I’m have been a kidney patient for the last 20 years. I lasted 18 months after the original diagnosis before requiring dialysis. I opted for PD. 18 months after that I received a transplant that lasted 10 years. For the last 8 years I’ve been on PD and am now hoping to transition to NxStage. I imagine that the data is skewed to such a short time because of the large number of older people who succumb to kidney disease and as someone else has said, have co-morbidities. I try not to think about this too much although I do worry because I have a 9 year old son.
I’m sorry that I missed your post until now. It is very common for someone whose kidneys fail, including those whose transplant fails, to be upset. Unfortunately when they become upset, they often take it out on the ones they’re closest to and that they trust the most. Although women cry when they’re depressed, men often express depression as anger. I’d make sure the doctor and social worker at his dialysis clinic know how he’s reacting so they can assess him for depression and make a plan with him to address how he’s feeling. It can help patients to talk with the social worker at their clinic. Some even choose to see counselors outside the clinic. He and you need to understand that it’s not a sign of weakness to seek help at a time like this. Sometimes men are more willing to seek this kind of help if their spouse goes with them plus getting help with your relationship and how you’re communicating can help both of you. You and your husband may want to read the module on Coping on Kidney School. The Coping module is only one of 16 modules that were written for patients and their loved ones. Here’s the link to that module:
You say that he’s upset because he can’t spend money like he did before. Was he working before? Does he want to work now? Sometimes people on dialysis believe they can’t work, but a good number of patients do work full or part-time. Encourage him to talk with his doctor and social worker about his work history and goals. You don’t say what kind of dialysis he is doing now, but patients who do home dialysis (peritoneal dialysis or hemodialysis) often feel better, have fewer diet and fluid limits, and have more time and energy to do things they enjoy doing, including work. Check out the 5 Types of Home Dialysis. There’s a chart that would help him consider what is important to him by looking at pros and cons of different treatment types. Also, Kidney School has a module on treatment options.
http://www.homedialysis.org/learn/types/ (5 Types of Home Dialysis)
http://www.kidneyschool.org/m02/ (Treatment Options)
If your husband receives Social Security disability benefits, there are work incentives he could use to get back to work without risking his benefits right away. You can read about these in the “Red Book” at this site:
Your husband is only 55 and has the potential to live a long time and a good life in spite of having kidney disease. It’s important that his quality of life is as good as it can be. He may be able to do a treatment that fits better for him. He may even get another transplant. Patients who have done well and lived a long time on dialysis have told us the key things they found that helped them included learning as much as they could, taking an active role in their treatment, and working to maintain as positive an attitude as they could. Hopefully what they learned will help you and him.
Hi…I’ve been reading all the posts and found them really helpful. I’ve been on dialysis for 18 months now and am still struggling to find my ‘place’ in the world. After being seriously ill very suddenly I went back to work far too soon and felt rubbish all the time. I just assumed that’s how somebody with renal failure should expect to feel permanently. But I’ve since given up that job and now work part time, which is so much better for me. I’m also doing an internship in an advertising agency a couple of days a week. It’s down to the individual. I do really struggle financially though and have to keep my car in order to get to the hospital for dialysis. I should add that I was a single parent for many years and worked full time all the years my 3 children were growing up…which was exhausting! Now I don’t feel bad about the fact that some days it’s all I can do to take care of myself and do the housework. I admire anybody who holds down full time work as I did, but you have to find the right balance…and when you live alone as I do, with not much family support then you have to do what’s right for you. I believe in pushing myself to find my limits, but I’m gradually coming to terms with just how exhausted I get…which I find the most frustrating thing! Good luck to all of you!!!
Guest, if you “felt rubbish all the time”, I wonder if you are/were doing in-center hemo?
You say you feel exhausted. How are your lab results compared to “normal” labs for people with kidney failure? Have your reported how exhausted you feel to your nurse and doctor? What have they suggested? Common things that may cause fatigue are anemia and malnutrition and even getting too little dialysis. Other labs can affect your muscles, like potassium, calcium and magnesium. Another thing that can make you feel exhausted is depression. You’ve only been on dialysis 18 months and it takes time to get used to the changes that come with dialysis. You’ve had to reduce your work hours and that’s caused a finarancial strain, and you say you have little family support. All of these things can make it hard to see the light at the end of the tunnel. Have you talked with the dialysis clinic social worker? That’s what he/she is there for. It’s great that you’re using some of your time off from your part-time job to intern at advertising agency. If that’s work you enjoy, perhaps it will lead to a permanent position that’s more rewarding than the part-time work you’re doing now. I know you say that some days you can barely do the things around the house you need to do, but amazingly adding a little daily physical activity to your daily routine may help you feel more energetic. If you exercise (even walking is good) with a friend, it will also give you a social outlet that can take your mind off your troubles and give you someone you can support and who can support you.
Just curious…What type of dialysis are you doing? Some types of dialysis are more physically draining than others.
Thankyou so much for all your positive comments , we are new to all this. I must admit there is alot of fear , but since reading all of your comments we are not so scared any more.It helps the two of us meaning myself and my husband have a total different outlook on it.He just found out he is in stage 4 , kidney specialist is talking about a av fistula access with us and possibly dialysis within a year or so …Thankyou so much for all of your input , its really appreciated more than you will ever know,May God bless each and every one of you …He just turned 50 and im looking forward to a long life ahead for my husband and myself…
Thanks I needed to see this-my stepfather is 82 and has been on dialysis for a little over a year-the doc told him maybe only a couple of years when he was diagnosised…nice to know maybe longer[QUOTE=Daughter of Patient;19417]I know this post is old, but I wanted to inform ya’ll that my Dad started Dialysis at age 77. He was told this was his only option as he was too old to qualify for a transplant. He is now 83 and still on Dialysis. He has no other health problems other than this.
Maybe this will give you an example of what can be done with prayer and will to live. Good luck to all who are on Dialysis.[/QUOTE]
My dad is 87 with only one kidney post nephrectomy 12 years ago. Now his remaining kidney is starting to fail him and he has fluid buildup in his lungs and feet. He’s on oxygen and doesn’t want dialysis for fear that it’s “a death sentence” his exact words. But at this rate hes like to die from respiratory arrest. How can I convince him to do dialysis ? Thank you John.
The truth is kidney failure is a death sentence without treatment. Dialysis and kidney transplant allow those with kidney failure who would die otherwise to live. Here’s a booklet from the National Kidney Foundation about what will happen if you choose not to do dialysis:
I suspect your father may have mistaken beliefs about dialysis based on how the media presents dialysis when highlighting the need for more donated kidneys for transplant. I’d encourage your father to learn all he can about ALL options for treatment before making any decision. For example, many people think that hemodialysis in a clinic 3 times a week is the only option. For many, that feels too limiting. Patients who don’t want to be that limited choose to do one of the types of home dialysis. Home dialysis offers more scheduling flexibility, usually a more liberal diet and fluid limit, and patients who do home peritoneal or hemodialysis often feel better. Most patients who live alone can learn to do peritoneal dialysis without help. If your father lives with someone else or has someone to help, he and his helper could learn to do hemodialysis at home. Home training nurses are excellent at explaining different home options. You can find a short video, info about each of the home dialysis options, and chart that compares each of the home dialysis treatments with in-center dialysis here:
Here’s a fact sheet dispelling myths about dialysis:
You might also want to show him the patient stories here http://homedialysis.org/types/patient_stories or suggest that he ask his doctor if he can speak to other dialysis patients who have chosen various treatments.
If your father chooses to do dialysis and if he finds later that the burdens outweigh the benefits, he will have the option to discontinue dialysis and let natural death occur. Here’s information from NKF on stopping dialysis:
My mother in law is 92yrs old and has been on dialysis for 15 yrs.
When I began Dialysis I had approx 5% kidney function and was ill only twice, once I began the treatments I was sick quiet a few times because the techs were unable to find my correct withdrawl rates and dry weight, once these items were found my treatments have been uneventful, I have never been to the hospital and no longer get ill, I have treatments 3 days per week for 4.5 hrs each treatment, I have been going to the center for 1.5 years and so far have not been interested in a transplant, I look forward to many more years of life…something you should all remember, don’t miss a single treatment and don’t cut your treatments short.
It’s great that you’re getting 4.5 hours of treatment, Guest. Four hours is the least someone should get, and more is better.
Thanks to all who took the time to post here. 48 years old and diagnosed with ESR failure. Still has a lot of energy in me, used to travel a lot in my job. Kind of lost where to go from here and worry over treatment cost. Just dropping a few lines while lying on the hospital bed.
I’ve read everything from beginning till end. How’s everybody doing here? Can you tell us about what’s going on your life now? This forum is from 2005, now it’s already 2017 how are you now? Is everybody doing fine?
Sharing my story. My father is taking dialysis for 3 months now and it’s hard seeing your loveone suffer from this kind of illness, Since its so sudden, youre ok and suddenly youre not. My father, Sometimes he’s happy but mostly depress like he think he’s a burden to us but actually no. For other patient taking dialysis don’t think you are burden to your family coz its not. For me as his daughter i advise him to enjoy life but dont force his body to the limit since youre taking medication right now. There are other great stuff to do like singing, cooking, reading or even sharing experience like this that might inspire others. Dont loose hope. Always remember that everything happens for a reason. Everything has a purpose. Always be positive. Enjoy life. I know some of us thought of giving up but pls dont. Divert your thoughts from others things. I know its painful but i know you can fight it. Have a great years ahead for all of us. Looking forward to read updated stories here.
Your father and your family may be interested in reading the information in Kidney School. There are modules on Living Successfully with Kidney Disease, Coping with Kidney Disease, Staying Active with Kidney Disease and more. Check out http://www.kidneyschool.org/mods/.
A post was split to a new topic: Home PD: What to expect
I’m still doing it one treatment at a time.
Was in London in February
After 21 years working through the union I retired just about exactly a year ago.
Thank you … I am 77… I hope all is well with your Dad.
‘exhaustion’, yes! Have kind of readjusted myself around it. Before i was put on IHD, i would work 10-12 hours (even 16 some times). Now, that’s reduced to a max. 6hrs (4-5 hrs/day average). Now, when i’m exhausted, i’m done. But, by God’s Grace, after i’ve taken the rest i need, i’m up & at it again!
Have gone past a 10 yr ‘grace’-period undergoing Hemodialysis at four different centres; abandoning myself & the situation into Hands that have asked that i simply ‘trust in Him’. Have seen ‘faithful Providence’ all these years when i was out of options to provide for the huge related expenses. Now, whether its the time on this side or that which awaits in the next, i know which Way i got to keep walking…
I hope that i be found ‘preparing’…
I hope that i be found growing in ‘trust’
I hope by then, to have grown humble & loving…
I hope that there will be at least little differences that i might’ve made to at least a few lives…
I hope that at least a few lives would remember at least a few things & b able to thank the One that’s placed me here for the time.
But, i really hope most that i be found growing in ‘trust’
I hope by then, to have grown humble & loving…
You are amazing! Whenever I read posts by yourself, Bill or Pierre I feel this old world of ours isn’t so big and bad after all!
Even though I live on the other side of the world it is great to know people support each other and give out such strength.