GvHD of the lungs

[elliemh]

Hi all

I am new to this site. I am not posting about myself but about my 32 year old brother. 9 years ago he had a stem cell transplant to treat leukaemia (I was his donor), which has been in remission ever since. We have been lucky enough to have 9 good years during which time he has worked full time, had an active social life and moved to London with his girlfriend. There have been many side effects of the treatment, but the most serious has been GvHD which over time, reduced his lung function to around 30% through fibrosis.

Drugs have probably slowed the decline, but don't seem to have been able to halt it completely and around Easter time, the docs started to talk about lung transplant. Amazingly, he has fought off infections in the past, and like I say, until very recently led a relatively normal life. He was never going to be able to play sport or do heavy lifting, but it didn't hold him back too much. Sadly, in early May he got an infection which he couldn't fight and was admitted to hospital. After a few days in critical care, he was back on the haematology ward and was making a small improvement, when he was hit with a secondary infection, and on top of already scarred and inflamed lungs, this completely floored him. He has now been in hospital 2 months, half of which in critical care and it is just awful. Twice we have been told he isn't going to make it, but over the last 2 weeks, he's worked hard with his physio, nutrition and oxygen weaning, and late last night, came out of critical care, back to haematology. We have no idea what the future holds. He is incredibly vulnerable and is still so dependent on oxygen. He finds sitting in a chair exhausting and has been standing with a frame for a few minutes at a time. That is all he can do and his old life seems such a long way away. Obviously the whole family and his girlfriend and friends are devastated by what's happened to him. You go from hope to despair, anger to sadness, guilt to resentment in the blink of an eye. He's fighting so hard but for what, so he can be considered for a transplant which has a slim chance of success. They have said he would only be able to have one lung as the chest cavity isn't big enough for two (his left lung is essentially useless), and the likelihood is a transplanted lung would get GvHD in time.

But one good lung is better than what he's got now... He's so young and has so much love and support, he wants to live but I don't know how he can psychologically deal with it all. It's horrible to see him suffer. We're all adjusting to the fact that this is long term, and no-one knows how far he can recover, or what his life might be like. I have been reading other posts on this site and it's comforting to know he's not alone in what he's going through, that there is support available, and that there is hope, however small. I admire you all just as I admire my brother. We are so proud of him, but dreadfully sad as things still look so bleak. Coming out of critical care is a massive step but he's got such a long way to go and we feel powerless to help him. We are trying to cope and get on with our own lives as best we can, but there doesn't seem to be any level of normality at the moment. Work is a bit of a distraction and I'm grateful for that. I find it hard to enjoy anything and then feel I should enjoy the little things, and then feel guilty because he's stuck in there. My mum and dad are up with him in the week and I go at weekends. His girlfriend is amazing and goes every day, it's all consuming.

Thank you for listening and I would be very grateful to hear from anyone with experience of this condition, or their families.

All best wishes

Ellie

[Sohara]

Dear Ellie, I was so moved by your brothers story, you must be so worried about him, this is also hard for you and your family.

Its tough to watch the ones you love suffer, especially when they are young and have so much to live for

I hope and pray that your brother keeps improving his strength and that his transplant does help him back to a semi normal life at least

Just help him to fight and keep going....they are discovering new drugs/treatments etc all the time....while he lives there is always hope

You are a wonderful sister for anyone to have...he is indeed lucky in that

Do come in here and 'talk' about your brother, it helps to know there are people that care

and we DO care Ellie

*BIG HUG*

Lots of love Sohara

[elliemh in reply to Sohara]

Thanks Sohara, that's so lovely of you. I really appreciate it and the support of everyone. Hope you are getting what you need too.

Ellie

[kimmy59]

Hello and welcome.

I have severe Emphysema so I understand the breathing side because my lung function is less than 30%, although I've never experienced the other things your brother has. What I can tell you is everyone here are fantastic and very supportive, and should you need to chat 24/7 someone is normally on line. I would ring BLF helpline they are brilliant and help with any of your questions.

You cant put a time limit on how long the recovery will take, slowly and one step at a time. I've had pneumonia twice and it took 3 and 6 months to get better, and sometimes I thought it would never happen as I couldn't walk across the room. Yesterday I was out shopping.

Don't beat yourself up for being well it's not sure fault your brothers ill, he's fought back against the odds and I'm sure will go on to get better with his family and friends by his side.

Kim xxxx

[elliemh in reply to kimmy59]

Hi Kim

Thanks for your reply. I think you're absolutely right, it's pointless to put a time on it, we just need to see progress, however slow. Well done for the massive improvement you made from when you had pneumonia, that's very encouraging. It's so worrying as another infection could knock him back again and each time he's a little bit weaker and less able to fight. He needs so much luck right now. I keep telling him, sometimes odds are wrong and people surprise even the most knowledgeable doctors!

Thanks again and all best

Ellie

[jenss]

Dear Ellie, I am so very sorry to hear about your brother. This is so difficult and horrible for your family and friends and especially your brother. I don't have any experience with what your brother and family/friends are going through but I wish you all hope and strength and will keep your brother in my prayers. Lots of love to you allxx

[elliemh]

Thanks jenss, hope and strength are what we need, to keep going and to survive this awful time. Others on this site are living proof it can happen and he's still with us so we need to keep him as positive as we can.

All the best to you

E

[longlungs]

Hello Ellie welcome how lovely to meet you and hear your brothers story so far.What strength he has I have to admire his will ,the brain is a very powerful organ and positivity really does help more than we can imagine and your brother seems to have lots.I really do hope that he can stay infection free and slowly build his strength back up get home away from hospital germs.What a lovely family he has to support care and love him.Life throws us these curve balls which we deal with aswell as continuing to live a reasonable life along side,please dont ever feel guilty you sound like a brilliant sister to have.Wishing you all well and positive get well wishes to your brother.Please keep in touch and share with us it always helps to share. Janexx

[elliemh in reply to longlungs]

Thanks Jane for your lovely reply. Yes, I'm not sure where the greatest risk is, in or out of hospital when it comes to infections. It is a concern as he lives in London so lots of people, but we are not at the stage of considering all those practical implications yet.

He has always been very stoic and we're basically ok as long as he's ok in himself, however ill he is. When he is very sad or distressed it is so hard to stay strong.

Thanks again for your kind words

Ellie

[dall05]

There is always hope Ellie and your brother sounds like a true fighter. I had a 2 1/2 month break in ICU and my family were told I wouldn't survive but here I am 4 years on so never give up.

I have been where your brother is now, I was winched around in a cradle and could only last 30 minutes sat in a chair or later stand with support for only seconds without severe breathlessness all while on high flow oxygen. It was a one hell of a journey getting back from there but one your brother can make as he is so young. I was 51 then and managed to prove the experts wrong so he has every chance but it will be a slow and difficult road ahead. I was very lucky to have amazing family support as your brother has which makes a massive difference on your road back from the lowest possible place.

Stay positive and keep him positive too when the doubts creep in.

Tony x

[elliemh in reply to dall05]

Thanks Tony for your incredibly positive reply. That is so great to hear, and I can only imagine the work you put in to get you back to where you are. Being in bed for such a long time makes you weak all over, just at a time when you need your strength to help improve your lungs. So, so hard. How is your lung function now?

Glad to hear you have excellent support, and that it makes a difference. Sometimes it feels like all we can do is be there with him.

Thanks for sharing your story with me

Ellie

[dall05 in reply to elliemh]

Its pretty tough when you have very little muscle and lung function at the same time so it makes recovery so much more difficult. There were times when I doubted it was possible but all around me stayed strong and positive so I gave it my best shot. It was only later the nurses were more truthful and told me I was a miracle but they also said a lot of it was down to staying positive even when the daily physio was like a torture session which luckily my family didn't have to witness.

When they wheel chaired me in for my 1st lung function test after 3 months it wouldn't even register on the machine but now I can walk miles with my oxygen back pack, my FEV1 is 66% but my TLCO (gas transfer) is 33% which is why I'm under the transplant team at Birmingham QE.

My quality of life is good and has been stable now for 3 years with a few blips here and there of course.

I have a problem where my immune system has turned on my lungs and because of this I am on immune suppressants (Mycophenolate and steroids) very simIlar to GvHD

I can't stress how important it is to keep your brother in a positive frame of mind but to have been through what he has already he sounds like a tough cookie and a survivor and will be able to draw on his experiences to help get him through.

There are a few walking miracles on this site and we have room for more so I'm sending your brother an invite he can't refuse eh'

Tony x

[elliemh in reply to dall05]

Hi Tony, a walking miracle would definitely be good! May I ask how long you were in hospital after you came out of ICU, and then what kind of additional support you needed at home while on your road to recovery? My brother has been measured for a wheelchair as he is very tall, but not sure what else he'll need.

Thanks

Ellie

[dall05 in reply to elliemh]

Hi ellie, After leaving ICU I was on the wards for a further 6 weeks where the physios and nurses worked hard on me and got me back on my feet. On the day I left hospital they did a 6 minute walk test on me.

I managed 100 meters on 5 liters of oxygen, my daughter and physio followed with a wheel chair which I had to use 5 times in that 6 minutes due to pretty severe shortness of breath. I'm now doing 497 meters 'off oxygen' in 6 minutes 4 years later.

I came home with Home oxygen, a wheel chair, a bed down stairs in our dinning room, a perching stool for washing down with, a raised toilet seat as once I was sat down I couldn't get up again, and a walking stick.

I then had home care nurses and district nurses coming for around six weeks looking after me while my wife went to work. The physio used to come and torture me too until I surprised her one day and got up the stairs.

As I progressed I then started walking around my estate slowly increasing the distance.

The next step was Pulmonary Rehab which was amazing and set me up for getting to where I am now.

Hope things are going as well as they can for you and your brother.

If I can help in anyway don't hesitate to ask, Tony.

[elliemh in reply to dall05]

Hi Tony

How are things with you? My brother is still working very hard, and celebrated his birthday in hospital last week. His transplant assessment is towards the end of Aug, would you mind telling me a bit more about what's involved in that. I think he has to walk 10 metres, which seems like a Herculean task. He is now able to take a few steps with frame, and transfer from bed to frame, and frame to wheelchair etc, which is great. I think his muscular strength is improving, although he's had lots of associated aches and pains, but not sure breathing is improving that much. He has been outside in his wheelchair which was a real boost after so long.

They are starting to talk about a discharge plan which is a huge amount to get his head round and very daunting. It's complicated by the fact that he's in a small, first floor rented flat. The reality is really hitting home and it's so hard to imagine how it's going to work. Not even sure they can pay the rent, let alone get the adjustments they need and oxygen installed etc. Imagine you'd need to tell the other tenants and the insurers because of fire risk, but not sure. Such a lot to think about at each stage, but we are in a better plac than we were.

All best

Ellie

[dall05 in reply to elliemh]

Hi Ellie, it sounds as though your brother is progressing slowly as I did, Everything happens so slow that you feel as though your standing still. I remember that stage even after 3 months, of bed to zimmer frame turn and sit on chair whilst puffing like a freight train. I could then last between 1 and 3 hours sitting before getting completely exhausted and then had to call a nurse to watch me get up to the zimmer then turn and collapse on the bed for a well earned rest.

The next step was with the help of a physio I would venture further & further from the bed with my zimmer and oxygen until one day I managed to make it to the toilet door only 6 or seven meters away so that was the last time I needed to call for a bed pan. That was a massive step forward. What surprised me was after that it was only a couple of days before the physio took the zimmer away and I found I could walk about 10 meters further without it. What I didn't realise was I was using a lot of effort gripping on to that zimmer so when I was standing up straight walking came so much easier but never the less I was still seriously out of breath after 10 to 15 meters.

The difference was I now felt confident I could slowly build on this and manage when I returned home finally after 4 long and very traumatic months.

Transplant assessment details to follow

[dall05 in reply to elliemh]

Getting on the transplant list is done in Two stages.

Stage 1.

The transplant team have to test to see if they think you are fit enough to withstand the operation and ill enough to need it.

Stage 1 is done in 1 day as an out patient.

They do a six minute walk test, I managed 408 meters without oxygen, my oxygen sats dropped to high 60s.

they carried out a full spirometry test or lung function test.

a chest x ray

lots of bloods are taken,

you have a chat with the transplant consultant who tells you the risks of transplant and he doesn't try to gloss it up either.

If you get through stage 1 then its stage 2

Stage 2, is a 4 day stay at the transplant hospital with a lot more tests and many different scans, etc.

I hope this is of some help ellie, I can give you more details when you need them.

Tell your brother he's doing good and things will get better for him but it will be have to be patient and keep working hard. They won't let him go home until they know he has everything set up, there is a lot of help available so he'll be ok.

Tony xx

[elliemh in reply to dall05]

Thanks Tony, that's really helpful. It sounds very familiar. It is so much about confidence, and my bro's breathing is definitely better when he's more relaxed. He is doing so well, and has made it to the loo with zimmer.

Let's see what he next week brings.

Thanks again, Ellie

[dall05 in reply to elliemh]

Great news Ellie, hopefully like me he will breath easier when he ditches the zimmer and be able to walk further. Sounds like he's doing very well .

Tony x

[Suzy6]

Hello Ellie, I haven't answered before, but read all the posts. I'm not too good at putting words and feelings on paper, as all who have posted are, but would like to say you all sound a very supportive family and I'm sure that helps your brother enormously. Keep strong for him. I wish you all the best and I will keep you in my thoughts and prayers.

[elliemh in reply to Suzy6]

Thanks Suzy, I appreciate your reply. I like your photo, very cute cat!

All best wishes to you too

Ellie

[newlands]

Hi what a wonderful sister you are ,i will agree with all the posts that you have already read I struggle to breathe and walk across the room but the difference is i am 72, it is so sad when a young person is suffering it is so unfair but with all the love around him a few weeeks can make a big change in someones health.

Do keep us updated ,you will be in my thoughts take care

Dorothyxx

[elliemh in reply to newlands]

Thanks Dorothy for your kind and encouraging words. I hope he can continue to improve and eventually get home. Then we can work on how he's going to live this new life, whatever it may be.

All best

Ellie

[emmo]

I feel humbled at your post ellie, you are all so positive in the face of terrible adversity, I shall really hope and pray your brother continues to improve however slowly and that you can all stay strong for each other.

[elliemh in reply to emmo]

Thanks emmo, I am looking forward to seeing him tomorrow.

[helingmic]

Hello Ellie and welcome. I think ou have been so brave so far. Being ill and so vulnerable, like your brother is very hard. I am glad your brother is a born fighter. To me, it's that spirit which will save him. Of course, in hospital he may be subjected to other infections, that's the trouble. In spite of this, he is in good hand. If only he can get over this hard patch, I'm sure he will be able to make it. With your support, he will. Thank you so much for sharing this here. You have a lot of courage. Keep it up, because you have already done such a great deal for your brother. I hope your brother will improve soon. thinking of you and your family and big bro' too! Love to you , Mic

[elliemh in reply to helingmic]

Thanks Mic, that's very kind of you. I do hope you're right, and all the love and encouragement helps his through this.

Thanks again for your reply

Ellie