Everyday goals?

claireo

Hi everyone,

I’ve recently started in the Patient Services team as Relationship and Marketing Manager. In a nutshell, I'm here to make sure we reach anyone with our info and support. To help me do this, I’d be really interested to hear more about your experiences.

I was wondering what kind of everyday goals people found useful to set? Perhaps around food or getting out and about? Do they change over time?

You may have heard that we’ve recently developed an app called ‘My Transplant Tracker’. Don’t worry, you don’t have to have used the app. I’m just trying to get a better understanding of the kind of goals you may find useful to track in a tool like this.

Look forward to hearing from you and getting to know the community a little better. :-)

Claire

Rachelj01

Hello Claire

It's been a while since i was post transplant. if memory services me well below are a few every day goals which I recall

1) getting out of the house
2) walking / exercise (time / distance, to track progress)
3) fatigue (time resting, very important to get it and see that gradually it is easing)
4) food & liquid consumption is important (many transplant patients don't really feel like drinking when it's precisely what they need to do)

I think additionally tracking emotions / mood, physical well-being, milestones e.g. having Hickman Line removed, being given the green light to eat foods such as seafood, soft cheese etc. hair growth

I hope the above is helpful, please do not hesitate to contact me if you require more information.

Rachel

Dieseldrinker62

Hi Claire,

Rachel has given some useful pointers there and I'd agree with them all.

Goals change as you go through transplant and can be many different types, whether they're medical, physical, social and so on.

In terms of medical, it would be things like the first sign of cell counts climbing, discharge from hospital, reducing and coming off discharge from hospital, immuno-suppressants, hickman line removal, reducing the frequency of check ups, starting the course of immunisations, etc.

Physical is the things Rachel has mentioned such as walking, (distance, number of steps), climbing stairs (tough at the start), perhaps going back to the gym, or other exercise such as cycling, swimming, playing sports.

Social would be going out for the first time to a pub or restaurant, going back to work, family gatherings, birthdays and so on.

The idea of tracking emotions is a great one (well done Rachel). We all have good days and bad, but it would be useful to be able to track emotions through the transplant and see the bad days reducing and good days increasing, perhaps linking each to something that made it bad, or good.

I haven't used the my transplant tracker app before but have just installed it to learn more about it. From what I can see it already has a lot of the features Rachel and I have mentioned though the inputs are perhaps more 'manual' in terms of input. A simple 'how are you feeling today' feature that allows you to select a smiley face might be useful followed by 'what have you done today', and so on.

Hope this helps,

Steve

claireo

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claireo

Thanks so much for your replies Rachel and Steve. There sounds like a really wide range of things you worked towards whilst going through your recovery – I can completely see how going out to meet a friend or just being able to walk up a few stairs would be important goals to move towards. All very useful to hear and think about.

Can you remember whether there were any goals that stood out whilst you recovered? Or were they all big achievements in their own right?

Thanks for downloading the app Steve . As you say, quite a lot of these goals are already there. But as it’s quite new we’re especially keen to gather as much feedback as we can, so that we can get a good understanding of how you find tracking your recovery. I really like the smiley-face idea – will let the team know!

If you have any other thoughts or suggestions about goals or the app. Would be great to hear them.

Nice to e-meet you and thanks again,

Claire