What is important to you?

[Gaffer]

Hi everyone,

Being mindful that everyone is different in some way....I have 3 questions to ask so we could the best app for you.

1. What does a dialysis patient need in an app that a transplant patient doesn't need?

2. How often do you weigh yourself?

3. would a smart water bottle, one that calculates how much you are drinking, be useful?

Thanks a lot!

[GA_DAWG]

Gaffer, don't know about the water bottle. It has been my observation that the people who routinely take on too much fluid, will do so regardless of anything. I hear doctors, techs, nurses, social workers, all tell them how much they need to cut down on fluids, yet they go right ahead. Most sit and look incredulous while saying they didn't drink that much.

[iolaire]

1. sorry no clear answer here
but - people can use help identifying the mineral (phosphorus etc.) content of what they eat but that would be highly country specific.  Lots of the nutrition sites have raw foods listed, or they have some mass market foods but not all.  To be very helpful you would have to be able to generate the mineral data on all 20 types of McDonalds hamburgers, all the Burger King hamburgers, and also some sort of number for your typical 1/4 pound or half pound restaurant burger,  plus be able to tell the mineral content on 75%, 79%, 80%, 90% hamburger meats and do it fast and easily from the data entry side.

2. we are weighted at each dialysis session - so three times per week, I'd guess back when I was on dialysis I might have weighed myself maybe 1 or 2 extra times per week.

3. I don't think so but it might be the type of gift well meaning family members might purchase for dialysis patients.  I really don't think the typical dialysis patient is a huge water drinker.  Lots of people are getting their liquids via juice, coffee, tea, soda, etc... think convenience foods and drinks.  I've always drank a lot of water so I know the size of my water bottle, but I drink it with ice so my estimates were not exact..

[Gaffer]

Thanks iolaire and GA_DAWG - I thought as much re the water bottle; being restricted is a real challenge as much as being told you need to drink  "all the time" post transplant.

As for food - that's certainly a whole other challenge and I perhaps naively didn't consider the fast food chains...my bad.

[lulu836]

IMHO an all encompassing app is not possible.  With no reference to transplant whatsoever adjusting to and living successfully with D is a state of mind.  Each patient can put their own spin on the situation but at the end of the day what we all want (myself anyway) is to do the best thing for me in the shortest, safe manner possible.  As stated above a positive attitude and a willingness to achieve it are personal and private endeavors.  No one can quantify that with an app.

It has taken me 3 years to fully adapt to and accept the need for D and the "gotchas" of noncompliance.  At first I resisted the entire idea.  That resistance cost me several hospital stays.  Then there is denial.  Followed by grief.  See a pattern here?  The same steps necessary for coming to terms with horrible news or the loss of a loved one are the same as accepting that you have this end stage disease and that as long as you draw breath on this earth you will be dependent on the existence of a dialysis machine and professionals to use those machines on you.

After a patient gets over the whining and moaning and bargaining stages, life on D is not that bad.  Personally, I do in-clinic hemo, 3 days a week, 3hrs 15min.  On my off days I track what I drink and eat closely.  To pass the time while on the dialyzer I read and surf the net on my tablet.  I also take an insulated 10oz "glass" of whatever beverage I have been craving during my time off and thoroughly enjoy consuming it with the knowledge that the machine is taking it away at the same time (sort of).

My in-clinic staff and management are wonderful (mostly).  Their mantra is that they will cooperate as fully as medically possible with the patients' wants and needs.  If I am doing a challenge they will ask me every time without fail what I want to go for on the current dialysis day.  Every patient is treated with respect.  The staff makes us feel that their goal is for a successful session.

1.  No input from me

2.  Twice a day on dialysis days.........once a day on days off

3.  No.  Please realize that we are not good little automatons that drink only water and then only from a designated vessel.

Just a suggestion..........perhaps it would benefit your endeavor to "walk a mile in my shoes".  With the exception of actually being placed on a dialysis machine spend 7 days on our diet and fluid consumption restriction.  Also confine yourself to one chair in one place without any breaks for 3 hours for 3 days during the week.  On those three days after sitting in the chair run a 26 mile marathon to get the full effect of one dialysis session and last but not least after dialysis, function as a normal family member.  Several people that I know of have decided to "help the unfortunate kidney patients" with one or the other apps/appliances/electronics to no avail.

[Marilee]

My hubby is a Peritoneal Dialysis patient: His food restrictions & diet are actually a bit different than those on hemodialysis, but he wouldn't use an App to plan his meals (we used the USDA Food database, built our recipes and printed them out via our PC). He doesn't need an app to remember to take his medications (for the high blood pressure that ruined his kidneys in the first place), nor a reminder to hook up every night. We manage our own inventory of supplies via an Excel spreadsheet and a phone call once a month, and I need to see the whole thing on a piece of paper - not a small screen (because my older eyes would struggle with that).
To answer your specific questions:
1. I am clueless about what a transplant pt. might need.
2. Hubby weighs prior to each dialysis treatment, i.e. once a day, and keys it into the dialysis machine (no need for an app for this). He gets a monthly summary from the clinic when we visit. Same goes for blood pressure readings.
3. There are plenty of water bottles out there with ounces marked on them. Right now hubby's not water restricted, but if/when the time comes, I'll likely fill a large container with the day's allotment and use some for morning coffee, tea, cooking, etc.

ps. Neither hubby or I own or use smart phones. We just don't need 'em, don't need to pay for the monthly service on top of our monthly Internet jazz. Reception is lousy where we live.

[iolaire]

As a transplant patient the only app I've used is a iPhone alarm.  Initially I needed five reminders, now I only have one 5 am reminder for my pills well I sleep, the other two doses I can remember.  I doubt it would help to make transplant specific alarm.