be, trust me!

[Imaanforever]

you got this like a true warrior you are and you’re blessed to have a supportive husband, it makes a whole lotta difference. Now having support from your spouse is a different kind of disease and I’m talking from experience so that is AMAZING!!!

Well done!