Videos: What’s it like to be on dialysis?

What is it like to be on dialysis?

In my last post I asked for your help in preparing a video for people who have just been told they need dialysis.  It’s a scary time and the first thing most people look for is information they can trust. Who better to provide that information that the BigD community?

I was asked for the video by MaryAnn & Rajiv in Bangalore, India.  They are putting together a range of videos covering dialysis and transplantation.  The video I have prepared has a short introduction then a series of 1 – 2 minute interviews where we asked a broad cross-section of people on dialysis four questions:

  1. How did you feel when you found out that you had to go on dialysis?
  2. How did you feel after you has been on for a few weeks?
  3. How long have you been dialysing
  4. How do you feel now about life on dialysis?

In the Indian video, the interviews are shown together.  But for the BigD blog, I have linked them as separate files, that you can pick and choose as the fancy takes you.

We videoed the interviews using an iPhone 5.  Some people were on dialysis, others not.  Most are in English, though there are also Hindi and Italian versions at the bottom of the page.

Obviously, if you want to make a video (in any language), please do!  Send the file to me via email (or Dropbox or whatever) and I will process it for YouTube add it to the collection.

So, for your viewing and listening pleasure, here is our first BigD Voice-of the-People video post.

8 thoughts on “Videos: What’s it like to be on dialysis?

  1. Your page has been a life saver. I have heard dreadful stories about dialysis and was dreading my.mom having to start we both felt like her life would be over but reading your posts has given us a little peace in going through this process. Thank u

    Like

  2. Pingback: 91 years old and not pleased to be on BigD – welcome to the club! | Big D and Me

  3. It’s very good to hear these stories. Very useful to know life can continue. But did you pick the positive fitter guys? I’ve seen guys on dialysis that don’t seem to cope that well. Is this a fair representation of all the guys doing dialysis at your place? Thank you for putting these videos up. Is coping well more to do with mental health rather than physical health? Is mental health the real demon here?

    Like

  4. Just by accident I clicked on your blog and I feel like I hit the jackpot – I have to start dialysis in a couple of months and I am searching for people with info and you are a treasure trove of good info – Thank You so much. For me I am just looking forward to feeling better than I do now and I realize that this will become my new normal and I am ok with that.

    Like

  5. I have an 86 year old father who has only been on dialysis for 2 years, but he’s also battling lung problems-COPD, early stages of parkinsons and hypertension. He’s bed ridden and lays on his bed all day long day after day. Sometimes a friend comes over and helps us move him to his chair but my dad gets frustrated that he can no longer walk. He receives home dialysis given by my sister. Lately my dad has been acting like a baby, very emotional, crying, and also verbally abusive with my mom and sister and wanting to stop dialysis then the next day he changes his mind and wants to continue. My mom-82yrs old is the one taking care of him and it is becoming very hard for her to do it on her own. I live in a different state and therefore cannot be there to help, and neither my mom or my sister want to put my dad in a nursing or medical facility. He basically has no quality of life anymore and it is starting to worry me that my mom may become ill too. From your experience, do you think that it’s best that we stop dialysis? His kidneys are not functioning and Dr’s say he will not get any better. I don’t want my dad gone, but I also have to think about my mom’s health and everyone’s well being. My sister thinks she’s killing him by stopping the dialysis, but I don’t feel the same way. What are your thoughts?

    Like

    • Hi Isabel. It’s obviously a very emotional time for your family right now. Your father is ill, frustrated and cranky, grieving for his lost health and mobility and taking it out on your mother and sister. It sounds like he has good and bad days and on the bad ones, perhaps in anger and exasperation, says he wants to stop dialysis. The fact that he changes his mind later, when he is calmer, more likely reflects how he really feels; he may well be determined to hang on to life for as long as possible, and secretly hopes that things will improve.

      Alternatively, he may be serious and is hoping to start a conversation.

      I have known several people who have decided not to continue with dialysis, typically on the basis of poor quality of life, minimal prospects for improvement and sometimes just getting too exhausted to go on. In each case it was the patient’s decision, usually after much thought and discussion with family.

      If you feel you want to do more, get your father’s real thoughts out in the open: raise the stopping dialysis question next time you are all together and start a conversation. It may end abruptly or it may lead on.

      In the interim, perhaps the best thing would be to try and arrange some respite care, a few days a week or a month, to give you mother and sister a break, to help them recharge and relax for a while.
      Regards, Greg
      ps: I think this information could be of interest more generally to our readers, so I have also put it up as a weekly post. G

      *As a point of interest, the State of Victoria (Australia) yesterday released a report recommending that euthanasia be made legal for terminally ill patients over the age of 18, enduring pain and suffering only, in the last weeks or months of their natural life.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s