Suncream and breathlessness

Early recovery
1

Hi

I just had my first all 100% chimerism 8 months after transplant.

I can’t wait to be able to meet up with someone in the garden. I’ve been going stir crazy at home.

I’m still struggling with breathlessness when I walk a few steps which has meant I can’t go out for a walk.
I hope this will improve as I slowly build up my stamina. I’ve had a few setbacks with mouth gvhd etc weight loss and muscle loss.

How have others coped with breathlessness? It was bad then got better and then with gvhd of the mouth got bad again.

The lung function team have made a referral to have a lung function test but I’ve had one before and think its more of a tick box. If anyone can suggest anything else they did to help with this. It’s really debilitating.
I had heart mri recently and that was overall normal.

I’ve never had any problem like this before the transplant. I feel like I’m 36 going on 90 ?

I’m trying to do 5 minutes on a bike inside everyday.

I have sensitive skin so wondered if anyone found particular sun cream factor 50 which doesn’t irritate the skin?

I have gvhd patches on my skin bit of staph infection which I’ve told my team about.

Many thanks

2

Hi Laulau1

What fab news about your 100% chimerism! What a mile stone.

I hear that you feel frustrated with your breathlessness and feeling like it may be a step backwards. To reassure you most of us experience this at any point post SCT. For some it is directly related to decreased lung capacity and it can also be fatigue related.

It is good to know your team are going to monitor you via lung function tests. That should help eleviate any worries. And it is excellent that your heart scans where normal. On that count i would approach the breathlessness as a sign of chronic fatigue.

I appreciate you experience your functioning as though you where in your 90’s that is something i can relate too.

Even 2 years post i experience bad chronic faitgue if not managed appropriately.

Your doing the right thing starting small with a focused exercise activity. Cardio is good to build your stamina. You mention looking forward to seeing a friend, if you feel comfortable exploring going for a short walk with them, see if you can plan rest stops. 5 minutes seems to be your maximum before your tired. At this point you could find a place to rest until you feel a little more yourself. With this nice weather it would be beneficial.

Pacing has been a proven and excellent way to manage breathlessness related to fatigue whicb involves doing things in stages; walking for example in 5 minute chunks the same as your indoor cycling.

Considering you share you have also had muscle loss and weight loss recently would account for decrease in exercise capactiy.

If you are still taking your immune suppression as well this can be a factor.

I have a fatigue plan for when i habe done too much or having a dip with breathlessness, for me that comes and goes. At these points, i walk a little less and breakdown my daily activities i.e. cooking, i chop veg at the table or cheat and use already chopped veg.

Knowing your limits and breaking down tasks can really help.

I hope some of this is helpful on trying to find a way forward.

If there is any other elements to your day being affected due to breathlessness let us know I am sure we all have some tips to manage.

In regards to sun cream. I am unsure, this will be my first summer out of hospital, hooefully other members or nurse specialists can contribute

All the best,
Michelle

3

Hi Laulau, I sympathise with you not being able to meet up with others. I know just how you feel as I’m sure many others do, but it’s wise to be cautious. Hopefully the relaxation of shielding will help you see people, but I’m sure you don’t need me to tell you to be careful.

Breathlessness is something I suffered from in the early days after transplant and it did take a really long time to get my fitness back. I climbed Snowdon 9 months after my transplant, thinking that I’d got some fitness back by then, but I actually had to stop every 10-20 metres to catch my breath. It does take a frustrating length of time to get your fitness back and as you’ve had a few setbacks along the way that might not be helping. All I can say is try not to let it get you down. It will take a long time to recover fully so try to keep up a little exercise and build it up very slowly, but be careful not to overdo it. Give your body time to recover from what it’s been through.

Even now, 8 years later I get breathless very easily if I do anything even particularly strenuous. I can get out of breath just pushing my lawnmower around the grass! I’m quite a bit older than you though at 54 so perhaps it’s a combination of my transplant and my age catching up with me.

I do find that it feels to be worse in the sunshine which feels like it saps my energy from me. I get tired very quickly when it’s sunny. I recall that if you’re on Cyclosporin that you have to take care in the sun and even more so with your skin GvHD as the sun can cause it to flare up severely. I remember my doctors advising me to cover up as much as I could if I was out in the sunshine when I had GvHD.

When I did go out in the sun, like you I used factor 50 sun cream. I can’t remember which it was unfortunately so I’m sorry I can’t help with a brand. I guess it may be a case of trial and error till you find one you can tolerate with your GvHD? I was careful not to spend too long in the sun though and covered up with clothing rather than cream, reserving the cream for my hands and face that were exposed and always wearing a cap to shade my face.

Take care and take it steady. you will get there, it just takes time.

All the best,

Steve

4

Thank you all this is good advice. Yes I have always been careful and tried to stay out of it as much as possible and frequently use sunscreen. I covered up with.jumper and trousers and blanket and sat in the shade.

Thanks I didn’t.know sun flared up gvhd more good tip. This was my first day out when it’s been sunny. I always keep to the shade and don’t like sitting in the sun as I have fair skin.

Thanks guys

5

Hi LauLau

It’s good to hear you are doing so well!!

I can’t give much advice in the way of breathlessness on how to counteract it, but what I found is with time, your stamina will gradually increase and be able to do a little more each day!

In terms of sensitive skin, I had my problems with this in the past. I use a water based sun cream and never had problems with it either.

Hope this helps!

Cameron

6

Thank you ?

7

Hi guys just tried factor 50 sensitive kids suncream ambre solaire worked a treat. First time I didn’t get burnt x

8

Hi laura

Thisnis great to hear. Thanks for sharing it here with us. So i have just opted to be out the sun so your discovery will come in handy. ?

Best,
Michelle