Wondering if anyone struggles emotionally, years after the fact? I have been on dialysis for 4.5 years. I can honestly say, that I didn’t go through anger, resentment, denial… when diagnosed. I was 24, had a 9 week premature baby (weighed just a couple of lbs.) - so I just dove in, accepted it, and did what I had to do - I didn’t have time for the drama. (I.e. dialysis, taking care of an infant, learning about the diet, etc). My family however, were a mess at the time - (not now)… and don’t really understand, while seemingly all of a sudden (half a decade later)… I’m bothered by it. (I’m a pretty positive person).
Lately however, I am saddened by my low energy, inability to ‘keep up’ to what my pace once was, and the reality that is. I just feel, every time I set up the machine… 'here we go again". I am tired, really tired - and that scares me.
I suppose I should preface by saying that it has been a tough few weeks (really elevated blood pressure and hospitalization) - which makes me feel like I am not doing enough and I am letting my family down.
Anyone have any strategies these use, when the days are long, and tomorrow looks the same. I don’t really know anyone going through the same thing.
Thanks in advance.
Hang in there Kidney_Mom. You have made it this far so I know you will get through this. I find that my faith is the #1 thing that gets me through all of the problems that I must deal with. I also belong to several support groups where you can talk to people with similar experiences.
I take it you are on home dialysis? Are you on NxStage or do you use the scuba tanks? Perhaps your dialysis script needs tweeking. How are your lab results? Are you receiving adequate dialysis?
Just think about your wondeful infant and that will lift your spirits…
I am a kidney mom, too, but I am not overcome by the struggle. If you, or anyone else for that matter, would like to know what my source of strength is, feel free to email me anytime.
Well, I’m a Kidney Dad and can say that it is not restricted to the Moms…lol. I have been on dialysis for 5.5 years now and I can say that I still go through everything you have mentioned. There are times I get depressed and dare I say even angry that I have to do this 6xWeek. I am on NxStage. I started out on PD, switched to in-center hemo and have been on home hemo for the last 2 years. It gets tedious. I have 2 teenagers and a very active wife that loves nature, but I don’t have the strength to walk to the mailbox. I would remember all of the times we would go to the beach or the Riverwalk or the parks and when I realize that I can’t do those things like I used to, it tees me off. This disease robs your strength. I get a tad bit upset when my family says that they want to go to an amusement park 5 hours away. My 1st thought is how much of a hassle it will be to drag all of this stuff along. Then I think of all of the energy it will take to walk around an amusement park and how I can’t do it. I say “forget it!” I haven’t made up my mind yet if I am going on a cruise later this year. Too much work! When I think of how I used to be and how I am now, it can get me down, but I can’t let it KEEP me down. If it does that, it wins and I HATE losing.
Kidney Mom, it is very normal to have a delayed reaction, especially when you are young and overwhelmed with crises at the point where your kidneys failed. Other folks have found the Coping module of our Kidney School to be very helpful for working through their feelings and taking positive steps. You can find this at: http://www.kidneyschool.org/mod_05/mod5_01.shtml. It takes about 20-30 minutes to go through “live”. Or, you can download a pdf of the module here and read it: http://www.kidneyschool.org/pdfs/KS-Module_05.pdf. To me, it sounded as if you may be getting your treatments in-center. If so, please consider a home treatment. Your chances of surviving to see your grandchildren and staying out of the hospital are so much better at home.
Roy, I’m concerned about your lack of energy. A couple of things come to mind. One is anemia–is your hemoglobin staying in the target range (and preferably toward the higher end of it?). If not, that could cause fatigue. If you are pulling off too much fluid, it could also sap your energy. Since your treatments are getting to be a pain during the day, have you thought about doing them at night? You’d get so much more dialysis that you might find you have more energy (ask Bill P about that), plus it would free up your days… Finally, are you on the transplant list? While survival on daily & nocturnal HD is equivalent to transplant, there’s no doubt that it’s more convenient to carry your renal replacement therapy around with you.
Thanks all, for your responses… it is nice to know that I am not alone.
Dori, I will definetly check out the ‘Kidney School’ presentation you mentioned. I am indeed a home patient, - Gambro/Phoenix Machine (have been at home for 2.5 years) and have had overall improved health - I just find I am jus tired of the whole process.
The toughest part for me, is trying to be a full time mom, wife, daughter, grandchild to ailing grandparents, dialysis patient… oh, and finding/making time for myself. My daughter started school in September, and this has been the biggest challenge - she is sick often now (exposure to all of the kids), so of course, I am sick more often. As you all know, it is more difficult for dialysis patients to bounce back - which leaves me feel almost constantly a step behind. She has birthday parties to attend just about every weekend, and I am trying to ‘squeeze’ in dialysis between all of the normal, day to day obligations (don’t get me wrong, I do all of my prescribed treatments - it’s just a huge juggling act). Never mind trying to paint, or do things that ‘normal’ people do.
I think I am just now, (4.5 years later) feeling robbed of the life I expected to lead, if that makes any sense.
Hi Kidney Mom, Just hearing what you life has handed you and how you handle , I have to say your stronger than me.
It’s strange that you posted on this right now, the last 3/4 wks for me had just brought me down to the low, I haven’t felt in a long time. When I first started dialysis I was upset you name the feeling, at the system.Dialysis still to me is a strange ( not sure what to call it,or the way it is set up) to me.
For me though I’m starting today fresh and will get out and do my best to shake out cob webs. Here in Se Pa the weather is just started to turn for the better. For me walking has always been and will cross my fingers it still will be the best. I like going for walks on the parks trails. This time of year the rebirth of trees , flowers , the birds singing . I like walking by myself so I can stop or move at a pace that I want.
Yes I do like and did just get out this past Sunday for the first time (in a long time) with my better half. And we plan to meet later today.
The other thing for me at least it not just dialysis. Just like most folks we on dialysis are are faced with others issues. Better Half just left. Anyway, when I started dialysis and even today the mind set of the dialysis providers are dialysis , just dialysis. . Ask them there are no other Dr’s . And don’t even bring up family matters. The drive time to the center just hear lab result. my point I guess is if I had just dialysis to deal with , heck I more than anything be out walking and jumping up and down. Right now the thing that was hurting me more than anything.Family issues, yep, just when I was thinking (see what happens when you think) all right we on a roll. We refin. our house, can now see paying it off in 12 yrs. Eleanor can retire at age that both of us are happy. But family issues popped up. Can’t blame anyone can’t be mad, but man oh man.
Another thing music. I love to sit here and post here and read other posts. And have my kind of music in back ground. I love the singer songwriter. so this message board also, which might go without talking about. But it was and still is this board. Sharing the ups and downs of dealing with a system ( the whole system) that is really messed up.
You Know Kidney Mom , I hope and will think of you today and be up beat that you will get the answer, the peace that brings a simle to your face. And calm to your mind. did any of my dribble help . I sure hope it has
best To you
Oh, you are home. Good! Which type? If you’re not doing it at night, would switching to nocturnal free up some me-time?
There’s no question that any type of dialysis can be a grind, even if it does make you feel better than in-center. It would be really nice to just do things like everyone else and not have to fit in this extra thing that others don’t have to worry about. And you definitely catch more viruses when your kids start school. Ugh!
It’s okay to have a “pity party” on occasion, and very natural to feel overwhelmed when you have so much going on. Since it sounds as if you may be a caregiver for your grandparents, you might check out caregiver support options in your area–they can really be helpful. And sometimes just venting and hearing that your gripes are legitimate can help.
On the plus side, it’s getting to be spring, and school will be out before you know it (fewer colds).
It’s really easy to lose yourself when you have others to care for and are so busy. Sometimes, a few moments become available but you don’t know what to do with yourself. You might try making a quick list of ways you can pamper yourself in 15 minutes, 30 minutes, or an hour. This can make it easier to follow through when the time does open up for you (a bubblebath, your favorite magazine, a cup of hot cocoa, a fresh flower in a vase… whatever YOU like).
Just wanted to pop back in, and thank you all for your support. Some absolutely great suggestions, on finding/making time for myself… doing so, has been one of my greatest downfalls - I think we all have to make our mental health a priority (more easily said then done with a schedule so entailing at times).
I appreciate everyone’s openess about their struggles. I think for the most part, I was feeling ‘alone’, and I see/hear from you all, that that is not the case which has given me more hope.
Dori… I am not on the transplant list. I had terrible side effects to the immunosuppresant medications… (tried close to a dozen) - so this as a treament option, is unfortunately not viable at the time. I have also had cancer since being on dialysis - so another road block in the interim.
I do every other day dialysis - with a young child, my sleep is ‘SO VALUABLE’, and I just can’t see my quality of sleep being the same while on nocturnal. Maybe as my daughter gets older… but only time will tell with that.
Anyhow, off to the bus stop!
Talk to you all later.
Kidney_Mom in Canada
Hi Kidney Mom,
You are definitely not alone–lots of company here! Vent any time you like. Everyone has days where things just seem like they’re too much to take, and then usually they get better.
Not sure if it helps, but at least one study has found that sleep quality is better on nocturnal. Obviously, your mileage may vary, and it can take some time to get used to sleeping while doing dialysis. Maybe a new thread on sleep would get you some answers about that from folks who are doing it.