Exercise and kidney disease

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Exercise and kidney disease

Postby Hannah2333 » Mon Oct 10, 2016 10:01 am

Hi
My name is Hannah and I'm a physiotherapist working in a regional renal unit in London. I'm also working towards an MSc in rehabilitation and my dissertation is looking at what factors enable or prevent people with kidney disease being physically active. I have been interviewing patients from our pre-dialysis clinic but found recruitment very challenging. As such I have not reached my desired cohort numbers and my university suggested I could supplement the information gained from my interviews with information gained from patient forums. As I have already been through a lengthy ethics process I would not be permitted to request information formally, via secure questionnaire etc, but as information on a forum is public and people can choose to share or not, this does not require additional ethical clearance. If anyone feels comfortable to share their experiences in this setting my original questions are as follows:

I'm trying to gain a better understanding of how people think and feel about being physically active when they also have kidney disease. I'd like to hear about your experiences.
Is there anything that helps or motivates you to be more active or stops you? How important is or was being physically active before starting dialysis? Have you received any help or support with this? Can you describe any activities you regularly do? Has this changed since you were diagnosed with kidney disease? Do you use any technology to help you? Does your family or work influence how active you are? Anything else you'd like to share?

Many thanks in advance for your time, all information will be treated anonymously and may help to inform how we treat and support people with kidney disease in the future. If moderators agree I'm happy to share my findings once completed.
Last edited by Hannah2333 on Wed Oct 12, 2016 9:20 am, edited 4 times in total.
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Re: Exercise and kidney disease

Postby Thumps » Mon Oct 10, 2016 10:17 am

Hi Hannah,

Generally if health professionals are asking for assistance on the forum they are asked to provide some context - where they are working, what their role specifically is and the reason for seeking information, ie the details of any study to which this is contributing. Some information and requests are, as I'm sure you can understand, quite sensitive in nature.

We would appreciate if you can provide more information about your request before anyone responds.

Thumps
Forum Moderator
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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Re: Exercise and kidney disease

Postby Hannah2333 » Mon Oct 10, 2016 10:34 am

Apologies I hope this provides sufficient clarity, please inform me if this is still not suitable.
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Re: Exercise and kidney disease

Postby rheaybou » Mon Oct 10, 2016 3:30 pm

I would suggest an official questionnaire that is on headed paper/downloaded via a secure site. Because with all due respect, we have no idea who you are.

Another source of information would be via patients at the renal unit you work at, official identification and such will always help as people pass time in waiting rooms and on dialysis.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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Re: Exercise and kidney disease

Postby SKM23435 » Mon Oct 10, 2016 4:13 pm

Hannah,

I agree with what the others have said.
I wouldn't normally reply to such requests but I think this is an important subject discussion of which may just help other forumites

I think it is important to say that some dialysis patients are sicker than others.
We are all individuals.
I was very fortunate as I wasn't on dialysis too long. However my ability to exercise declined as my renal function did. I am aware I would have been able to do a lot less over the following months if I'd not had a transplant.

Pre dialysis it struck me that I was hoping I'd be lucky enough to receive a kidney transplant. For this to be successful it may help if I was in the best possible physical shape I could be (all things considered). My weight was ok, my diet loaded with salt (I still miss the salt) and my cardiovascular fitness hopeless.

The diet changed over time as my kidneys got worse.
I joined a gym. Not to do weights but just to walk, run, cycle, cross train and stretch. I started 3x a week, full of enthusiasm. As my renal function got worse and I started dialysis my energy levels plummeted and I did continue going to the gym. I did less, less energetically and for less time but did what I could still 3x a week. I worked on the theory that a little was better than non. I didn't bother with the gyms offer of a session with a personal trainer. I don't think they would have understood. I listened to my body. Even more importantly I listened to audio books while I did my "stuff" an interesting novel and the time flew. I think my efforts at exercise also helped mentally. It proved to me what I could do. I didn't dwell on how much more I did months previously.

I was fortunate enough to receive a kidney after 11 months on dialysis. So I was not as sick as many dialysis patients. I'm convinced that exercise (I was going to say keeping fit!!??!) helped my recovery.

In some ways now I have a new kidney my motivation has changed. If I'm not careful I work more (desk job) and my. Activity falls. To try and combat this my brother and I both have "fitbits" and a bit of sibling rivalry helps keep my step count up.

Things that make activity less lightly: feeling crap, no energy, time. Need to find something I enjoy (the audio books saved the day).

Things that motivate me: the desire to beat kidney disease (doesn't work but it inspired me). That endorphin buzz after exercise. The hope that I'd be fitter should I get the offer of a kidney.

Exercise I did : gym as above. It was better than walking as I could give up when I'd had enough and didn't have to walk home. I also went at my speed rather than my companions .


Hope that all helps someone.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Re: Exercise and kidney disease

Postby Hannah2333 » Mon Oct 10, 2016 8:38 pm

Thank you for taking the time to respond. In my experience it is a topic many people find interesting. I had hoped to start a discussion that others may also find useful.
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Re: Exercise and kidney disease

Postby rheaybou » Tue Oct 11, 2016 2:04 pm

I don't doubt for one minute that you find it interesting and want to help. However if you are going to publish then some form of questionnaire or survey would be the norm. People would be more than happy to help/share.....but you have to give more specific details of how the information will be used
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
rheaybou
 
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Re: Exercise and kidney disease

Postby SKM23435 » Tue Oct 11, 2016 9:04 pm

Not wishing to take sides here but - if you are going to do a survey, talking or discussion first helps formulate how to frame and which questions to ask. It also gives an idea as to what is important to people so the direction a survey should take. Hannah has removed her question so I am viewing it as a general discussion re exercise on dialysis. People don't have to comment if they don't feel comfortable.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Re: Exercise and kidney disease

Postby rheaybou » Wed Oct 12, 2016 8:14 am

No problem with a general discussion.

But when you see that it could be used in a dissertation, then from experience it needs to be part of a survey/questionnaire. Just giving a little advice on my experiences with people collecting data while sat as an inpatient and during clinics. Make it official and people will always help out.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
rheaybou
 
Posts: 1375
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Exercise and kidney disease

Postby Hannah2333 » Wed Oct 12, 2016 9:07 am

I will re-post and give some context
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Re: Exercise and kidney disease

Postby Thumps » Thu Oct 13, 2016 1:20 pm

Thank you for the clarification, Hannah - having just completed my own MSc dissertation I feel your pain on the struggle to recruit participants! However I'm surprised that your supervisor suggested this course of action without any qualifiers about how the request should be presented - appreciate that you have better framed the questions now.

As this is indeed a public forum, it is now up to individuals to decide if they'd like to respond. Sometimes in the perceived safety of our forum we forget that anyone can look at our content anytime - always worth a reminder. :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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Re: Exercise and kidney disease

Postby Johnylefox » Thu Oct 13, 2016 10:40 pm

Hannah,

I am a dialysis patient awaiting transplant.

I have completed a B Sc some years ago, winning a prize for best dissertation, and I am currently completing year 3 of a distance learning masters degree in a legal field. I remember sending hundreds of questionnaires out and getting about 40 back. I always swore I would help every student who asks for help.

This is actually my second stab at year three, last academic year was the time it all went wrong for me and I was poorly.

I am willing to assist. I am not worried about confidentiality as I am confident there is nothing I can tell you which will incriminate me!

Perhaps a telephone interview?

I will not reveal specifics, I will go in as much detail as the following. Professional male aged early 40s Northern England.

The rest will be about my condition.

Is that ok?
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Re: Exercise and kidney disease

Postby Dixie1 » Fri Oct 14, 2016 6:09 pm

Hi Hannah

I am a professional female, aged 51, stage 5 kidney disease, active on the transplant list but still pre-dialysis. Ditto what johnylefox says, happy to answer your questions, so ask away.

I have copied and pasted in your questions below and answered next to them.

Is there anything that helps or motivates you to be more active or stops you? My biggest motivation is to want to enter the dialysis phase as fit as possible so that, should I be lucky enough to receive a transplant, I will have a faster recovery time and therefore get back to enjoying life as much as I did previously faster. Also - my dogs are a big motivation. They make me feel guilty if I am ever tempted to skip a walk.....With regard to what stops me - well this is a combination of failing to keep the right (positive) mind set, which isn't always possible, and lack of energy. Some days are better than others. I can feel full of beans one day and exhausted another, depending on what I have been doing. Breathlessness/lack of energy when suffering from anaemia is also a major barrier.

How important is or was being physically active before starting dialysis? I believe it is extremely important, both physically AND mentally. Apart from the obvious physical benefits, I also get a mental boost from it. I think it is all to easy to adopt an 'I am ill and don't have much energy, therefore I will take it easy' mind set and then spiral downward in a vicious circle e.g the less you do = the less you are able to = the less you do etc etc Obviously I fully accept that we are all very different and, for some, exercise is really just too much for them, however, I also think that there are those that fall into the category where the block is mental rather than physical.

Have you received any help or support with this? No. And here is the thing - I appreciate funds are short and staff just don't have time in clinic, but I think a much more proactive approach to encouraging the chronically ill to exercise needs to take place. There are plenty of others on hand to help in our clinic for example, with diet, counselling etc but it would be great if patients could also be spoken to, on an individual basis, about the benefits of staying fit. This doesn't have to be mad sessions in the gym. For some it can be just encouragement for a simple walk out to get a paper each day or something. Also, I truly believe that some people don't exercise because they are frightened about the fragility of their health and need to be given the confidence that it is okay to exercise. I think some may well believe that they could be making things worse by partaking in exercise?

Can you describe any activities you regularly do? I used to run but my large oversized kidneys cause a problem with this (very uncomfortable), so I just power walk each day with my dogs.

Has this changed since you were diagnosed with kidney disease? I was diagnosed at around 20 years old, when I still had normal kidney function, and have known about my disease for 30 years. The first 29 of those years I lived a completely normally life, free of any symptoms (running, badminton etc etc). It has only been the last year that running/badminton became too difficult but, as say, I still walk a lot and garden. I also ski and plan to go again in January.

Do you use any technology to help you? I have recently started using a Fitbit, in order to monitor distance and also my calories in versus calories out. That makes me sound obsessive - I'm not, it's just that I want to keep a healthy weight and have found that now, in middle age, this has become more difficult......I agree with others that devices and apps, where you can add others as 'friends', adds a competitive/fun element, which can be quite motivating.

Does your family or work influence how active you are? Yes - my husband motivates me to move. He is sympathetic but does not pander to me. My children would motivate me to be active with them but they are adult and have left home now. Yes, my work is an influence in that, if I have been at work all day, it takes a lot more to motivate myself to move when I get home. It is not so much physical though (as I do less physically at work than I would do on a day off at home) but more a mental tiredness. I am lucky enough to work part time now.

Anything else you'd like to share? I don't think so! Hope this has been some help!
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Re: Exercise and kidney disease

Postby Hannah2333 » Sat Oct 15, 2016 4:21 pm

That's amazing thank you Dixie1, thank you! johnylefox, I'm just waiting for a response from my university to see if a telephone interview would be permitted. Thank you for everyone for getting involved.
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