I was a junior high Science teacher... in 2015 my PKD became so profound that I had to quit teaching and have HD 3 times a week for 4 hours a session. The second time I had dialysis I was infiltrated severely... and wound up in hospital.. I have had a bilateral Nephrectomy and my kidneys were football sized. When I started dialysis at the center (which is very caring and professional!) I had really low blood pressure. Since my wife died of incurable cancer I am on my own.. no friends or family... The dialysis center team is my family.
It is the most boring 4 hours ever but I do it no matter what.. I used to be able to read but no longer can; I'm too uncomfortable and all the tubes and blood pressure cuff make it impractical now. I don't listen to music because once again the tubes get tangled up in the headphone cord. They have a TeeVee for each unheated chair.. I do not watch this because television upsets me especially all the reality shows, and the commercials are incessant! The techs and nurses are very kind and caring.
I am new to this site because for the past three years I have been grieving my wife of 34 years and my focus was on bereavement support. I'm trying to re-enter the world and connect with people who share the dialysis procedure. I don't really talk much with the other patients because I have seen so many HD friends, and techs come and then go in my 7 years of dialysis
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1EPXiii
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Hey, 1EPXiii, Welcome to our site. Lots of great people here. So sorry about your wife. I cannot imagine all that you are going through or have been through. I am not new to CKD, but very new to dialysis. I am doing home hemodialysis. It is a lot. No one, but someone who sits in the chair, can feel or know what it is like. I truly am humbled by all who grin and bear it. I am not there yet. I have a ton of anxiety and also true depression dealing with this new reality. I have been trying to be brave and then thought, no, I need share with others how overwhelming and life alternating dialysis is. We need to get better support for mental health. It is the camaraderie of fellow patients that has helped me in the past and I continue to look for that support.
I am actually only on treatment (whihc is actually 2.5 because of all the tests and calibrations it runs while you are on) for now for two hours. But all in all, with set up and take down it is four. Within those 2 plus hours, I read and enjoy it. But I have to keep an eye on all the pressure monitors and flow and also every half hour take my BP. It is doable. Sometimes I chat with either the Med Tech who comes to do my needles or my hubby. They are very long two hours, especially the last 15 minutes...because I have to pee and you cannot come off the machine when you are home. I often think that being in center would allow me to chat with others. A couple of times, while we were in center training, my husband and I played Trivial Pursuit, just the questions, and had others join in. Being home, I do not have the companionship of others on dialysis. But I do have the comfort of being in my PJs and can have my doggie at my feet.
Have you ever tried ear buds. NO wires, just blue tooth to your phone. I got a set for Christmas and they are great. You could listen to Podcasts, comedy shows and music with no tangle and no contamination. You can try a set for under $40.00. When we were in training, I could close my eyes for a while and nap. Cannot do that now. Just some suggestions.
Thank you for your kind response! In my 7 plus years of my four hour three times a week party... I have gone through almost everything very low BP, bleeding after the needles come out, anxiety, depression.. lately it has been helpful to meditate.. can't sleep much because the machines are always loudly beeping! I have through about earbuds, but I don't have a smrt phone and the minute I put headphones of any kind on the tech, nurse or social worker etc.. need my attention. It's hard to remove headphones too with only my left arm which is already trapped in the BP cuff. Dialysis is just not a restful thing. At least my BP has been normal and I like to watch the staff bustling around and listen to their sometimes fun and silly interactions.. The way the center is set up it is not at all conducive to interacting with the fellow patients... plus it is quite noisy!
It's great you can have your furry friend to support you too!
My heart goes out to you. CKD is tough; even more so when you travel this journey alone.
I, too, am battling CKD alone. Unlike you, I never married. I have no immediate family left. I’m currently grappling with complications I’ve encounter following a kidney transplant I received on November 16, 2022. That has not been easy to navigate without immediate family.
I’m a university special education professor. I retire this summer, July 3, 2024, after 46 years of teaching. I suspect I will be much more isolated following retirement.
So, I’ve begun brainstorming ways to stay involved and connected after I retire. These will need to work in tandem with my ongoing medical care. While my medical care needs will likely be different than yours, we will both need to think about things we can do that fit around our medical care and that we can physically do on a regular basis,
I’ve found it helpful to have a life outside my medical appointments. Teaching and other job responsibilities have gotten my mind off my medical challenges. That’s been good for me. While I deeply appreciate support from this forum, I have also valued friendships with people who aren’t grappling with CKD. I think I’m going to try to approach retirement the same way.
So, what does this mean?
1. I’ve decided to get involved in lobbying Congress seeking support for medical research and technology innovations to improve treatments (including better dialysis treatment options) for persons with CKD. I’ve developed intense interests related to improving medical care for persons with CKD.
2. I need some new hobbies . I’ll do some of this virtually and some face to face. Virtual is safer for me with my medical issues. But face to face is also important as it’s a different sort of social connection. I plan to start Bridge which I can do face to face. I’ll also participate in an online book club. I can take some online courses for seniors offered through my university as well.
3. I’ve also identified sone online organizations with which I can volunteer that focus on areas of interest to me.
The first two will be done primarily in person. The final two will be done online.
I’ve begun attending a virtual church. That has provided connections for me that I can safely attend weekly while supporting my spiritual health.
Finally, I host small gatherings with my neighbors outside when the weather permits.
I’ve discovered that I have T-LGL leukemia. We didn’t know about this prior to my kidney transplant. This means that I’ll need to be extremely careful not to get sick even with a basic cold. Consequently, I’ll mask for the rest of my life. Lots of hand sanitizer in addition to hand washing. And I’ll need to adhere to small group gatherings etc for the remainder of my life.
My leukemia has changed how the remainder of my life will unfold. However, I plan to maximize virtual socializing options and carefully participate in a few face to face options.
I hope this gives you a few ideas as to how you can gradually move forward. But take it slowly, a few steps at a time. In the meantime, we’re here for you on this forum now snd always.
Thank you very much for your supportive words! For me, Dialysis was a great opportunity to read but since my wife died I have trouble focusing and my attention span has become like a flea or something. I am an abstract acrylic painter now since I left teaching and that is something I do to help me recover. Sometimes the interactions with the kind and caring staff are the highlight of my day.
Sorry to hear about your health issues, hopefully your positive attitude will help you get through all of this. Peace and love always!
Hi Again, Have you checked out your local recreation or senior ( if you are old enough) center. They often have groups of people who get together to paint and then sometime have a show. Might be fun for you. I joined the Sr. chorus five years ago. Last year my husband joined too. We sing every week and then take our show on the road to nursing homes twice a year. We have made some wonderful friends. We play games after rehearsal and have snacks. It is the best time. Now we get together for other activities.
One of the reasons why the time with dialysis is so overwhelming for me is that it has really changed my non-CKD time. I was the Chairman of the Board for our local ambulance corp. I am not an EMT, but they needed business people and I did that for 3 years. I stepped down and went on the capitol improvement and fund-raising committee and now have even stepped away from that. Both my husband and I am members of the local historical society. I am on the Board and their Communications Director. We both docent once a month. I am on the local Tree Board, which sounds funny, but we do a lot of educational events. I am going to step away from that this month. I am on the Board of Directors for our Food Pantry and head up the volunteers who actually work with the clients and much more. This I love and it does take a lot of time, but it's my favorite. I offer my activities as things that you could look at and get out and be with people. Nothing feels as good as giving back. Check with your local government site to see where they are looking for volunteers. Food pantries always need help.
Then there are all sorts of opportunities in the kidney world as educators, mentors and ambassadors. NKF and AAKP are always looking for people to get involved. That's how I got here. I am an ambassador and educator for both groups, as well as American Heart and American Diabetes Associations. I have done all sorts of things from films in my home, to taped zoom calls to pod casts for all sorts of things. There are legislative activities to participate in to full on teaching an 8-week course. (Pathways) I have worked as a patient advocate for several pharmaceutical companies and that is always great. The more you get involved, the more there is to do.
Sounds as if you're depressed and engaging on a lot of "yes, buts." If you haven't already, you should consider counseling and antidepressant medication. You need to work thru your grief and get some energy back so you can make adjustment to the new normal of your life. And, I agree that dialysis may not be a restful thing, but it is a life saving measure. It's a blessing to people who want to continue to live. Glad you get nice support from the staff, but you need to start making an adjustment to the different life dialysis puts you in. And, I hear that you haven't have much ambition to do so. Many times prolonged grief can rob a person of the energy and ambition to go forward. I wish you the best and keep us posted on how your journey progresses.
I know I'm severely depressed.. been in therapy and under psychiatric care for the past several years, including CBT. I know all about What ifs/yes buts/should haves... I HAVE been making adjustments for the past 7 and a half years. Hopefully you have a support system of family and friends. I have neither. I try my best every day. It is exhausting without any kind of support network except for the Dialysis Center..
So, happy to hear about the mental health treatment that you have been receiving. And, yes, it is hard to move forward without the support of family and friends. Thank Goodness for the support network at the Dialysis Center. Hopefully, during this new year, you can find the energy to make some friends at either local senior centers or by volunteering at some available places. I bet there are some students at your local schools who could benefit from some tutoring or simply some support. Science as a school subject can be overwhelming for some kids and even scary. I'm sure that you can help them with this. As an adult, its difficult to make life long friends, but not so hard to make meaningful social contact with others. The very best of luck with all or any of your endeavors. Many of us have been in that "alone" existence and we know the struggles to change it. Only thing to do is to just keep trying.
Hello welcome to the site sorry to hear about your wife sound like she was your soulmate . Have you tried any support group for grief a lot of churches will have them . Does sound like you have depression your social worker at your center can help with that . I do pd dialysis so I’m not quite the one to help with question of hemo. Maybe bring a pack of card play solitaire can help the time .
Sound like you need some hobby . Rec center community center churches has some program get involve with volunteering somewhere . Best of luck to you .
Thanks for your support ! I am not part of any organized church. I really do not want to take the religion angle. I went to a grief support group by a Church, actually, and their thing was take solace in the bible and we spent most of the sessions watching tedious videos. I do have much stress and worries.. What I need are like minded people to interact and connect with. My hobby is painting abstract art and writing poetry; not stuff most people appreciate I have realized.
Sorry you didn’t find what you were looking for at a church all church greif support group aren’t like that sorry the one you went to didn’t help . Don’t know about abstract art but I write poetry myself and it may escape so I understand and appreciate that fine . Maybe you could teach you abstract art like at a community center or community college .
Welcome! We have a lot in common. I had PKD. While listed they required bilateral nephrectomy to maintain active status on the list. Too many cyst ruptures, stones, infections to cause problems with a transplant kidney. I HATE in center HD. I CANNOT sleep during treatment. Pills, homeopathic, meditation, music, tapping -- nothing helped me. I went on nocturnal home hemodialysis so 8 hrs/night 6 nights per week. Never slept, stayed awake did embroidery, knitted etc. Then it took a couple hours to wind down slept for a few hours then went to work. Did this for about 8 years. Then daughters and 8 grandkids moved in with us after we had moved closer to help them. I left my job and changed docs and clinics. We chose to treat in the evening that way I could help gkids with homework etc., then crawl into bed. By this point was doing a lot of volunteering with ambassadorships travel . Married 40 years and have the greatest guy beside me. I've had lots of arm accesses and catheters. Right now I use a graft so limited use of left arm. Not on transplant list anymore, in my 22nd years of Home Hemodialysis. Lots of great people here. Are you on transplant list? Becoming active outside dialysis life can be very useful. Start a new hobby, club, group etc. First grieve for your old life before dialysis, before the loss of your wife. Try to find something that grounds you or helps you put down roots. Hang in there. Blessings 🥶 stay warm
Thanks for the support! Luckily my Dialysis center was very good from the start.. I was on the list but my only caregiver was my wife of 34 years who died 3 years ago.. I have no family or friends so they will not make me active again unless I have a care system. I don't even think about transplant anymore. I would certainly volunteer if given the opportunity, and I do love to read, listen to music, and create abstract art!
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