Does anyone else feel kinda gobbled up by dialysis? I feel like it ate my life.

[LeesKees_NJ]

I just hit the 3 month mark of doing solo home hemo. The treatments are going great, but I am having trouble getting my groove back. Some days I feel overwhelmed trying to fit everything in and I have to remind myself that it is okay and I try and give myself some grace. It's hard, I work full-time (luckily I can work from home) in addition to the chunk of time HD takes. In all the adjustments I've had to make dealing with renal failure - I kind of lost myself. I used to be very social but time restraints make it hard to get out and see people. I hardly ever even go into the office since I started HD. I just recently started hooking myself up early in the afternoons on dialysis days and now I work the same time I'm doing HD. But I can't always do that because of afternoon meetings, etc. regardless it has helped free up quite a few hours. How do you all deal with it? Would love some ideas!

[Juliepkd]

Crikey! You are doing brilliantly! I am full of admiration. I think you need to cut yourself some slack! You are coping with full time work and doing haemodialysis at home, that's really tough. 3 months isn't very long to adjust to a new regime (although it feels like an eternity, I know!)I found that being on haemo, I had to change my mind set. Rather than fixating on being robbed of precious time, I looked upon it as a necessary inconvenience that allowed me to live the life I wanted to live on non dialysis days . If you are well on your dialysis free days, could you schedule in some office time to catch up with colleagues? The social side of working is really important and Zoom meetings just don't cut it! It's so easy to get totally overwhelmed by all things 'renal' we forget that there are other things we need to do to nurture ourselves. Try to catch up with your friends, an hour to have a coffee in the park made such a difference to my mental well-being. It's the little things that make a huge difference I found.

Don't be too hard on yourself in these early home HD days, you are doing great and your good results are proof that you are!

Wishing all the very best

Julie

[RhenDutchess123]

Its grief...you are mourning for something that has been taken from you ...and it is okay and normal to feel that way...And just like when you lose something or someone, you need to go through the 5 Stages of Grief

#1....Shock...

#2 ....Denial

#3.....Anger

#4. ....Depression

#5...... and finally ...Acceptence..

I am also on Dialysis...about 16 months and it is very Life Changing....but it is not Life Stopping...the alternative is.

As you continue to be on Dialysis and start realizing that you actually are starting to feel better, the burden of doing what you need to do to recieve dialysis starts to become less and less intrusuve...Was there a reason for choosing HD ?..or is their another type of treatment that could work into your daytime needs better ?... I do PD on a Cycler at night while I sleep and it works well for me..I can look back 16 months or a few years back and recognize how ill I actually was...and I start to feel thankful for my Dialysis....I forget many days that I am a Dialysis Patient at all....I now consider it my "Beauty Treatment"

It gets better.....I promise

[Ziggydoodah in reply to RhenDutchess123]

Great reply. I started haemodialysis 7 weeks ago and you are so right. It is like a grieving process. Keep up the great advice!!

[RonZone]

Hey, looks like I'll be following right behind you in a month or so. I get my PD catheter put in on July 18th and then the journey begins. I've been putting dialysis off for 2 and a half years until I "felt bad". My eGFR is 5.8 and I still don't feel that bad to be honest, but I do feel it's time to get the process rolling. I fully realize that dialysis will be life changing and have dreaded it at times, wondering "how" I'm going to pull off working and dialysis and having any kind of life outside of those two. I also have been working from home since Covid hit, and miss all the camaraderie from guys in the office, but I knew that it would be best for me to get used to this new "normal" for me rather than return to the office for a few months, then have to switch back to working from home. So in a way, Covid helped me prepare for what's to come and create my new normal for me. Didn't have a choice. So far, I've managed to use Zoom, Microsoft teams, and an instant messenger called Slack to stay in touch with folks. And so far it's working ok. But I totally get the feeling of isolation you feel. So I was looking around, and found that my little town actually has a group of folks who get together once or twice a month. It's the Over 55 Bunch. They gather to go eat, or do some event, or go to a movie and other stuff once a month. It's never something very expensive. So tomorrow, I've signed up to go to lunch with these folks. Now being on the CKD diet, I'll either not eat anything, just get a drink, or find a plain salad I can get and pick off the tomatoes. But I'll be able to mix and mingle with some folks other than my work buddies (who frankly speaking, aren't that social to begin with--bunch of geeks So we'll see how this goes. Once I start dialysis, I'll definitely have to do some planning to get in work, dialysis and an event since I'll be doing dialysis every day, as you probably do. But overall I feel it will be worth it. Maybe you can find a group like that, or a hobby club that has events or meetings that you can work into your schedule this fall and winter, like a walking group etc, depending on your age and physical abilities. Or may I suggest a volunteer position somewhere that will work within your schedule, even at a local church etc. Don't feel there's "nothing" out there for you. I'm absolutely sure there is. Do some research in your community and see what you can come up with. You may unleash your inner "artist" or "photographer" or "potter" or "black powder rifle expert, or, well whatever talents you have waiting to be born! Keep us posted what you decide in coming weeks/months as you try different things.

[Ziggydoodah in reply to RonZone]

Good luck RonZone.

[RonZone in reply to Ziggydoodah]

Hey, thanks!

[LeesKees_NJ]

Thanks for your kind words of encouragement.

I do home hemo for a few reasons. I am not a PD candidate as I have Polycystic kidneys and I have no room. I am not sure I would do it anyhow as I don't like the idea of an open port. My graft is under the skin so I don't need to worry about getting it infected because it got wet, which is good as my family has a beach house, we're in the ocean and on the sand a lot. I also like the flexibility of doing it when ever I want. I have to do 2 hrs 43 mins each treatment - 4 x a week.

Maybe I'm explaining it wrong - I don't really feel isolated. I have lots of support and great friends. I really try to get out a couple of nights a week. Its more like what RhenDutchess123 said - I mourn the loss of my old life. Everything revolves around dialysis now. If I want to go to the shore I have to adjust my whole week of treatments to get my 4 in to have my weekend free. There's no spontaneity. Everything must be planned. Its quite an adjustment for me. Obviously it is a necessary evil so I am doing it.

It's just I stopped everything for 2 months to concentrate on and learn how to do my home hemo myself. Now that everything is in motion, I'm floundering trying to regain my life that's all. Clearly it will never be the same. I would just like to find a better balance. I was hoping some veterans of dialysis could give me some words of wisdom. I hope I get used to this soon.

[RonZone in reply to LeesKees_NJ]

Hey, I better understand your situation now , and am guessing you are younger than most folks who post on this site, which adds another dimension to your situation that us older folks have passed through already. I will have to admit, I cannot fully understand or empathize because I am older most likely and because I am not there just yet, though I will be in a month or so-I also have PKD and am crossing my fingers that PD will work for me. If it doesn't home hemo will be the next option. I just got back from a beach trip (my last spontaneous trip before starting dialysis) and will miss sitting in the Gulf waves on Navarre beach once I start PD. It's GREAT that you have a good support system of family and friends. I really think that helps a lot, but again, as is the case for most people, even family and friends can't fully understand your experience, what you are dealing with. Folks on this site do, obviously, since they are living in your world, as i will be soon. I too, I'm sure will mourn greatly the loss of spontaneous trips, which I love to do. Planning is NOT my forte, so I will struggle with that part of all this as well until my new normal sets in. My home PD nurse is really good and hopefully will keep me on task, so dialysis becomes just part of my routine, like brushing my teeth, so I can focus on creatively adding some spontaneous events back in after training is over in a couple months. That's the plan anyway, even if those events have to be short day trips (the beach is close enough for an 8 hour day trip) so I can be back to do dialysis at night on a cycler. And Atlanta and all that it offers is within day trip distance as well, and there's LOTS to do there, so I really hope to keep my life lively with those trips. I also will grieve the loss of the snow ski and hiking trips out west, but I've got great memories from those I did get to do to hang on to.

So is life different, absolutely. Can it be fulfilling and enjoyable, in spite of dialysis, absolutely. So take the time you need to grieve your loss and use the folks on this forum for support as well since it could take a while, but then set your sites on future events to focus on, that's what I plan to do. Like what would you like to do for the Holidays this year that would give you something to look forward to? Do you have a halloween costume picked out already? Do you enjoy fall sports? I think it's GREAT that you can still enjoy the beach! Sure, it's a pain to adjust treatment to be able to do so, but once you're there, you get to forget about dialysis for a day or so. I'll be hooked up to a machine each night, so I won't have two days "off" in a row like that but will focus on my "hours off" during the day after 8 hours of dialysis each night.

So keep posting, and get replies from all the great folks on this forum. It helps others to read about your experiences and methods for coping, and solutions you come up with for "processing" all that you are experiencing.

[LeesKees_NJ in reply to RonZone]

Thanks for responding RonZone! You're right no one really understands other than people actually living on dialysis as well. That's why I am grateful to find this forum and to be able to talk to people that truly get it.

I'm not sure what the average age is on here, but I am turning 60 next week. I've found that my body has aged and forgot to take my head with it because in my head, I am still 30-something, LOL!! I'm not ready to sit on disability or retire yet. I still have so much more I want to do. Some of it is not possible at moment until a kidney comes through. I'm not ready to rule that stuff out entirely. I'm not ready to roll over and accept that this is it. I keep telling myself, this is not forever you will get a kidney, and I will continue to do that because it gives me hope. I will NEVER give up hoping. I want to be able to look back on this time as a bump in my road. #goals

[RonZone in reply to LeesKees_NJ]

Your outlook is WONDERFUL. Never lose that. And pass it on to everyone on these pages. That kind of attitude is infectious, and in a good way! I'm way ahead of you age wise, and still work, and also have no plans to retire anytime soon. And I have no intentions of growing moss on my north side as well I plan to keep it moving evert minute I'm not tied to the machine this fall. So send me a PM when you do something fun and tell me all about it! It's good to share stories of adventures and events that you are looking forward to, as well as everyday humdrum stuff, say like dialysis!

[RhenDutchess123 in reply to RonZone]

If the Beach you enjoy visiting is Salt Water...sometimes that is allowed with PD...but need to ask your PD Clinic

[RonZone in reply to RhenDutchess123]

Girl, you just made my day! I sure hope so! Love me some Gulf of Mexico beach time. I'll be sure to ask my PD nurse.

[RhenDutchess123 in reply to RonZone]

I love Beaches too...My Nephologist told me Salt Water was fine...it is lakes and rivers that they guard against because of the bacteria factor...I think this is common advice, but always ask...Keep us posted on how your Journey continues...I realized it's not the horror story most have you believe, at least that is my opinion...Life is still good

[htpi1543]

Hi LeesKees. Ian 79 yo. GFR of 8, got my fistula installed and god willing will heal in another 3 weeks. I am retired and have lots of time on my hand. I am planing to do home HD. My wife is very good support and retired. What scares me is the needles.Is it very painful? How do you overcome that fear of pain. Is here any method by which that pain ( temporary) can be minimized?. Your response will put my mind at ease. God bless you . Thanks

[LeesKees_NJ in reply to htpi1543]

Hi Ian - There's no pain at all with the topical Lidocaine cream they'll prescribe for you. I apply to my graft an hour prior to insertion and wrap my arm in plastic food wrap, not too tightly though, it is just there to hold in your body heat. It helps it get it nice and dumb. You literally don't feel a thing. I am solo and I am able to insert my own needles. I'm not a crazy person, LOL, if this hurt one little bit I'm not sure I could do it either. 😀

[htpi1543 in reply to LeesKees_NJ]

Thanks for your quick response. Puts me at ease.

[LeesKees_NJ in reply to htpi1543]

Best of luck! You'll be amazed at how much better you will feel once you start. Please let me know how you make out. If you or your wife have any other questions, I'm happy to share what I've experienced so far.

[BlueDaisy7890]

I feel like my life revolves around dialysis treatment. When I travel in the US I have to set up visits to centers in each state. The fun part is meeting new technicians and they are all so helpful and curious about my home situation. The hardest part is trying to get and keep a full time job that works around my treatment times. I never get enough sleep during the week. I'm just worn out and need a full day to recover.

[RhenDutchess123]

Can you do your treatments in the evenings before bedtime...then you could sleep right after and help recover from the Dialysis...may help you feel better the next day and feel more productive....and free from Dialysis until 2 hours before bedtime the next day