This is a hard post to write. I am headed for dialysis within the next month or two. NO getting around it now. No chance for reversal or improvement at this point. It was a good fight. I have some questions to start learning about this process. I will be doing home hemodialysis. I am already did the initial interviews; they have done the home eval and approved me. We were just waiting for the start date. I have a ton of questions.....
Why are you on home dialysis?
How often and how much do you do HD?
Was it hard to learn?
Do you regret your decision and if so why?
Do you gain or lose weight on HD.
Can you or do you still get to exercise? Does anyone swim or take water aerobics?
Was there outside costs you were not prepared for?
What advice to you have for a newbie?
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Bassetmommer
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I can’t address your questions but am cheering for you on this major transition. My hope is that the transition goes smoothly and you feel and function very well after you’ve been on HD for a while.
If swimming is no longer an option, I have no doubt you’ll find viable replacement exercise options. I know quite a few on dialysis ride bicycles regularly in addition to walking. I’ve got a recumbent trike I love to ride. I’ll try to inset a picture here. I also have a recumbent elliptical machine…I’ve got bad knees so had to find options that wouldn’t worsen that issue. Then I try to do chair strength and flexibility exercises daily along with balance exercises. These have all been prescribed by a PT due to my knee issues. I was an avid swimmer and water aerobics person before but transitioned when I had to stop driving as my vision deteriorated. I used to love to water walk and on days I wasn’t at the pool I walked 4 miles. But those days are gone due to my knees and my right foot which I fell and injured shortly before the transplant. I’ve been fitted for a permanent brace for my right ankle… So, like me, you may need to embrace alternate forms of exercise while you are on HD. (Maybe a spin class?!?!?) You’ll think of something. You’ve got this!
As far as in home HD goes, my Mom and I were my Dad’s in home HD care partners over 45 years ago. If my Old Order Mennonite Mother, who had never used anything electrical before she and I went for training on the dialysis machine, could learn to do this, I KNOW you can. (If you find yourself stressing out as you head in for fistula placement etc, just picture a 62-year-old Old Order Mennonite women in bonnet and garb heading in to learn to set up and use the dialysis machine. That image should bring a smile to your face. I can assure you it caused quite a stir at the hospital🙂) Right after our first training session I took Mom to buy a washer and dryer. She had done laundry by hand using a scrub board in the bathtub… She wasn’t sure about the washer and dryer. I reminded her that she’d spend many hours a week, when I was teaching and not at home to help, setting up Dad’s dialysis etc. She would need an efficient way to do laundry plus we needed to be sure to maintain a sterile environment. In the course of a week my Mom learned to run a dialysis machine and a washer and dryer🙂 She had an 8th grade parochial (Mennonite) education. But she was a quick learner and approached this as just another phase of life. Dad would joke with her as she administered his dialysis sessions. It literally became a normal part of life in our household. Dad never had an infection while on dialysis. He didn’t have a fistula. We ere administering dialysis via a catheter—not optimal. Your situation will be MUCH better!
You’ve got this! And you’re waitlisted, so dialysis won’t be the final treatment. It will keep you healthy until your donor kidney arrives!!
Jayhawker
Color picture of a 3-wheel recumbent tricycle for adults.
Oh that is such a great story. And I could picture your Mom. We have a lot of Mennonites in our area and shop at a great store that is supported by them. Smart business people and always lovely.
I know right now my fear is of the unknown and unsure future. I almost wish I was there doing it and getting over the waiting. It was a terrible summer with the ups and downs. I am actually just sick of doctors.
I certainly understand about being sick of doctors. And that issue continues post transplant.
Waiting for this stuff to happen is always the worst part for me. I still vividly remember when my kidneys suddenly plummeted from stage 3B well into renal failure the first week of January 2017. After all the time, effort , and stress of trying to do everything perfectly only to see my renal function continue deterioration, I was actually relieved. Until that moment I hadn’t realized just how stressful trying to preserve renal function had been for me.
What you said is so true. My life has been about keeping my kidneys healthy from the air I breathe, who I associate with, my home environment and then the obvious, food, meds and exercise. And it still went downhill. I now know that as I approach this phase that there will be new stressor, but different.
This is why we need patients who are walking the walk to be more involved in healthcare directly. NO one knows better than a patient who has the disease what is involved, the stress and anxiety and the guilt.
I choose home HD because I want the control of my time and life as much as possible. I am also pretty comfortable with medical procedures and actually fascinated by the process. Where I live, the centers are so jammed that you have to sometimes go miles to one, even if there is one closer. There is one less than 2 miles from my house, but I am not sure they are even taking new people. My doctor is not affiliated with it, so I would have to get a new nephrologist. And the hours are chosen for you. The Freedom Center, who is doing the home training for me, is fairly close, maybe a 15-minute drive and my doctor does clinic there.
I followed your story with the PD and others. Although for some it is great. My body shape and the fact that it is very easy to gain weight and I could never go to the pool again, were all factors why I did not go with PD.
Many centers allow solo HHD (no partner). I have many friends who do solo. We used to own a farm and were several miles off blacktop but still able to get Emergency services. If you had say a kitchen fire, would er services be unable to access your home?Blessings
Wishing the best for you ...I do Home PD , and I am so glad I can pick and choose my hours..it takes alot of the "ouch" out of the Dialysis Process.. Look forward to hearing how well you are doing and how much better you feel...When we get Tangoed Up...We just Tango on...
I did solo home hemo for over a year before switching to the clinic 8 months ago. I can try and answer some of your questions.
I used to do it at home because I still work a full-time job. I could hook up in the afternoon during the work day and then be done work and dialysis around the same time. 2 birds/1 stone. I realize I am lucky to be able to work from home.
At home you do it 4x a week a shorter time as opposed to 3x a week a little longer at the clinic. The machines you get at home are not as strong as the machine that used in clinic.
It was not hard to learn how to run the machine. It is a lot of work to maintain it and it's fluid and all your supplies. I feel the hardest part was to do the sticks, it took me a while before I could push the needle in my own arm.
I never regretted it, would go back home if there someone was still living with me. My last adult child just moved out on her own and doing solo home hemo all alone is scary, one mistake could be costly when you are by yourself.
I lost a few pounds in the beginning but was able to gain it back over the last year.
You can go to the gym, swim in pools or the ocean, you are free to live a normal life. There no open port or catheter so no real infection risk.
The cost I would imagine depends on your insurance situation. I have Aenta as my primary and Medicare as my secondary and they have covered everything.
My best advice is to give it a 100%, it is not for everyone. It definitely is not for the weak at heart. You will be thoroughly instructed and tested on everything before they let you go home and do this yourself. They will not give you the green light until they are absolutely sure you can handle it. Once your home, follow your procedures to the T, never try a short cut, that will end up biting you in the ass for sure.
If I could do it, you can do it. It is a commitment so be ready.
Good luck. Feel free to hit me up with any other questions you have.
this is my 6th year on PD. I did hemo for a short while after having my catheter changed. I don't particularly care for hemo. I chose PD from the get-go mainly because I could do it on my own. Learning the machine was not difficult. Hopefully you have room for the 30 or so boxes of solution. I do my PD while I sleep so it is less inconvenient that way. Frees me up during the day to live my life. Once you get into the routine of it it is not all that bad. The main thing is to have a clean area setup and avoid any infections. I have not gained any weight due to PD. Until I get a kidney this is my life and I have learned to roll with the punches. I haven't let having to do PD ruin my life.
Hey Baddstuff...Your life sounds alot like mine...Been on PD about 3 years and do very well on it...no problems...no weight gain . But you say you have been on PD for 8 years ?...why is it taking so long to receive your transplant
no, this is my 6th year on dialysis. My doctor tells me I should be close and I have gotten a couple of calls but only as a backup. Very frustrating. So close. I am hoping this is my year. So looking forward to life without the machine.
Wow, that is terrible. Did they say why it is taking so long for you. I have type A blood and they said that will make the process longer. I cannot imagine being a backup. What a tease.
I’m type A+ (I especially enjoy adding the (+) as I’m such a perfectionist. Of course I’d have A+ blood type…) My wait time, in my region, was originally expected to be 2 1/2 years or a little longer. They were right on track. I received my donor kidney in 2 years and 10 months. But I was inactive for 5 months due to a hospital stsy etc.
I got one call in March of 2022 saying I was the second backup for the donor kidney. But I was in the hospital at the time so they went to the next person on the list to be the second backup.
Last Nov I got a call on a Monday morning saying to stay by the phone. I was, again, the second backup. That evening I got another call saying they were in a holding pattern until the donor kidney could be evaluated. She just wanted to update me and be sure I knew I was still the second backup.
I got another call early the next day saying that I had just been moved up from second backup to first backup. Later that day I got another call that said I should go to the hospital. I was no longer a backup, I was in line to receive a kidney.
I later learned that there were 2 viable kidneys. I received one. Another person received the other. The other person’s surgery was done first because that person was ahead of me on the list. My surgery began at 11:45pm that night and ended at 3:45am the next morning.
So, yes, it is not unusual for waitlisted persons to receive a few “false alarm” calls. I didn’t find that frustrating. Instead I remember thinking after the first call, when I was in the hospital, that I was high enough on the list to begin receiving calls. I saw that as a good thing.
most excellent! I say frustrating because I was so close only to walk away empty handed. My doctor thinks I'm close so I hold out hope that I am. Thanks for sharing!
well, I sure hope so! I'm 68, whatever years I have left I want to live them off the machine. Want to go back to a 'normal' life and put this all behind me. Thanks!
Hi Bassetmommer I just noticed you are doing haemodialysis at home? I didn't realise you could do this, especially with a fistula? So are you inserting your own needles? Sorry if I have picked it up wrong. I know you are in America and I'm UK based.
Hey Ziggy, Yes that is the plan. I have not started yet. It all depends on labs I will do on this Friday, but my last labs indicated it was time. So yes, I will start training to do everything myself at home. That not only includes the setting up and taking down the machine, but cannulating (inserting the needles) and doing blood draws.
Wow I take my hat off to you Bassetmommer. I had lots of issues getting the needles in at the beginning and that was with experienced trained staff!! You really have my upmost respect. Just to warn you, you will probably have the most spectacular bruises, when you start. My arm resembled a huge tattoo the first couple of weeks. Once you get your transplant, you need to make a career out of your knowledge and skills!!
yikes, well I have had so many infusions and blood draws that I think it won't be too bad. They used to practice phlebotomy skills on me.
You made me laugh. I am retired from being the Director of Education for Visiting Nurse Service..... I guess you can't take the teacher out of some people.
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